Arthur’s done this all before. Hundreds of people around the world asked Arthur their questions about prostate cancer from 1994 to 1997 on the original Prostate Cancer InfoLink.
Please understand that Arthur is not a physician. He is only a reasonably well educated layman with some experience of prostate cancer and its problems. He cannot provide you with medical advice. You should always talk to your doctor about your clinical condition and how it should be managed.
You may post your question for Arthur using the comments/reply box below. Questions and answers are retained on this page for approximately 60-90 days from the time they are originally posted.
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Arthur — You may recall me from August 2010 and briefly thereafter. I finally had a biopsy January 19, 2011. I have a Gleason score of 8 and am scheduled for a robot-assisted prostatectomy before the end of February. The PSA score (of which I was skeptical) may have saved my life. Even a doubter like me is convinced that now there is only one choice for me. Thanks for your comments. … I am optimistic that the future is bright for me … but would appreciate your thoughts/comments. … Urologist thinks it is a virtual certainty (95%) that cancer cells are only in my prostate. I am in excellent health and this is my first surgery ever. Comments? Future prospects?
*****
Arthur responded as follows:
Dear Carlton:
So Arthur would like to know some additional information, as follows:
– How many biopsy cores did your urologist take?
– How many of those cores were positive for cancer?
– Was your PSA still 5.1 the last time it was taken prior to the biopsy?
– What was your clinical stage (probably T1c, but please confirm)?
Arthur further wishes to make it very clear that the probability of a good outcome after surgery (robot assisted or otherwise) is very highly dependent on the skill and experience of the surgeon — so he hopes you have made sure you are seeing a very good one!
Thanks so much for your informative remarks. My husband and I will take all your comments under consideration and discuss this with his doctor. Just for clarification , my husband is on Lupron, Flutimide and Avodart. His PSA is undetectable at this time, so that is good. Thanks so much.
*****
Arthur responded as follows:
Dear Julie:
It seems highly likely to Arthur that if you husband could be switched from flutamide to bicalutamide (Casodex), this might help with any gastrointestinal problems. Flutamide therapy has long been associated with GI side effects. Bicalutimide has the added attraction of being a “once a day” drug.
16 cores I believe; 2 cores were positive for cancer and were “next” to each other or not diffuse in the prostate; PSA 5.5 — but was a different clinic/urologist;
clinical stage T1c …
I believe (have confidence) in my urologist and the surgeon … Malizia Clinic in Atlanta.
*****
Arthur responded as follows:
So Carlton, Arthur says that you can use the online Kattan pretreatment nomogram to estimate (with a significant degree of accuracy) your oncologic response to surgery, with the following probabilities:
– You have a 63% probability of organ-confined disease.
– You have a 33% probability of extracapsular extension
– You have a 9% probability of seminal vesicle invasion
– You have a 4% probability of positive lymph nodes
– You have a 93% probability of progression-free survival at 5 years
– You have a 90% probability of progression-free survival at 10 years
Given the high probability that you will be hanging out with us for at least a decade to come, Arthur suggests that you also have a serious conversation with your doctor about penile rehabilitation post-surgery and what you need to do to optimize the chances of recovery of a satisfactory sex life in addition to the life itself! If Arthur was you, he would also be asking the surgeon if he was going to perform a lymph node dissection as a part of your surgery to make sure that the lymph nodes were negative. Your seminal vesicles will be removed at the same time as the rest of your prostate.
Arthur. I had a prostatectomy 5 years ago. For impotence, I was advised to take meds to increase blood flow to the penis. Then I tried injections and later a pump. Nothing worked and I now have a penile prosthesis — which works quite well. I don’t believe that I received very good advice on rehabilition of my penis for impotence. I am curious. Can you direct me to a source where I could read about the most current recommendations for treating erectile dysfunction?
*****
Arthur responded as follows:
Dear Bill:
Arthur says that the “high guru” of post-surgical management of sexual function is probably John P. Mulhall at Memorial Sloan-Kettering Cancer Center. He has published a book for patients called Saving Your Sex Life: A Guide for Men with Prostate Cancer that you can find on Amazon.com and elsewhere. He also has a link on the Memorial Sloan-Kettering web site where you can find various free video materials and other information.
Hi Arthur,
Last wrote on Nov. 16, worried about waiting an extra month before surgery. It all worked out as you foretold. Robot-assisted procedure on 1/27 with negative margins all round. Having first post-op visit with doc in a week. What are good questions to ask at that time? I am 62.
Excerpt of pathology report: Prostate and bilateral seminal vesicles, radical prostatectomy:
– Prostatic adenocarcinoma, Gleason score 7 (3 + 4), involving both lobes of the prostate gland.
– Focal extraprostatic extension by adenocarcinoma identified.
– Margins of surgical resection negative for tumor.
*****
Arthur responded as follows:
Dear Albert:
Arthur says that it looks as though the surgeon was able to “get everything” (especially if there was no sign of cancer in the seminal vesicles and you had pathologic T2c disease). He also says that there are always hundreds of possible questions a patient could ask under such circumstances, but here are the ones that stick out for Arthur:
– Were you able to spare the nerves on both sides of the prostate?
– How sure are you that you “got everything?”
– What do I need to do now to optimize recovery of continence?
– What do I need to start doing now to optimize recovery of sexual function?
– Do you recommend any changes to my diet/exercise regimen to optimize overall recovery and health?
– Is there anything else that I can do to optimize the recovery process?
– Will you be monitoring my PSA with a standard PSA test or an ultrasensitive one (and why)?
Hi Art. I’ve seen a surgeon and also saw a radiation oncologist; I’m now trying to decide which way to go. I’m a 74-year-old male; PSA 6.6; Gleason of 7. I would like to get some input from others who have gone through this. I’m looking at IMRT or Da Vinci surgery.
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Arthur responded as follows:
Dear Robert:
Arthur suggests that you join the social network associated with this site. There are many men who have used that site to talk with other patients and learn from the experiences of those who have preceded them.
Arthur would also suggest that brachytherapy might be a method of treatment that would be appropriate for you too.
We now know that varicocele causes prostate cancer. Why is this info not being addressed?
Varicocele repair is easy and can be done multiple times.
*****
Arthur responded as follows:
Dear Mr. McCullough:
Arthur respectfully suggests that you are overstating your case.
Arthur believes that what we “know,” at this point in time, is that an Israeli research team — a little over a year ago — put forward an hypothesis that varicocele might be the cause of many cases of prostate cancer as a consequence of heightened levels of testosterone flooding into the prostate directly from the testes. While Arthur, like others, considers this to be a very interesting hypothesis, it is clear that the work of Gat et al. needs to be either replicated by the original authors in a much larger series of patients or (and better) replicated in a large series of patients by another research team.
Arthur says that just because there has been no other paper published to date, it does not mean that such work is not, in fact being done. On the other hand, since Gat’s hypothesis represents a radically different explanation for the relatively high incidence of prostate cancer, it is also not difficult to appreciate that many in the urology community would have a hard time accepting this idea. It took Galileo many years to persuade his peers that Copernicus was correct and that the Earth and the other planets did, in fact, revolve around the Sun (as opposed to the other celestial bodies revolving around the Earth).
Hi Arthur,
I had a recently had a physical at 55 years of age. All my blood tests were fine except my PSA. It had gone from 2.62 in 2008 to 4.43 in 2010 — exactly 2 years to the day.
I saw my urologist and he did a DRE and said everything felt normal. He suggested I have a biopsy (16 cores). I received the results on November 22. He said all the samples were clear of cancer, but he mentioned there was one which was ASAP and that he would like to repeat the test. He suggested a retest of my PSA in 1 year. I suggested 6 months. He was adamant about the 1 year wait.
I retested in early January with another 16-core biopsy and unlike the first test there were no ASAP cells. All cores were normal. My question is … what would you recommend I do now? I have quite a bit of fear from what I’ve read regarding ASAP. I have not had a PSA test since Oct 2010. How long should I wait to retest? Should I get a second opinion on the first biopsy test?
Regarding symptoms; I’ve noticed when I urinate I have some excess urine left and have to manually help remove by massaging my penis below and upward by hand. I told my doctor about this, but he expressed little concern. I have also had trouble with firm erections the last two years. I failed to tell my Doctor about the latter. Could these problems have anything to do with my prostate and the elevated PSA? I am considering going to another doctor for a second opinion. Hate to say I am confused and worried.
Thank you
*****
Arthur responded as follows:
Dear Frank:
Arthur says that first and foremost you need to differentiate between your actual clinical data and your fear about the possible implications of those data. They are very different issues.
Arthur’s understanding of the appropriate actions following a finding of ASAP on prostate biopsy is that a re-biopsy should be carried out. If Arthur is understanding your statements above correctly, this has been done (in January), and there was no ASAP or cancer on re-biopsy. It is not clear to Arthur whether the second biopsy was done by your original physician, but he assumes so.
So … you have had two biopsies. The first showed ASAP in ojne biopsy core (which can be indicative of risk for cancer). The second did not. You also have some very normal signs of changes in your urogenital function (slight retention of urine and a decrease in your ability to have the erections of a 16-year-old). This happens once one starts to get over 50. Sorry!
What to do. Arthur tends to agree with your urologist that you really do not need another PSA (or another biopsy) for a year. If you have had two 12-core biopsies within 3 months, and neither showed cancer and only the first showed ASAP, then your risk of any cancer in the next 12 months is minimal. Getting a second opinion is not going to change that. And if you go to get another opinion, then that urologist will want to biopsy you yet again, and too many biopsies can also profoundly affect your erectile function.
With respect to your symptoms … You should mention your retention of urine to your urologist. It is probably just mild benign prostatic hyperplasia (age-related growth of the prostate affecting your ability to empty your bladder). If it is not a real problem, it’s probably not worth treating. If it gets worse, then tell your doctor. This condition is eminently treatable. As regards you ability to get firm erections, Arthur says that one’s between you and Mrs. Frank. If it is bothering you both, then talk to your doctor about a prescription for Viagra or a similar drug such as Cialis. Arthur is not aware of any data that suggests any connection between your problems with your urinary tract, your erectile function, and your risk for prostate cancer.
Aloha Arthur.
Just wanted to pass along to you that things are getting much better after 48 hours of 1.3 atm hyperbaric oxygen treatment (HBOT) using the home chamber.
My HMO denied this treatment even though the urologist wrote a prescription and recommended it. My wife and I decided it was worth the risk/investment.
I still have the suprapubic catheter. After constant bleeding and blood clots, for the past week, urine from the bladder has been clear and the skinny (red worm) blood clots have been very few and very short. There are still small amounts of blood clots that pass from the urethra.
I’m on minimal pain management and have actually been able to stop the pain meds a couple of times since starting the HBOT.
Just wanted to pass along the good news! Thanks for your advice and words of support.
Joe
Arthur responded as follows:
Joe: Arthur says he is pleased to hear that you appear to be getting some relief from the HBOT. It sounds like you made a good risk/investment decision (at least for you personally).
Good day again Arthur.
After orchietomy some 4 years ago, on December 15, 2010 my PSA was 9.45.
I was on Casodex for 2 months; stopped Casodex 60 days ago hoping PSA would decrease. Today my PSA is 46.
Any new options?
Thanking you
Max
*****
Arthur responded as follows:
Dear Max:
Arthur says that you have a limited number of options because you live in Canada. However, there is variety within those limits.
Your first option is to talk to your medical oncologist about ketoconazole therapy, which is an older form of “third-line” hormone therapy, but it does work well for some men. (If you haven’t seen a medical oncologist yet, it is definitely time for you to do this, and you are looking for one who specializes in the treatment of prostate cancer.)
Your second option is docetaxel-based chemotherapy. Again, for a small percentage of patients, this can be highly effective … but it is only really effective in a small number of men with CRPC.
Your third — and perhaps your best — option is to participate in a clinical trial of one of the new agents such as MDV3100, TAK-700 (orteronel), or others. The exact trial(s) that you might be eligible to participate in would depend on your precise disease status (e.g., whether you have visible metastasis on a bone scan and whether you have any physical symptoms of pain). Such trials are available in Canada at some of the major cancer centers in places like Toronto, Vancouver, etc., so exactly where you live may affect your access to certain trials.
There are several different drugs in development that hold potential for the management of patients with progressive disease after traditional hormone therapies have failed. However, none of these drugs have been approved for clinical use yet (in Canada or America), with the single exception of the immunotherapeutic agen sipuleucel-T, but this immunotherapeutic therapy is only available in the USA at the present time. Arthur suggests that if it is at all possible you try to have a consult with a specialist medical oncologist at a major cancer center where it may be possible for you to enroll in some sort of clinical trial. Chemotherapy is always available later.
