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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Good Day Arthur.
I am very happy to be here and that you are here again. I first communicated with you some 13 years ago.
After an orchiectomy 3 years ago my PSA in December 2008 was 2.02; in December 2009 it was 9.10. What are my options?
Thank you
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Arthur responded as follows:
Dear Max: Arthur says it is always good to “run into old friends” on line and be able to resume prior conversations.
Naturally Arthur is sorry to hear that your cancer has progressed and that your PSA is still rising despite the orchiectomy. However, the GREAT advantage you have over where we were 13 years ago is that there really ARE some good options. 13 years ago there really wasn’t much “on the table.”
Basically your options fall into six categories:
1. Monitor your PSA with care and get regular bone scans (say once a year) but do nothing until you really need to. This strategy minimizes the risk of additional adverse effects from additional forms of treatment, but on the other had is does certainly allow the disease to progress. The older you are, and the lower your long-term life expectancy, the better this strategy may seem.
2. Add other forms of “standard” hormone therapy on top of your orchiectomy — e.g., an antiandrogen such as flutamide or bicalutamide AND/OR a 5-alpha-reductase inhibitor such as finasteride or dutasteride (Avodart). The use of an antiandrogen AND a 5-alpha-reductase on top of an orchiectomy or LHRH agonist treatment is commonly known as “ADT3″ or three-drug androgen deprivation therapy.
3. Discuss the potential of docetaxel-based chemotherapy with your doctors (in a clinical trial or as standard chemotherapy in combination with predisone).
4. Consider a clinical trial of a development-stage drug such as abiraterone acetate (which is a new type of hormonal therapy that seems to offer considerable potential even in men with a rising PSA after orchiectomy).
5. Wait for Provenge (sipuleucel-T) to be approved — hopefully in may or June this year.
6. Seek out very different types of therapy which are available through physicians like Dr. Charles “Snuffy” Myers, who combines drug therapy with a wide spectrum of supplements and other forms of treatment.
As you can see, your options are fairly extensive, and so the most important thing that Arthur would suggest to you is that you find yourself a medical oncologist who really does understand this wide range of options and doesn’t just want to put you straight onto docetaxel (Taxotere) without any discussion of the opportunities.
It also has to be said that your age and your comorbidities (other health issues) and your reasonable “normal” life expectancy all play into the decision process here.
Arthur hopes this is of some help.
My PSA was 0.9 in 2007 and now it is 1.3. Nothing to worry about right? I’m 60 years old.
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Arthur replied as below:
Dear Keith:
Arthur says that there are three separate issues here that you (and other possible readers) should be aware of.
First, some degree of variation from day to day in PSA levels is completely normal. So … It is perfectly possible that if you went and had another PSA taken tomorrow, it would be (say) 1.1 ng/ml.
Second, if the two PSA tests were “run” at different laboratories (which seems very possible since they were taken 3 years apart), then they may not be strictly comparable. Different companies make different PSA testing equipment that is used by different laboratories. The only way to be sure that you have comparable PSA data from year to year is to get the actual lab reports from your doctor and check them to see if they were run by the same lab using the same equipment.
Third, while your PSA has (apparently) risen, Arthur would not be “worrying about this” on the basis of a single result. However, Arthur does think it would be wise for you to get another PSA test about a year from now to see if it has stabilized. PSA levels do tend to go up some (on average) as we get older because of the tendency of the prostate to grow with age.
One final point … When you do go for your PSA test a year from now, make sure you avoid sexual activity for 24 hours beforehand. Sexual activity can significantly raise PSA levels in the bloodstream.
I had my HIFU 4 months ago. I am experiencing some urinary problems. While I am not incontinent while going about daily life, when I do have to urinate I get an overwhelming sense of urgency just as I reach the bathroom door and often lose urine as I am undoing my pants.
I am told there are bladder training exercises that can help with this but have been unable to find information on this subject.
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Arthur responded as follows:
Dear Max:
Arthur is not a doctor, but he thinks it sounds very much as though you have a problem known as “urge incontinence” consequent to your HIFU. There are several ways in which this can be helped.
Pelvic muscle rehabilitation allows the male patient to improve pelvic muscle tone and prevent leakage using one or more of the following methods:
Kegel exercises are regular, daily exercises designed to strengthen the pelvic muscles and which can improve, and even prevent, urge incontinence. These exercises should be performed many times daily for several weeks, but it is very important to learn to do these correctly. It might be worth asking your doctor to refer you to a qualified physical therapist to help you to learn to do these exercises correctly. You can find the basic guidance about how to do Kegel exercises here on About.com — but ignore any of the sales pitches.
Biofeedback can be used in conjunction with Kegel exercises, and can assist some patients to gain awareness and control of their pelvic muscles.
Pelvic-floor electrical stimulation applies mild electrical pulses to stimulate muscle contractions. This should be done in conjunction with Kegel exercises.
Behavioral therapies can also assist some patients to regain control over their urinary functions. These behavioral therapies can be categorized into two groups:
Bladder training, which teaches patients to overcome the urge to urinate and gradually to expand the intervals between voiding.
Toileting assistance, which uses routine or scheduled toileting, habit-training schedules, and prompted voiding to empty the bladder regularly to prevent leaking.
Arthur suspects that a well-designed program of Kegel exercises may be quite sufficient to solve your problem. If it isn’t, a good physical therapist can probably combine the Kegel exercise training with either biofeedback or pelvic floor electrostimulation. Arthur believes that your problem should be eminently treatable.
