Prostatectomy or Radiation? Lot of stress over which to choose

@heavyphil I tried the Cialis. 20mg. It did bring back some life during the night but was not helping with sexual arousal. I did try the vacuum pump but I had trouble filling the shaft. The head would fill but not the shaft. Dr said lets try the trimix. He started me on the minimum dose of 5. That worked for about 3 hours. I started getting nervous. 5 units is enough now for about 2.5 hours. Not having an erection for 5 years has caused some shortening of the shaft. Plus the head does not fill as full. The good thing is your good whether you orgasm or not for the 2.5 hours. I am also taking a 5mg Cialis daily. This seems to give it some fullness during the night.

@tommylee3
I have BRCA2 and I’m still around after 16 years. Had surgery 16 years ago. I was only a 4+3 that may be a factor And why it took 3 1/2 years for mine to came back And I had salvage radiation.

I didn’t find out about BRCA2 until five years ago, And explained why I’ve already had four reoccurrences. The drugs work great.

@jeffmarc My goodness, you are a fountain of information! Thank you. I’m feeling pretty, pretty good about my future.

@tommylee3
As a follow, BRCA2 survivor I thought my history might interest you.

In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. I was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

When Nubeqa stops working I can go on a PARP inhibitor. When that stops working, I can have Pluvicto and/or chemo.

The guy who runs the advanced prostate cancer reluctant brotherhood forum has BRCA2. He’s had a pretty serious case and has a number of metastasis, but has been around for 12 years. A few months ago he had two sessions of Pluvicto and it dropped his PSA down to .04. He and his doctor decided to stop there and wait until his PSA rose before giving him any more sessions. Pluvicto is supposed to work better for people who have BRCA2, At least something to look forward to.

@jeffmark — You continue to amaze me with the information about your Pc journey, and specifically knowledge of BRCA2. The most encouraging line in your reply was this: “The last 25 months I’ve been undetectable.”

That is golden! For me, I was thinking 13 months undetectable was solid. Then the recurrence crushed that. Now I’m at 21 months since completing my ADT/Radiation treatment. I am going to continue living a positive filled and productive life. And if a bump pops up along the way, I’ll address it at that time.

Your information on drugs specific to BRCA2 gene carriers was particularly helpful. Thank you.

Re: my SUI, I will keep you (and others who have it) informed of my next steps.

@tommylee3
Something to consider. I attend a weekly ancan.org Advanced prostate cancer meetings. You could check out the website and see what’s going on.

Starting in January, they’re going to have a meeting every three months for people who have BRCA2 and other genetic issues. There is actually a BRCA2 email. group for people to communicate with each other. Occasionally, someone will come to the meeting that has BRCA2, but they usually have advanced cases. It’s disappointing to hear somebody in their 40s and 50s who just found they have PC and have multiple Mets and a high Gleason scores.

More info

With the help of Joel Axler, amongst the first of our BRCAbros, AnCan is launching a quarterly Inherited Mutations Support Group starting in January, 2026. The Group is scheduled for the 2nd Thursday in the first month of each Quarter - January, April, July and October. We may also schedule extra education sessions if requested... and more support groups if you want them.

Hello everyone.... I'm very grateful for all of the comments, thoughts and experiences that this whole community has shared. As expected,there were sooooo many different experiences.So a quick update on my next steps.... I'm going for a second opinion at Vanderbilt. The Doctor I'm going to is a specialist.... His education is from Mayo Clinic....A Fellowship at Mayo... Masters in Science...and last but not least...an Assistant Professor..... I really think his opinion could help me in many ways.....won't see him until Dec.17th. Will keep y'all posted.Once again, thank you all.

bobby131 - Getting the initial diagnosis of prostate cancer is definitely a shock and something most of us never thought we would hear. For myself, the research I did helped me understand my situation and the fact that there are now so many treatment options. I was diagnosed with Gleason Score 7 (4+3) prostate cancer in 2022. I did a lot of research and ultimately decided on a robotic prostatectomy at a center of excellence (Mayo-Rochester, MN). There are so many opinions surrounding treatment plans, but for me, I focused on the data, common sense, and my life goals. My main goal was to live 30+ additional years prostate cancer free, and be available to my wife, son, parents, siblings, etc... I didn't want to have any complications or side effects from the surgery but this was not an absolute need. In the end - There were no complications with surgery and I have full continence and erectile function. I realize there is a 20% chance of biochemical reoccurrence, but thus far PSA is undetectable - Praying this will be the case for many years to come. There are so many horror stories out there surrounding radical prostatectomies, but based on my research and personal experience, the outcome you have is directly related to your up-front research in choosing the best possible center of excellence and the most qualified surgeon at that center of excellence. I did not want the department head, best author, best instructor - Rather, I wanted the best surgeon that had done thousands of successful radical prostatectomies. Then, you must do the post operation therapy that is prescribed.

There are so many treatment plans out there and you need to pick the one that best aligns with your personal life expectations. If people tell you there is only one option, you probably want to ignore their opinion. For myself, I would definitely recommend a robotically assisted radical prostatectomy at a center of excellence. However, this is based on my person life expectations and experiences.

Good luck with your decision!!

Jim

@jeffmarc thank you for guiding me to ancan.org — I visited the website this morning and was impressed with the dedication and experiences of its founding members. I will consider joining this group to gather additional insights — especially the quarterly BRAC2 meetings. Really appreciate your attention and care about this very interesting period in my life. Thank you.

@tommylee3
You really should sign up for the advanced prostate cancer group. You don’t have to attend any meetings, but they sent out a newsletter once a week that is filled with really good technical information about what’s going on with prostate cancer.

You can also watch previous meetings rather than attending one.