Hi could you give me some info on tomotherapy, any other members used this, any side effects? Any info would help. Thanks, Rob.
*****
Arthur responded as follows:
Dear Rob:
Arthur says that TomoTherapy is really just a relatively new, specific type of image-guided and intensity-modulated external beam radiation therapy. From that point of view, it is just one way to try to target photons accurately to the prostate, thus allowing the radiation oncologist to give the highest possible, “safe” dose of radiation while minimizing the risk of unwanted side effects.
However, we have no long-term data comparing outcomes using TomoTherapy to outcomes using any other types of external beam radiation therapy, so it is quite impossible to say whether TomoTherapy is “better” or “safer” than any other modern method for delivering external beam radiation.
All Arthur can tell you — and probably all anyone else can tell you — is that all modern forms of high-dose external beam radiation therapies come with a small level of risk for radiation proctitis (discomfort and sometimes bleeding of the colon), a significant longer-term risk for erectile dysfunction in men who have full erectile function prior to treatment, and some other much less common side effects. Arthur is not aware that TomoTherapy is associated with any major reductions in risk for side effects or any major likelihood for improvement of outcomes compared to any other type of modern, well-targeted form of external beam radiation therapy. The election to be treatment with TomoTherapy as opposed to any other good form of radiation therapy is rather like deciding which car you want to buy. They are all different, but the basic question is does it get me from A to B on a daily basis and how much am I willing to pay for what I perceive to be “add on benefits.”
Arthur,
Five years ago I had cryo for prostate cancer. My PSA at the time was 7 with a Gleason score of 6. After the cryo my PSA was 1.8.
In January of 2010 my PSA went up to 3.4, so my doctor suggested another PSA in 3 months. So 3 months later my PSA had doubled. So my family doctor sent me to a urologist. The urologist suggested Lupron. Which I took. After the Lupron my doctor suggested I look into receiving proton therapy at Loma Linda Hospital. So I contacted them and spent 10 weeks there receiving proton therapy.
My first PSA after proton beam therapy was 2.3; 3 months later my PSA was 3.8. Now my doctor is telling me to wait another 3 months for a PSA … Don’t you think I should go back on the hormone therapy right away? I’m really confused.
*****
Arthur responded as follows:
Dear Paul:
Arthur says he can understand why you are puzzled ‘cos so is he (well, at least about some things).
Your PSA rose from 1.8 to 3.4 in January 2010 to 6.8 in April 2010. Yes? Then you had Lupron followed by PBRT at Loma Linda and by about October or so your PSA was 2.3 ng/ml and since then it has risen to 3.8. Correct?
So the thing that is puzzling Arthur is why anyone suggested you have PBRT at Loma Linda (or anywhere else for that matter). Did anyone give you a biopsy to confirm exactly where the cancer was recurring before you were sent to Loma Linda? If no one knew for certain (based on a biopsy) that the cancer had recurred in what was left of your prostate after cryotherapy, Arthur doesn’t understand why anyone would have suggested or given you PBRT, which is a highly targeted type of radiation therapy usually used to treat only the prostate and not the surrounding tissues.
Arthur’s concern would be that you have had a recurrence that is not in the prostate at all, but is occurring outside where the prostate was originally. If that is the case, then the PBRT may have had no effect on that recurrence, and the only reason your PSA went back down would be because of the Lupron, which Arthur assumes you took for about 6 to 9 months in total. Yes?
So … Don’t panic. You still have a low PSA. However, Arthur suggests that you ask your urologist if you can have the next PSA test after just 2 months rather than 3. Tell him you are very nervous about the rising PSA and you want to establish a PSA doubling time as soon as possible. It is possible that your PSA will stabilize somewhere between 4 and 5 ng/ml. This can happen to men like you after radiation therapy. And this is why you don’t want to jump right back on the hormone therapy yet. We need to know whether your PSA is just bouncing back up after the radiation and the stoppage of the hormone therapy and it is going to stabilize. It may take a couple more PSA tests before we know this, which is why some patience is needed. On the other hand, if your next PSA is (say) 5.7 ng/ml or higher, then I think you need to look at the doctor and say, “Now what do we do?”
Arthur: A follow-up to my last question. …
History again:
– PSA from April 2006 to April 2010 bounced around from 5.2 to 3.6, up and down.
– The first PSA test in 2006 showed a free percentage of 14%.
– I had three negative biopsies totaling 49 cores. They were done in 2006, 2007, and 2008. HG-PIN found in 2007 biopsy.
– PCA3 in 2008, 7.9
– PCA3 in 2009, 7.0
– PCA3 in late 2010, 33
– November 2010: PSA, 5; free percentage, 14%
– March 2011: PSA, 6.5; free percentage, 14%
To me that is a big jump in the PSA and the PCA3.
– MRI done in 2007 shows prostate size 33 cc
– MRI done in November 2010 show prostate size 46 cc
Report by doctor states, “No change in MRI’s.”
I’m very concerned over the jump in the recent numbers. Can the situation change that quickly? How concerned would you be and what would be your course of action.
—–
Arthur responded as follows:
Dear Jim:
Arthur says that he has some sympathy with your reaction but he honestly doesn’t think there is anything to get overly concerned about yet.
First, a prostate volume of 46 cc is still well within the normal range, but the enlargement of your prostate from 33 to 46 cc is a 50% increase and could easily account for the rise in your PSA level. Second, the normal “cut-off” value for a PCA3 test to potentially indicate prostate cancer is 35, so you are still under that level.
Arthur thinks you need to take a deep breathe and do three things: (a) Ask your doctor what he thinks. (After all, he has actually examined you, and Arthur most certainly hasn’t!) (b) Talk to your doctor about having another PSA test in 3 months and agree with him that if it has risen signifciantly again then maybe another biopsy actually will be needed. (c) Ask your doctor whether he thinks that treatment with a 5-alpha-reductase inhibitor like durasteride might be a good idea. (It would have the potential to lower your PSA level, thereby making the PSA test more sensitive, and also reduce any swelling of your prostate.)
The bottom line here is that you still have no definitive indicators for prostate cancer, but you do have at least two signals of a very normal enlargement of your prostate in your mid 50s (the rising PSA and the actual prostate volume).
Thank you. Last November, when the PCA3 test came back, my doctor wanted to do another biopsy. I asked him if we could wait 3 months and he said OK. With this result, I’ll assume he’ll want to do another biopsy.
It’s disconcerting to me because on October 4, 2010 I got a free PSA test at work done by the same laboratory I always go to, and the test came back at 3.6. In November 2010 my doctor insisted on a test with the free % so I took that and it came back at 5, with a free/total ratio at 14%. That prompted the request for a biopsy. The DRE was normal. Now 3 months later it’s at 6.5 ng/ml. Can it rise so fast without something being wrong?
So in essence my PSA almost doubled in 5 months. That has me concerned.
Trying to think positively the MRI suggested hyperplasia. I do know recently there are times I have to go to the bathroom every 1/2 hour and then there are times I can go 4 hours without going.
Arthur responded as follows:
Jim:
Arthur says you clearly do have something “wrong.” You appear to have significant benign prostatic hyperplasia, which could easily account for this rise in your PSA.
Your urologist is trying to make absolutely sure that prostate cancer is not a factor too. There is, however, risk associated with that, which is that he will find some cancer … that is actually indolent. If he does, you will want to be treated for it. Then you are on the slippery slope to over-treatment. It is for this reason that Arthur suggests the conversation about 5-ARI therapy before any more biopsies, but that’s between you and your doctor.
Had series of 40 radiation treatments in 2004 followed by Zoladex every 3 months since. Failed to tolorate Casodex, ketoconazole, and flutamide. PSA rose from 29 to 60 in 2 months (last test on Mar. 05, 2011).
I am asymptomatic, 78 years of age, and have no other health issues.
Supposed to consider TAXOTERE in May: 2.4 months median survival rate. 2.4 mos. added to how long? That is the question. Is it worth the side effects? Your opinion?
—–
Arthur responded as follows:
Dear Mr. Kiernan:
Arthur says that in the original clinical trial of Taxotere, the men who took Taxotere + predisone had a median survival of 18.9 months and the men who tool mitoxantrone + prednisone lived for 16.5 months (a 2.4-month difference in median survival). However, those men all had evident prostate cancer metastasis and therefore more advanced disease than you. Taxotere is certainly an option for you, and Arthur would expect you to have at least another 18 months to live and maybe significantly more.
Arthur says that there are, however, other options.
The first is Provenge (sipuleucel-T).
The second is that there are many drugs now in clinical trials that look more promising that Taxotere. One of these is a drug called MDV1300, and you might well be eligible for the PREVAIL trial of this drug in men like you who have early-stage castration-resistant prostate cancer. Her is a link to more information:http://clinical trials.gov/ct2/show/NCT01212991. If Arthur was wearing your shoes, he would get himself an appointment to go see a medical oncologist at a cancer center that was significantly involved in trials like this. The Taxotere chemotherapy will still be there later if you need it, but some of the new drugs being tested are likely to do better than Taxotere.
Having said that, there is a “down side” to participating in such trials … You may not get the active drug. And if that turns out to be the case, you could try a trial of another drugs (e.g., orteronel, see http://clinicaltrials.gov/ct2/show/NCT01193244) or you can have the Taxotere chemotherapy.
So … Find a really good med/onc and ask about Provenge and about clinical trials before you decide on the Taxotere chemotherapy. Arthur thinks you could be around for another 5-6 years yet if you got reasonably lucky.
Any knowledge of cabozantinib (XL184) by Exelixis?
Arthur responded:
Arthur says that he is under the impression that the only two trials of XL184 currently recruiting patients are not including patients with prostate cancer at the present time (see http://clinicaltrials.gov/ct2/results?term=XL184).
He expects further trials of XL184 in prostate cancer, but he is not aware of any detailed information at the present time.
You can click here for a comparatively recent update on XL184 in prostate cancer.
My husband had a prostate biopsy and then was ordered a bone scan more than a month after the biopsy. I don’t understand why he has to wait so long for the scan. He said the doctor said something about waiting for the effects of the biopsy to dissipate but what does that have to do with bones? Please illuminate me.
Thanks,
Laura
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Arthur responded as follows:
Dear Laura:
Arthur says that the idea that your husband should wait a month before getting a bone scan based on the need to recover from his biopsy makes no sense to Arthur whatsoever. However, Arthur also has no other relevant information (about your husband’s diagnosis) to help him understand the situation. Is it possible that there is a good reason for this? Maybe.
Having said that, the vast majority of bone scans ordered for newly diagnosed prostate cancer patients are of very limited value. Unless your husband’s PSA level is more 20 ng/ml, Arthur says that the probability that your husband has a positive bone scan is near to zero. Is it possible that the doctor’s comment about waiting for the effects of the biopsy to dissipate were in relation to treatment as opposed to the bone scan? That would make a lot more sense. Newly diagnosed prostate cancer patients are commonly in a state of shock after they first learn about their diagnosis. They don’t hear everything that is being said to them because they are having a problem processing the new information. Arthur always encourages newly diagnosed men to take their spouses or partners with them to their appointments because this is very much a time when two sets of ears are better then one.
Arthur also noted that you had left the same question for Arnon and for Amy, but he is answering on behalf of Amy too. We doubt that Arnon will be able to add much to what Arthur has noted above, but he will get back to you as soon as he can.
Can anyone recommend a urologist in New Jersey for a general check-up?
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Arthur responded as follows:
Dear Ron:
Arthur says that we can not make specific recommendations on this web site to individual urologists. However, if you join the associated social network, members of that site may be willing to make a recommendation. Your best bet, however, is to ask your family physician for a referral to someone he or she knows and respects.
Thank you Arthur. Our med/onc says Provenge is the perfect treatment for him right now, but the $93,000 pricetag, of which Medicare will cover 80%, still leaves us with a payment we can’t afford at 78 years old. We rely on the VA for treatment and couldn’t be more pleased, but they don’t cover Provenge, not at $93,000.
Arthur responded as follows:
Beverly:
Arthur says that, sadly, we are all starting to be faced with these types of decisions as the capabilities of technology start to exceed our ability to actually take advantage of those capabilities. He hopes that after a chat with your medical oncologist, one of the other possible options previously discussed will be feasible.
My husband is only 37 years old he recently was unable to urinate for approx. 2 days and when he finally did there was blood in his urine. I made him go to the doctor and asked her to have a PSA done on him again because we have gone thru this before. Last time it was a 9 or 14; this time his PSA was 18.9, and I explained to the doctor that I am very concerned and want him referred to a urologist. but not to the one before. Because of my husband’s age, no one seems to take this situation seriously. What can we do, and what causes this? How can we make this go away with diet and excersise? I am afraid. Please help.
