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Medical Disagreements: What to Do


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Old 10-03-2017, 05:17 PM   #1
Chironex
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Question Medical Disagreements: What to Do

I'm a retired senior with longstanding, troublesome BPH and a relatively new (January 2017) prostate cancer diagnosis. However, my internist and urologist strongly disagree as to where we go from here. The facts are as follows:

At a regular annual checkup in November 2016 my PSA was taken and found to be elevated. My internist, whom I respect and trust, suggested that I consult a particular local urologist. I did so, my PSA was taken again and found to be still further elevated. A biopsy was performed, followed by an MRI. The biopsy revealed a localized, Gleason 6 cancer in two of the cores. This was confirmed by the MRI.

The urologist refused to perform any surgery, indicating that the cancer was simply too minor. The internist stated repeatedly that if it was his cancer he would insist on having it removed. I got a second opinion, which confirmed the urologist's refusal to operate. I informed the internist, who again insisted that if he had been so diagnosed he would want to have it taken out.

Also relevant is the fact that my BPH is a real problem. I had a TURP twenty years ago and over time the BPH has come back, again causing serious problems not solved by medication. At this point I would be quite happy to have a prostatectomy simply to relieve me, finally, of the LUTS and other symptoms that have plagued me for more than thirty years.

So I would tend to come down on the side of my internist and opt for surgical removal. I'm fully aware of the potential sequelae of prostatectomies. I already have most of them and have no reason to expect any remission without surgery. But my present urologist (and the second urological opinion) resist performing a prostatectomy without the presence of more cancer than I appear to have.

Who is right? Am I wrong? I was not (urologically speaking) born yesterday. If I wait too much longer I will no longer qualify for surgery. Chemo and radiation will, for me personally, always be out of the question. I value my mental status too highly. Nor do I want to spend what may well be the last decade of my life with the constant, aggravated prostate symptoms from which I suffer at present. A prostatectomy sounds entirely reasonable to me. How can I persuade my urologist (a very highly reputed surgeon qualified on the DaVinci machine) that a prostatectomy is the way to go?

 
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Old 10-04-2017, 09:12 AM   #2
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Re: Medical Disagreements: What to Do

Thank you for your well educated post. Gosh .. how difficult is to answer! On one side you have on the balance two urologists and one internist which would maybe favor the no-removal but on the other side you also need to count on your knowledge and status and feeling which is extremely important. I am sure you considered this: how about to get a 3rd specialized and reputed urologist/surgeon advise? I am afraid all of them will follow guidelines though despite those are only that: guidelines! However, I would be very cautious to whom you would put your trust if he/she accepts the removal: experience is of top importance. I stand a bit with your feeling as I had TURP 4 years ago and happy I did (but know BPH can return). I posted quite a lot here on that. What I recollect reading prior to the decision is that TURP, which you also have done, limits quite a bit the cancer treatment options which I understand in any case you are not considering (such as seed implants). So the urologists should be also questioned on the efficacy of cancer treatment options after your TURP. Good luck!

 
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Old 10-04-2017, 09:19 AM   #3
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Re: Medical Disagreements: What to Do

Dear Chironex,

You might need to call your health insurance to find out how to do it, I am not sure about that, but I would seek another opinion outside that medical group, or of the Chief of staff at the hospital that you use, if you trust that doctor, or both.

You don't have to tell them, but if you want, let those doctors know that you are the one that has to live with results and no offense meant, but that you need further feedback in order to make a decision.

If one is too thin skinned to accept that, I would throw his opinion out.
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Old 10-04-2017, 09:36 AM   #4
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Re: Medical Disagreements: What to Do

Actually, Albedo, it's this way: if all the M.D.'s were united, I wouldn't have a problem, I'd do what they advise. The problem is that they're divided, with the internist on one side and the urologists on the other. The internist is a very well-respected man in the local medical community. My wife and I have been his patients for ten years now and we've been very happy with his services and advice. He's in no way a flake.