I was diagnosed at age 47; PSA was 11 ng/ml at 1st test; after 30 days on antibiotics it went to 12. Biopsy was positive; 9 of 12 cores; Gleason score 4 + 3,
I received a 30-day shot of Lupron and had an RP done 2 weeks later. Gleason stayed the same; positive margins; stage T3; lymph nodes ok. Had first 3-month hormone shot when catheter was removed 3 weeks later; saw radiation oncologist; 2 weeks later, PSA 0.1. It was referred to as biochemical failure. I had 38 IMRT treatments and I have had 2 more 3-month shots of Lupron. My PSA was tested again last week. I don’t have the results back yet. I have a bone scan scheduled next week.
My question is, how accurate is the PSA after all the Lupron? It seems to me that it might give false hope. I have been having a lot of pain in lower back and pelvis area. This is the reason for the bone scan.
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Arthur responded as follows:
Dear Dennis:
Arthur thinks there are a number of things about what you describe that Arthur is having trouble understanding, but then Arthur may be missing a lot of critical information.
For example, Arthur does not understand why you received Lupron prior to surgery. There was a period some years ago when this was not unusual, but it is generally accepted today that hormone therapy prior to surgery has no particular value. The additional problem is then that, because of the hormone therapy before and after surgery, we have no idea exactly how well you may have responded to surgery or the subsequent radiation therapy.
Having said that, Arthur suspects that your most recent PSA test will show a value < 0.1 ng/ml and that your bone scan will be negative. The questions that will really need to be answered are: (a) Is your PSA stable at < 0.1 ng/ml? (b) How long you need to stay on the hormones?
Arthur suggests that you get back to him once you have your latest PSA result and the result of the bone scan.
The explanation for the hormone shot prior to surgery was my cancer was believed to be very aggressive and it was going to be 3 weeks before I could have surgery. My concern was that having 2 shots before my post-op PSA giving false reading that the actual PSA would have been higher without the shots. I have read that the hormones don’t work on all of the cancer cells and that some continue to grow without releasing PSA. That info came from Patrick Walsh’s guide to surviving prostate cancer.
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Arthur replied as follows:
Dear Dennis:
First Arthur thanks you for the additional information. It is absolutely true that hormone therapy will only have an effect of some types of prostate cancer cell — those that are defined as “hormone sensitive.” Other prostate cancer cells (the “hormone insensitive” ones) are not affected by hormone therapy. And you are quite correct that, because of the hormone therapy, we have no idea what your “real” (hormone therapy-independent) PSA level was after surgery.
We are left with the situation that all we are going to be able to know at this point is the accumulated impact of all three treatments over time (the RP, the IMRT, and the hormone therapy) at your next PSA test. Given this fact, there is very little point in worrying about what is “past.” We can’t go back to change that.
As Arthur said in answering your prior question. What we really need to know is the result of your last PSA test and the result of the bone scan when you get it.
The result of your PSA test that you are waiting for will, however, be an “accurate” measure of your PSA level based on all of your treatments to date. The crucial question for you is going to be whether that PSA level is stable and low. From now on, the aggressiveness of your prostate caner will be best measured in terms of the time it takes for your PSA to double: If it is less than 3 months, that will not be good. If it is more than 15 months and stays that way, you should be in pretty good shape. Anywhere in between those two numbers will come with risk that is dependent on how much closer it is to < 3 months.
I am 12 years post seed implants and IMRT. 8 months ago my PSA was rising and a lung lesion was noted. On biopsy my pleura was covered with tiny mets. I have no bone mets. I was begun on Lupron and my PSA has been 0.13-0.15 ng/ml every month since.
My question is: What is the scientific evidence for continuous vs intermittent ADT? Does it matter that I have mets in my lungs and none in my bones regarding the approach to ADT?
I am tolerating ADT quite well and remain very active at age 68. I have never had pulmonary symptoms.
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Arthur responded as follows:
Dear Bob:
First Arthur would like to say how sorry he is to hear that you had progressive disease so long after your primary therapy. Unfortunately this is a well known, if relatively uncommon, problem, and Arthur is pleased to hear that you are responding well to the hormone therapy.
The most recent revision to the National Comprehensive Cancer Network guidelines on prostate cancer management contains the following statement: “Intermittent ADT is a widely used approach to reduce side effects and does not alter survival compared to continuous ADT but its long-term efficacy remains unproven as large intergroup studies comparing continuous and intermittent ADT … are still ongoing.”
Arthur says that the bottom line to the potential of intermittent as opposed to continuous ADT is therefore a matter for individual discussion between the patient and his physician. What Arthur can tell you, however, is that customary practice has been for intermittent ADT to be considered reasonable in men who have been on ADT for a year and whose PSA level has remained stable at a near-to-zero level for at least 3 months or more. (You would appear to be well on your way to meeting those criteria.) Arthur therefore suggests that you ask your physician directly about the viability of ADT in your case. You might want to point out to him that new guidance published in the past 24 hours offers comment on the cardiovascular risks associated with long-term ADT, and while you may personally have no or very little cardiovascular risk otherwise, you presumably aren’t interested in increasing any minimal risk you may have.
If you do want to “test” ADT, it is also wise to agree up front with your physician that, when your PSA does start to rise again (because it almost certainly will at some point, which might be after weeks but might be a year or more), there is a predetermined PSA value at which you will go back onto ADT again.