I may have been born yesterday but I was in town last nite, so consequently I am going to get to the bottom of this and make it well known to whatever specialist, doctor, whoever that this time they had better get on with things and take care of this. There will be some consequences legally if this is not done right this time. And because of inaction on their part, they better hope that there is not a negative outcome in regards to my husband. But we also feel that we need to be educated in every way possible … by someone who has been there and been thru it. Thank you in advance for all and any help or assistance you can give. It will be so greatly appreciated. Forgive me my rant as this is born out of fear. I am so scared.
From a wife who loves her husband and best friend.
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Arthur responded as follows:
Dear Pamela:
Arthur says that there are several possible reasons for your husband’s condition, and — while prostate cancer is a possibility — at least one of the other possible reasons is probably more likely, and that is that he has some form of chronic infection that flares up and leads to the difficulty with urination. However, you were absolutely right to ask about having a PSA test done.
Now, Arthur also thinks that the single most important thing you need to do is to get referred to a really good urologist who will listen to you both and then try to work out exactly what your husband’s problem is. This may need to involve several different types of blood and urine tests over time, including things like a series of PSA tests (including a %free PSA test), a cystoscopic examination (so that the doctor can see is there is a visible reason for the blockage), and perhaps a PCA3 test. There is also a chance that your husband will need to have a prostate biopsy.
Pamela, it will be very important for this doctor to know exactly what happened both this time and the last time this occurred and how long ago the prior occurrence was. Did your husband get any treatment this time or the last time (like an antibiotic)? When he starts to urinate again after this happens, does his ability to do so return to normal? Write down everything you and your husband can remember about what happened so that you have clear notes to give to the urologist.
Arthur doesn’t think people are “not taking this seriously” because of your huisband’s age. Prostate cancer in young men is unusual but not unknown. However, problems with urination that occur and then get treated and go away are very common. In your husband’s case it is the recurrence of the problem that makes this more serious. In some ways it would be better if you went back to the urologist you saw before, because he knows your husband’s prior history and has notes on what he thinks the problem was the first time around. (This is helpful even if he was wrong.) However, if you just don’t feel comfortable with this physician, Arthur understands that this happens.
Last but not least … Arthur says that you really don’t want to start a relationship with a new physician by threatening him (or her) legally. If someone tried to start a relationship with you that way, you would probably want to avoid them. It’s just not a good idea. It is, on the other hand, a very good idea to explain how anxious you both are about the situation and that you would really like to get to the bottom of it so that you can prevent it from happening again. Doctors have to use their knowledge and experience to make a series of educated guesses about what a specific problem may be. Medicine is not a perfect science, and sometimes it is extremely difficult (even for the very best doctors) to be able to make the correct diagnosis. You need to be able to work closely and carefully with the doctors if you and John are to get to the bottom of this problem and resolve it.
My father has been diagnosed with bone cancer, we know that it’s at least in the pelvis, and threee places on the spine. He is waiting to have a bone scan to check elsewhere. He had prostate cancer 11 years ago. Back then he only did radiation for treatment. Do you have any information about bone cancer and how it related to his prostate cancer and what his prognosis might be? It makes us very nervous of the unknowns, but I haven’t heard good things related to bone cancer and especially if it has spread. We are just all very concerned and worried. He wants to get a second opinion. What do you think?
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Arthur responded as follows:
Dear Kim:
Arthur says he would make a very large bet that your father’s “bone cancer” is actually the re-occurrence of his original prostate cancer that has now spread (“metastasized”) to his pelvis and spine. This type of recurrence of prostate cancer is far from uncommon, and can happen many, many years after the type of initial treatment received by your Dad. The longest period before such recurrence that Arthur has ever heard of is actually 26 years.
The good news is that treatment for this type of metastatic prostate cancer can still be extremely effective and many such patients can have their cancer controlled by hormonal therapy (also known as androgen deprivation therapy) for many years. The other good piece of news is that we now have effective therapies that work after standard hormonal therapy.
Arthur thinks that your doctor is probably going to want to treat your Dad with a short course of a drug (pills) called an antiandrogen — probably bicalutamide (aka Casodex) followed by regular injections of a drug called an LHRH agonist (e.g., Lupron or Zoladex or Trelstar). These drugs act to suppress testosterone in the body, which suppresses the growth of prostate and prostate cancer cells. Most men treated in this way will have their PSA go down to near zero, and their serum testosterone levels down to less than 20 ng/dl. The most common side effects are hot flashes and some loss of energy. It is also possible that the areas of cancer in your Dad’s pelvis and spin would shrink or even vanish — at least for some time.
Arthur says that it never hurts to get a second opinion. In your Dad’s case, this would be best given by a medical oncologist (not a urologist or a radiation oncologist) who truly specializes in prostate cancer. Many of the major cancer centers now have such specialists on staff. However, Arthur does think that your current doctor seems to be doing the right things so far (from what you have told him), so don’t get the idea that he isn’t qualified to deal with your Dad’s problem. He may well have everything under control.
You do need to know that hormone therapy for advanced forms of prostate cancer is not curative, but if he responds well to hormone therapy, your Dad could easily continue in good health for several years yet before he needed more aggressive forms of treatment.
Thanks so much for answering my question. I really appreciate it. During this trying time any information helps. I forwarded the info. to my dad and sister and we will go from there.
Best regards,
Kim
How successful could HIFU or cryosurgery now be, as salvage, for someone who has had EBRT and ADT treatment and is just now showing a PSA of 0.3, as against 1.0, up to 11 months after all treatment was completed. The cancer was defined as T3b Stage 3, Gleason 4 + 4 = 8, PSA 6.7, and was deemed to be at the time, unsuitable for prostatectomy due to the severity of the incidence, about 3.5 years ago. As well, if I were to seek to be put on ADT again (which I know is purely palliative) what would be your thoughts on that. I am a fit 67-year-old with an unbelievable will to live for a long time yet! I live in Ireland and attend the Mater Private Hospital in Dublin. Is there anything I have missed or anything else I should be considering? I am not due to see my consultant until September although I have kept him informed over the last 6 months, since my last appointment.
Mike
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Arthur has responded as follows:
Dear Mike:
Arthur says that at the time you were originally diagnosed, you clearly had at least high-risk, locally advanced prostate cancer. While the treatment you were given (EBRT + ADT) was certainly appropriate, there was always a significant possibility that the cancer had already extended beyond the seminal vesicles and into your regional lymph nodes or elsewhere at the time of treatment. Arthur assumes you were told this at the time of your initial treatment.
What is not clear to Arthur from your question is whether your PSA is currently stable at 0.3 ng/ml, having fallen from a value of 1.0 ng/ml at the completion of your treatment, or whether your PSA fell to a nadir (“minimum”) value of less that 0.3 ng/ml at some time after treatment and is now rising again.
Thus, in Arthur’s view, there are four current possibilities:
(1) You have a stable or possibly still falling PSA of 0.3 ng/ml – in which case you should be doing nothing until the PSA reaches a nadir level and you can see whether it is stable at that minimum level. If that happened, you may never need any further treatment.
(2) You did have cancer confined to the prostate and the seminal vesicles but initial therapy did not, in fact, eliminate all of the cancer, and you have “locally recurrent” disease either in your prostate or in your seminal vesicles.
(3) The cancer had already escaped beyond the seminal vesicles at the time of your initial treatment and you have micrometastatic prostate cancer that is unlikely to be visible yet on a bone scan or a CT scan or an MRI.
(4) You could also have a combination of (2) and (3) above simultaneously (i.e., locally recurrent and micrometastatic disease).
If possibility (2) is the case, then salvage HIFU may be an appropriate form of therapy. Whether it actually is appropriate would require the opinion of someone with significant experience of the use of salvage HIFU, and Arthur does not feel sufficiently knowledgeable to comment further on this. Arthur suspects it is unlikely that salvage cryotherapy is a good option because freezing of the seminal vesicles comes with significant risks for additional complications.
In the case of possibilities (3) and (4), where one is dealing with very early stage disseminated disease, Arthur says the critical issues would be: (a) what your PSA doubling time is as your PSA rises; (b) how well you were to respond to further hormone therapy; (c) whether intermittent hormone therapy could be used effectively in your case; and (d) whether there were other clinical trials available of new drug combinations that might allow more aggressive forms of treatment while your disease is still in the early stages of metastasis.
In Arthur’s humble opinion, you should be asking your consultant if you can get PSA tests at least every 3 months for the next few months so that you can clearly establish whether your PSA is still falling, or stable, or rising, and what your PSA doubling time is if it is in fact rising. In the meantime, Arthur thinks you also need to have a serious conversation with your consultant about which of the four situations described above is – in his opinion — most likely to be the actual case.
Arthur,
Thanks for your early reply. I made a mistake in setting out my PSA for you, i.e. my PSA went down from 6.7 prior to treatment to 0.1, not 1.0 I suspect this would be a major factor in the reply you would have sent if I had informed you correctly.
Does seminal vesicle involvement point to a really strong possibility that it has metastasised? I have never had a lymph node test despite the fact that I have brought it up with the oncologist a few times. Would there be anything to be gained in having a second opinion from a medical oncologist as against the man I am currently dealing with, particularly as he stated in August 2010 at our last meeting, that he didn’t wish to see me until next September 2011. My PSA at that stage was 0.1 and my last Prostap 3 injection was 11 months ago. I am getting my PSA done 3 monthly, since treatment commenced, and it had remained at 0.1 until last month when it increased to 0.3.
As aside which may be of interest is that in the last 8 weeks I am experiencing legs and feet being very hot internally, particularly at night, which is affecting my sleep quite badly. Is this a symptom of metastasis or something less ominous? Incidentally I am on Amiodarone 200 mg. daily for arrythmia for about 8 weeks also, although I have a feeling that the hot feet bit had started before I went on this drug. Many thanks for your very detailed and very welcome reply, just what I needed at this time,
Mike
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Arthur responded as follows:
Dear Mike:
Arthur says that first and foremost anyone initially diagnosed with clinical stage T3 and Gleason 8 prostate cancer is inevitably at significant risk for micrometastatic disease. Such patients have two high-risk factors. In your case the good news was that at least your original PSA was still < 20 ng/ml. Arthur can't tell you whether you have metastatic disease or not, but he can tell you that the risk existed from the time you got diagnosed.
And yes, you are correct, the change in the PSA data is important. Thank you. What this means is that your last three PSA tests have been 0.1, 0.1, and 0.3 ng/ml in November 2010, February 2011, and May 2011 respectively. Yes? And you have now effectively been "off" the hormone therapy for 8 months, since your last injection ran its course in July 2010.
So … the first question to be addressed is what your next PSA result will show. Arthur would suggest that you ask your local doctor to get another PSA test run in about a month's time. It is possible that your PSA will have dropped back down to 0.1 ng/ml again, in which case you just had a "blip" and you can "forget about it." (These things happen.) On the other hand, if your PSA is still at 0.3 or higher, you will want to look into "doing something."
Arthur has no idea why your legs and feet are feeling warm. There could be all sorts of reasons for this, and you should discuss that with your local doctor. However, the fact that you are being treated for arrythmia may be important if someone thinks you need to go back on to hormone therapy for the prostate cancer. Hormone therapy with a drug like Prostap 3 is not always the best thing for men who already have cardiovascular issues.
If your PSA is still elevated at 0.3 ng/ml or higher at the next test, Arthur also thinks you need to have a serious conversation with your consultant. He may not want to see you until September, but if Arthur was wearing your shoes under such circumstances, he would want to see someone! There is always the option of seeking a second opinion, and a medical oncologist is likely to be an appropriate next step … so long as it is a medical oncologist who is experienced in the management of prostate cancer.
The most important thing to do at this stage, however, is to arrange for that next PSA test some time between late June and late July so that you can find out whether you had “a blip,” whether the PSA has stabilized again, or whether the PSA is actually rising. Until you have those data, it is almost impossible to be able to make any sort of sensible decision about what might (or might not) need to be done next.
Dear Arthur,
Can’t thank you enough for your very astute and prompt reply. All my PSAs except the last were 0.1, so the recent one of 0.3 (taken in May) was the first to vary or show an increase since I got ADT and 37 episodes of EBRT. (Prostap 3 injections started 3 Dec 2007 and finished June 2007, and the course of EBRT started 21 April 2008.)
Best regards
Mike
Hi,
I have just started Lupron (hormone therapy) in which 2 years ago I had external beam radiation and seed implants.
