Time to pick which fork in road to follow

GTO,
This tread became very interesting after pro surgery and pro radiation guys started responding.
With so many conflicting posts, it is even harder for you to reach your final decision. Consultation with multiple specialties ( Uro surgeon, RO) and seeing MDA Cancer team, is already excellent work in progress on your side. You will have all right information and knowledge to decide on treatment modality that best fits your needs. You are young and I am sure you don’t want to sacrifice your sexual life to get rid of Ca and going surgery route, when same or better outcome with minimal SE can be achieved with modern radiation like SBRT, IMRT, proton, brachytherapy LDR or HDR, or even better with focal treatment preserving all your function.
I had a RP in November 2016 which was not my choice at all. I was advised by Uro surgeon and RO which happened to be in the same group as surgeon, and by my wife who works as an RN in Uro department at a teaching hospital.
I was 51 y/ o at time of diagnosis and RP. Was diagnosed per biopsy with low volume 4+3 which turned out to be 3+4 after surgery but Ca was bilateral and multi focal.
I had robotic RP with bilateral nerve sparing and limphnodes dissection.
I recovered continence by the end of 4 months post RP but I still suffer stress incontinece when I am physically active.
I never recovered any erectile function despite very aggressive penile rehabilitation.
I lost 2+ inches of length and some girth and had a prepubescent penis. Also, my orgasams are non existent, even now almost 3 years out, is hard to tell if I had one or not. My QoL is very much downgraded and despite I would like to engage in sexual activity with my wife, I do it very seldom because it does not give me any satisfaction and tension release as it was before RP.
That also had very negative impact in our relationship.
I would rather have those late SE from radiation 10-15 years down the road and I would also be10-15 years older and for sure, it would not have such a devastating impact as with my surgery.
Went into surgery 100% potent and woke up 100% impotent which continued until I received
Penile implant.
Whatever you choose, I wish you very best recovery.

MK

MK1965 said...
GTO,
....This tread became very interesting after pro surgery and pro radiation guys started responding.
With so many conflicting posts, it is even harder for you to reach your final decision. Consultation with multiple specialties ( Uro surgeon, RO) and seeing MDA Cancer team, is already excellent work in progress on your side. You will have all right information and knowledge to decide on treatment modality that best fits your needs...
MK

I note that most on HW are giving advise to help you get the most reasonable treatment, rather than being strongly biased for any particular choice.

Absolutely weigh all the outstanding medical advise you get from your doctors, mix it with your own in-depth research, paying little attention to our anecdotal stories. We all have our personal tales of woe. MK1965 has an often told tragic one, thankfully extremely rare. For sure, don't use his surgeon!!

Good luck, again....

The trip down to MDA went pretty much as expected with a couple new things that came up.
Started at 7:30 sharp with the insurance folks and more forms to fill out and signing that any left over tissue could be used for research or training purposes, which made sense to me.

Then came the liaison that kind of held the appointments all together and made sure if there were any questions he could answer or relay them back to who ever they were directed to, he did a DRE AGAIN and then a mini physical.

Next was the appointment with the surgeon Dr Davis he basically said much of the same about the cancer that the other surgeons have, 3+4 I have time to think about what to do and could even continue AS if I so desired but didn't think that was the smart thing to do. The first couple surgeons said no problem fixing the hernia tear at the bottom of one of my patches, but I think Dr Davis was a little more truthful when it comes to that part because he said maybe his team could fix the hernia but only if it just required a few stitches to patch the tear and if it required anymore than that he would leave it alone to deal with at another time. His view was that if it's an easy fix they would fix it but would not commit because he would not take any chances of affecting the outcome of the healing process for the prostate removal, and I appreciate the honesty I didn't get that feeling from the other guys. He said he would definitely go into it as a nerve sparing procedure due to where the tumor is and said I was a good candidate for the new Single Port Robot so instead of 6 holes there would only be 2. I haven't heard of the Single Port Robot so wasn't sure what to think about that, need to spend some time looking at that option.
Told me that vast majority of his patients were dry within 3 months and maybe a 15% chance it could take up to a year. Penile rehab would be done back with my URO at home. I didn't have a lot questions for him because I knew most of the answers already I think and didn't need to question his experience because I know he has done several thousand removals and is the head of MDA Prostate cancer division. He was not the most personable guy I ever met but seemed very confident in what he does and took as much time as I needed him to for any questions. He told me that he didn't feel like he would need to take any lymph nodes because everything looks contained and in his experience over 90% of the time they take them out for no reason with cancer like mine. The other surgeon told me he would probably take 5 or 6 lymph nodes out.
He did say that if for some reason he could see cancer in the fatty tissue then he would take everything out that he felt like he needed to. Some of what he said I didn't have much of an opinion about because I just don't understand it all.
He was not pushy at all and even told me that if travel was an issue because it's an 8 hr drive from home that he could set me up with someone local if I needed him to. He told me that in his opinion I had at least 90+% chance of a cure. He does surgeries on Mondays and Fridays and does 5 to 7 a week, week in week out. I asked him if he would personally be the guy behind the controls during surgery and he said yes but that there would be a second surgeon that performs part of the procedure from the second hole over on the side of my belly that would be the one that would stitch up the hernia if possible, Dr Davis takes out prostates that's what he does. Overnight stay in the hospital 7-10 days Catheter out, come back in 3 months.

