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Posted 9/12/2018 1:33 PM (GMT 0)
This forum has educated us and empowered us to make informed decisions. Many of us have labored with our decisions and we have tried to support each other. Most of us have felt better once we’ve made a treatment decision and as difficult as it’s been, we try not to look back and second guess ourselves.
We’ve gotten second and third opinions from doctors, pathologists, and the like. In many cases, we get different opinions from different doctors.

Here is me question:
“If we trust our doctor and we understand the risks of our treatment decision, why do we continue to seek additional opinions?”

For instance, for my pathology and history, my urologist doesn’t think any of the other blood tests are necessary. My PSA is checked every 6 months and a DRE is done every year. From this site, I’ve learned that a PSA3, PHI, 4K score, etc. would be useful. In my case, it may be more helpful because I can’t have an MRI. Should I find another urologist that agrees with me? I don’t know.

Depending on my next PSA in November, my doctor and I will have to make a decision of the timing of my next biopsy. That will be a judgement call. I don’t know if his judgement is better mine. Although I know I’m burying my head in the sand, I would want to delay the biopsy as long as possible.
A member posted that his RO has said that 1% of men having SRT and HT have “long term” side effects, however, based on the postings on this forum; it appears the percentage is higher – although I don’t know the definition of “long term”.

So again, do we trust our doctor(s) or do we continue to search for one that gives us the answers we want?
Posted 9/12/2018 1:41 PM (GMT 0)
We trust our doctors, but they are human and may make mistakes. Or 2nd opinion doctors may have greater expertise.

Your PSA doubling time is really long, which is great!

Trust your Urologist!
Posted 9/12/2018 1:53 PM (GMT 0)
Don't forget that the HealingWell forums don't represent a statistically valid sample for side effects of treatment. Guys who have their treatment and then struggle with lingering side effects are more likely to go online and talk about it than guys who have their treatment and then everything is peachy dandy.

Have you told your urologist that you'd like to have some of the additional tests you mentioned? I've usually found my doctors willing to order tests, or prescribe different drugs, because I asked for them.
Posted 9/12/2018 1:54 PM (GMT 0)
Your perception that the percentage of problems on the board seem higher may be true simply because people experiencing problems are more likely to post them.
Posted 9/12/2018 1:57 PM (GMT 0)
Mitch:

The two are not mutually exclusive.
I trust my local urologist, but I suspect I know more about PC than she does.
My MO is Dr. Lam, one of the top guys around.
I trust him, but I will still bring up stuff (much of which I've gleaned from HW) and get his feedback.

Mel
Posted 9/12/2018 2:19 PM (GMT 0)
I recognize that my doctor has years of education and years of clinical experience. All of which I respect and trust. My doctor is an expert in her field.

However, I do just enough research to satisfy myself that she is in fact the expert I need. I need a doctor who knows their stuff, is willing to explain why a treatment is being recommended, and is willing to include me in the decision process. I do enough research so I can have intelligent conversations with my doctors.

In the end, it is my choice to follow a treatment plan - I consider my doctors as partners in my health care, not dictators of my health care.

Andrew
Posted 9/12/2018 2:46 PM (GMT 0)
As our former president stated...."trust, but verify". Works well in all walks of life.
Posted 9/12/2018 3:01 PM (GMT 0)
I'll give you a perfect example, My psa was rising for 10 years topping at 40. during this time I saw 5 urologists and had 12 biopsies, all negative. Every doctor told me I had BPH. The 12th biopsy picked up indolent cancer 1 core of 26 <5%. doc recommended surgery. Was referred to a prostate specialist (didn't know they existed) by an oncologist friend. First thing he said after reviewing my records, was you have a serious cancer and we just haven't found it yet. I just reviewed your 10 years history and the only thing that biologically affects your psa trend is serious prostate cancer, nothing else can explain it. He was right.