I am looking for some additional medicine to take along with the Lupron. The idea is to help the body help itself.
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Arthur responded as follows:
Dear David:
If Arthur is understanding you correctly, you had external beam radiation combined with brachytherapy in 2009 for what was assumed to be localized prostate cancer. Now your PSA has started to rise again, and so you have started hormone therapy with leuprolide acetate (Lupron). Yes?
So Arthur would need a lot more detail about your original diagnosis and your treatment to date in order to give you the best possible guidance. However, there are some things that can be done in combination with hormone therapy that will “help the body to heal itself” to some extent. They include: (a) a well-balanced “heart healthy” diet that is relatively low in red meat and dairy products and much higher in fish, fruit, vegetables, etc., than the average American diet; (b) a regular exercise program that will help you to keep your weight down within the “normal” range for your height (i.e, a body mass index or BMI of 21 to 25); (c) enuring that things like your vitamin D levels are well within the “normal” range.
Arthur knows of only one actual medicine that has ever been shown to “help the body heal itself” in men with prostate cancer. That is a drug called sipuleucel-T or Provenge, and it is only approved for the treatment of men who have already started to fail therapy with drugs like Lupron.
Arthur says that there are, of course, dozens of nutraceuticals and health supplements that are touted as being “therapeutic” for men with prostate cancer, but there are almost no data at all to actually demonstrate that such products are effective, and some are very definitely dangerous. In his recent book Winning the Battle Against Prostate Cancer, Dr. Gerald Chodak devotes a whole chapter to the appropriate and inappropriate use of alternative and complementary therapies for men with prostate cancer. You might like to buy that book and review Dr. Chodak’s comments. It is not exactly expensive.
Hi Arthur:
I wrote you back in March. Here is that e mail. Below it are my new results.
History again:
– PSA from April 2006 to April 2010 bounced around from 5.2 to 3.6, up and down.
– The first PSA test in 2006 showed a free percentage of 14%.
– I had three negative biopsies totaling 49 cores. They were done in 2006, 2007, and 2008. HG-PIN found in 2007 biopsy.
– PCA3 in 2008, 7.9
– PCA3 in 2009, 7.0
– PCA3 in late 2010, 33
– November 2010: PSA, 5; free percentage, 14%
– March 2011: PSA, 6.5; free percentage, 14%
To me that is a big jump in the PSA and the PCA3.
– MRI done in 2007 shows prostate size 33 cc
– MRI done in November 2010 show prostate size 46 cc
Report by doctor states, “No change in MRI’s.”
Here are the new results:
May 2011-PSA 4.9 and Free percentage 18%. PCA3 – negative.
So my numbers are back to where they were originally.
I think this shows at a minimum nothing has changed for me over the past 5 years in terms of the numbers.
I feel like taking a break from taking a test every six months.
Do you think that would be an acceptable course of action?
*****
Arthur responded as follows:
Dear Jim:
So Arthur says that the last time you wrote to him, Arthur’s response included the following statement:
“Arthur thinks you need to take a deep breathe and do three things: (a) Ask your doctor what he thinks. (After all, he has actually examined you, and Arthur most certainly hasn’t!) (b) Talk to your doctor about having another PSA test in 3 months and agree with him that if it has risen significantly again then maybe another biopsy actually will be needed. (c) Ask your doctor whether he thinks that treatment with a 5-alpha-reductase inhibitor like durasteride might be a good idea. (It would have the potential to lower your PSA level, thereby making the PSA test more sensitive, and also reduce any swelling of your prostate.)”
Clearly you did item (b). However, you do not say what your urologist’s response to suggestions (a) and (c) were.
Based on item (b), it would seem reasonable to Arthur that you could reduce the frequency of PSA testing, but he has to tell you that in doing so there is some degree of risk. Your data do suggest that you are at higher than average risk for a diagnosis of prostate cancer at some point in time, and the important thing is to make sure that this risk is well managed. Arthur still thinks you need to talk to your urologist about hios views related to items (a) and (c) above. Having said that, Arthur thinks that an annual PSA test really ought to be sufficient to keep an eye on your PSA level — just to be on the safe side. You also need to remember that even if you are diagnosed at some point in time with low- or very low-risk prostate cancer, you do not necessarily have to do anything more than monitor this (through active surveillance). Think of this the same way as you might think about being told you had a high cholesterol level. You would want to manage your cholesterol level, but you wouldn’t necessarily need heart surgery.
Bottom line … Arthur thinks you still need to keep a regular eye on that PSA level, but maybe you and your urologist can agree on annual testing as opposed to every 3 months. However, Arthur still suspects that dutasteride therapy might help to manage both your risk for prostate cacner and the accuracy of that risk assessment through PSA testing in the future.
My doctor wanted to do a biopsy when my PSA came back at 5 in November. I told him I wanted wait and take one more test in 3 months. The next test came back at 6.5 and I balked again at doing my fourth biopsy in 5 years. I told him let’s take one more PSA test.
I did notice for a few months I had to go to the bathroom much more often during that time frame. Then that stopped and I took this last test which came out better than the first test I originally took 5 years ago. Once those symptoms stopped the test came back to my baseline.
He wanted me to try a 5-alpha-reductase inhibitor like dutasteride but I don’t want to try anything that isn’t proven.
I could take another biopsy like he’s suggested but in 5 years the numbers are the same so what is the downside of waiting?
All DREs have been normal.
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Arthur responded as follows:
Dear Jim:
Arthur says that, in the end, each man needs to be able to make his own decisions. He believes that there is clear and well documented evidence that the 5-alpha-reductase inhibitors can help to reduce risk for prostate cancer in selected patients, and he is not sure what you mean by “isn’t proven.” The reason that the FDA did not approve these products for this use was not because they didn’t reduce risk for prostate cancer, it was because of differences in opinion over a relatively uncommon safety issue.
However, Arthur certainly doesn’t think you should do anything you feel uncomfortable about. What you want to do is entirely your call at the end of the day. Arthur’s only point is that a man of your age with a PSA > 4.0 ng/ml is at higher risk for a diagnosis of prostate cancer over the next 10 to 15 years than a man with a PSA of < 2.0 ng/ml. Whether that cancer would be clinically significant if diagnosed is a second consideration that needs to be assessed as well.
I just received my first biopsy results — Negative. Brief history: age 59; PSA on 3/20/10, 3.8 ng/ml, no DRE done. Mar ’11 urinary problems, up at night, not voiding completely. Doctor did DRE, enlarged prostate, soft, no nodules noticed. PSA taken 6.2 ng/ml. Three ejaculations day prior to PSA being taken. Sent to urologist, DRE same results, possible prostitis. Two weeks of Cipro, 500 mg 2x/day. Retest PSA with %free PSA. PSA dropped to 5.4 ng/ml, %free at 15% (no ejaculation or stimulation for 1 week prior to test). Did bladder flow sonogram, enlarged prostate (40 cm in size? can’t remember what I was told). 6/10 biopsy, 16 cores taken all negative. Scheduled to meet with urologist in Oct ’11 after another PSA is taken 2 weeks before.
My questions are:
– Still having residual blood in ejaculations. Is it good to ejaculate every 2 or 3 days to clear up the residual blood in the prostate? It’s mostly brown in color.
– Besides changing diet and getting more exercise, would prostate massage be something I should look into, to promote health of the prostate? I’m not very sexually active nor have a strong libido, so I’m trying to exercise it more with 3 to 4 ejaculations a week. I know — “Don’t use it, lose it” — and that is what I’m trying to prevent — losing it.
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Arthur responded as follows:
Dear Glenn:
Arthur says that to him (and he is not an doctor) it sounds like you have a classic case of benign prostatic hyperplasia with the additional possibility of a mild case of prostatitis.
Any residual brown coloration in your ejaculate is just from the “old” blood in your prostate. It will clear up relatively quickly whether you ejaculate frequently or not. And it is not of any clinical significance.
With respect to the general health of your prostate, Arthur has no reason to believe that prostate massage is going to be of any significant relevance. A healthy diet and regular exercise are a good thing primarily because they are good for your cardiovascular system. Any benefits to your prostate are ancilliary to the effects on your cardiovascular health. With regard to your sexual function over time, this has more to do with your erectile function (also related to your cardiovascular system) than it does to your prostate, specifically. In other words, it is about blood flow to the penis and not the functioning of your prostate. You may well be able to ejaculate, but the real question given what you are asking is whether you can get a firm erection “on demand,” so to speak.
Thanks for the reply Arthur. Firm erection on demand? Hmm — not really. I can get a fairly firm erection with additional manual stimulation; it certainly is not as firm as in youth, but I never was a guy that had a “super woody”, you know hanging a towel off it type. Plus, my erection was never perpendicular to the body nor vertical in nature, it’s always curved downward. As a teenager I thought it was weird compared to other guys I saw erect, but now understand many men have erections that curve downward. Often now I may use a restrictive “cock ring” to maintain an erection (only for a short time, till ejaculation is experienced). Other times I can achieve ejaculation without being that firm at all. I am borderline diabetic being treated with acupuncture and watch my diet — last A1C 6.1 — higher than normal for me.
I have a question. I have a friend. He is single, only 37 years old, and diagnosed with prostate cancer (stage I). Is it possible that he can have a child if he wants to marry my friend?
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Arthur replied as follows:
Dear Mary:
Arthur says that yes, it will still be possible for your friend to have children … but … to do that he will need to bank sperm before he has surgery or other treatment for his prostate cancer. While he has a good chance of recovering his ability to have normal intercourse after his treatment, unfortunately he will not be able to make a woman pregnant that way, but if he banks sperm prior to his treatment the doctors will be able to use his sperm to inseminate his partner using a medical process known as “artificial insemination.”
What about nutrition? Is there a diet that might be helpful? My husband was just diagnosed today. He will have further testing next week. He was wondering about nutrition like certain foods. We have heard of pumpkin seeds, and something in tomatoes.
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Arthur responded as follows:
Dear Trudie:
Arthur says that he needs to be very clear with you that there is no specific diet and no specific type of food that has ever been proven to have a clear therapeutic effect on the management of prostate cancer.
By contrast, you also need to understand that a good, “heart healthy” diet that includes significant amounts of fruits, vegetables, and whole grains, and that cuts back on things like red meat and diary products (for example, something like the so-called “Mediterranean” diet) will help any patient who has been diagnosed with prostate cancer to improve his quality of life. The combination of a heart healthy diet, a regular exercise regimen, stopping smoking, and losing any excess weight will be good for any patient newly diagnosed with prostate cancer.
Over the years there have been all sorts of data that suggest that all sorts of foods and the products within those foods (e.g., lycopene in tomatoes) may be able to help to manage the progression of prostate cancer — but we have no proof of this from well-coordinated, randomized clinical trials. Various patients absolutely swear that certain types of food or supplement have helped them to manage their personal conditions, but that doesn’t mean that any one product or food will have the same effects for your husband.
The other thing that is important in all of this is the exact nature of your husband’s diagnosis, and his other personal health factors. Arthur would strongly suggest that you and/or your husband join our social network, where you would be able to learn from the experiences of the many other patients (and their wives and partners) who have been in this situation before you.
Dear Sitemaster:
My husband has been previously treated with docetaxel, carboplatin, Nizoral, Xeloda, and now with Jevtana. We would like to know if he can benefit from abiraterone. His PSA has been going down since 7 months ago with Jevtana and Xeloda. His PSA is now down to 700 from a high of 1,570 ng/ml in November 2010, but we are afraid it may go up again when Jevtana no longer works. His blood tests are OK, weight stable at 83 kilos but we are concerned about a CT scan and an MRI of his head that show diffuse prostate cancer metastasis. We do not know if these skull mestastases have been sitting there since 2.5 years ago when his prostate cancer returned after his prostatectomy (in 2003) because until recently he never had a CT scan and MRI of his head.
Otherwise he is a physically healthy person. His brain works excellently at 71 years of age, in spite of his chemo-brain. He now takes fish oil capsules to deal with muscle loss. I am well-informed about proper nutrition for advanced prostate cancer. He does physiotherapy exercises daily.
He has been on chemotherapy since October 2009 — 2.5 years by now. Should he get off chemotherapy now and try abiraterone when Jevtana no longer works for him?
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Arthur responded as follows:
Dear Soledad:
Arthur says that, obviously, you and your husband understand that he has a highly advanced form of prostate cancer. Our ability to treat such forms of cancer effectively is limited, and Arthur suspects that your husband has been doing very well if he is still generally in good physical and mental shape after more than 2 years on chemotherapy.
