Evaluate your urologist - do not hesitate to make a change.
I have been following the site fairly carefully since being diagnosed in 2009 (PSA fluctuating between 4.76 and 5.85; Gleason 6 - PSA has continued in that range, G6 was confirmed by a second biopsy, with a 3rd advised for this fall). After having consulted an urologist, a radiologist, and a medical oncologist, I decided to pursue AS.
The primary reason for my writing at this time, shortly before meeting my new urologist, is to encourage everyone to take care in assessing the appropriateness of their urologist. Mine has been very supportive, in fact at the beginning advising me to pursue AS, something that was eventually reinforced by the MO. At the same time, there were a few things that bothered me: without telling me in advance, he was not present at either of the biopsies (he had led me to understand that he would be, and did not let me know in advance that he would not be), and he was never able to discuss seriously any of my questions about diet, nor did he suggest any way in which I might go about getting more information (I already did know about several options, but wondered if he might have other, potentially complementary suggestions). For me, the straw that led to my switch was at our last meeting: in addition to the DRE, the only other thing we talked about was the PSA - he indicated to me that the PSA was a 4.6, approximately the same number that it was when I first visited him; he recommended the "annual" biopsy, and I said I would think about it, since I had horrendous times with both biopsies I had already undergone. When I checked out, I did as I always did - asked for a printout of the PSA report - and when I saw it I asked the secretary if this was correct (a 5.25), since the doctor had told me otherwise; she phoned him, determined that it was correct and he had apparently erred in his discussion with me; she asked me if I wanted to speak with him, and I said "no," because I am convinced that he should have insisted on speaking with me, should have apologized for the misreporting, and then put the "new" reading into context. Later that day I spoke with my PCP, told her about this experience, said that I was planning on finding a new urologist, which she completely understood; she asked if I wanted a recommendation and I said "no," since I was already planning on getting in touch with the institution where I had seen the MO. And so that is what I did.
I have considerable confidence in the (to me still unknown, other than in name and the institutions he is affiliated with) urologist I will be seeing, since he is connected with the institution where my previous wife had been treated for stage IV breast cancer for 9 good years. And I know that I will have access to the MO who I had seen as part of the initial evaluation process, and in her I have complete confidence -- or as much confidence as one can have for someone involved with the art of medicine.
So - in summary - evaluate your urologist with care, be sure that s/he is clearly on your side, and is willing to help you get answers, to the extent possible, for every question you have. You cannot hesitate about seeking a new doctor if it seems to be the way to go -- you and your family/caregivers/whomever have more invested in the course of your AS or WW or treatment than anyone else. The best doctors involved in the field of oncology, and I have observed many through the years of my wife's treatment, make it clear in many ways that they are by your side, that they are committed to assisting you in every way possible to maintain a quality of life that you would choose.
(Note: my new urologist -- first meeting at Dana Farber Cancer Institute was on August 20, 2012 - strikes me as outstanding; articulate, demonstrated excellent general comprehension of issues related to AS, expressed his desire to avoid surgery if at all possible, and has scheduled an MRI to supplement other diagnostic information.)
My most recent PSA result was in December, 2012, at which time I also had an MRI Diagnosis with an eCoil, the results of which indicated nothing of concern. My third biopsy - first with my new urologist after repeated urging and a considerable delay on my part -- indicated no cancer in 12 cores, i.e. no cancer found in the samples taken, which is not the same as saying there is no cancer present. I have not modified my diet, which remains "heart-healthy." Prior to the original diagnosis, we had already significantly reduced our red meat consumption; we eat more seafood than anything else, although chicken, pork and lamb continue to form part of our diet (and that includes eating out). My next PSA test will be in late November, preceding a December meeting with my urologist.
My experience to date has reinforced a perspective that I developed quite some time ago. Medical practice, in particular diagnosis and evaluation, is both art and science. As far as I am concerned, the skeptical practitioner, especially in the field of oncology where so much is in development, is the "best" practitioner. But that is my view - and it is imperative that you have confidence in whoever you have chosen to be your doctor. For me, that means having as a doctor a person who is able to live and act with ambiguities and uncertainties, and be clear about the uncertainties. E.g. when I finally acquiesced to my urologist's request that I have another biopsy (my third since August, 2009) and arrived for a meeting to consider the results, which were as positive as they might be, he was ready to discuss my concern that while this biopsy found no indication of cancer it only meant that the evidence of cancer was still minimal, and that no indication of cancer did not mean that there was no cancer there.
