Just diagnosed

Welcome to this brotherhood that no one wants to join. I'm not a medical professional nor do I have extensive experience dealing with PCa. That said, here's 3 pieces of advice I will share: 1. My best piece of advice is to 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. 2. 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. 3. Just know that since so much of the decision making regarding treatment plans for PCa is based on lab results, it's reasonable to get a 2nd (or even 3rd) opinion from other recognized cancer centers of excellence (without actually physically visiting them). Multiple expert opinions can be helpful if you're struggling to decide which treatment plan is best for you. Best wishes.

3+3 is barely considered cancer, And many doctors want to change that definition.

Active surveillance is what most people with a 3+3 should be considering. You should definitely try to get yourself to a center of excellence and get opinions from them.

I attended a seminar a couple of months ago where they discussed going into active surveillance for a 3+3. The results were overwhelming for people, not doing anything until they actually had a change in the Intensity of their disease.

If the doctor telling you to do surgery is a urologist that is How they make their big money, Doing surgery. You want to check with the radiation oncologist and other doctors because there are many more techniques besides radiation and surgery, treatments like Focal Therapy, NanoKnife, cryotherapy, HIFU,, TULSA-PRO, etc. many of these would be quite appropriate for somebody with a 3+3 if they really needed to do something.

Great thoughts - many thanks!

Thanks so much! I am on the book and the centers for excellence!

@doulglasmayo

I agree with @retiredguy and you may want Telehealth second opinions. I did 5 treatments with the Mridian but they also have another built in mri machine called the Elekta. The type of radiation machine matters regarding toxicity and side effects. Google or chatgpt the Mirage study regarding built in mri vs non built in mri machines.

Although I had 3+4, for me, I would still have been treated and not do active surveillance. If they check your psa every 3 months. That's 3 months of potential growth. Doctors cannot say how fast it will grow but the Decipher test gives an indication. IF it goes outside of your prostate during growth and surveillance period, it can create additional problems. Every body is different.

Get multiple opinions and if you can, go to a center of excellence. Being on this message board is a great first start. I didn’t find it until after my procedure (I still would have done the procedure I did). I talked to 7 doctors before I decided on Tulsa Pro. I My PSA was 8.6 and is now 0.68. Pca is a bit odd as there are so many ways to treat it and so many different opinions on what is best. Everybody’s story and situation is unique. Do the research. Good luck.
My story: https://connect.mayoclinic.org/discussion/tulsa-pro-experience-mayo-clinic-mn-july-2024/

Having had a RARP at Mayo in June, I can tell you in all honesty that for a 3+3=6 Gleason score, I would NOT consider surgery regardless of the Decipher score! The surgery is not that big a deal, but the incontinence, impotence, and nerve damage that causes me continuing pain/numbness are a very big deal. Granted that you might not experience any or all of these but most patients do, and in my case they are mostly permanent. Get more opinions. You will find active surveillance or other less invasive procedures will manage you situation well. I was a Gleason 9 and stage pT3a but had a reoccurance at 3 months with < 3 month doubling times so now I'm getting ADT, AR, and radiation. Obviously, my cancer had already matastisized, so even in my case I got no benefit from surgery and all the consequences. I'm not saying RARP doesn't have its place, but I don't think your case is one of them. Talk to more doctors and not just urologists. Good luck.

Just a few observations about your post. Most men don't have long term ED and incontinence following RP. Most men recover continence fairly quickly if they are young. The potential ED is dependent on the extent of disease locally, age of the patient and whether any ED existed pre op.
It sounds like you have an aggressive tumor with a G9 and rapid doubling time. I, also, had a G9 and rapid doubling time (< 1 month!). I had an RP with post op recurrence with limited metastatic disease. I have persistent stress incontinence and ED (could be due to the ADT as well). I am still glad I had the RP because it got rid of the significant majority of my cancer. More than 2 years after my triple therapy/MDT/pelvic radiation my PSA has remained undetectable and my T is back.
Radiation to the prostate has significant side effects as well. Just most of them are delayed a year or two. I had regained continence a year after my RP but became partially incontinent following my pelvic radiation.

Hi douglasmayo - It appears that we’re in a similar place. I’m 68, also in pretty good shape, diagnosed with 3+3=6 grade group 1 in four of nine cores a few months ago. PSA had been increasing slowly over eight years from 2 to 5 but curiously just dropped to under 4 just a week ago. Was definitely considering active surveillance notwithstanding a strong family history of prostate cancer until my Decipher score came back a few weeks ago at a very high .78. Also just got back a few days ago another genomic test which indicated that I apparently don’t have the gene mutations (BRCA 1 and 2 and others) which can pose a real concern for aggressive and recurring prostate cancer. I would recommend that you learn as much as you can about prostate cancer in general and about the Decipher test in particular and, at the same time, get two or even three opinions from highly regarded doctors of different disciplines (surgeon, radiologist, etc.) at cancer centers of excellence if possible. Having disparity between your clinical markers (psa, images and biopsy) and your genomic results (Deciper and others) and deciding on how much emphasis to place on your Decipher score can be very stressful and confusing but knowledge is power.
Best of luck as you begin your journey and don’t hesitate to reach out should you want to connect and share notes.

I just got done with the 5 treatment radiation. I had the Gleason 3+3 and PSA 6.92. My MRI showed no legions and my urologist insisted on a biopsy and that is when he found the cancer. The results came back that I had the more aggressive cancer and said we could wait and see how it goes or do radiation. I wanted it gone so did the radiation. I am also doing TRT and they stop that so that the T would not support cell growth during the treatment. Once my PSA is back below 4 I will be able to go back to my TRT. Right now my side effects are minimal I would consider. Everything is working just maybe a little slower flow but i am feeling better every day. Between my urologist and oncologist I felt confident in the treatment. I had my procedure done in Austin TX. Please let me know if you want to talk to my doctors.