Time to pick which fork in road to follow

Thanks all for the time to put all the info out there for me.

First visit with the new URO went as expected although I did get some advise from my wife to slow down my thoughts when talking to the Dr.'s I think my anxiety was getting the best of me and I didn't realize I was kind of blurting out questions and sometimes didn't give him enough time to talk before I opened my mouth. I will try to do better with the next appointments and appreciate that I have a partner going with me through all this.
URO says better than 80% chance of cure with surgery or RT he didn't push one or the other on me but when I asked him how he would advise his brother sitting in the same place as me he said with my age and everything functioning good right now, no other health problems that he would advise surgery which I expected.
My original URO said I would definitely lose the nerve bundle on one side but the new URO said he would not make that comment until he was in there cutting it out but would not compromise if it needs to come out, maybe a little hope of keeping it.
I asked him how many Robotic removals he had done and he said 100 in training and about 100 in the 2 years since out of training. I asked him about the 50/50 chance of odds of impotence or ED and he thought 50% was a little high and expected better results than that with ED and way better odds of being dry within a year at most and commonly much quicker.
Surprised my wife with this one but I put him on the spot about Penile shortening with surgery and he said it definitely happens but not for sure and theres a good chance I might not notice it much. ??
I asked him about follow up care if I went out of state and he highly recommended getting a second opinion and would take care of me after the fact no matter where I went.
Told him I had an appointment with MD Anderson and he mentioned one of the surgeons there's by name and that he had many many removals and was well known and that just so happens to be the Dr I have my appointment with.

Since I am already setup with the Cancer center here in OKC for a second opinion on Aug 9th makes me wonder if I might have jumped the gun a little and have to many folks involved before I make a decision I don't know.
I am a little bit worried about having to many choices and making it harder to decide on who and where, but don't get me wrong I feel very blessed to be able to have choices at all.

GTO - Time can be your friend here which allows you to process and contrast the different opinions you are receiving from doctors and the forum members. However, you do reach a point where your brain wants to end the madness and just make a decision to get on with it. While you can’t wait too long, you are only a couple weeks into this since the adverse biopsy news and are really proceeding quickly so I would not hesitate to keep after your plan visiting OU and MDA as scheduled. After that is over, take a deep breath and then have a long chat with your wife about a week later.

My wife was very supportive of surgery after sitting though a couple urologist discussions where the side effect potential was covered in depth. She like it better than radiation (better sales pitch by urologists I think). It was a lot easier choosing surgery with her support and we did everything locally with Mayo 90 miles away. Just depends on what you are most comfortable with at the end, all things considered.

Met with a new surgeon at the top cancer center here in okc.
I was impressed with him, I didn't have any idea we had someone like him in our area. He told me he had done over 1500 robotic and 2000 open prostate removals and actually trained the regular URO I am going to now.
Basically said the same thing about incontinence and ED. As expected he painted an easier recovery to normal than the average guy usually comes out.
Couple of good things came out of it, the nodule my URO said he felt is so small that this new guy said if he didn't already know it had been felt he couldn't have be able to tell if he could even feel anything. Also as a plus if I decide surgery he can fix the small tear I have at the bottom of one of my hernia patches now.
He said he didn't think I was a candidate for seeds and if I decided to go down the IMRT path that I would probably need 6 months of ADT.
My first RO visit is tomorrow morning so we will see what he thinks but I think he pushes seeds so I don't know what to expect.
Pretty worried about both solutions to a cure. Being 55 years old I am worried about what life is going to be like 15 years down the road after radiation !!
Trying to figure out in my head what the stresses will be over time waiting on SE's that might show up by the time I am 70 if I make it that far.

I think if I decide surgery it's gong to be harder now to decide where to do it.
The surgeon here seems way competent but I am sure the surgeon at MD Anderson, Dr Davis is more than competent also.
8 hour drive difference between the two surgeons, one here at home and one in Houston, but I know the reputation that Houston has and that is a big pull.

Blackjack said...
.....but with a more "typical, favorable-risk" case like yours you just want/need a high-volume, experienced surgeon like the guy you met with.

Continued good luck

Totally agree. The surgeons relationship with your regular Uro is just another plus. Hopefully any decision fog is clearing. Best of luck!

"Pretty worried about both solutions to a cure. Being 55 years old I am worried about what life is going to be like 15 years down the road after radiation !!"

I can tell you what it's like 9 years down the road after the trifecta. never been incontinent. my ED is treatable with Cialis. I was your age when treated and have absolutely no regrets.

i'm sorry you feel that way about the long term SEs of radiations which really we don't hear much about here. in fact I can't think of a single case. I blame the prostate snatchers and the snatchees defending their treatment choice for scaring the hell out of vulnerable men.

after being on this forum for so many years it's the immediate and devastating SEs of surgery that scare the hell out of me and what guys have to go through to gain some form of continence or to salvage their sex life (cuffs and implants etc).

since I've been here I've witnessed the tide changing on surgery/radiation. surgery was the gold standard for treatment, but no more. and i'll bet in 10 years or so surgery will mostly be used in cases where radiation isn't an option.

here's an article that I read before treatment that you might find of interest.

https://fortune.com/1996/05/13/andy-grove-prostate-cancer-cover-story/

good luck to you man!