During the time I have been involved in AS, I have heard about the number of men who, as soon as they were diagnosed wanted only to be rid of cancer, giving little if any consideration to the options available, including the pros and cons of whatever choices may be available. (Admittedly, these are men who are clearly in the early stages of prostate cancer.) Very few are the men with whom I am familiar who chose to get 2nd and 3rd opinions, or who chose to go beyond the realm of the urologist. Very few also are the men with whom I am familiar who were willing to seek a urologist who was willing to explore options. I remain convinced that each of us needs to be open to considering options, and needs to be comfortable with the doctor in whose care we choose to be.
Initial diagnosis: August, 2009.
After my last (third) biopsy, my doctor recommended that we meet one year later. I met with him this past June, at which time we discussed my PSA, which had dropped to 4.89, just about where it was 2-1/2 years ago (Dec., 2011). (The PSA range during the past 5 years has been between 4.69 and 6.16, with the last being 4.89.) At this time, we discussed my situation, and he recommended another biopsy to be performed in the summer of 2015, i.e. 2 years after the last one, which for him is standard procedure. Remembering my unhappiness with biopsies, he posed as an alternative more frequent PSA tests, i.e. every 6 months, and barring any reason to be concerned (i.e. an exceptional PSA indicator), putting off the next biopsy until the summer of 2016. Of the two courses he has proposed, the latter is the one I have opted for - with the biopsy planned for 2016 to be reconsidered at a later date.
Given no indication of disease progression at this time, and no other prostate-related concerns, I intend to continue with the diet and exercise I have been adhering to since before my initial diagnosis 5 years ago, in the summer of 2009.
October, 2009 was the date of diagnosis. The most recent PSA (June, 2015--another test will occur in a week) result was lower than the result that led me to a urologist. My current urologist is completely supportive of the active surveillance process, watching for changes in PSA as indicative of the course the disease is taking, with semi-annual tests, and requesting that there be biannual biopsies (the last was in the summer of 2013). We have debated the biopsy issue because, for me, it has been a very distasteful experience and, although reluctant to do so, he agreed to put off the biopsy for one year provided I continue with the semi-annual PSA test, rather than shifting to an annual test. I concurred with continuation of the semi-annual PSA--and said that "I would think about another biopsy."
Cognizant of the weakness of the PSA test, my urologist continues to argue that it is rate of change that is an important indicator. And a negative rate of change, i.e. a dimunition, indicates to me that a biopsy is not called for. (As an aside, I am certainly aware that my 12 core biopsies may miss cancerous cells; on the other hand, my wife has become "convinced" that the biopsies have removed some, if not all, of the cancerous cells.) The urologist continues to state that "active surveillance" by definition means doing both PSA testing and biopsies on a regular basis. This 75-year-old may insist on following his own version of active surveillance--perhaps no additional biopsies until the PSA reaches or exceeds the highest result, which was 6.16 in December of 2012, i.e. three years ago.
I am fortunate that, when first diagnosed, two of the three doctors with whom I spoke encouraged "active surveillance" (only the radiologist saw active treatment as the only real choice). I have heard through friends of people who were unhappy that their immediate reaction to diagnosis was active treatment, rather than "active surveillance" until rate of PSA change indicated a potentially significant issue. I have been fortunate to have had urologists who were supportive of whatever course of action made sense to me. But I have also had reinforced a recognition of the need for me to take responsibility for my own treatment choices, and a need to be assertive in conversations with doctors, or in pursuing them when consultation seemed necessary. A misunderstanding this past summer led me to begin to explore a second shift in urologists--which, I am glad, proved to be unnecessary when I clarified the misunderstanding. At this point, I continue with my conviction that the patient must be an active participant in the treatment process--at every stage. (Lastly, I should note that my wife and I have continued our turn towards a modified vegetarianism, while still continuing to be omnivores, and I have continued with my activities as usual, and have not taken any special supplements or eaten any "special" foods.)