Arthur thinks it is unlikely that there have been evident metastases to the skull and brain for very long. This is usually something that happens only after long-term progression of metastatic disease, but Arthur is not aware of any form of treatment that will definitely affect such metastases in the long term.
Arthur also says it is hard to know if abiraterone might be able to affect your husband’s disease progression. He thinks that this is really a question you need to discuss with your medical oncologist, who obviously has worked hard with you to try to control the progression of your husband’s cancer. Arthur certainly believes that this is possible, but there are never any guarantees when it comes to specific individual patients. The key question would be when to try this if you are going to, and Arthur thinks it might be best to finish any current course of Jevtana-based treatment before switching to abiraterone. We know that abiraterone can work for a significant period of time in some men after treatment with docetaxel, but Arthur is not aware of any data (yet) on the activity of abniraterone in men who have had prior treatment with both docetaxel and cabazitaxel (Jevtana). On the other hand, there are data to show that abiraterone will still work in some men after they have had treatment with ketoconazole (Nizoral).
The bottom line is that Arthur thinks you need to tell your doctors that you are interested in being able to try abiraterone when the current course of Jevtana is completed, and to ask them whether they have any reason to belive that this might be a bad idea in your husband’s case. You could also ask them whether they know of appropriate clinical trials of other drugs (e.g., TAK-700, MDV3100, and others) that might be worth trying.
Arthur hopes that this information is helpful for you both.
Do you subscribe to the Phoenix definition of biochemical failure after radiation as nadir + 2?
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Arthur responded as follows:
Dear Paul:
Arthur says that that he is not exactly enthusiastic about either of the two “standard” definitions of biochemical failure used in the USA after first- or second-line treatment of prostate cancer with radiation therapy. There are all sorts of problems with the clinical application of both the Phoenix criteria and the earlier ASTRO criteria. However, …
The real problem is that no one has been able to come up with anything better! The surgical community (every so often) will try to use the argument that if radiation therapy was actually any good as a first-line therapy, then the PSA would drop to zero after radiation. But that is a silly argument because there is still tissue left in the prostate after radiation, and some of it almost certainly survives the radiation. If it is not prostate cancer tissue, then its continued existence as living tissue is fine … but it is going to produce some PSA.
The fact of the matter is that we need something much better than a PSA test to be able to assess the biochemical recurrence of prostate cancer after any form of treatment. A test that is specific to prostate cancer and not just to the presence of PSA. In the meantime, Arthur thinks we are stuck with the Phoenix criteria — whether we like it or not. They are, after all, generally considered to be an improvement over the ASTRO criteria.
Think about it, if we had a test that was specific to prostate cancer, then it would work regardless of therapy type (surgery, radiation, HIFU, cryotherapy, you name it).
Dear Arthur,
Thank you very much for your prompt response to my question regarding the Phoenix definition of biochemical failure. I was treated for prostate cancer 4.5 years ago with IMRT and 4 months of ADT for an intermediate risk cancer. Not counting the first PSA (which was less than 0.1 ng/ml) as I was still under the influence of ADT, my PSA has bounced from a nadir of 0.2 to 0.54 in the last 4 plus years. My radiation oncologist has not ordered testosterone tests along with my PSA. Do you not think that the testosterone level should be monitored as well?
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Arthur responded as follows:
Dear Paul:
Arthur says you could certainly ask your physician about getting assays of your serum T levels at the same time as he is getting the PSA tests done. However, Arthur is not at all clear what you are expecting the serum T levels to tell you or your doctors.
It would be reasonable to assume that — since the brief exposure to ADT back in 2007 or thereabouts — your serum T levels have fully recovered and are back in the normal range. Furthermore, over a period of 4 years, your PSA has little more than doubled, which is hardly likely to be a signal of an aggressive recurrence of prostate cancer. (Your current PSA doubling time is probably somewhere around 3 years based on the data you have provided.) Technically your cancer has met the definition of biochemical recurrence according to the Phoenix criteria. Clinically, however, Arthur can quite understand why your physicians would be recommending that you just continued to monitor your condition (although your age and other health issues would also be important in making these decisions).
The currently available options for further treatment really come down to just two at this time: (a) enrolling in a clinical trial of HIFU as salvage therapy (which would require a biopsy-proven local recurrence) and (b) hormone therapy of some type. In neither case is your current serum T level relevant to the decision to take any action. (The theoretical option of salvage surgery would hardly be appropriate in a case like yours because the potential risks almost certainly far outweigh the possible benefits.)
Arthur thinks that — unless you have symptoms suggesting the possibility of disease recurrence — your “best bet” is just to continue to monitor your PSA and also your PSA doubling time. If the PSA doubling time starts to fall down to below 12 months, then it would probably be time to think seriously about hormone therapy. You could ask your physicians about the possibility of enrolling in a trial of salvage HIFU and therefore whether a biopsy to identify the presence of any recurrent prostate cancer could be established. The clinical value of such therapy, however, is open to considerable question in a case like yours.
With a PSA level that is still this low 4.5 years after IMRT, Arthur would point out that this could simply be due to regrowth of a small amount of non-cancerous prostate tissue since the original radiation. In that case, no therapy would be either indicated or appropriate.
Dear Arthur,
Thank you for your response. I contacted Dr Tom Pickles of the British Columbia Cancer Center and he informed me that for radiation-treated patients they only use PSA values greater than 1 in calculating doubling time. I do not see why I have met the definition of biochemical recurrence using the Phoenix criteria.Would not the PSA have to be greater than 2.2 (nadir + 2) ng/ml.
Thank you.
Arthur responded:
Dear Paul:
First, Arthur apologizes, clearly he was having a “bad math” day yesterday. You are correct, you have not met the definition of biochemical recurrence based on the Phoenix criteria. (Arthur misplaced a decimal point in his head and added 0.2 to 0.2 instead of 0.2 to 2.0. You would indeed need your PSA to rise to 2.2 ng/ml before you met the Phoenix criteria.)
Second, Arthur says that different groups have different opinions about exactly how to apply PSA doubling time data. Arthur is sure that Dr. Pickles and his colleagues have good reasons for only considering PSA values > 1 ng/ml in evaluating PSA doubling times. Remember that there is a big difference between data and decisions about what to do based on those data. What Arthur thinks Dr. Pickles is actually telling you is that they “only use” PSA values > 1 ng/ml in calculating doubling times because they are not certain that doubling times in men with PSA values < 1 ng/ml are clinically significant in men treated with radiation (and therefore would not change their decisions about what to do with a patient with a PSA value < 1 ng/ml). That doesn't mean that keeping an eye on your PSA doubling time is irrelevant to you as an individual. However, Arthur would tend to agree with Dr. Pickles that actually "doing" anything until your PSA was significantly greater than 1 ng/ml was probably not the best idea anyway.
Dear Arthur,
Thank you for your clarification.
Paul
Do you believe that HIFU is close to being approved in the US as a salvage treatment for prostate cancer after radiation treatment?
No. My bet is that this is still a long way away. Trials of HIFU as a salvage treatment for men who are failing after first-line radiation therapy are accruing patients only slowly. It could be years before anyone has data from a large, completed trial available to submit to the U.S. Food & drug Administration.
I need to know more about prostate cancer. Would a physician remove the prostate if a patient has no symptoms (just because there is a family history of the disease)? How could anyone (who is intimate with someone) know if this surgery has been performed?
I am worried that my DH (dear husband) is lying to me. When we married a few years ago, we were intimate. After the marriage, no intimacy. Last week, he came up with this story of having an ofranectomy (not sure if this is spelled right, or the correct term … he has claimed he had his prostate removed). He does have a family history of prostate cancer (his dad and his brother died from it). Is there a way to find out (or what questions should I ask him) so that I might REALLY know if he has had this surgery? I need proof that this happened. Please help!
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Arthur responded as follows:
Dear Jacie:
Arthur is a little puzzled by your question, so he thinks we need to try to clarify a couple of things first.
There are TWO forms of surgical treatment for prostate cancer.
The most common one is known as a radical prostatectomy, in which the surgeon removes the patient’s prostate through the abdomen. This type of surgery inevitably leaves scars: either a single vertical scar in the center of the lower abdomen or a set of three to five smaller “holes” in the lower abdomen if the surgery was done laparoscopically. In either case it takes the patient time to recover from this surgery, and while it might be possible for a spouse not to know that such surgery had happened, it would be hard to hide.
The second form of surgery is orchiectomy — the surgical removal of a man’s testes — which is usually only done when a man has been diagnosed with more advanced forms of prostate cancer. For a variety of reasons this may be less obvious, and Arthur supposes that it might be easier for a man to hide it because the surgery can be done in ways that may it less “obvious.” It has not escaped Arthur’s notice that “orchiectomy” sounds a lot more like what you described as “ofranectomy”. There is no such thing as “ofranectomy” that Arthur is aware of.
Do surgeon’s operate on men for prostate cancer when they have no evident symptoms of their disease? Yes, all the time. The best way to prevent progressive prostate cancer is to find and treat it early — before the patient has any symptoms. Arthur is aware of a few men being treated even before there was any clinical evidence of the presence of disease because of a family history of aggressive prostate cancer (in the same way as some women with a family history of aggressive breast cancer may decide to have a prophylactic mastectomy).
The real issue here, however, is the fact that you and your husband are having some sort of communication breakdown. That could be happening for all sorts of complex reasons, but clearly he doesn’t seem to want to talk about the issue and you haven’t found a way to “get through” to him to get your questions answered in a satisfactory way. This may require some real work on your part because your husband may also be very emotionally distressed by whatever it is that he may have felt he needed to do. Many men have very real problems accepting the consequences of prostate cancer treatment — particularly if and when loss of sexual function is one of those consequences. If your DH was always the “strong silent type” anyway, he may be having an even harder time dealing with this than most.
Arthur does not know enough about the nature of the relationship between you and your DH to be able to give you much specific help, but it is clear that you and he do need to find a way to talk to each other honestly about whatever has and is happening. Arthur does not believe it is a good idea for you to start from the idea that your husband may be lying to you. It is much more likely that he simply finds whatever has happened extremely difficult to talk about. Somehow you need to find a way to sit down with him quietly, make sure he understands that you are worried about him (as opposed to you or anything else), and try to get him to actually talk to you about what has happened and what you can do to help him.
PS … Arthur has tried to address all the issues that you brought up in both the questions you left on the InfoLink site, so you should not expect a second answer from Dr. Krongrad. He would only be giving you much the same answers.
Arthur hopes this is helpful.
I had my prostate removed 10 years ago. My PSA had always been 0.1 since my surgery. Now it is 0.3 ng/ml and my doctor is recommending radiation for 7 weeks. Do I really need it or should I wait until it goes higher?
Arthur responded as follows:
Dear Leo:
Arthur says that there are several factor that you need to consider and discuss with your doctors before making this decision. They include, but are not limited to:
– Your age
– How fast your PSA is rising (the so-called “PSA doubling time”)
– Your pathologic stage and your pathologic Gleason score at the time of your original surgery
– Whether you did or did not have positive surgical margins after your original surgery
– Where the recurrence seems to be
So Arthur thinks that the bottom line is that the younger you are and the more aggressive the disease recurrence seems to be, the sooner you should probably consider salvage radiation (with or without a short course adjuvant hormone therapy), but it is also important to try to determine whether the recurrence is limited to the prostate bed and surrounding area of the pelvis. If the recurrence is a distant recurrence, then radiation of your pelvis is unlikely to be particularly helpful.
I wrote to you first on June 1st, 2011. I now want to tell you that I have had four PSA tests each 3 months apart, and they have remained at 0.3 ng/ml since it increased about a year ago from 0.1 ng/ml, which it had been since my disease was first being treated by EBRT and Prostap 3 injections every 3 months. These injections have now ceased since about 16 months ago. So … I am treatment-free since about 16 months ago and my PSA increased from a constant for 3+ years of 0.1 to 0.3 ng/ml over the last year or so.
I met with my consultant oncologist 3 weeks ago and he disagreed that I needed any further assessment and will see me again in a year unless the PSA should start to increase again. You will see from my first letter that I had T3b disease (seminal vesicle involvement), Gleason 8, with a PSA of 6.7 ng/ml when first diagnosed nearly 4 years ago.
Do you think I have any need to be concerned or is the fact that my last four 3-monthly PSA tests have remained the same cause for real optimism?
—–
Arthur responded as follows:
Dear Mike:
Arthur says that your PSA has clearly stabilized again. This happens. This could have nothing to do with prostate cancer. It may reflect regrowth of a small amount of perfectly normal prostate tissue that was not completely killed by the radiation therapy, for example.
