Newly diagnosed and looking for treatment advice.

@ucfron
I have my prostate removed at 62. Recovered very quickly and was actually back at work in four days just on a very light schedule until the 8th day When I was able to work full-time. Since I spent most of my time helping people with computer problems, it didn’t require any physical exertion.

Because I had it at 62 and was relatively young for prostate cancer I had genetic testing about five years ago, 10 Years after surgery. I found out I have BRCA2 Which is the reason I’ve had four reoccurrences since 2010. Nowadays, they want you to have genetic testing earlier to make sure there’s not a genetic problem. Did any of your relatives have cancer breast cancer, pancreatic cancer and prostate cancer are all signs that it could be genetic

You can get hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
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Prostatecancerpromise.org

@ucfron
I have my prostate removed at 62. Recovered very quickly and was actually back at work in four days just on a very light schedule until the 8th day When I was able to work full-time. Since I spent most of my time helping people with computer problems, it didn’t require any physical exertion.

Because I had it at 62 and was relatively young for prostate cancer I had genetic testing about five years ago, 10 Years after surgery. I found out I have BRCA2 Which is the reason I’ve had four reoccurrences since 2010. Nowadays, they want you to have genetic testing earlier to make sure there’s not a genetic problem. Did any of your relatives have cancer breast cancer, pancreatic cancer and prostate cancer are all signs that it could be genetic

You can get hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

@jeffmarc I did order another genetic test from your link and it has arrived. I did a Helix test back in 2020 just because my insurance offered it and it came back with zero issues so I am hoping the same for this next test

If you trust your oncologist, do what he/she says. If you don’t trust him/her, find another oncologist. This is a long term relationship, so make sure you make a good choice. That said, you can get a lot of good questions to ask your doctor on this site.

I am 62 years old healthy and very sexually actuve. PSA jumps between 4.5 and 3.2. MRI in April showed PIRAD 5 Lession approx 2.2 cm in the inner transitional zone. 13 core biopsy confirmed one core, 70% of core 3+4 with 10% being 4. One other core in different area showed 3+3 in only 10% of core. Had second opinion at Moffit in Tampa which matched exactly. Had CT and PSMA PET with both showing all confined to prostate only where identified. I did several AI tests that evaluated my biopsy. Decipher was not one. I Can’t remember some of the names but one was to determine if I was a good candidate for AS. That came back with a 42 and 49 and below says your ok for AS. AS doesn’t excite me though so I think I want treatment. One test described the chances of Metastification over a 10 year period and the need for ADT. This came back showing that I only had a 7% chance of Mets after one modal treatment and no need for ADT. Last test was Prostox which said I had a 95% chance of urinary toxicity (Grade 2) after SBRT and only a 5% chance after IMRT. This eliminated SBRT for me. I started out wanting a RAPP and it out of my body, but then got scared about ED and incontenece by reading blogs, so I started looking elsewhere. I had meetings with several different Drs and different facilities about focal theories and most said I was not a great candidate due to the size of my lession. Met with both Mayo and Sceonnti about TULSA Pro and was exited I found what I was looking for, but Mayo Dr said it would be his second option behind RAPP and chances were good if I did TULSA it would reoccur sometime later. Well after 7 mos of reading, visiting 3 different centers including Mayo and Moffit, and talking with 9 different Onocology / Drs, I think I’ve decided on removal, and I’m trying to schedule it with Dr Ram at Mayo for later this year. It does scare the crap out of me, but I think that would be the best to move forward. I guess I’ll pray for the best regarding ED and incontenence but will just live with it if it occurs. I chose RAPP due to salvage opportunities if/when it reoccurs and because success is easy to measure since PSA should be zero or close to it. I also feel I’m young and healthy now and can overcome surgery better today then I could 7-10 years from now. I really just want this shit out of my body and will face the other consequences that arise. It took me a long time to get to this point but I think I am ready to do it. I have a beautiful strong and loving wife to help me, and great family of support. Interested to hear everyone’s opinion if they were in my shoes.

@jimgaudette It’s not necessarily about trust.
Both you and I were probably very good in our respective professions. But, we probably didn’t know everything (at least I didn’t). It’s no different with doctors (urologists, oncologists, etc.).

I always kept in mind that doctors (and medical teams) are human beings, not gods; they’re just people like you and me, working in an occupation they have an aptitude and passion for; but, they’re not perfect; they’re human, with human frailties; they sometimes make errors.

They also have lives to live outside of work, spouses and children to spend time with, vacations to take, student loans to pay off, and on and on and on……

And, they’re not always right; no one doctor knows everything; they only know as much as they’ve learned and experienced. Whatever they tell you, accept it with some cautious and informed skepticism (and optimism).

On a few occasions we changed my treatment plan based on my inputs (from what I heard and read others experience). In other instances they were able to explain to me why my recommendation was not optimal for my diagnosis.

That’s what self-advocacy and shared decision-making is all about. That’s how I worked with my medical team, and I think (hope?) it led to a better outcome.

@jimgaudette It’s not necessarily about trust.
Both you and I were probably very good in our respective professions. But, we probably didn’t know everything (at least I didn’t). It’s no different with doctors (urologists, oncologists, etc.).

I always kept in mind that doctors (and medical teams) are human beings, not gods; they’re just people like you and me, working in an occupation they have an aptitude and passion for; but, they’re not perfect; they’re human, with human frailties; they sometimes make errors.

They also have lives to live outside of work, spouses and children to spend time with, vacations to take, student loans to pay off, and on and on and on……

And, they’re not always right; no one doctor knows everything; they only know as much as they’ve learned and experienced. Whatever they tell you, accept it with some cautious and informed skepticism (and optimism).

On a few occasions we changed my treatment plan based on my inputs (from what I heard and read others experience). In other instances they were able to explain to me why my recommendation was not optimal for my diagnosis.

That’s what self-advocacy and shared decision-making is all about. That’s how I worked with my medical team, and I think (hope?) it led to a better outcome.

Really comes down to what you’re comfortable with. I chose Tulsa (Mayo Rochester) at 65 years old for my 4+3. At 1 year I am cancer free. I know I have a long way to go but clinical data at 3 years out is showing Tulsa is right in the same ballpark as other treatments for recurrence. What sold me was all other options are still on the table if it returns. I liked the low risk of side effects as ED was not something my wife or I were ready for. My advice is do all the research, weigh the pro and cons, make the decision that is right for you, and never second guess that decision. Good luck.

@jcf58 I seriously considered TULSA-Pro. I was also told other treatments are still an option if you have a reoccurrence, but I think that only includes radiation. I am curious what others have heard about surgery after TULSA-Pro.