So when he's continually advising me to have surgery, as he is, and the urologists are against it, as they are, I'm confused as to what to do. I thought that perhaps someone here on the boards would have some relevant experience of receiving and dealing with conflicting medical advice from respected, trustworthy medical doctors. Neither of the urologists have as of yet thrown the guidelines in my face; they appear to be weighing the facts as individual providers and making their own judgments.

I suppose my real problem is my suspicion that the uros, without admitting it, are parroting some kind of party line about possible surgical dangers without really focusing on the specific facts of my case. I'm 72 and otherwise in good health, with the standard life expectancy of 13 or 14 years, and without any prior negative experiences with surgery or anaesthesia. I do not want surgery six or seven years from now when I'm substantially weaker than I am at present and I very much do want surgical relief of my BPH problems as soon as possible. So, considering that the issue is whether to have a TURP *or* a prostatectomy (no surgery at all being entirely out of the question), why won't they do a prostatectomy? To that question I haven't received an answer. I have another appointment with my uro on Friday when I'll raise the question again. Any thoughts you can share that might be helpful on Friday would be appreciated. Take care!

 
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Old 10-04-2017, 10:17 AM   #5
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Re: Medical Disagreements: What to Do

You need to ask each of the professionals why.

Professionals differ because regardless how well known or esteemed they are, they are just human beings with their own set of prejudices and experiences. It doesn't mean they are 'flakes'. It helps us a lot to comprehend this. I have never met any two people that see every angle exactly the same way.

The chief of staff of endocrinology at a well respected teaching hospital bet his license that I was not hypothyroid. Guess what. A specific test proved I am indeed hypothyroid....and he never would speak to me again. I was so low in thyroid that I was unable to stay awake more than 15 minutes without falling sleep. Now I am just fine, being treated by doctors that know the fact that hormone needs are individual. so, be aware that ANY human being can have an opinion. That doesn't mean they are uneducated or stupid...unless they believe they are always right.

You alone need to decide what risks YOU are willing to take.

Perhaps you can ask for candid feedback from each side as to exactly why they do or don't recommend the procedure, and what the risks are from their perspective. PLUS do some research yourself on a teaching hospital website, such as the Mayo clinic website. Bottom line is we all have to choose for ourselves.
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Old 10-04-2017, 11:35 AM   #6
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Re: Medical Disagreements: What to Do

Thank you, Yayagirl, for your thoughtful responses. I will have the chats you suggest, if they give me the time. I have an appointment with the uro on Friday. I suppose it comes down to this: as I see it, after having done some research (and I'll do more now, before Friday) the surgical risks of a TURP and a (I *think* this is right) RARP don't seem to be very different. And I'm definitely going to have either some kind of a TURP or a RARP. The choice is not between surgery and nothing, nothing is not an option. Keep in mind that I've already had one TURP and seemed to come through okay. In addition, I already have full-scale permanent LUTS beyond the control of medication. So please tell me how I will be worse off with the negative possibilities of a RARP rather than those of another TURP. I just don't see it myself.

 
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Old 10-04-2017, 01:11 PM   #7
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Re: Medical Disagreements: What to Do

Hi Chironex,

Welcome to this board! How great it is that you are already getting several viewpoints.

You may be right in your desire to have prostate cancer surgery at age 72, but possibly for a balance of some right and wrong reasons, and you clearly have some misimpressions that could be clouding your decision making. Those of us responding to your post can help you sort this out and think this through, but in the end it looks like you are in one of those somewhat gray areas where you will just have to decide.

Would you mind clarifying a few important details, such as whether the MRI was a multiparametric MRI, which I’m thinking is likely, but a little odd doing it after the biopsy rather than before to help target any areas that are suspicious on a multiparametric MRI? It would also help to know your “stage”, the size of your prostate in cc (should be known from the MRI), and your recent PSAs for the past two years or so, the percent of each biopsy core that was positive, how many cores were taken in all during the biopsy, and where the positive cores were located. You should have this in a copy of the biopsy and other reports on your case, but you can also call to get the information. The MRI report also may give you a “PI-RADS” score and some other information.