Arthur hopes that this information is helpful for you.
Aloha Arthur,
Have you been following the testosterone supplements for aggressive PCa survivors whose “T” is lower than normal discussions/papers?
Do you have an opinion on this subject?
My urologist says that she is opposed to “T” supplements for high-risk PCa survivors.
Joe
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Arthur responded as follows:
Dear Joe:
Arthur has been monitoring this issue as closely as he can, but he feels that the available data at this time can — at best — be described as “spotty.”
Arthur thinks that one of the more interesting papers on this topic was a recent one by Leibowitz et al., and there is a report on that paper elsewhere on this web site. In that paper, the authors clearly seem to show three things: (a) that about half of the patients on TRT had a rising PSA and discontinued the TRT; (b) that for about 60% of the men with a rising PSA on TRT, their PSA fell again when TRT was stopped; and (c) that about a third of the patients did not have a rising PSA at all on TRT.
So it seems likely that, for a variety of possible reasons that are not entirely clear yet, some men can cope well with TRT and others can’t. What that means for you and your personal urologist would seem to Arthur to mean that you need to talk to her specifically about your desires and your risks. She may well disapprove of this form of treatment on a personal level, but it is your body at the end of the day. If you really want to try TRT, then Arthur thinks she should work with you to make this happen — with a clear understanding on your part that if your PSA will be monitored closely and that if it starts to rise you will agree to come off the TRT immediately.
Even with that proviso, there is risk — for you personally. However, you appear to appreciate that risk, and so Arthur thinks you should be able to try TRT if you want to.
Aloha Arthur,
In my research, I’ve found the following abstracts:
PMID: 19429438 [PubMed - indexed for MEDLINE]
PMID: 19649507 [PubMed - indexed for MEDLINE]
PMID: 19792969 [PubMed - indexed for MEDLINE]
Have you read these?
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Arthur responded as below:
Dear Joe: Arthur says that he had read one of these papers, not the other two, but these are just reviews that don’t really add anything to what Arthur told you in his last response.
What we need are data. What we need (and what hasn’t happened yet) is for someone to do a randomized and carefully controlled trial in which men who have been on hormone therapy for several years, and who have testosterone levels at castrate levels and a stable PSA, are given testosterone replacement therapy or a placebo, and we then measure their ability to recover certain clearly male capabilities (libido, erectile function, etc.) over time. This is the only way we are ever going to be able to find out (a) whether TRT actually works in men who don’t really know whether T is what they are getting or not and (b) whether the PSA starts to rise or not in what percentage of these men.
All of the rest of the published literature to date is about case series and speculation. We know what T can do in these men. What we don’t know is what the real risks are. Whether anyone is willing to fund that clinical trial is the second question that needs to be answered, because it will be expensive to do. Somehow Arthur thinks that may be rather unlikely in the current economy.
In any case, your issue wouldn’t get answered for 2-3 years, even if that trial started to get designed tomorrow. Your problem is a personal one about persuading a specific doctor that you are willing to take a risk that she is uncomfortable with. There are no really good data to share with her. There is only your will.
Aloha Arthur,
Thank you for your insight and perception. I was reading what I wanted in those abstracts. I did not see what you see as a non-involved observer. That said, I’m going to sit back a bit on this one.
Thanks,
Joe
Arthur, 26 Mar 2010
Thought I would give you an update on my situation that I discussed with you in Oct. 2009.
When I went back to my urologist’s I had already made the decision to have my prostate removed. He said that in my case he agreed. What I didn”t know was that the tissue on the left side which did not have a Gleason score was highly suspect for being cancerous, so that made me feel that I had made the right decision. Anyway, when I was getting a CT scan on 19 Nov 09 to see if the operation could proceed, there was a cancellation for the following Tuesday 24 Oct and I was asked if I would like to have the operation on that date. I was more that happy to take it so I wouldn’t have to think about it for another month. All preoperative tests were fine. I had robotic surgery on 24 October 09. Surgery went fine and I left hospital next day. Was home for Thanksgiving dinner. Went back to have cather removed 2 December 09. Was told that cancer had not spread beyond prostate.
After that date things have proceeded normally. I went back to the urologist’s on 19 March 2010 and my PSA was non detectable. I also have good control of my bladder. I’m very thankful that things went well and I hope that my follow-ups will still be good.
John
*****
Dear John: Arthur is glad to hear that everything went so well, and he also hopes that all your follow-ups will continue to demonstrate a good outcome.
Hi. My friend was just diagnosed with prostate cancer with a score of a high 7. Is that really bad? They just did a bone scan to make sure it did not go into his bones. If it did, how are his chances with a score that high. I was told it goes from 1 to 10. Thanks.
*****
Arthur responded as follows:
Dear Ms. Applegate:
Arthur says that the “score” you are referring to is what is known as a Gleason score, and you are (nearly) correct, in theory Gleason scores can be as low as 1 + 1 = 2 and as high as 5 + 5 = 10. However, for the past few years, for the vast majority of patients — and in particular for all patients who are diagnosed with prostate cancer based on a prostate biopsy — the lowest Gleason score that is assigned is actually 3 + 3 = 6.
Since your friend has been diagnosed with what you describe as a “high 7,” Arthur thinks that that would mean a Gleason score of 4 + 3 = 7. The 4 and the 3 refer to the Gleason patterns or grades of the two most prominent areas of tumor found on biopsy. For more information on Gleason scoring, you might want to click here.
