Second opinion given my diagnostic?

I like others here have gone through what you are experiencing, what a wakeup call. At the suggestions of others here I went and received second opinions from the best cancer centers in the country. Don't settle for anything less as you only have one life. Those were the Mayo Clinic and MD Anderson and I was being treated my Sloan Kettering. Everybody had the same thoughts. That made me feel better and confirmed my trust in my doctors.
Research the experience of the doctors and facilities that are treating you and hope you find that they are specialized in Prostate Cancer and have many years of experience. Make sure they have the most modern equipment and are well versed with it. From research, the radiation treatments seem just as effective as surgery but make your own decision.
This may sound like a lot but get the best care available. BTW, my doctors were happy that I went for a second opinion.
Good luck!

Hi,

Thank you all very much for your very enlightening and supportive comments. I have carefully read each of your valuable comments in detail. I am certainly not happy to have had to join the club but the welcome comments have been very warm and comforting. Thank you.

I had my urologist appointment to review the results and he confirmed that given my age and life expectancy, the Gleason 8 value and following the NCCN guidelines, my best recommended option would be robotic surgery. He explained that with this robotic procedure the chances of urinary containment issues are less than 10% and chances of erectile dysfunction issues are about 20%. Not too bad, I guess, but not very appealing if you end up being within those not lucky percentages. However, I am not sure how accurate these scenarios really are.

He explained that the surgery is not too urgent and that we could schedule to have it performed in about 2 to 3 months, but not any longer than that.

Some comments and questions that I have, from all your kind responses:

- I have not had a PSMA but the doctor did order that I get one, which I plan to get in the next few weeks.
- My biopsy results did not show any signs of cribriform, Seminal vesicle invasion (SVI), extra capillary extensions (ECE) or intraductal.
- I did ask my doctor about getting a Decipher test and he suggested that, given my situation, it would not be worth to go through the expense involved as this would not change anything in the recommended surgery treatment.
- My doctor did not mention ADT at all but if I do get the RARP within the next months, will this be something to consider?
- My doctor did mention radiation treatments as an alternative to surgery but recommended that in my case, due to my age and life expectancy, surgery would be the best option.

Given all this, I am still not sure if traveling to a Center of Excellence for a second opinion would be worth it as I assume that they will also go by the NCCN guidelines, which would not result in any different diagnosis or recommended treatment. Am I correct or is there something that I might not be considering?

If RARP is the best option for me, I assume that my priority now is making sure that the specialist Doctor who performs the procedure is very well experienced, which might not necessarily be the doctor that I am currently seeing, correct?

Thank you.

I have some problems with this doctors advice.

The decipher test gives you an idea about whether or not you have a possibility of a reoccurrence. With a Gleason eight you want that kind of information. There is nothing that doctor can tell you that will let you know whether there is a chance of reoccurrence, But that test can tell you.

Listen, eight is very aggressive, Your doctor is not acting like that.

As for ED, It’s more like 20% have no problems, the rest have problems. If he can spare the nerves on both sides, that does give you a much better chance, Has that been discussed?. If not, you need a second opinion.

You should speak to a radiation oncologist at least once to find out what they think about your treatment.

I think you’re getting short changed by this doctor. You need to get to a center of excellence and get a real 2nd opinion. Your first opinion sounds real fishy to me.

@animate
I think your feeling about getting a second opinion from a major medical facility with experience in prostate cancer and specialist echos most of the poster on MCC as we did it also.

It is a personal choice but with so much information coming at you it is good to hear a second opinion from a specialty medical facility. I did this per my PCP who recommended to me to get a second opinion which would help me to decide my treatment plan provider.

You mentioned insurance paying for Decipher. I had Decipher and my insurance paid for it (Medicare and BCBS Fedearl Plan). If your insurance does not cover it you can contact Decipher and they will work with you on lowering cost of doing it and also set up a payment plan if needed.

Please remember that those of us on MCC are to give you our expereince with an issue and provide inspiration. Some have much more personal experience with a subject but remember not medical experts and you should seek that expertise from medical professionals and experts.

Your urologist might feel that if you are leaning toward surgery anyway, the post op pathology will tell the true tale.
You can also request a Decipher test at that point to see if more aggressive treatment might be in order.
I understand your feelings about not wanting to go to a center of excellence for a second opinion if you’ve pretty much decided that surgery is the way you want to go; but the BEST surgeon may very well be at that very place.
So I think your primary objective should be toward finding the very best surgeon you can and going to wherever that person is. Get a consult, see what they say, and then see if the drive is worth it. There are rare times when the ‘best’ is right under our noses, but usually not.
Phil

Yep, if you are asking yourself (and our club) if you need a second opinion, you need one. You, and your close support persons, are your best advocate. When you are questioning any decisions about your diagnosis and treatment, do not hesitate to get additional eyes and brains involved.

Sorry that we had to meet under such circumstances. Glad that you found this group, it is a wealth of information and support. Best wishes to you.

Thank you all again for your kind and supportive comments.

I should have specified that for me attending a center of excellence appointment involves international travel, with all the expenses that go with that. I do not have any insurance that would cover appointments or treatments at such centers. Not that I believe in penny-pinching when it comes to my health, but it just complicates things. That is really the reason for my hesitance on whether considering getting a second opinion at a C of E would really be worth it, given my situation.

What I am thinking is that before considering traveling to a C of E, I will try to do more research about local doctors who might give me a reliable second opinion. I believe that there should be excellent, well experienced doctors in my area that are highly skilled in the robotic procedure. The more doctors I meet and get their opinions, the better, so that I can have a wider perspective on my options and make the best decision possible.

Thank you all again, your comments have been extremely helpful.