Your PSA level has effectively gone from 0.1 after your initial radiation therapy to 0.3 ng/ml today over a period of about 4 years, this is a very slow PSA doubling time, and therefore a good sign. Arthur suspects that you really do not need to see your consultant again for a year unless, as he says, your PSA starts to rise again. So … It would probably be a good idea to just keep getting the PSA test done every 3 months by your primary care doctor. If it’s still 0.3 ng/ml a year from now, then maybe every 6 months would be enough, but you should dioscuss that with the consultant.
Does drinking alcohol have any effect on cancer of the prostate? Because I have prostate cancer, would it be best that I avoid alcohol?
Arthur responded as follows:
Dear Chris:
Arthur says that that he is not actually aware of any significant, published data on the use of alcohol among men who have already been diagnosed with prostate cancer. For example, a study by Linsky et al. published earlier this year appears to give us no specific guidance about alcohol use among prostate cancer patients.
There are, however, several studies that have shown that risk for diagnosis with prostate cancer appears to be slightly higher among men who have higher levels of alcohol consumption (see, for example, this paper by Breslow et al.)
Having said that, Arthur would suggest that two things are important here:
(a) “Everything in moderation” is a good principle to work by, so a glass of wine or a beer a day is probably not a problem — but regular, serious drinking is just not a great idea anyway.
(b) You should ask your doctor or pharmacist whether any drugs you may be taking suggest the avoidance of alcohol. Your biggest risk if you are only a light drinker anyway is likely to be because of an interaction between alcohol consumption and a specific drug or drug combination leading to side effects of some type.
Hi Arthur, thanks for your hopeful reply. Just thought I’d ask you what you thought of a reply from an eminent oncologist that I received about 6 months ago, having forwarded to him information similar to what I have sent to you to date. His reply was that the game was up as the cat was out of the bag, due to vesicle involvement. He hoped I would have a good remission and use it as best I could. He did not seem to think I was “cured”, especially with a T3b stage 3 Gleason 8 diagnosis. From your own assessment/summary of all the information I sent to you over the last few months, is there a possibility that I may not be affected with metastasis in the immediate future, or even for a very long time to come/ever?
Best regards
Mike (Feorais)
*****
Arthur responded as follows:
Dear Mike:
Arthur say that there are two quite separate things going on here …
On the one hand, you were originally diagnosed with Gleason 8, clinical stage T3b disease. Regardless of any form of treatment, this is a high-risk form of prostate cancer. No one can guarantee a “cure” based on a diagnosis like this. The question is only how long you will remain in remission and how fast your PSA might start to rise if/when it does start to rise.
On the other hand, your PSA is currently stable and you are off therapy. Your PSA might remain stable for months or for years. It is, however, probable that you are going to progress at some point in time. No one can tell you when, and that is why the “eminent oncologist” is telling you that “the cat is [almost certainly] out of the bag.” All that I can tell you is that I have seen men like you go for several years without significant recurrence … and I have seen men like you recur quickly and seriously. I don’t believe anyone can predict with any degree of accuracy what might happen in your specific case.
So Arthur thinks that the good news is that, as and when you need to, you are likely to respond well to a second and subsequent rounds of hormone therapy. Furthermore, there are now drugs coming available that will be usable after standard hormone therapy ceases to work. The way you need to look at this is that: (a) you are in good shape and off therapy and your PSA is stable; (b) if and when your PSA starts to rise, you will probably respond well to another course of hormone therapy; (c) this process could go on in cycles for years before you became castration-resistant, at which other therapeutic options would become available. There are some things you have no control over in life … but you also can’t agonize over this. It is just the way things are.
My husband was diagnosed with prostate cancer in 2009. He was started on Lupron immediately, then a round of radiation and was put on Casodex. Since then he has been on a trial medication and just recently came off 3 months of Taxotere chemotherapy. Now he is on Zytiga and we asked his oncologist when could he come off of Lupron. She said he would not be able to come off Lupron even if he becomes a survivor. He would have to be on Lupron the rest of his life. … Is this correct?
Arthur responded as follows:
Dear Alicia:
Arthur says that there are two basic categories of prostate cancer cell in men with progressive disease like your husband: hormone-sensitive cells that respond to drugs like Lupron and hormone-resistant cells that don’t. Your husband now has both of these types of cell in his body.
It has been standard practice for many years to maintain men like your husband, who have progressive, hormone-refractory disease, on an LHRH agonist like Lupron in addition to other forms of therapy. This is done to slow the overall progression of his disease by controlling the growth of the hormone-sensitive cells.
Arthur says that with the development of new drugs like MDV3100, we may find that this historic way of controlling the growth of hormone-sensitive and hormone-resistant cells with two different classes of drug may become unnecessary, but the relevant trials have yet to be conducted, and so yes, at present your oncologist is correct, your husband does theoretically need to stay on his Lupron.
Having said that, Arthur is aware of men with progressive disease who find that the effects of Lupron and similar drugs on their quality of life to be so distressing that they have stopped this type of therapy entirely or have asked their oncologists to switch them from Lupron-like therapy over to estrogen patch therapy (which can have similar clinical effects without necessarily the same adverse reactions). Arthur has no information on the long-term effects of stopping Lupron-like therapy in men like you husband. However, he is aware of at least a few men who have been able to do very well for a while on the estrogen patch therapy. These are issues that you and your hubsnad would really need to discuss with his doctors. Arthur is not in a position to recommend one or other of these strategies. He is simply informing you that he is aware of their use by other patients and their doctors.
Can you please give me the names of the most experienced prostate cancer cryotherapists in the US?
Thanks
Paul
Arthur responded as follows:
Dear Paul:
Arthur says he is not aware of any reliable information on the skill and experience levels of specific prostate cancer cryotherapists working in the USA. Your question would also need to take account of whether you are looking for someone with experience in focal cryotherapy (for first-line treatment of a very small and low-risk tumor); standard, whole-gland cryotherapy as first-line treatment; or salvage cryotherapy (as salvage treatment after first-line radiation therapy).
The only practical guidance that Arthur can really offer you is that many of the better cryotherapists are probably contributing data to the Cryo On-Line Data (COLD) Registry database coordinated by Dr. J. S. Jones who works at the Cleveland Clinic. The number of really experienced prostate cancer cryotherapists is still relatively small.
Dear Arthur,
I am 49 years old. I had a robotic RP 3 weeks ago. Pathology report was as follows: Gleason 3 + 4; cancer volume, 6%; prostate weight, 38 grams; pathological stage, pT2c; no extraprostatic extension; one unifocal positive margin; perineural invasion present.
My pre-op PSA was wobbly between 2.9 and 5.8! And my bone scan and body scan were clear.
Should I go undergo radiation therapy, and how soon? Are there any advantages in starting radiation as soon as possible or it doesn’t matter. My surgeon wants to see me in 2 weeks from now to do a PSA test.
Secondly, for my hypertension I am taking Norvasc, a calcium channel blocker, and some sites suggest stopping it, do you have any news on this? I also take Toprol for my hypertension.
I also am on a fish and omega 3 food diet but a new study suggest it actually has negative effect, do you have any suggestion?
Thank you in advance,
Abbas
*****
Arthur responded as follows:
Dear Abbas:
First, Arthur thinks it to far too early for you to be making decisions about whether you might or might not want to consider adjuvant radiation therapy after your initial RP. Unless you had a very significant (i.e., large) positive surgical margin, there are serious questions about whether you will ever need any form of subsequent radiation therapy at all. In addition, at your age, you need to be aware that having radiation therapy too soon after an RP will increase the probability that you may affect your chances of full recovery or continence and sexual functionality. Arthur suspects that if you talk to your surgeon he will tell you that you can afford to get at least two or three post-surgical PSA test results before you need to make any decisions about the need for radiation therapy. The most important thing you want to know first of all is whether your PSA has dropped to < 0.1 ng/ml.
Second, with respect to the Norvasc and the Toprol, you need to talk to your cardiologist about this, but Arthur is not aware of any good, general reasons why men treated surgically for early stage prostate cancer might need to alter their antihypertensive regimens. If you had been put on hormone therapy in addition to having the RP or radiation therapy, the situation might be different, but you aren’t, so stay on your current drug regimen and talk to your cardiologist about it if you feel you need to.
Third, with respect to your diet, Arthur thinks there is a lot of information and thousands of suggestions available about diet and very few really good facts. Arthur would point out that even today you are probably at greater risk from cardiovascular mortality than from prostate cancer mortality. Arthur suggests a good, mixed “heart healthy” (Mediterranean-type) diet and a regular exercise program. (These will also help your hypertension.) Any diet that over-emphasizes one particular food type is liable to come with its own set of problems. Just be smart: eat less, eat healthy, and eat better.
Dear Arthur,
This is a follow up to a prior question. A week ago I wrote:
“I am 49 years old. I had a robotic RP 3 weeks ago. Pathology report was as follows: Gleason 3 + 4; cancer volume, 6%; prostate weight, 38 grams; pathological stage, pT2c; no extraprostatic extension; one unifocal positive margin; perineural invasion present.
“My pre-op PSA was wobbly between 2.9 and 5.8! And my bone scan and body scan were clear.
“Should I go undergo radiation therapy, and how soon? Are there any advantages in starting radiation as soon as possible or it doesn’t matter. My surgeon wants to see me in a month from now to do the PSA test.”
Now I have got my first PSA test results at 0.04. And my surgeon says that the positive margin was very small, no actual measurement was given. He thinks radiation is absolutely unnecessary.
My questions are: (1) if all cancer cells have been removed, why do I still have a detectable PSA and (2) should I consider radiation at all and if not how often do I need to have a PSA test?
Thank you in advance,
Abbas
—–
Arthur responded as follows:
Dear Abbas:
Arthur says that a PSA level of 0.04 ng/ml after a radical prostatectomy is — to all intents and purposes — an “undetectable” PSA level. Remember that the serum PSA test is not measuring the level of cancer in your prostate. It is measuring the level of PSA in your bloodstream, and there are may well be very, very low levels of PSA in your bloodstream, but if you have no prostate, then you have no prostate cacner cells in your prostate.
Arthur also says that, with a pathological stage of pT2c and a very small positive surgical margin, it is possible (if unlikely) that your PSA could start to rise again at some time in the future, but no one can tell you that today. For the present Arthur thinks you should listen to your urologist and monitor your PSA carefully ewvery 3 months for the next couple of years. Arthur does not see any need for you to have adjuvant radiation at this time. If your PSA does start to rise, then salvage radiation can be implemented at some point in the future, but you may never need this.
It sounds to Arthur as though your surgeon has done a very good job for you, so let’s take a little rest from treatment and hope that you will be “all done” with risk of prostate cacner for the rest of your life!
Welcome back Arthur.
You and I last communicated in 1997 as you were going off-line. I was age 47, had just failed RP and been diagnosed Stage 4. I was given a prognosis of 2 or perhaps 3 years.
How I got from then ’til now doesn’t matter as much as the fact that I did. In my experience, newly diagnosed prostate cancer patients and their families are frequently terrified and feel that their circumstances are without hope.
Arthur, in 1997 you were one of the very, very few who helped me understand the language of prostate cancer. You inspired me to learn more and I did. My greatest fears became curiosities that preceded learning experiences. My fears became more manageable.
Again Arthur, welcome back. And by the way, I have a hat like yours.
—–
Arthur responded as follows:
Dear Scott:
Arthur says he is delighted to hear of another patient who discovered that the odds weren’t as heavily stacked against him as some might have originally thought.
Arthur believes that the cultural and social biases that kick in (among patients themselves, among family members, and among the professional community) when any diagnosis of cancer is given often still reflect the mindsets of the 1950s as opposed to the 21st Century.
We have come an awful long way in the 15 years or so since you and Arthur last intersected … and Arthur very much hopes that you have been able to use your personal experiences to inform and educate others that even men with progressive forms of prostate cancer can have long and productive lives ahead of them.
I had radiation therapy 6 years ago and after treatment, my PSA went to 0.9 ng/ml 3 years ago. Now it is 2.7 ng/ml. Assuming a recurrence, can cryotherapy cure this?
Thanks, Leland.
_____
Arthur responded as follows:
Dear Leland:
Arthur says that it is impossible to know (based on the information you have provided) whether cryotherapy can “cure” your rising PSA … or even whether you need to try.
It appears that your PSA is rising at a rate of about 0.6 ng/ml per year, but what you really need to know is your PSA doubling time, which can be calculated using the calculator on the Memorial Sloan-Kettering Cancer Center web site. (PSA doubling time is the time it takes for your PSA levels to go from — say — 1 to 2 to 4 to 8 ng/ml, etc.) If your PSA doubling time is 3 years or more, which seems very possible, then it will take at least another 9 years for your PSA to reach 25 ng/ml, and at that point you probably would still have no symptoms of your disease. On the other hand, if your PSA just goes on increasing by 0.6 ng/ml per year, then it would take another 20 years to reach about 15 ng/ml!