Unless something is obvious and has a logical explanation you can trust your doctor. If it doesn't, see a specialist in that field. Any major surgery that could result in long lasting side effects, such as back surgery ect, get a 2nd opinion from a specialist. The fact is that we cannot evaluate a doctor's skill level, we look at his manner and whether he is nice to form our opinion. Interviews have an inverse correlation to performance.
Posted 9/12/2018 3:01 PM (GMT 0)
A lot of good comments here and JNF beat me to the quote I wanted to use. I think at the end of the day, it's a blended approach. Your doctor has the medical knowledge and can offer his opinion, but it's your life and your body. There's a lot of gray areas in PCa and I think it's up to you to decide where you land when there's no clear choice.
Posted 9/12/2018 3:13 PM (GMT 0)
"A member posted that his RO has said that 1% of men having SRT and HT have “long term” side effects"

for SRT i'll bet the number is higher, possibly much higher. sounds like a sales pitch to me. HT SEs are more based on duration and age of patient rather than if prostate is intact so i'd expect it to be a lower percentage than SRT. but those are guesses based on what I've seen here over the years.

doctors are either up to date or they are not.
Posted 9/12/2018 3:18 PM (GMT 0)
I think some of it depends on the person being treated. There is a person this board, we all know who he is, and I doubt he trust any doctor. I on the other hand trusted my Urologist, but gave up on him because I felt he really didn't give a crap and I let him know it. Yeah, I need to work on that.
My RO, I trust him, but who I really trust are the people no one sees that come up with the treatment plans in regards to radiation. Do your homework, ask questions, ask more and more... Then decide if you want to stick with that person, or move on.
When my RO started talking to me about radiation treatments for the first time, and about half way through his speech I had to stop him. Why, because I could tell it was just a script that was given to people that don't do research. I almost said, "lets cut the crap here" and my gf could tell I was about to say that. But her being a director of communications for a firm everyone on this board knows about, well lets just say cooler minds prevailed as she squeezed my hand and I thus squeezed my mouth shut
Here's the thing, If this guy wasn't recommended by the Dr. that is doing my Brachy, and who I trust more than anyone in this field, right now, well I would have walked out right there. But after I somewhat set him straight, no BS out of him any longer. Just the facts please. Since then, he has been great. I ask questions, he gives me straight answers that can be very technical.
So, trusting your doctor is a huuuuge thing in my mind.
Posted 9/12/2018 3:34 PM (GMT 0)
that’s surprising that you have had two biopsies within 3 months of each other. But, glad you did as they found a 4. You are definitely not burying your head in sand - you are actually on top of It. I don’t think you need to change the URO, but you do need to see other RT experts. With you low risk you have so many options for cure. Why don’t you get a mpMRI done - biopsies are like a shot in the dark.
Posted 9/12/2018 3:46 PM (GMT 0)

ldog said...
I think some of it depends on the person being treated. There is a person this board, we all know who he is, and I doubt he trust any doctor. I on the other hand trusted my Urologist, but gave up on him because I felt he really didn't give a crap and I let him know it. Yeah, I need to work on that.
My RO, I trust him, but who I really trust are the people no one sees that come up with the treatment plans in regards to radiation. Do your homework, ask questions, ask more and more... Then decide if you want to stick with that person, or move on.
When my RO started talking to me about radiation treatments for the first time, and about half way through his speech I had to stop him. Why, because I could tell it was just a script that was given to people that don't do research. I almost said, "lets cut the crap here" and my gf could tell I was about to say that. But her being a director of communications for a firm everyone on this board knows about, well lets just say cooler minds prevailed as she squeezed my hand and I thus squeezed my mouth shut
Here's the thing, If this guy wasn't recommended by the Dr. that is doing my Brachy, and who I trust more than anyone in this field, right now, well I would have walked out right there. But after I somewhat set him straight, no BS out of him any longer. Just the facts please. Since then, he has been great. I ask questions, he gives me straight answers that can be very technical.
So, trusting your doctor is a huuuuge thing in my mind.

This is very much me.

I like a doctor who can "read" me and tailors his method of treating me and communicating with me to accommodate what he sees as I needing from him. They'll pick up very quickly that I'm keen on as much information as I can possibly get....and OPTIONS. They'll also pick up on the fact that I do not trust easily.