A Gleason score of 4 + 3 = 7 is not wonderful, but it could be a very great deal worse. Men with a diagnosis of prostate cancer and a Gleason score of 4 + 3 = 7 regularly receive effective, curative treatment for this condition. However, there will be a lot of decisions needed over the coming weeks.
Several other pieces of information need to be carefully considered in association with your friend’s Gleason score in order to make good decisions about his treatment. These pieces of information include: his age; his PSA prior to diagnosis; his clinical stage (which is likely to be T1c); the number of biopsy cores that the urologist took to make his diagnosis (probably somewhere between 6 and 12); and the number of those biopsy cores that actually included cancer cells.
The fact that your friend has had a bone scan is very likely just a “preventive” measure unless he has either low back pain or a PSA of about 20 ng/ml or higher. In most men today, diagnosed as they usually are — with early stage prostate cancer, the chances for a positive result on a bone scan are minimal.
If you get some more of the information mentioned above, please feel able to come back and leave Arthur another message. Alternatively, if you join The “New” Prostate Cancer InfoLink Social Network, and leave relevant information and questions there, there will be people who can help you to understand what the situation is and how to think through the next steps.
I had a Gleason 10, stage T3 tumor; had radical prostatectomy done at Johns Hopkins in Aug. 2009; lymph nodes were negative. In Nov. 2009 my PSA was 0.2.
I then had radiation therapy done for 42 days starting in Dec. 2009.
Bone scans in July 2009 and April 2010 were both negative. In May 2010 my PSA was 1.7.
I am planning to start hormone therapy in June 2010. What is my life expectancy?
Thank you.
Charles Tosi
*****
Arthur responded as follows:
Dear Charles:
Arthur is sorry. There is no way at all that Arthur can reasonably project your life expectancy based on the data you have provided. Your doctors at Johns Hopkins might be willing to make an estimate, but even they are likely to tell you that they will only know if and when your PSA starts to rise again on hormone therapy.
For starters, Arthur simply doesn’t know enough about you and your family history. (You haven’t told him how old you are or if you have any other relevant medical history.) However, more importantly, Arthur has no clear idea how well you may have responded to the surgery and the adjuvant radiation therapy.
Let’s review what you and Arthur do know.
You were diagnosed with aggressive and seminal vesicle positive prostate cancer. (But Arthur doesn’t know your pre-surgical PSA.) Obviously, this is not good. Gleason 10, SV+ prostate cancer comes with a high risk for progression. Obviously your cancer did progress, because after radiation therapy your PSA in May 2010 was 1.7 (after falling as low as 0.2 ng/ml following surgery).
If Arthur knew what your PSA doubling time was since your radiation therapy, he might be able to make some sort of assessment of your risk for progression on hormone therapy, but he can’t tell your PSA doubling time from the information you have been able to provide.
Also … a very great deal is now likely to depend on just how well you respond to the hormone therapy. Men have been known to live for 15-20 years on hormone therapy … but other men progress very rapidly. Again, until we know how you respond to the hormones, it will be difficult to make any sort of projection of your life expectancy.
So … Here is what Arthur thinks is the sensible way to think about all of this. You are still at high risk for progressive disease. If you were to have rapidly progressive disease, you might have a life expectancy of only 3-5 years. Everything after that could therefore be seen as a benefit, and a year from now, if your PSA is zero on hormone therapy, you might be able to reassess the risk. But for the time being, make the most of life (which doesn’t mean spending every penny you own, because you may discover you are going to be around for another 10-15 years!).
Arthur thinks that this really isn’t about your life expectancy at all. It is really about what you want to try to accomplish in your life. So make sure you have set 5 goals, then go out and achieve them one at a time. Once you have achieved the first 5 goals, set another 5, and so on. That way — whatever happens — you will know you have tried to do the things you think are worth doing. What more can any of us do with our lives? Arthur is all too well aware that every time he drives out onto the road in the morning, he is at much greater risk for mortality than from any form of cancer. And he has a lot of goals to accomplish. Maybe some of your goals and some of Arthur’s goals can be achieved! Arthur knows he will never achieve all of his — but for a variety of reasons he stopped worrying about that nearly 40 years ago!
Arthur:
I have had questions for you before but today I have a new one:
I have prostate cancer and when I had my prostate removed the cancer was outside the capsule so went through radiation and hormone deprivation for 9 months. My question is this: My urologist has been doing the ultrasensitive PSA test but I have lost my insurance for a few months and am wondering if a regular PSA test would be okay because of the cost difference. My PSA was undetectable in January. Just thinking I should get it checked.
*****
Arthur responded as below:
Dear Dennis:
Arthur says that you would be wise to go on getting PSA tests in order to monitor your PSA level. He thinks it should be fine to just get a regular PSA test done if that is what you can afford. The ultrasensitive tests can measure PSA levels down to as low as about 0.03 ng/ml. By comparison, a regular PSA will only be able to tell you your PSA level with accuracy down to about 0.1 ng/ml. However, so long as your PSA is effectively undetectable using either test, you should be in good shape, and that’s what you really need to know.
Thank you Arthur. That is what I wanted to hear.