Arthur notes that your current age and any other health issues (“co-morbid conditions”) also affect whether additional treatment is going to be worthwhile.
With regard to the effectiveness of cryotherapy, this would depend on exactly where cells that are making PSA are situated and whether they are cancerous or not. Sometimes normal prostate cells survive radiation therapy and can grow and make PSA again. If the cells that are making PSA are cancer cells that are outside the prostate, then cryotherapy is not going to be curative.
All that Arthur can really tell you at this time is that you need to get a lot more detailed information from your doctors before you could put a well-thought-out plan of action in place.
I am so pleased to have Arthur back. A great concept — clear, easy to understand. A great addition to the wonderful services of The “New” Prostate Cancer InfoLink.
As far as “doubling” is concerned, have a look at my chart in comparison:
20/02/07, 5.7 …… 02/05/07, 5.0 …… 15/08/08, 5.0 …… 07/12/09, 15.3
07/05/10, 24.0 …. 02/07/10, 45.0 …. 23/08/10, 51.0 …. 10/09/10, 64.9
15/10/10, 69.0 …. 22/11/10, 116.5
It was here I decided on ADT.
I have been receiving hormone treatment for prostate cancer for almost 17 years and am happy and grateful that my PSA has remained at undetectable levels for all that time.
Originally, my PSA was over 20 (at age 50). A prostate biopsy was positive for prostate cancer. An MRI revealed metastasis to my lymph nodes although a bone scan was negative. I was prescribed Lupron and originally Eulexin although the latter was switched to its generic substitute, flutamide. Recently my mail order pharmacy informed me that flutamide is currently unavailable and they don’t know when it will become available again. They contacted my urologist who suggested Casodex as an alternative. After such a long period of successful therapy, I am understandably reluctant to change medications although I do know that Casodex and Flutamide are in the same class of drugs. I wonder if I should search for an alternative source of flutamide or simply switch to Casodex. What is your opinion?
Arthur responded as follows:
Dear Charles:
Arthur thinks you would almost certainly do fine if you switched to bicalutimide (Casodex), although you could also talk to your doctor about whether you really need to stay on the antiandrogen at all.
Bicalutamide (which, like flutamide, is also available generically) has long been considered to be a slightly more effective and safe drug than flutimide. You can take it just once a day and it tends to have slightly fewer side effects than flutimide.
As Arthur has implied above, however, the real question is whether it would matter at this stage if you simply stopped taking an antiandrogen. That is something you need to discuss with your doctor, however. You shouldn’t make that decision on your own.
Hi Charles
Another Charles here. Did you receive any radiotherapy in that time or have the hormone suppressants done that alone? Yours is indeed an encouraging story.
Charlie Merson
This is a response to Charlie Merson who asked if I received any radiotherapy or if I only received hormone suppressants. I have only received hormone suppressants (and said a good deal of prayers). My case may seem unusual but, yes, there is hope. In my case, there was apparently no reason to try other treatments as the horse was already out of the barn, so to speak. A number of years ago, Arthur commented in reply to a question of mine that our knowledge of prostate cancer is very limited. Some guys only last a few years on hormone suppressants before their PSA begins to rise. Some guys don’t respond to hormone treatment at all. I am one of the lucky ones and, as I understand it, there are others who have had similar fortunate outcomes. There is no guarantee that this good fortune will continue as hormone therapy does not effect a cure. But Arthur was of the opinion that I will last for a good deal longer. He also mentioned that there are other treatments if hormone therapy begins to fail. Arthur was most optimistic and so am I. So good luck, Charlie Merson, I hope you’re one of the lucky ones too. I wish you well.
Charlie Reilly
Aloha Arthur,
When prostate metastases are discovered in the pelvis, does any chemo treatment extend your life to the extent that the decreased quality of life (while on chemo) is worth it?
Joe
Arthur responded as follows:
Aloha Joe:
Arthur thinks that your question is rather like the question, “Is there really a God?” How you answer the question so depends on what one values that it has no definitive answer.
Some people would answer your question by saying that anything that extends life is “worth” whatever one has to put up with to gain the benefit. Others might answer that there is a limit to what they would put up with to gain relatively small extensions in life. On top of that, as of today, no one can tell you beforehand whether you will or will not be one of the people who responds really well to chemotherapy … or whether you will be one of the people who gets really bad or relatively few side effects.
If you are personally faced by the decision whether to have chemotherapy, all Arthur is able to tell you is that you need to make a decision about how you value the quality of your life compared to its quantity. Arthur knew years ago, in his own case, that there would come a time when he felt it was better to “let go” than to subject himself to aggressive forms of treatment with low benefit potential. So far, however, Arthur has not had to face the question you are asking, so he is ill-equipped to judge what he might actually do under that particular circumstance. What we think in the abstract is rather different to what we may actually do in reality.
Aloha Arthur,
I was talking to a radiation oncologist friend yesterday. He suggested that chemotherapy would not be his first choice. He would recommend targeted EBRT/IMRT to the specific bone site, especially if that was the only detected location.
I could see/agree to doing that.
Right now, my urologist (the local department head) will not perform a uro-ostomy to stop urine from entering the urethra where there is a painful open wound. Her reasoning is that there is too much scar tissue to operate. The wound appeared about 2.5 years after EBRT/IMRT. Morphine takes the edge off but does not stop the initial shock. The SPC into the bladder bypasses most of the urine to a bag. She is allowing me to meet with another department doctor who has done this operation before where the patient had bladder cancer 8 years after EBRT.
Joe
I’m worried about erectile dysfunction. I’m supposed to get the prostate removed in the very near future.
*****
Arthur responded as follows:
Dear David:
Arthur’s question is, “Who says you are supposed to get your prostate removed?” Are you absolutely sure that you really need treatment at all at this point in time?
The appropriate management of prostate cancer depends on many factors, including: your age, your PSA level, your Gleason score, your clinical stage, the amount of cancer found on biopsy, the potential that your cancer is indolent, and above all else what you want to do about it (as opposed to what the surgeon thinks he or she would like to do about it)!
It may well be that surgery is the best and most appropriate treatment for you, but it is far from being the only option in many cases, and if you aren’t committed to the idea that surgery is the most appropriate form of care for your problem, then it clearly isn’t (or at least, not yet!).
Arthur suggests that you join the InfoLink’s social network and get some insight from others about all of your potential options before you agree to any particular type of treatment. Surgery is associated with a significant risk for short- and long-term erectile dysfunction.
Bravo, Arthur, on this reply to David!
Dear Arthur,
I had my third injection of Eligard in March 2012. In hours these things happened:
(1) Partial numbness around the anus and penis;
(2) 7/8ths blockage of the urethra (never before, always good flow);
The reason I had the injections in the first place (PSA 8.2) was pain in the left-hand side of the pelvis. This not related to prostate at all so it seems as it remains (8/10). Have to take Oxycontin for control which has caused bowel problems as well. Your thoughts on the matter, Arthur?
*****
Arthur responded as follows:
Dear Barry:
Arthur is not at all clear from your message why your doctor is giving you either the leuprolide acetate (Eligard) injections or the oxycodone (Oxycontin) in the first place.
Leuprolide acetate is a drug that, in men, is used to lower testosterone levels and therefore control the growth of cells that is stimulated by testosterone. Oxycodone is a drug that is used to manage significant pain but you say it is being given to you for “control”. Arthur is not clear what you mean by that. Constipation is a common side effect of oxycodone treatment — but this drug is associated with a whole range of other side effects too.
You have pain in your pelvic region, but it is not clear to Arthur what is causing that pain. You have a PSA of 8.2 ng/ml, but you have implied that you don’t have prostate cancer. Is that correct? There are multiple reasons why you might have a PSA of 8.2 ng/ml. Has your doctor told you why s/he thinks your PSA is elevated? Have you ever had a prostate biopsy?
Arthur has no good explanation for the clinical effects you experienced shortly after your injection of Eligard. However, if these wore off after a little while, then at least two explanations are possible: (a) you have developed some form of individual hypersensitivity to Eligard; (b) there was a “flare reaction” of some type to the injection of Eligard that resulted in a swelling of the prostate — which then caused both the blockage of the urethra and the partial numbness you describe (as a consequence of pressure on nearby nerves).
Arthur is of the opinion that you need to do several things:
(1) You need to have a serious conversation with your current doctor to make sure you really understand why you have been receiving the Eligard and the oxycodone in the first place. (Drugs like Eligard are given by some physicians as a method to shrink enlarged prostates, but usually only after other forms of treatment have been tried and failed.)
(2) You need to ask your doctor why s/he thinks you experienced this reaction to the Eligard.
(3) You need to get clarity from your doctor about why s/he thinks you have an elevated PSA level.
(4) If you cannot get clear answers from your current doctor, you should probably go and get a second opinion elsewhere.
(5) You shouldn’t have another injection of any agent (like Eligard) that includes leuprolide acetate (the active agent in Eligard and many other LHRH agonists) until there is clarity about all of the above and a plan to try to ensure avoidance of the response you experienced in March.
Dear Arthur:
I had brachytherapy and external beam radiation 12 years ago. My PSA settled at 0.3 for the past 10 years (taken at 6-month intervals). It was 0.3 in June 2011 and I just learned that it was 0.9 ng/ml in November 2011.
*****
Arthur responded as follows:
Dear Milton:
Arthur says that if he was wearing your shoes he would do the following:
(1) Talk to his doctor to make sure the November PSA was done at the same laboratory using the same process as has been being used for the past 10 years.
(2) Ask to have his PSA re-tested again now.
Your result of 0.9 ng/ml in November may have been caused by a technical aberration or a mix-up in patient samples or some other snafu. However, the sensible thing is to go get that check done early. Arthur says that, hopefully, you will discover that your PSA is back down at 0.3 ng/ml again and there really is nothing to get excited about.
If your doctor started sending his your blood samples out to a new laboratory, this alone could explain the difference in your reading. In that case you need to establish a new “baseline” and make sure that your PSA remains stable at that baseline level.
Dear Arthur:
I had my my first PSA test in December 2006, as I found I was urinating a lot, which provided a reading of 4.8 ng/ml, and so I had a biopsy in 2008 which found no cancer out of 8 samples. My PSA in January 2010 read 7.43 and a further biopsy in February 2010 found 2 out of 12 samples on the left apex and a Gleason score of 3 + 3 = 6. I have been on active surveillance since. I gave up eating any dairy in 2010 and my PSA has been stable, ranging from 6.9 to 5.9 in four readings since my last biopsy. Since ceasing dairy as part of my diet, my need to urgently urinate has reduced to occasionally only and I only get up during the night once and occasionally not at all.
My late father, his two brothers, my brother, and at least one cousin all have or had prostate problems but no one has had more than localized problems. I am at a healthy weight, do not smoke, drink only occasionally, exercise regularly and have no other health worries and am not on any medication.
Both biopsies have resulted in haemorroids, which lasted for weeks. As a consequence, I am reticent to have regular biopsies and also because of the normal risks associated with regular biopsies.
Is there any alternative to regular biopsies, although I may have to pay privately as biopsies are all that is offered in the UK NHS system. If I continue just monitoring the PSA only what risks am I taking.
Any advice would be gratefully received
Thanks, Yusuf
Arthur responded as follows:
Dear Yusuf:
Arthur understands your concerns but he is not at all sure how best to advise you.
In the first place, Arthur has never previously heard of prostate biopsy being associated with risk for hemorroids. He supposes that this may well be possible, but he has no idea why this would be the case. Have you ever discussed this with your doctors?
Second, you certainly could continue on active surveillance without any biopsies by carefully monitoring only your PSA (or perhaps betters still your PSA and your %free PSA). However, Arthur has to point out that this would increase the potential risk that you might have progressive disease that was not immediately reflected in your PSA levels, so your attitude to your risk and your willingness to accept the potential consequences are a major factor here.
Third, at least in theory, by having an appropriate type of MRI instead of the biopsies, you might well be able to manage your risk nearly as well as by having the biopsies, but Arthur suspects that this form of care is not covered by the NHS, so you would need to find out the cost of such care outside the NHS system, and if you were to want to do this you would also need to have it done at a center which was actively studying the role of MRI in the diagnosis and management of men with prostate cancer so that you could be sure the MRIs were being carried out by and read by people who had the appropriate skill and knowledge levels.