Liaison came back in talked a little about how the Dr Davis visit went and told me himself Dr Davis was not the most personable guy but was one of the best at what he did.

Next came the Radiologist with a couple trainees and we talked a little bit about SBRT and Seeds but that they had to reorder my last biopsy glass slides to look at to make sure I was a candidate for seeds didn't really understand that but it was kind of hard to stay focused through it all.
Said I was a good candidate for Protons and I felt like he was pushing Protons harder than any other therapy and I guess that makes sense because I read where they were getting ready to kick off a several million dollar expansion into MDA's proton treatment center. Proton therapy would be an 8 week every other day treatment Monday, Wednesday, Friday. If I wanted to go down that route then I COULD opt to sign a waiver for a computer aided coin toss that would decide if I went down the 8 week path or the other side of the coin would be a fractionated higher dose of Protons for 5 weeks instead of 8 but the computer would decide which path I would be on. He also didn't push one way or the other but admitted to me before I asked that they could not tell me what would happen side affect wise 15 or 20 years down the road and that that was the scary part of radiation which I already knew. He told me a 95%+ chance of a cure and if it failed then there was always the option of surgery to remove the prostate but as I already knew the surgery was much more difficult and more long term side affects, could also maybe come back with seeds or more radiation for salvage therapy, so there are options after failed radiation other than only HT. He did say that if I chose a path of RT that he would put me on Lupron for 6 months and start radiation 2 months into the Lupron path. If I started now then Radiation in Nov and come off Lupron some time in the spring. He talked a little bit about it being a good and a bad thing to have choices and that Dr Davis was very good at what he did.

So after that we drove down to Galveston and had a few beers on the beach talked some things over and then drove back to the Rotary House which is a Hotel connected to MDA.

Overall the place is amazing, it's a huge complex and I feel like I couldn't get better treatment anywhere else, I might be able to get as good of treatment here at home but feel like if it didn't go well I would always be wondering why I didn't just go to MDA and do it !

So now it really is decision time and I have been on a teeter totter for the last year I first just said take it out then I started researching what that meant and flipped to RT and stayed on that thought process for most of the year then after the MRI and latest Biopsy I couldn't really come to grips with what I wanted to do.
I have a very supportive wife of 36 years and she told me I needed to do what was best for me in my mind even though we both understand that this affects us both for the rest of our lives so here is where I am at.

I am really struggling with the unknow years down the road even though risks appear to be minimal with RT, the unknown is something that I can't get my head around, surgery has immediate affects with a chance to recover some or possibly most of what I have now. The RO told me 5 years down the road the side effects of both treatments could be pretty similar.

I feel like with the support I have at home and going to one of the best surgeons that I could find at one of the top Cancer Centers in the country with the best equipment will give me the best outcome I can achieve without wondering for the next several years when the other shoe will drop.

That's where my mind is at right now and I am going to Cancun for a week for our 36th anniversary in a couple of weeks and plan on setting up the appointment for treatment before we leave and having a good time out of the country.

I don't know why it's seems to be so hard to say or type here that my decision is to have surgery I think seeing in writing or saying it out loud makes it more real if that's possible, it has been agonizing to say the least.

Thanks to all who have taken the time to respond here it has been invaluable to me.

I think the term "radiation" is mysterious for most people and, for many reasons, comes with negative connotations. Surgery is more identifiable and understandable. Either choice will likely work as well as the other for treating the cancer. The side effect profiles are not identical, but both treatments can have life changing effects. There's just no way to know for sure how things will turn out.

Seems like you have decided what's best for you after careful consideration - that's what is important. Good luck with your treatment!

GTO - You should be feeling a lot better now that you made your decision. Once I got the appointment made, I could hardly wait until that day to get on with it. Enjoy a cerveza or margarita for me.

Good luck with your treatment!