You might recall me.

I am 49 years old. I had a robotic RP 6 months 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.

My post RP PSA 3 months ago was zero. I am scheduled for another PSA test in 1 month. I feel pretty healthy with minor side effects.

However, over the past 2 weeks I have developed blood urine in my urine that at times is quite noticeable. It is accompanied with minor discomfort. Urinalysis confirms this, with no white blood cells or bacteria present.

I am very concerned, could this be a sign of recurrence in my urinary tract? Could this be because of usual side effects of RP and injuries to the urinary tract? How normal or abnormal is this 6 months after RP?

What is the next step (as my surgeon is not communicating well)?

Thank you in advance,

Abbas

*****

Arthur responded as follows:

Dear Abbas:

Arthur is not aware of any specific reason why you would have blood in your urine that was free of bacteria and white cells. This is not a common side effect of radical prostatectomy that Arthur is familiar with, and if your surgeon is not communicating well, it may be that he is also puzzled by this condition, which may or may not be associated with your radical prostatectomy.

Arthur is not a doctor, and so it is hard for him to be able to tell you what the appropriate next steps might be, but cystoscopy (a visual examination of the urinary tract and the bladder) might not be a bad idea, to see if there is a specific source of the bleeding. You are right to be concerned about this, and Arthur would suggest that if your surgeon is unable to offer you a sensible strategy to move forward, you might want to seek a second opinion.

Arthur hopes this is helpful, but he is sorry he cannot offer more helpful guidance.

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

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.

—–

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.

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.

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!

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)?

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.

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.

—–

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.

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.

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.

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.

*****

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.

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

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.

Charlie Reilly