Aloha Arthur,
Last month, April, I had what the urologist calls a flare in the urethra, 2.5 years after EBRT. It does not hurt to hold urine in the bladder, but if urine gets into the first sphincter (?), it is very difficult to hold it back. Over a period of 2 weeks, the pain level went from mildly irritating, to a 5 which happens toward the end of a void, and stayed at a 3 between voids. This lasting pain between voids feels like the whole urethra (out to tip of penis) is involved. Three pee-in-the-bottle tests (two with culture) show no growth, plus 10 days on Cipro. The pain is somewhat lessened by using aspirin or Tylenol, which help me get back to sleep, but does nothing for the pain after the void. Stronger pain medications, like vicodin and oxycodone upset my stomach and do not help the voiding pain. This pain has occurred previously — after the lidocane used for a cystoscopy wears off (four times). After a hemorrhoid operation and cystoscopy, a couple of years ago, only morphine IV would control this pain.
The urologist has referred me to a pain clinic; she feels that this pain is a flare and will go away soon. My opinion is that the urethra is falling apart. After a few weeks, you become afraid to use the toilet. By luck, I had an appointment with the oncologist a couple of days after the void pain reached 7. I showed him a 48-hr record of toilet trips; we discussed the pain, and we started a treatment plan. It has been over a week, and yesterday my fear of the toilet went away and I woke up happy.
In your vast experience, do you have any idea what is going on with respect to these urethra pains? The oncologist knows how to treat the pain, but what is really happening?
Back when the pain got bad, I suggested using a catheter to allow the sphincter(s) to heal. The doctors’ (several) opinions were mixed, 50% do it, 50% just make it worse. I chose to do it. The first catheter leaked, the bypass was enough to soak a paper towel with each spasm. In ER the first catheter was reseated, still leaked, and a larger catheter inserted. When I got home, it started leaking and I removed it. When urine got into the sphincter, a series of contractions/spasms would start, which started the pain cycle.
I know you can not predict the future, but it looks sorta glum from this view point.
I appreciate the work and help that you are performing on this web site. Thank you for your time,
Joe
*****
Arthur responded as follows:
Dear Joe:
Arthur has to say that he is sorry but he has no idea exactly why this happens to you. Could this be some form of acute cystitis? Perhaps. Could it be a neurological response to some form of stimulus? Yes it could. Unfortunately, however, Arthur is just unable to provide any clear rationale for this set of painful symptomatology.
The pain clinic is a good idea. Go keep that appointment. They may be able to help you either prevent the onset of the pain or develop an effective plan to minimize it rapidly once it starts. Either one of these options is likely to be at least as good an option as worrying about exactly why it occurs — which may be intellectually stimulating but practically irrelevant.
How/where do we find a physician(s) aggressively committed to treating potency issues? My husband’s only 44 and totally functional today. We’re working on our second anniversary of inconclusive results (3 negative biopsies, positive PCA3, scary free-PSA, roller coaster PSAs), so it seems unlikely (per our current physician — renowned in the field, but doesn’t really seem to give a rat’s patoot about potency) that if/when they do find a cancer that it’s going to fall into the “imminently dangerous” category.
We want to deal with someone prior to selecting a treatment method that is as committed to ensuring continuation/recovery of potency as we are. A canned, off-the-shelf, one-size-fits-all protocol will not be sufficient for us. It’s not okay to simply prescribe a bottle of Viagra and say “Come back to me in two years if everything’s not working.” Then you come back in two years to hear, “Oops, too bad — but you’re not dead, that’s what’s important, right. Don’t you have your priorities straight?’
To make an informed decision about treating the cancer, we need to first identify how to successfully deal with this issue, including any useful pre-treatment therapies. Are there physicians out there in the world ANYWHERE who are men enough to not hide behind the “life saving” aspect of prescribing treatment methods that destroy “quality of life” (a derisive term, if there ever was one) and take responsibility for ameliorating what they’re so hot to destroy?
I just want to have one single conversation with a physician who’s committed to potency, is willing to acknowledge the importance of potency in a 44 year old man’s life, and doesn’t humiliate, dismiss, and degrade a couple for caring about the impact of this hideous array of bad choices for medical “care” — just ONE conversation.
*****
Arthur responded as follows:
Dear Tracy:
Arthur suggests that you try to get a phone consultation with Dr. John Mulhall at Memorial Sloan-Kettering Cancer Center. Dr. Mulhall’s practice is entirely focused on sexual function with a strong emphasis on sexual function after treatment for prostate cancer. He also has a book out that you can find on Amazon.com called Saving Your Sex Life: A Guide for Men with Prostate Cancer.
Dr. Mulhall does not treat prostate cancer himself, but he does work very closely at MSKCC with the physicians who actually carry out treatment.
One thing I forgot to ask, where can I find the body of literature on post-RP potency that includes disaggregation by age and sexual function prior to treatment, and controlling for other health issues. I’m sick of hearing clinical anecdotes about how my husband should be “fine, just fine. It’s only men who had ED issues before surgery that have permanent impotence post-surgery” without any evidence to back up these statements. If this were true, it seems like the industry would be shouting it from the rooftops: “It’s okay for men <50 who are not overweight and who had no problems with ED prior to surgery to have RPs. They'll be fine. They all come back.' If this, in fact, were true, wouldn't there be billboards advertising these results? Wouldn't they start doing RPs prophylactically to spare men ever having prostate cancer?
Please give me something I can actually learn something realistic from!
Arthur responsed as follows:
Dear Tracy:
Arthur hears the frustration you are expressing, but he also thinks he is hearing a passionate desire for guarantees in an area where no one can give you those guarantees.
