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New to Reluctant Brotherhood
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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.
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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!!
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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?
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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.
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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.
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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.
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Latest update and worry. I am reading “Invasion of the Prostate Snatchers” by Dr. Mark Scholz. Basic theme is that the medical profession overtreats PCa with surgery, so he encourages patients to consider Active Surveillance as long as you can, then look at the radiation and focal therapies first and surgery last. Dr. Scholz emphasizes that the patient consider quality of life issues, take the appropriate time to make a decision, and he feels surgery has the most negative impact on quality of life. Now I am wondering if I should take more time to decide since I am similar to the case used in the book (I am 3+4, 2.5 PSA, contained to prostate as of July 25, CHEK2, 0.54 Decipher), where the patient went for 20+years on AS. However, my docs at Dana Farber are saying I should probably start treatment soon. Still undecided on surgery, radiation, or now learning about TULSA Pro. Overwhelmed.
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Hi,
By responses from both surgery and radiation treatment people on this form the risks are there regardless of with method you choose. AS is the only way to avoid possible damage to bladder,colon, ED or Urine leakage, but that does not address the cancer. The first thing should be finding qualified/experienced doctors plus the best facilities to ensure the best outcome. No two cases are alike and the best results should be the one suited to your specific situation, cancer agressiveness,tumor location,ect. A second opinion does not hurt……..
Dave 3+4
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I was at Gleason 6 for seven years and did active surveillance. Last year it progressed to 7 (3+4). Decipher came back at 37. I had always told myself that if it ever progressed I'd do something before it got outside the prostate. My urologist wanted me to do external beam and brachytherapy along with ADT or to have surgery. I spoke with 3 oncologists - one who did external beam, one who did brachy and the other at a symposium at UCSF. They all felt that was overkill and that either external beam or brachy alone would be sufficient. I settled on brachytherapy and my initial PSA after the procedure was .7 precipitously down from 11 prior to the procedure.
I had massive urination issues about a week and a half after the brachytherapy and had to go to the ER three times for Foley catheters. After the 3 Foleys I ended up getting a supra pubic catheter and had it in for three months - it was permanently removed last Friday. Urination is back to normal although some burning.
My oncologist said I was an outlier with all my urination symptoms but thought I'd let you know what could happen if you choose brachytherapy. Good luck with whatever you choose to do.
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This paper is easy to read and relevant.
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