Finally, Arthur says that specialists in the application of active surveillance now appear, increasingly, to be of the opinion that men who have had at least two biopsies after their initial diagnostic biopsy, with no further sign of disease progression, may only need further biopsies if these are indicated by elevations in PSA levels or by other clinical symptomatology. You, of course, have had no other biopsy since your original diagnosis 2 years ago, so you might want to grit your teeth, tell your urologist that you will have one more biopsy, but that if that is negative you will only have another if there is a clearly defined need for it. With respect to trying to avoid hemorrhoids or infection, you should talk to the doctor beforehand about whether (a) there is anything that can be done prophylactically to lower the risk of the hemorrhoids and (b) you can have a rectal swab taken and bacterial culture carried out prior to the biopsy to ensure appropriate prophylactic antibiotic therapy.
Hi Arthur.
After being diagnosed with Stage IV prostate cancer 15 years ago (at age 47) and aborting surgery after a positive abdominal lymph node biopsy, I had great success in holding my PSA close to 0 using Lupron for almost 15 years. Then, my oncologist retired from a large group of doctors at about the same time the Lupron quit working.
As I mentioned in prior communications, because the Lupron had failed, the new doctor first tried ketoconazole and hydrocortisone. That did not work. Then we went to degarelix (ouch) 1 month ago. As you predicted, the results were not good. My PSA has risen from 14 to 20 in 1 month. Recent bone scan, CT scan, and x-rays are all negative for metastases so far.
Your thoughts, kind sir and thank you very much.
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Arthur responded as follows:
Dear Scott:
Arthur says you are clearly hormone-refractory, and so it is time to move to a series of very different strategies. There are three fundamental options available to you at present.
The first option is immunotherapy with sipuleucel-T (Provenge). You appear to be a good candidate for treatment with this agent (if your insurance provider will cover most of the cost and you can deal with the co-pay). Sipuleucel-T does work very well for some men. The problem with this drug, however, is that your PSA will continue to rise. There is no marker that allows us to know who is responding to this drug and who isn’t, so it is difficult to know when to taken the next therapeutic step after completion of the three rounds of treatment.
The second option is docetaxel-based chemotherapy. Again, this works very well for a small subset of men — but most patients tend to progress relatively quickly.
Your third option is a clinical trial of one of the new drugs being tested in men with chemotherapy-naive, castration-resistant prostate cancer. However, because you are castration-resistant but NOT yet clearly metastatic, finding a trial to enroll in might be a problem. You MAY be eligible for the IMAAGEN trial, which would guarantee you access to abiraterone acetate, and which is recruiting patients at about 50 different centers in the USA. Your might want to ask your current physician about this trial.
Arthur hopes this information is helpful.
Seven years ago I had my prostate removed. Six months ago my PSA was 2 ng/ml; now it is 5 ng/ml.
My doctor gave me a prescription for 10 bicalutamide pills 50 mg; also a prescription for Lupron 30 mg injection on May 2, 2012 for every 3 months. Please give me your thoughts.
*****
Arthur responded as follows:
Dear Sid:
Arthur is missing a LOT of information here. For example: (a) Has anyone actually talked to you about why your PSA is rising and whether the rise in PSA could be due to a local recurrence which might be treated with radiation therapy? (b) Is there any definitive evidence that the recurrence is due to a distant recurrence? (c) Do you know your PSA doubling time (which would need us to have the results of three consecutive PSA measurements and the exact dates on which blood was drawn for those tests)?
Second, Arthur would note that it is customary to have at least a week of bicalutamide therapy before having one’s first injection of Lupron. The whole point of that initial few days of bicalutamide therapy is to block the so-called “flare reaction” that occurs if drugs like Lupron are given without prior antiandrogen therapy. In other words, it seems odd to Arthur that the doctor would want to give you a Lupron injection after only 1 dose of bicalutamide. You might want to check on this with his office.
Third, the whole question of exactly when to start hormone therapy in men with a rising PSA after prior curative treatment is controversial. Some doctors and some patients feel that if one starts hormone therapy too early, all one is doing is “managing” the PSA level because it really is also (possibly) accelerating the risk for onset of hormone-refractory disease. These doctors argue that it it better to wait for the PSA to rise to more like 20 or 50 ng/ml (or even until there is some clear evidence of metastatic disease on a bone scan) before starting hormone therapy. There is no “right” answer to this issue.
Arthur gets the strong impression that your doctor has not really explained well for you why he wants you to be treated the way he is suggesting. Arthur would emphasize that your doctor may have very good reasons for wanting you to be treated the way he is suggesting. However, if you don’t understand his reasoning, then you clearly aren’t going to be confident that this is the “best” way for you to be treated (which is presumably why you have ended up here, asking Arthur his opinion).
Arthur wonders whether there is a nurse at your doctor’s office who you could go back and talk to to see if he/she can explain the doctor’s thinking for you.
Hi Arthur,
I have PC, and I am constantly reading how dairy, and eggs are detrimental regarding the progression of prostate cancer. I am wondering whether egg whites (as in “Eggbeaters”), and Gouda cheese (per Dr. Oz’s cancer-prevention recommendation) are also harmful.
Thank you.
*****
Arthur responded as follows:
Dear Tug:
Arthur says that there is a great deal of rubbish about diet and health care reported in newspapers.
If you ate all eggs and dairy products and no vegetables and no other roughage, that probably wouldn’t be a good idea whether you had prostate cancer or were 100% healthy.
Arthur says that in 20 years he has seen no well-conducted clinical study that demonstrated — with any degree of compelling data — that eating or not eating any one or other food in moderation was good or bad for the health of a man with prostate cancer. As one example, he has never seen any study that clearly demonstrated that eating three or four eggs a week was going to significantly affect one’s health … if eating those three or four eggs was just one part of a well-balanced “heart healthy” diet. By contrast, during that same time frame, Arthur has seen dozens and dozens of newspaper articles blathering on about the merits or eating or not eating eggs (most of them based on press releases promoting something).
Arthur says that if you like eggs, eat them — in moderation. If you are happy to eat Eggbeaters, then eat those instead — in moderation. Our obsessions about whether one specific component of our diet will or won’t be harmful have become unhealthy. The simple trick is to eat a balanced diet; not to over-eat; and to take regular daily exercise. It is guidance that has worked well for many humans for several hundred thousand years!
Arthur:
It’s been a year since I wrote and I wanted to get your input again.
To recap, in April 2006 at age 51 I took my first PSA test and it came back 4.9 and 14% free. For each of the next 3 years I had biopsies: 2006, 2007, and 2008. The one in 2007 showed PIN; the one in 2008 showed nothing. My PSA has bounced around between 3.3 and 6.5 for the next 5 years. The 6.5 was last year which seemed like a big bump to me. The test I took last week, 6 years after my first test, showed a PSA of 5 and 14% free. Almost exactly the same as my first test 6 years ago.
The biopsies showed inflammation.
The fact that the PSA results are the same as they were 6 years ago, does that mean anything? Would it be prudent to monitor my “situation” on a yearly basis as opposed to every 6 months?
*****
Dear Jim:
Arthur wants to point out, first, that he is not a a doctor and that even if he was, he has not examined you.
Having said that, it certainly sounds as though your problem is a case of mild, chronic prostatitis rather that prostate cancer or a prostatic infection. You may also have some mild, benign prostatic enlargement (BPH) as well.
Would it be prudent to consider monitoring your PSA annually as opposed to every 6 months? Well, Arthur would certainly think it was a reasonable thing to discuss with your doctor. Arthur supposes that the real issue is whether this is what (s)he is suggesting or whether it is what you want to be able to do.
My husband was diagnosed in August 2009 (PSA pre-surgery 41.55; Gleason 8). he had an RP in October 2009 and his PSA after surgery was 8.55. His pathology report showed T3a extraprostatic extension; margins extremely close; Gleason 4 + 3, biochemical failure. He took flutamide and Lupron from January 2010 to March 2011 and then suspended his treatment because of the terrible side effects — body aches, burning in feet and lower buttocks and back. His PSA was undetectable and his testosterone was 18 until November 2011.
Because of the terrible side effects my husband suspended his treatment until March 2012. He is currently on Lupron only. The doctor wants to see how he does after 9 months.
I now have three PSA levels with which to calculate his PSA doubling time: November 17, 2011 = 0.40; February 17, 2012 = 7.81; March 23, 2012 = 10.96. Also, his MRI done on March 8, 2012 showed an 0.50 tumor in his prostate bed, which turned out not to be cancerous; however, he also had one slightly enlarged lymph node right behind the suspected tumor. His serum testosterone level in March 2012 was 278.
Please give me your thoughts, and can you calculate his PSA doubling time? Do you know of men in my husband’s situation and long-term how do they fair. My husband is still suffering from severe fatigue, and pain in his upper back and buttocks. Can you determine based on his history where his cancer may be and do you think at some point he will go refractory.
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Arthur responded as follows:
Dear Debbie:
Arthur says that it looks to him (from the data that you have provided) as if your husband had micrometastatic (i.e., systemic but not visibly evident) disease from the time he was diagnosed. You don’t say so, but Arthur has to assume that: (a) your husband was given at least a bone scan and perhaps other scans at the time of his initial diagnosis; (b) that these were negative; and (c) that a lymph node dissection done at the time of surgery was also negative. Arthur also hopes that his real risks were explained to him prior to his original surgery. A PSA of 41 ng/ml at diagnosis combined with Gleason 8 on biopsy is a clear indicator of high risk for advanced or micrometastatic disease.
Did anyone consider and discuss giving you husband adjuvant radiation therapy soon after his original surgery, and in association with the first cycle of hormone therapy?
If Arthur uses the PSA doubling time calculator on the Memorial Sloan-Kettering Cancer Center web site, it gives a PSA doubling time of 0.07 years (equal to just less than 1 month). Arthur is assuming that the PSA level of 10.96 on March 23 was taken before your husband restarted the Lupron. Is that right? If this PSA level was taken after your husband restarted the Lupron, then his “real” PSA doubling time might actually be even lower. Either way around, this is not good.
Your husband’s response to the re-initiation of hormone therapy will be critical to his potential long-term outcome. If the Lupron drives his PSA back down to near-zero and can maintain it there, then he may be able to stay in remission for some time, but clearly he is going to relapse soon after the hormone therapy is stopped again if nothing else is done.
Arthur’s entirely personal view is that your husband should be enrolled now into clinical trials using one of the new drugs in development — e.g., abiraterone acetate or MDV3100 or similar. Arthur’s sense is that he is inevitably going to become refractory to standard hormone therapy sooner or later, and that if the side effects of this therapy are significant and problematic, then the sensible thing for a good physician to do is to try something more aggressive to get your husband into a “real” long-term remission if this is humanly possible. The question is whether there is an appropriate trial in which your husband could be enrolled. Here is a link to information about one such trial for which your husband might be eligible. (It would depend on whether the enlarged lymph node you refers to qualifies as soft tissue disease.)
Exactly where your husband’s cancer may have spread to could be hard to determine. Arthur knows of three possible ways to identify the spread of the cancer: by bone marrow biopsy, by a form of MRI known as diffusion weighted MRI, or by specialized forms of positron emission tomomography (PET scanning). However, no currently available technique can be guaranteed to isolate a specific focus of extraprostatic, metastatic prostate cancer. Identifying micrometastatic disease is still something of a “shot in the dark” because there can be false positives as well as false negatives.
Thanks for your quick response. I would like to answer your questions:
My husband initially had a bone scan before his surgery, but it was negative, and he did have lymph node dissection done at the time of surgery and that was also negative.
My husband’s urologists did tell my husband that his cancer was aggressive, but did not inform him that his high PSA or Gleason 8 was an indicator of high-risk, advanced or micrometastatic disease. My husband and I discovered that through our research and from talking to experts such as yourself.
Three months after his surgery his PSA was 8.99, so therefore adjuvant radiation therapy in association with the first cycle of hormone therapy was not recommended by his oncologists in North Carolina. He did receive a radiation consult about a year into his treatment, when his PSA was undetectable, but my husband decided against it after discussing the side effects and the fact that our research told us that his cancer was most likely micrometastatic and the radiation would not help him long term. My husband also had another radiation consult in April 2012. He was considering radiation because a pelvic MRI at Sloan-Kettering showed that he had a slightly enlarged lymph node and a small tumor. He had a biopsy and it was normal for cancer so, with input from his doctors, radiation is not recommended at this time. We are waiting for his response to his current treatment and will take your advice into consideration.
You are correct that his PSA level of 10.96 on March 23 was taken before my husband restarted the Lupron. We will discuss possible clinical trials with his doctor at Memorial Sloan=-Kettering Cancer Center in June.
Thanks so much