← Return to Diagnosed today w/ PCa. Seeking feedback w/ treatment I think I want

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Profile picture for steveinmalaysia @steveinmalaysia

Hi,

I have a similar prognosis GG2 (3+4), Decipher 0.87, 5/25 positive cores /w cribriform and borderline IDCP. I have a few suggestions (all of which I have done):

1) Get a second opinion on your biopsy from Dr Epstein. He is the leading expert in the field and can give you definitive read on your biopsy (in most cases you will see a change I think... mine was upgraded). It's cheap and relatively easy to do. He has his own company doing the analysis now.
2) Get a decipher test to determine need for ADT. It's really designed for that purpose and will give you a much better idea about your prognosis.
3) Consider joining a patient advocacy group (eg: Ancan). They are great for helping you deal with a very complicated decision making process. They can help you both on the treatment decision and dealing with the anxiety of a cancer diagnosis. They can normally pair you up with a patient who has gone thru the same and likely with same Dr so you have a very good view into what to expect. It has helped me immensely.
4) IMO the best treatment for BCR and minimal side effects is MR Linac SBRT ( with ADT if determined by decipher score). I looked at 1) Tulsa Pro (too high a likelihood of BCR) 2) MR Linac (non invasive good BCR and side effect profile ) 3) HDR Mono Therapy (good but more invasive) 4) HDR Brachy boost with IMRT (good for more advanced disease).
5) I would first try to find the right Dr you are comfortable with who has expertise in the option you are looking at (eg; Dr Kishan @ UCLA for MR Linac) at a Center of Excellence.
6) If you decide on MR Linac get a Prostox test to determine likelihood of GU side effects.
7) If you have a family history of PCa consider a germline test to eliminate presence of PC genes (BRA2, etc).
8) PCa is a slow moving disease so don't jump to any conclusions and treatment decisions because what you decide is a lifelong decision (in the ideal case something you don't have to revisit) so do the homework to make sure you don't have regrets and can live with the decision.
9) Drs like all humans have biases mostly towards the treatment they specialize in so seek out more than one opinion, including advocacy groups. AI (try Claude or ChatGPT) can help alot in the decision making process as it can be a great decision support tool and give you a more independent analysis.

My case is a bit more complicated as I'm self pay (64 y/o no insurance) and am an US expat but have done extensive research to get to a decision.

Wish you the best of luck in your journey.

Steve

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Replies to "Hi, I have a similar prognosis GG2 (3+4), Decipher 0.87, 5/25 positive cores /w cribriform and..."

@steveinmalaysia
You are pretty new here, but I like your advice.

You may not have noticed, but I’ve already been telling people to go to ancan.org Meetings for at least a year and a half. I’ve been going to them for five years, every week. There’s also the reluctant brotherhood meetings and https://cancersupport.net/. All good places to get advice about treatment.

I also recommend Dr. Epstein for second opinions, Hard to beat his one-on-one help when you make a phone call and get the doctor to tell you what’s going on.

You may not have noticed, but many of us are recommending decipher after biopsies and treatment as well as PSE tests before getting a biopsy