If Arthur is understanding what is going on here, your husband has not been diagnosed with prostate cancer yet. He is just believed to be at very high risk. So … even if he is diagnosed with prostate cancer, why don’t you look at some of the first-line therapies like CyberKnife radiation and brachytherapy that are known to come with significantly lower risk for post-treatment erectile dysfunction compared to surgery.
Every single patient is different when it comes to treatment. No one is going to be able to make absolute gurantees to you about your husband’s post-treatment responses.
What we know is that some treatments present less overall risk for sexual dysfunction and have almost the same outcomes as surgery based on the available data. If anyone can direct you to good information on the available litereature on this topic it would be Dr. Mulhall, as mentioned in answer to your prior question. However, Arthur has to tell you that he does not believe there IS a really good body of data on this topic, with the patients broken out by age, stage, etc.
Tracy:
You have a very valid point. As a prostate cancer survivor, I was 47 when diagnosed and there are definitely problems with just “cut it out, irradiate, and you should live.” I had no ED problems post-RP. Of course, I took Lupron for 9 months — which ended 4 months ago. I am hoping to see some improvement, but do research this thoroughly. Take it from someone who is there.
Are there any studies comparing the effectiveness and side effects of Casodex 150 mg daily versus any of the Lupron type meds?
Thank you
*****
Arthur responded as follows:
Dear Dr Sharkey:
Arthur says that he is not aware of any studies that have ever directly compared the effectiveness and safety of monotherapy with bicalutamide 150 mg to monotherapy with an LHRH agonist — in any category of patient. Indeed, Arthur would point out that FDA has never approved the 150 mg dosing of bicalutamide in the USA, although (based on the same clinical trial data) this dose level was approved in Europe.
I had LRP in January of 2008. My cancer recurred about a year later. I was almost back to normal in the ED department. I had 37 IMRT treatments in June of 2009. Since then I can only have an erection using injections. Viagra does not work. Are there any cases of the ED issue reversing. I am about 2.5 years post-surgery.
*****
Arthur responded as follows:
Dear Joe:
Arthur says he is sorry to hear about your cancer progression and the ED problem. Return of erectile function after second-line radiotherapy depends on all sorts of things, and it is certainly the case that it can return (to some extent) even at 3 years. However, a lot depends on exactly what was radiated at the time of your treatment and how much radiation was delivered. Also, Arthur has to say that if erectile function is going to return, it usually shows signs of happening before this. So Arthur has to tell you that your chances of a meaningful recovery of erectile function at this stage are liable to be limited.
Hi, I am 70 years old. Last year I had a radical prostectomy; at the time my PSA was 7.3 with a Gleason score of 10 and stage T2 cancer. My PSA post operation was 0.2. Two months later I had radiation therapy for 42 days. Four 4 months later my PSA was up to 1.8 and I started hormone therapy. My PSA is now 1.0 after 1 month. I have had two bone scans, both of which were negative.
I want to take additional action. I researched and found that taking MCP-C (modified citrus pectin) was recommended as additional cancer treatment to suppress cancer metastasis and can lenghten PSA doubling times in 8 to 10 men with recurrent cancer. This is a Columbia University study. I would like your advice!!
Thank you, Charles
*****
Arthur responded as follows:
Dear Charles:
Arthur says that over the years there have been a sxmall number of studies suggesting that modified citrus pectin may have an effect on the PSA kinetics of patients who have elevated PSA levels after first-line therapy for prostate cancer. Arthur is not specifically aware of the Columbia University study you refer to, but here is a link to a small study by Guess et al. published in 2003.
What Arthur is not aware of is a large, randomized, double-blind trial that clearly proves that MCP has such an effect. Nor is Arthur aware of any data that clearly demonstrates any relationship between the use of MCP, the proposed effect on PSA kinetics, and an actual clinical outcome (e.g., extended time to prostate cancer metastasis or overall survival). In other words, Arthur is not aware of any really helpful documentation of a significant clinical effect of MCP on prostate cancer progression.
Having said that, MCP in reasonable quantities is not known to have any major adverse effects, and so if you want to use it, it is probably relatively safe to do so. Some patients do seem to suffer from mild abdominal cramps and diarrhea when using MCP. You would be well advised to let your doctor know that you intend to do this, just in case he is aware of anything about your clinical condition that might make this inadvisable.
Here is another link with a little more information for you.
Aloha Arthur,
I kept the Pain Clinic Appointment. The doctor was a bit frustrated that urology had made it clear that they could not help me. He has agreed to discuss this problem with my uro doc to try to pry some information from contacts and fellow urologists at well-known medical centers. He also suggested hypnosis, which when I was seeing doctors that are supposed to do that, said NO. That was also frustrating …. “Like what are they thinking!!” So he is working on that also. Acupuncture was also suggested, but my HMO does not cover that, and I intend to try it on my own as my PCP thinks highly of a fellow that practices in our town.
So life continues, not completely pain free, but no longer afraid to use the toilet.
Thanks,
Joe
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Arthur responded as follows:
Dear Joe:
Alas, when it comes to pain management it is Arthur’s general experience that one specialist’s opinion is just that — one specialist’s opinion. One of the problems with pain management is that is very much still a space in which medicine appears still to be far, far more of an art than a science. Anyway, at least you seem to have found someone who thinks they may be able to help you, and that at least is a step in the right direction.
