New to Reluctant Brotherhood

capecodder

https://csn.cancer.org/discussion/comment/1723013#Comment_1723013

Hi Khaffey! I am scheduled for another MRI on June 10, then another biopsy on Aug 1. First biopsy in Dec 2024 was trans rectal, the one on Aug 1 will be trans perineal. Was not able to get Decipher done from original biopsy samples for some reason, so hope to get Decipher test with upcoming biopsy to help determine potential aggressiveness like you did. Great to hear about your positive (as positive as this journey could be) so far. Hope the ED resolves soon.

Khaffey

Good Luck. The trans perineal biopsy is no big deal. I think the trans rectal was way worse. Keep us posted.

capecodder

I have been off this forum for a while due to caregiving needs for my older sister, who has been a paraplegic for 31 years and lives alone. We love about 90 minutes apart, which is a blessing since she was recently given “months to live” due to chronic bone infection that came from multiple body sores and pressure wounds typical for paraplegics. I need to be around to drive her and lift her in and out of her chair at appointments. I have not told her of my PCa as she has enough on her plate. I am 66, good health, diagnosed with 3+4, CHEK2 variant, PSA 2.5, PSA density 0.075, 33 cc prostate, contained in prostate according to PSMA PET, father had PCa and died at 89 yo. Been on AS since Dec 2025. Just received my Decipher results after a couple of attempts at getting it done, scoring 0.54, intermediate risk. Being treated at Dana Farber in Boston, a top cancer center. My doctor and I spoke yesterday about Decipher and the need for me to start treatment, but I shared my caregiving needs to my sister, and he feels I can wait 2-3 months to see what happens with her situation. Was leaning towards surgery, but with CHEK2 and Decipher score, I think I have a higher chance for recurrent cancer after surgery, so I am now wondering if I should just do radiation and hope it gets it all. I do not want to go on hormone therapy, so not sure which treatment gives me the best odds of no recurrence and best long-term prognosis. Welcome any input from those on here with intermediate Decipher scores, CHEK2, or other similarities. Thanks!!

capecodder

Oops - on AS since Dec 2024

Rob.Ski

I dont get how your chances are better to start with radiation, especially if cancer is thought to be contained. People have their reasons for not doing surgery, (e.g. side effects, age, other health conditions, etc.). Doesn't sound like its that driving the decision. Did doctors say surgery has higher recurrence in your situation?

capecodder

https://csn.cancer.org/discussion/comment/1725360#Comment_1725360

I have not asked doctors yet about chances of recurrence, but read that surgery has 25-30% chance and radiation is lower, but I need to get the Dana Farber team’s input. Thanks!

Khaffey

I had a Decipher score of 0.80 high risk. Also two tumors, 4+3 and 3+3. All contained to my prostate. The pathology determined that the 4+3 was actually a 4+4. I am now 9 months out from surgery, incontinence is a non issue and sexual function is improving. My understanding was the recurrence rate is the same for radiation or surgery. If the cancer returns after radiation, the surgery is more difficult. At times I questioned my choice, but I know that I made the right decision.

Khaffey

Also, when I consulted with the radiologist at NYU Langone, hormone therapy was part of the Cyberknife radiation treatment. Three months before the treatments and three months after. That played a big part of my decision to go with the surgery.

capecodder

https://csn.cancer.org/discussion/comment/1725364#Comment_1725364

Thanks for this info!

Josephg

https://csn.cancer.org/discussion/comment/1725362#Comment_1725362

If I were in your shoes, I would not make any decisions until consulting with my medical team. They are the experts, and much more informed with your specific case than any online reading materials. After their input, and any other input that you may want to factor in, the final decision is yours, and yours alone, to make.

I wish you the best of outcomes on your PCa journey.

capecodder

https://csn.cancer.org/discussion/comment/1725373#Comment_1725373

Thanks Joseph! I am definitely working with the experts as this is complicated stuff. Wish you well on your journey.

Khaffey

Just remember, research is key. I learned a lot from on line research and a great book by Dr Patrick Walsh, A Guide to Surviving Prostate Cancer. Also, there are more treatment options besides surgery and radiation. You want to be familiar with the terminology and have some knowledge of what your doctors are talking about. Too much knowledge is a good thing. Like josephg said, the ultimate decision is yours.