Newly diagnosed - treatment options being weighed - What next?

There is a lot of opinion thrown around on the subject of relative side effects for the various treatment options. And that is what it is: opinion. The general perspective is that the surgical side effects show up immediately and sometimes improve with time, while the radiation side effects start at a minimal level and get worse with time. Actual, long term studies are difficult to come by.

Just as much of the radiation related side effect data includes treatment from years ago which appears to skew the numbers and make things appear worse than they are, the same is true for surgical data. Most lead practitioners are more than willing to share their personal 'record book' with patients. And they have no reason to pad things when they are face to face with a patient.

I had primary radiation therapy, and at this point 25 months later I have no side effects from it. Also an undetectable PSA (of course still under hormone therapy, so jury's out on the true effectiveness of the radiation). So far, pretty pleased. Frankly, with my diagnosis, worrying about secondary cancers 10 years or more away wasn't a high priority. Just being here 10 or more years from now will be a win!

My urologist warned me as a cT3 stage and G9 that he would do a "very wide excision", without "luxury things" like nerve sparing. All the while kind of not even making eye contact. He was definitely soft-selling the surgery in my case, and radiation seemed like a better option to hit the prostate and a margin around it without the immediately devastating side effects my surgery would have had. For some reason too, I didn't have the "Ack, get it out!" reaction, nor did I care to have a post op pathology to really know the full extent of it. My biopsy was bad enough to tell me the bad cells were getting ready to PAR-TAY!

Very tough choices, but the good news is you're likely to have pretty good outcome no matter which you eventually choose.

Good luck, my unwilling brother!

Mel,

See my response to halbert above.

Radiation to your pelvic nodes is in a different place than primary RT or SRT. Different place, different potential SEs.

- Allen

Mel,
You can look up a lot of studies on secondary cancers. With the older ERBT it was about 5%. With IMRT it is about .5% same as the risk of death from surgery. For Brachy it is zero.
Both Scholz and my RO told me that whatever SEs you have at 2 years are the SEs you will have for the rest of your life, both good and bad.

I would add this to the mostly excellent advice you've been given. Surgery fails 30% of the time. The chances are that if you have surgery, the post surgical pathology will be worse than the biopsy DX. I hope not in your case, but it seems a lot of post surgical paths are worse. Given that you're already a Gleason 8, and you have a better than average chance of falling into the 30% failure group, you might want to seriously consider radiation as your primary treatment rather than having to have it a few months after your surgery. The SE's of having radiation following surgery are more likely than from primary treatment. It may have been said already, but if you decide on radiation I would assume the RO will want to start you on hormone therapy before radiation and for several months during and after. The SE's of HT will be worse than the radiation in all likelihood.

I hope I'm wrong on some of these assumptions because you face a difficult decision and I certainly wouldn't want to provide false information. Thankfully, the experts here will correct me in short order if I have.

Good luck to you.

As a G8, I would really go for clarity about whether you're organ contained. If you're not--or they're not sure, then radiation is likely in your future--and surgery might not be your best first choice. And I say that as a "surgery guy".

G8 is kind of the wild card of PC. Some G8's are nicely contained and surgery is a once and done affair. Other G8's are mean and nasty and throwing the kitchen sink at it isn't always enough. Keep digging until you're truly comfortable with your decision.

Well, had my RALP on 12 Nov. Initial biopsy was 2-G7 and 2-G8 in upper and mid right side. Had been praying all was still contained but just got call from my Doctor that the full biopsy and review showed the the semenal glands had been hit too and that the G8's were higher, at G9. Told me that the next phase wouild probably be radiation and possibly some medications to clear the rest but nothing for 6 months to allow full healing and some PSA follow-up tests. Anyone have similar history. Thoughts?

Post Edited (Texan_2015) : 11/17/2015 2:47:38 PM (GMT-7)

Michael_T.. thanks for the response. Yes, I think he was referring to the Lupron and such. What can you tell me about them as far as side effects and such and if insurance covered them. Lots of changes every day but first hand experience is always the best. Where did you have the RT done? It looks like things have worked out good for you so far.

Post deleted because I'm a dimwit...

You go! Texan Dude...!!!

Post Edited (Paul65) : 11/17/2015 7:55:41 PM (GMT-7)

Octorobo - thanks for the encouraging words. I meet with my Urologist this Friday to go over my 'future' (and get this catheter removed!). Lots more to think about now that life has a timeline.

Well as a refresher, I had a da-vinci RAPT on 12-Nov-2015 and follow-uo biopsy showed cancer on outside of the prostate and in the semenal-vesical on one side, and the G7 and G8s I had were upgraded to G8s & G9s.
Just had my 1st PSA since the surgery and Urologist was expecting an 'undetectable report' but instead we got a PSA of 0.1, which in any other world would be great but not after the prostate is gone. He has set me up with a Dr. Courtney over at the UT-Southwestern Medical Center in Dallas as he feels he has the best information and training on proceeding from here. Mentioned possible triple-treatment of HT, RT and perhaps even CHEMO but won't know until my visit in a week or two. Know there are a lot of variations and such as a result of these proposals, one of my concerns is the RT could cause bladder, kidney or bowel 'burns' or such. HT and CHEMO have their own side effects. Told my Urologist that 0.1 was what my first ever PSA was 25 years ago. He said that they concern he has is that since my biopsy was G9, a very aggressive from he wanted to be aggressive in the treatment as well. Just wondering if anyone has any similar history and possible references for input. Anyone used Cancer Treatment Centers of America in Tulsa? I had thought about that facility or M D Andersen in Houston but UT Southwestern and Baylor both have a great facility here in Dallas. Thank you all for your support and advice. It helps to know there are support people out there. My wife is having a hard time with this right now wondering what she would do without me but I think we are a long way from 'planting me" LOL

Can anyone shed any light if treatments such as RT, CHEMO or HT are covered by Medicare? Just wondering as it seems a lot of the really good Oncologists do not accept Medicare so trying to see if I will end up spending my grandkids inheritance to stay alive!

Hello Texan

Once again, sorry for your recent news. I hope you did not shoot the messenger- just kidding.
UT
Southwestern is very good. I do not know if Baylor has the top recognized prostate specialists that are at UT Southwestern or MD Anderson in Houston. Others I am sure will give input. If you want to stay in Texas, those are the only two I would consider. Certainly consider other world class major research facilities. I would also look at Dattoli in Florida. I used M D Anderson and could not be more pleased with the results. With the outstanding resources you have available, I would not include CCA in my decision making process. Blessings. Go kick the snot out of the beast.

Post Edited (Octorobo) : 1/14/2016 4:16:00 AM (GMT-7)