If you would rather just go with what you have provided, that’s okay too. I’m going to assume for the moment that you have what is known as a “low-risk” or “very low-risk” case, which are technically defined terms; I’m assuming this based on the fact that two urologists have indicated that surgery is not warranted.

First, it is clear that your internist has not kept abreast of the advance in knowledge in managing low-risk prostate cancer. That’s probably still not unusual, but many internal medicine doctors are getting up to speed. Fifteen years ago that view – get it out – would have been reasonable, with a fear that “just one cell” could escape and eventually kill you. Now, with no real doubt anymore, doctors who are current in prostate cancer know that prostate cancer that is truly low-risk (1) is extremely unlikely to kill you, (2) is extremely unlikely to metastasize, (3) rarely transforms into higher-risk cancer (though new fresh tumors that are more aggressive can appear, and (4) is best managed by an approach known as “active surveillance” with deferral of an attempt at cure until needed, if ever during the patient’s lifetime, with most patients never needing treatment. The first paper on active surveillance was published in 2002, and now, by 2017, numerous leading centers over the world, including a number in the US, have published consistently encouraging results with active surveillance. I can explain how to view that research if you would like (using the National Institutes of Health website www.pubmed.gov). Yes, the two urologists are almost certainly considering the guidelines - they do exist and with a lot of confidence in your circumstances (excluding the very real and highly relevant BPH issue); it's not just their private opinions that you are getting.

By the way, you need to know that in the US these days survival of prostate cancer (of all levels of seriousness combined) is nearly 100% at five years from diagnosis (huge improvement from about 2 out of three in the 1970s), also nearly that good (98%) at ten years, and 96% (!) at fifteen years – best of any major cancer (statistics from the American Cancer Society).

On the other hand, while surgery is a fine option, arguably as good as modern radiation, until around age 70, about that age the problems with side effects are often amplified as it is harder to recover well from the surgery. For most of us radiation is a great option, arguably superior to surgery, BUT, for those of us with existing urinary problems, like you with that BPH, radiation is not such a great option as it generally causes swelling in the area of blockage. That can even stop flow completely, which needs immediate attention.

Putting these two facts together, active surveillance could take you beyond the age where surgery would work before the surveillance revealed a problem that really called for attention, possibly leaving you without a good option for cure. That said, new therapies are emerging, and some already exist, mainly cryo, which is freezing the cancer. Also, focal therapy is emerging for cancer that is clearly limited to an accessible part of the prostate as proven by multiparametric MRI; the UK and Europe are well ahead of the US in trying focal therapy. Hormonal therapy, also steadily improving, to hold the line but without cure would also be an option, and it very likely is much less harmful to the patient than you may be thinking. But back to surgery, it has the added advantage, as you are thinking, of preventing a lot of problems with a urethra that is problem plagued, as yours is.

Regarding the BPH, which partly causes an issue for radiation, is another TURP a good solution? Also, do your drugs include either Proscar® (finasteride) or Avodart® (dutasteride), both of which are FDA approved for BPH and also have activity against prostate cancer, especially the mild kind? (I have been on one or the other for over seventeen years continuously, as a safety net since 2013 as I think I am now cured due to radiation then.)

Regarding chemo and radiation, you wrote: “Chemo and radiation will, for me personally, always be out of the question. I value my mental status too highly.” It appears you do not understand the territory here. Chemo does often have some cognitive effects, but it is not given unless the case is advanced – metastatic or at least very high risk. It is not given with radiation. You may be thinking of hormonal therapy (aka androgen deprivation therapy), a short course of which – about four months – is typically given with radiation for intermediate risk cases. Such a short course is extremely unlikely to cause cognitive effects; indeed, even long-term use has not been proven by credible research to cause cognitive difficulty. Rather, faulty research has confused the fact that hormonal therapy is more often given to patients who are older with the fact that older people have more cognitive trouble. Radiation is not associated with cognitive difficulty.