Dear Arthur,
I’m 68 and was diagnosed with prostate cancer earlier this year from a DRE as my PSA was 2.32. Biopsy 9/12 positive (5 @ 100%) + PNI, Gleason 3 + 4, tests show no metastasis outside the local area but indicate probable ECE and SVI (right). Been on ADT3 for 2 months; PSA 0.3204, Testosterone 20, and doing okay.
Considering radiation at a Center of Excellence with top doctors. Primary treatment will be either IG/IMRT 81 Gy … or … high dose rate brachytherapy + IG/IMRT 45 Gy. I’m also assessing radiation of the local lymph nodes. Can you provide any guidance regarding the options I’m considering, particularly the possible benefits of HDR BT with my high volume, localized (hopfully) prostate cancer?
Warm regards,
Phil
*****
Arthur replied:
Dear Phil:
Arthur says, first, that he is sorry to hear that you are having to deal with what certainly appears to be a case of locally progressive and high-risk disease. On the “good” side, you seem to have been doing all the right things, and it does indeed sound as though you are being cared for by physycians who have a high level of expertise and experience in manging patients with similar clinical profiles.
With respect to your specific question, Arthur is not aware of any really good, prospective, comparative studies that can tell us whether IG/IMRT at 80-85 Gy alone is any more ore less effective or safe than HDR + IG/IMRT at 45 Gy. The evolution of radiotherapy as first-line treatment for prostate cancer like yours over the past decade has been massive — particularly as it relates to the accuracy with which the radiotherapy team can now target radiation to the organs that most need it and “spare” the surrounding tissues (including particularly the bowel). So … the question that Arthur would put to the radiation oncology team is, “Will you be using the Calypso or some similar methodology to target external beam radiation to the prostate with a very high degree of accuracy — even accounting for organ motion during a specific radiation session?” Assuming that the answer to that question is “Yes,” which it almost certainly will be, Arthur thinks you then need to say to the specialists … which of these two options — in your experience and opinion — is the most likely to have a very good oncological outcome with the least possible risk for complications for ME?
At the end of the day, medicine is still as much an art as a science. It is the ability of the specialists to use the equipment available to them that will detemine your personal outcome — not just the thereoretical capabilities of the equipment.
Hi Arthur,
I have a question about the history and politics of the term “cancer” when applied to prostate cytopathology.
At what point, and for what reason, did Gleason sums of 5 and below stop being called “cancer”?
My understanding is that, nowadays, if 1 of 12 biopsy cores comes back 5% Gleason 6, this must be reported as “cancer”. But if 12 of 12 cores all come back 100% Gleason 5, this must NOT be reported as “cancer”.
Is my understanding accurate? If so, who makes such rules, and why are they held to?
Thanks in advance for whatever light you can shed.
/Paul
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Arthur responded as follows:
Dear Paul:
Arthur says that you are partially but not complete correct.
Historically there have always been two ways that cancerous cells have been identified in prostate tissue while the prostate is “in situ”: (a) from “chips” of prostate tissue extracted when a patient had a transurethral resection of the prostate (a TURP) and (b) from tissue in prostate biopsy cores.
In today’s world, the vast majority of men find out they have prostate cancer as a consequence of a PSA test and a subsequent biopsy. But back in the 1960s, when Dr. Gleason was developing the Gleason grading system, a very large percentage of the men diagnosed with relatively early stage prostate cancer were so diagnosed after a TURP.
Arthur also notes that the area of the prostate generally sampled during a TURP (the transition zone) is different from the area most sampled during modern biopsies (the peripheral zone). Again, we have learned an enormous amount about the anatomy of the prostate (much as a result of the work of the late John McNeal) since Dr. Gleason developed his pathological staging system. One of the things we know today is that most clinically significant adenocarcinomas of the prostate develop in the peripheral zone.
Arthur doesn’t lay claim to being any great expert on the pathology of prostate cancer. However, what he does know is that just a few years ago (in 2005), the International Society of Urological Pathology (ISUP) made some very specific decisions about the assignation of Gleason grades and specifically differentiated between cancers identified using a TURP and cancers identified by biopsy.
In the case of cancers identified by a TURP, the full range of Gleason patterns or grades can and should still be used. So, if you have a TURP, and cancer is found on pathological examination of the “chips” removed, you cancer can still be assigned to any one of the full range of Gleason patterns (from 1 to 5) and so it is still possible to have a Gleason score anywhere from 2 to 10.
By contrast, for cancers identified by biopsy, ISUP was in consensus that a minimum Gleason pattern of 3 should be assigned to any cancer identifiable, which of course means that the Gleason score can be no lower than 6.
A summary of the findings of the 2005 consensus conference can be found on line. A detailed discussion of the topic can be found in Urologic Pathology (published in 2009 and available on line through Google Books).
It is worth noting that it was at the same consensus conference that ISUP agreed than any amount of tertiary Gleason pattern 4 or 5 in biopsy or TURP tissues should also be reported by the pathologist.
It is Arthur’s understanding that this guidance from ISUP is now rigorously followed by the vast majority of experienced pathology laboratories.
Thanks Arthur for you personal concern for me and your supportive comments. I will be discussing the decision with my doctors, family, and friends over the next few weeks, then I’ll finalize the decision and move forward.
Warm Regards,
Phil
I take it that this site is no longer operative.
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Arthur responded as follows:
Dear Don: Arthur wonders why you would get that idea.
I am 52 years old … healthy in all respects, do not drink excessively, do not smoke at all, and I am not overweight. I work out religiously.