My current uro is great (after going through half of in town). He knows his stuff because he listens as much or more than he speaks.. And he asks questions. I believe this is why he's so knowledgeable. He's constantly learning precisely because he knows he doesn't know it all. (not that I do...which is why I ask so many dumb questions)



As to the OP's question....I think I get second and even third opinions.....and do my own research...and tend to go with the quorum when there's differences.
Posted 9/12/2018 6:18 PM (GMT 0)

F8 said...
"A member posted that his RO has said that 1% of men having SRT and HT have “long term” side effects"

for SRT i'll bet the number is higher, possibly much higher. sounds like a sales pitch to me. HT SEs are more based on duration and age of patient rather than if prostate is intact so i'd expect it to be a lower percentage than SRT. but those are guesses based on what I've seen here over the years.

doctors are either up to date or they are not.

I am the member that posted that comment that you quoted F8. I don’t think it was a sales pitch. The RO (who is treating me) is Michael Zelefsky, he’s not in private practice, he is a vice chair of Radiation Oncology at MSKCC, and a recognized expert in rad oncology for prostate cancer. (I know, everyone says that about their doctor). But in this case it’s true. You can find his lectures, slide presentations , etc on YouTube.

I just don’t think the guys on that level do sales pitches.

Now, what I do wonder, is , does he really know? I think he believes what he is telling me, but maybe it’s just from patient questionnaires that can be inaccurate. I sure hope he’s right though yeah

To Mitch’s question though, I think you need to find the right Dr, the one you really trust. Then if you are so inclined, ask the right questions, and let him know you are asking because you are curious, that you trust him, just have a need to know the details behind the details. (Which knowing you personally, I know you do 😂, serious response though)
Posted 9/12/2018 6:29 PM (GMT 0)
I might add, you also need to match your need for treatment to his plan. I mean by that, I fired my Urologist because he seemed to take my PCa lightly. I wanted someone who would be willing to be more aggressive. Thus my MO.
Posted 9/12/2018 7:17 PM (GMT 0)

PeterDisAbelard. said...
Don't forget that the HealingWell forums don't represent a statistically valid sample for side effects of treatment. Guys who have their treatment and then struggle with lingering side effects are more likely to go online and talk about it than guys who have their treatment and then everything is peachy dandy.

Have you told your urologist that you'd like to have some of the additional tests you mentioned? I've usually found my doctors willing to order tests, or prescribe different drugs, because I asked for them.

PDA, at my last visit, I mentioned the additional tests to him. He didn't think they were necessary. At my next appointment, I will ask him again and try to learn when they're necessary/useful (his experience). I will also ask him about PET Scans as a diagnostic tool.

As an aside, it's interesting that some doctors do a UPSA test after surgery and others do the standard test. I would think if a patient wants the UPSA test, the doctor would support it.
Posted 9/12/2018 7:32 PM (GMT 0)

ddyss said...
that’s surprising that you have had two biopsies within 3 months of each other. But, glad you did as they found a 4. You are definitely not burying your head in sand - you are actually on top of It. I don’t think you need to change the URO, but you do need to see other RT experts. With you low risk you have so many options for cure. Why don’t you get a mpMRI done - biopsies are like a shot in the dark.

ddys, I had 3 different pathology opinions on my first biopsy. The local pathologist said the core was Gleason 7 (3+4). Dr. Epstein said the results were inconclusive and recommended a repeat biopsy. The local pathologist send the slides to a reknown pathologist at MSKCC who said it was Gleason 6. Yes, 3 opinions on the first biopsy. The second biopsy was diagnosed as Gleason 6 by all 3 pathologists. The 2 cancer cores were in adjacent "quadrants" - possible the same tumor.

BTW, based on the Gleason 7 (3+4) diagnosis, I had scheduled surgery. I cancelled it as soon as I received Dr. Epstein's report. I asked my urologist why he didn't ask for a second pathology opinion and he told me that he's known the local pathologist for many years and he's very good. I believe that reading biopsy cores is a challenge especially when the cancer is very small - less than 5%. There wasn't enough tissue to do a genetic test.