GTO, I agree with Michael...don't take radiation advice from a urologist (and vice-versa). And, as I mentioned earlier, RO's are tending to specialize more. If you are serious about SBRT make sure you speak with someone who has lots of experience using it to treat prostate cancer. Just because someone is a "RO" does NOT mean they are fluent in all types of radiation treatment.

Jim

F8, I'm glad that your treatment worked good for you that's what we hope for everyone, but to criticize the thousands and thousands of guys who have chosen surgery as their treatment is not necessary. Surgeries have been one of the great benefactors of technology and this is really true when it comes to robotic surgery for PCA. There are studies out there that are showing positive results for us higher risk guys that have chosen surgery as our first treatment. So lets encourage guys to check out all the options find the best Doctors, and the best facilities and then choose a treatment and hopefully have the good results like you have been fortunate to have. 👍

Both surgeons I talked to already only talked about robotic surgery except this last one that mentioned a slight possibility of having to switch over to open.

I talked to my first RO today and I really liked him, he does Seeds or IMRT and when I asked him about the surgeon mentioning that he didn't think I was a candidate for Seeds he said what I already knew, that everyone has their own bias's and that the center the surgeon was in doesn't do seeds anymore so I guess that all makes sense.
He said the only reason I wouldn't be a candidate for seeds is if my prostate was to big and wrapped around some of the bone structure and you couldn't get seeds everywhere you needed to and I didn't have that problem, somewhere between 80 and 120 of them, darn.
Said that Surgery IMRT or Seeds would give me an 85% cure rate.
The seeds have a slightly higher risk of bladder and incontinence problems long term than IMRT, but the risks are very low like maybe 3-5% chance of issues with IMRT and maybe 5-7% chance of problems with seeds.
He has treated over 2200 patients with radiation, but would not say which method he would recommend it would be up to me.
He talked to me some about his worse case patients that have not faired well with radiation and also the risk of secondary cancers that could come up years down the road and he had a handful of patients this has happened to and again the risk is slightly higher with the seeds.
He didn't recommend ADT as an add on to the radiation with my cancer history, kind of a relief but that if radiation failed then ADT would probably be in the future.
IMRT would consist of 44 treatments daily for 9 weeks and it would probably cause some temporary urinary issues like frequency and the feeling that I had a urinary infection that would last for awhile but would get better with time and most guys deal with it ok.
He was one of many investors that brought Proton Therapy into OKC with the Procure facility but that when insurance's started saying no to covering it because they say SE's and cure rates were not any better than EBT and the cost was 3 times as high.
The Proton Center here went bankrupt a couple years ago and some new folks took over with a different philosophy and he along with 8 other Dr. investors pulled out.
We talked about ED some and kind of what I had already learned, odds are not much change in the beginning but there was some risk years down the road that it could turn out to be a problem.
He seemed pretty honest about it all I think, didn't try to sugar coat anything as much as the surgeon did, all in all I am happy I seem to have viable choices here in the middle of the country.
I talked to him about SBRT and he told me the studies on it are very promising but long term they didn't know enough about it and someday he might start using it but right now he didn't feel like there was enough history for him to use that instead of IMRT.

I understand each one of the Dr's do what they do but it doesn't make the decision process any easier when you can't get all the facts of each form of treatment from the same people.

This decision is weighing heavy on my heart.

I still have the visit to MD Anderson coming up on Sept 3rd with another surgeon and another radiology team, but it seems I can get better treatment here at home than I originally thought.

GTOguy,

Yes, another good interview. I think, at some point we all 'go with our gut'. Yes, all the information is vital--but somehow, when we meet with the right doctor or team, we just know we're where we need to be.

I know that sounds a bit weird, or a bit illogical--and it is. And yet, the real medical value of the patient's trust in the treating doctor--and the treatment itself--is huge. When the time comes to decide, I promise you, you'll relax. And the day you walk in for your treatment (or the beginning of treatment) you'll be at peace. It really does work that way.

I agree about the go with our gut, I wish mine would quit changing it's mind.

GTO - Like Tudpock said, go through all your remaining visits with an open mind and your list of questions then discuss at home over a few weeks. Something will rise to the top that makes the most sense to you and your wife. You have heard most of the important stuff here already so now it’s time to trust one of the doctors and/or places after you have weighed all the options. Good luck with your Houston trip, my wife told me it is an impressive place from visiting a friend there.

In general, I agree with you F8. There are situations in which surgery may be better, such as urinary issues that could be worsened by RT. As RT technology continues to improve I would hope, and expect, surgery to eventually become a treatment from the past.

Thanks for the insight guys.
Halbert I read through your story and thanks for taking the time to document your story I needed it right now.