How time flies! A string of PSA's (June '15: 4.67; Dec. '15: 5.27; June '16: missing; Dec. '16: 6.35), with the 6.35 being the highest, with me at age 76, have justified not having a biopsy since June of '13, when no cancer was found in 12 cores. I was recently notified by my urologist that 10.0 ng/ml is his group's new cut-off for a re-biopsy (how I detest them!)--and that means I do not have to fight with him about not having a biopsy for now. I continue to be grateful for the decisions I made in the fall of 2009 (first diagnosis) to have 3 consults, and for the support from the woman I saw at Dana Farber C.I. to proceed with active surveillance. My current urologist has been outstanding--I am so fortunate to be where I have access to the medical care that I have received, and thankful that I have been persistent in evaluating my urologists and acting on the information and feelings that I have had in relation to diagnosis and treatment.
Times continues to fly, but how I wish that certain things that are much more painful than anything having to do with my prostate would disappear! My most recent PSA (Nov. '17) was 5.91, down from the 6.35 of Nov. '16 (I cannot locate the PSA for May--I am having PSA measured twice a year).
In a very small way I miss meeting with my urologist, who is outstanding. He receives faxed PSA reports, and has not contacted me about another visit--the last was about 2 years ago. Although I do have a somewhat enlarged prostate (identified at the time of the first diagnosis 8 years ago), there are no symptoms of anything related to the prostate. My wife and I continue our modified vegetarian diet--I think we ate red meat 3 times in the past year. When I reflect on my diet I tend to think that it does have something to do with the lack of progress of the cancer, but there may also be absolutely no connection between the two. I continue, obviously, to be happy with my decision to pursue AS, which certainly has proven to be the correct choice for me.
I continue on the course of Active Surveillance that I began 9 ½ years ago. My PSA continues to fluctuate, with the most recent test showing a result of 7.02. There have been no changes in our lifestyle, as we continue our modified vegetarianism. As far as can be determined, there are no indications of any problems related to my cancer. (I do suspect that one reason for PSA fluctuation may be stress related to difficulties that my son is going through -- I am convinced that stress plays a significant role in our health.)
Active Surveillance -- now in the middle of its 10th year. I remain convinced that this was the right choice, and figure that pretty soon I will be ready to stop paying attention to all this (I will be 80 in 2 months). I am also convinced that I made the absolutely correct decision in changing my urologist to a person in whom I have confidence (this was just reinforced by a friend whose wife is having heart problems: he said they have little confidence in the cardiologist they are working with, but seems to believe that they have to stay with that person -- I think this is a terrible scenario, one which seems to trap many people: do whatever you are able to avoid such a situation, if at all possible).
My PSA continues to fluctuate: Dec. '18: 7.02, June '19: 8.14, Jan. '20: 7.65. I should be having another PSA test this month, if possible given the COVID situation. Last time I reported that the stress induced by problems my son is having probably has an effect on my PSA -- those problems seem to be continuing, as does my stress, and therefore (IMHO) the PSA.
Lastly - do not hesitate to change your doctor if you do not have confidence in him or her: it's your life!
An update -- the first I have done voluntarily, i.e. without being requested to do one. Maybe it's because I am getting older (as if…).
Continuing to have my semi-annual PSA test, given that time a few years ago when my urologist said that this was the one way he could see avoiding the (IMHO) despicable biopsy. And so my fluctuating PSA went down a bit: from its high of 8.44 in July, 2020, to 7.53 in January, 2021 (lower than January, 2020).
If my earlier impression that stress affects one's PSA, I would guess that were my PSA tested today it would go up since my wife was recently diagnosed with breast cancer (I do not intend to request another PSA in order to test this impression -- but I think I will contact my urologist about this). And this is something you might want to consider in trying to understand a little more about that imperfect PSA test.
I continue to be convinced, and reiterate, that you must have confidence in your doctor(s) -- do not hesitate to change should that confidence falter. Again, it's your life!
15 years on Active Surveillance, and in the middle of a discussion of when (or "if") one drops out of Active Surveillance at a certain age. There are a variety of opinions about this, and for the time being I intend to keep up my twice yearly PSA tests, and annual meeting with my urologist. Lacking any significant indication of a change in my condition, whether as a result of a major increase in PSA or a drastic change in one of the rare MRIs that I undergo (3 in my 15 years), I will not submit to another biopsy or DRE. The discussions I have had with a number of participants in the support group I participate in continues to reinforce my conviction that one must have confidence in one's doctor: failing that, one must change doctors, despite any hesitancy on your part.
Allan's e-mail address is: greenbergallan04 AT yahoo.com (replace "AT" with "@")
