Just diagnosed gobsmacked looking for advice

Posted by mhreed39 @mhreed39, Jun 24 8:30am

Offically diagnosed with prostate cancer 6/21/24. PSA is 15.25 (up from 2.8 six months ago). PI-RADS 5 score from MRI.
Biopsy score was Gleason 8 (4+4), Grade 4. 12 of 16 cores involved. Cribiform pattern present. Yes to Extraprostatic extension and Perineural Invasion. PMSA PET scan is being scheduled.
Have met with a surgeon who believes surgery is the best option. He will be taking both nerve bundles and lymph nodes. I have an appointment with a radiation oncolgist next week to get a second opinion.
At this point I know my inital decision is surgery v. radiation but with a cancer this aggressive I worry that a second or even more rounds of treatments are in my future and how my initial decision effects my later options.
Looking for advice or your experience.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

OTTADV | @ottadv | Jun 28 3:27pm

You certainly have a lot to consider. Like most people, making this decision is not easy and it usually boils down to the side effects, which there are many.

Side effects of the surgery and side effects of the cancer.

I elected surgery because it provided the best alternative if the cancer returned which it did. By having the PSMA Pet Scan, we were able to catch it before it got too far. I don't like the side effects of the surgery or the treatments, but I am pretty sure they are better than the side effects of the cancer and I would do it again.

Your cancer is aggressive with that kind of PSA increase. Mine was fast growing also. One thing I did to help me make the decision was to get the opinion of an oncologist who does neither radiation nor surgery. That too was helpful.
I hope this helps. Lastly, I would pray for wisdom.

All the best, John.

retireditguy | @retireditguy | 4 days ago

Yep, sounds like how I felt when I was diagnosed 3/30. My best piece of advice is go to a recognized "cancer center of excellence" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Also, I'd recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. In the end I felt surgery was the best option for me and that's what I did on 6/24 at Mayo Phoenix. So far the results have exceeded my expectations.

jmacllm | @jmacllm | 4 days ago

I'm glad you found this forum. It's a tough emotional rollercoaster. I got my Gleason 3+4 diagnosis at age 53 this February. Apparently, it's an aggressive variety. I'm choosing surgery, but I've gone back and forth a half dozen times. (Ultimately, I decided based on my age that surgery is my best chance longer term.) I've read at least 9 books since my diagnosis just trying to get my head around this. You'll find out how many others have prostate cancer when you realize that most of the books in the library have a waiting list. Amazon will have a ton. A few are: (1) Dr. Walsh's guide to surviving prostate cancer, (2) Invasion of the prostate snatchers (I know, silly name but decent book), (3) You Can Beat Prostate Cancer (this one really sells proton therapy) and several diet books about attacking cancer with food - (1) The China Study, (2) Anti Cancer, A new way of Life, (3) Cancer free with Food.). The food books are interesting for longer term, but they don't answer the immediate question of what you should do. For that matter, none of the books answer that question, but they each have a nugget or two that helped guide my decision. I got a notebook and started outlining questions to ask various providers so I didn't miss anything. That helped. I believe that the advice in this forum to take some time to figure out the best decision for you is good advice. Good luck!