My recent physical revealed a PSA score of 5.1, later confirmed in the urologist’s office. I have no other symptoms and the DRE is normal and has been my entire life. The urologist wants to perform a biopsy. I am not convinced I need one after all I have been reading. I’d prefer to wait until January 2011 and see what the score is then. It appears –- from all I am reading — that the overwhelming likelihood is that there is little to nothing wrong with me, AND if I do have some form of fast-growing cancer (which is very unlikely) I am done anyway. Just not convinced AT ALL that I need a biopsy.
By the way before BOTH PSA exams referred to above I had ejaculated within the 12 hours prior to the blood test. I did not know — until after the second test — that such activity might elevate the PSA. I am just simply not buying the “hysteria” that appears to exist over the prostate gland. I willingly undergo a colonoscopy every 3 years because my mom died of colon cancer at age 72. I do not have any relatives with prostate problems. My dad is alive at 75 and no issues. Welcome comments/thoughts.
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Arthur responded as follows:
Dear Mr. Jones:
Arthur understands your reaction to your PSA result. However … It would seem to Arthur that there is a relatively simple answer to your situation. Just go back to your urologist or your primary care physician. Tell him/her about the fact that you had had sex within 24 hours preceding each of the two prior blood draws for the PSA tests and ask if you could have the test repeated. If it is still 5.1 ng/ml or thereabouts, then at least you know the real situation and then you can decide whether to have a biopsy or not based on accurate data.
You are certainly correct that there is an enormous amount of “sturm und drang” over how to interpret PSA data. However, many 40- to 55-year-olds of Arthur’s acquaintance who were diagnosed with intermediate- and high-risk prostate cancer based on PSA levels similar to yours would consider that your reaction is delusional. (Please note that Arthur himself is making no judgment. He is merely aware how others might react to your viewpoint.)
Arthur would, very gently, point out that it is not unusual today for men with aggressive, high-risk prostate cancer that is diagnosed early to have complete remission of their cancer, so he would caution that curative therapy is successfully administered for this type of cancer on a regular basis today — although certainly not for all patients.
Of course, as you suggest, you could also just tell the urologist that your preference would be to return in January and get another PSA test at that time (at least 48 hours subsequent to sexual activity). It is, after all, your prostate and no one else’s! No one can or should force you into having a biopsy against your will.
I have blood scheduled to be drawn on September 1, 2010. If scores remain high, and I suspect they will, back for a biopsy. Thanks for the advice. Calling me delusional worked.
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Arthur responded as follows:
Dear Carlton:
And on the other hand your PSA may well come back at 3.3 ng/ml (or thereabouts). Then you will have to think really hard about what you want to do. Arthur isn’t even sure what he would do today if he had a PSA test that showed his PSA was 3.3 or so at age 55. (But since he is now well over 60 he no longer has that problem!) None of this, unfortunately, is as easy as we might like it to be.
If my 9/01/10 blood test comes back PSA 3.3 I am NOT having a biopsy. Arthur, I genuinely appreciate your candor and good judgment — BUT — I am detecting a bit of mass hysteria over this entire subject. That is not directed at you. A part of me says the only thing wrong with me is that I am foolish enough to have a physical every other year … otherwise I’d be one of the more healthy 52-year-old men you ever knew AND would know nothing of this PSA score that may be of no consequence. This is a very frustrating situation for me. I am a lawyer and I understand many questions do not have “yes” or “no” answers. This prostrate issue is definitely one those where it appears a yes or no answer is not possible. I believe the train of thought that says this is an over-diagnosed and over-treated “problem.” May be I am wrong — but I feel like I am the subject of a medical profession that is bound and determined to find a problem where it is very likely no problem exists.
Arthur responded as follows:
And Arthur can confirm that you are certainly not the first person to feel that way. Neither will you be the last!
I’ll keep you posted if you care. Is it virtually a certainty that it will not be one biopsy but a series of biopsies? As you may be able to detect, I am very suspicious, frustrated, and even angry over this. I have worked very hard my entire life to maintain good health. I am very dubious of this prostate business. But thanks for your input.
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Arthur responded as follows:
Carlton:
Arthur fully understands and is sympathetic to your suspicion, your frustration, and your anger. As he has pointed out to others before you, the fact that 1 in 6 men will have a diagnosis of prostate cancer in their lifetimes also means that 5 in 6 won’t! It would be nice to find a way to ensure that those 5 in 6 men never needed to have a biopsy at all. In that context, you may also want to be aware of a report on the Reuters news service this morning. We have always been aware that there are risks associated with prostate biopsy, and Arthur has never been an advocate for either saturation biopsies or multiple biopsies without very good reason because of these risks.
Arthur should be around for a long time if you have future questions. As someone who was also well above average health status well into his 50s, Arthur would also note that it didn’t stop him for have a serious heart condition “out of the blue” when he was just a little older than you. Unfortunately “S*** happens” even to those of us (lawyers included) who have made great efforts to avoid the depredations of the aging process!
If Arthur was in your shoes, he would take one biopsy at a time — and only if it seemed justified.
:O)
Your correspondence has been very helpful. The article referenced above, which I have printed, makes me even more suspicious/angry about this whole damn process. If I am incontinent and having problems with an activity I love to perform I’d about as soon be in a coffin. I’ve talked to a number of men who seem about evenly divided over whether they would have the biopsy if in my shoes. If my score tomorrow is under 5 I really do not think I will have the biopsy. Thank you so much for your thoughts. They were enlightening.