I can't have an MRI because I have a defibrallator.
Posted 9/12/2018 8:12 PM (GMT 0)
Oh got it. Second one was a g6 and first one inconclusive g7, most likely a g6. Tough call esp since you can’t get the mpMRI because of your defib, keep a close watch on the PSA. Hope someone more knowledgeable out here can give you a better suggestion. You could still be an AS candidate as you have so little “4”.
Posted 9/12/2018 8:12 PM (GMT 0)
Apparently the local pathologist wasn't as good as your uro thought...
Posted 9/12/2018 8:23 PM (GMT 0)
Prato -- maybe it comes down to your doctor's definition of long term side effect. mine is anything that's worse than before SRT that won't get better.
Posted 9/12/2018 8:30 PM (GMT 0)

ddyss said...
Oh got it. Second one was a g6 and first one inconclusive g7, most likely a g6. Tough call esp since you can’t get the mpMRI because of your defib, keep a close watch on the PSA. Hope someone more knowledgeable out here can give you a better suggestion. You could still be an AS candidate as you have so little “4”.

Thanks, I've been on AS for 2 years and hope that I can stay on it forever.
Posted 9/12/2018 8:44 PM (GMT 0)

Michael_T said...
Apparently the local pathologist wasn't as good as your uro thought...

Michael, I was really pissed at the local pathologist and my doctor, however, it was the local pathologist that sent the slides to MSKCC for the third opinion - after he received Epstein's report. I concluded that reading biopsies, especially when the cancer is a very small percentage of the core, is challenging. Based on the 3 different opinions of the first biopsy - including 2 by reknown pathologists, I concluded that I had Gleason 6 cancer. Some people might say that I should accept Epstein's conclusion as there's nobody more qualified, however, I don't know if he personally read my slides and besides which, the MSKCC pathologist is well known. This forum saved me from having surgery - telling me to get a second opinion from Dr. Epstein.
Posted 9/12/2018 9:04 PM (GMT 0)
The problem of knowing whether to trust your doctor is similar to knowing whether to trust a car mechanic. Both the doctor and the mechanic know much more than I do and make recommendations about what I should do (or pay for). Both have some incentive to "overtreat" because they make money from treatments. I fired my first urologist because I didn't like the way he treated me when I showed up in his office with an extremely painful urinary retention; but he might be a brilliant doctor. Judging a doctor by his manner with you may be a mistake, since a great doctor might have an unpleasant personality.
Posted 9/12/2018 9:05 PM (GMT 0)
mitchden4, I liked your questions so I am joining in the conversation. No, you don't have to trust your doctor(s) however remember this “There is a tendency for humans to consciously see what they wish to see. They literally have difficulty seeing things with negative connotations while seeing with increasing ease items that are positive. For example, words that evoke anxiety, either because of an individual's personal history or because of experimental manipulation, require greater illumination before first being perceived.” -Lionel Tiger, Optimism: The Biology of Hope. Besides, illness I have seen it in sports. You are undertrained but you get to the starting line believing you will run the race faster than you have trained. I liked other folks comments too. Many of us with insurance have the opportunity to visit with a number of physicians. I think with AS both you and your doctor will have a certain amount of anxiety. You both want to make sure that you pick up anything progression in the disease so that you can treat it if needed. So there may be conflicting tests that are recommended. I'd get the blood test you want they are cheap enough. Also, you may need a biopsy or two that others won't need because you can't do an MRI. But base your decisions on research and doctors advice. Good luck!

---------------
68 yrs., marathon runner, PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone >7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Post Edited (SantaZia) : 9/13/2018 5:38:12 AM (GMT-6)

Posted 9/12/2018 10:23 PM (GMT 0)

fiddlecanoe said...
The problem of knowing whether to trust your doctor is similar to knowing whether to trust a car mechanic. Both the doctor and the mechanic know much more than I do and make recommendations about what I should do (or pay for). Both have some incentive to "overtreat" because they make money from treatments.

Do doctors at the major university health care systems really have this incentive?

Aren't they salaried and not getting more incremental $ from more treatments? Sure, indirectly more revenue to the "system" affects their salary over time, but I would think there's not the same over treatment incentive that might exist in a private practice.
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