As for persuading your urologist, who knows that surgery is not merited for your prostate cancer at this point, after thinking this through, you could make the argument that you need a solution for your urologic problems, that surgery for prostate cancer prophylaxis would do this, that your urological situation makes radiation an undesirable alternative or fall back, and therefore, as a senior, your window for surgery is closing, making active surveillance more of a challenge than it would otherwise be and arguably dicey. You might want to consult a doctor who specializes in continence/blockage to help you think this through and perhaps bolster your case. It will probably also help if the urologist understands that you have done your homework on active surveillance and that you now understand why he was initially against prostate cancer surgery.

In your situation there are clearly some tricky pros and cons to weight and balance out. Good luck sorting this out.

 
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Old 10-04-2017, 04:24 PM   #8
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Re: Medical Disagreements: What to Do

Hi again Chironex,

I just thought of another resource you could tap directly that is relevant to having robotic surgery when you are 72 years old. I went to www.pubmed.gov and searched for " robotic prostatectomy AND age " after activating filters for abstracts, humans, age = 65+, and title (the latter after selecting "search fields". The result was three hits, and I took a look at two the abstracts.

You will be making your own judgements, of course, but, considering this is an older group to start with in two of the studies, the results regarding side effects were quite a bit better than I expected. To me they looked encouraging.

 
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Old 10-05-2017, 02:42 AM   #9
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Re: Medical Disagreements: What to Do

Keep in mind too that doctors will only do what is approved by insurance companies, and if you don't show a certain percentage of cancer, or you are over a certain age, or you don't meet certain criteria for getting surgery and the doctors think insurance won't pay for it, they won't do it.
Just another thought, maybe not applicable in this case, but I know that doctors sometimes just avoid doing certain things if they know the insurance won't pay for it. I don't know if age is relevant here or not.

 
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Old 10-05-2017, 06:37 AM   #10
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Re: Medical Disagreements: What to Do

Quote:
Originally Posted by Chironex View Post
Actually, Albedo, it's this way: if all the M.D.'s were united, I wouldn't have a problem, I'd do what they advise. The problem is that they're divided, with the internist on one side and the urologists on the other. The internist is a very well-respected man in the local medical community. My wife and I have been his patients for ten years now and we've been very happy with his services and advice. He's in no way a flake.

So when he's continually advising me to have surgery, as he is, and the urologists are against it, as they are, I'm confused as to what to do. I thought that perhaps someone here on the boards would have some relevant experience of receiving and dealing with conflicting medical advice from respected, trustworthy medical doctors. Neither of the urologists have as of yet thrown the guidelines in my face; they appear to be weighing the facts as individual providers and making their own judgments.

I suppose my real problem is my suspicion that the uros, without admitting it, are parroting some kind of party line about possible surgical dangers without really focusing on the specific facts of my case. I'm 72 and otherwise in good health, with the standard life expectancy of 13 or 14 years, and without any prior negative experiences with surgery or anaesthesia. I do not want surgery six or seven years from now when I'm substantially weaker than I am at present and I very much do want surgical relief of my BPH problems as soon as possible. So, considering that the issue is whether to have a TURP *or* a prostatectomy (no surgery at all being entirely out of the question), why won't they do a prostatectomy? To that question I haven't received an answer. I have another appointment with my uro on Friday when I'll raise the question again. Any thoughts you can share that might be helpful on Friday would be appreciated. Take care!
Thank you. I see better your point and start feeling to be on your side. Good luck for your meeting next Friday. I am sure you will make the right choice. I would still ask to see a 3rd specialist outside the current environment: I know it is hard and can be confusing for having passed the same (I consulted with 2 urologists and 3 MDs before deciding for my TURP). If I have to give just an advise would be: have a real "partnership" approach with your chosen surgeon (you are "both" on this undertaking), feel comfortable with you choice, have your wife on your side, privilege experience vs. fancy technologies (I did a traditional well established (bipolar) TURP vs. green laser, button etc ... not that the latter are bad but the surgeon partner I pick up had practiced more than 2500 interventions of the chosen type).
Good luck, heartily! Let us know.

Last edited by albedo1; 10-05-2017 at 06:42 AM. Reason: spelling

 
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