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What would you do if PSA stayed at 0.15 after prostatectomy?
Prostate Cancer | Last Active: Sep 13 6:54am | Replies (45)Comment receiving replies
Hi Jeff,
Thanks for sharing your story. I can only imagine how tough it has been to deal with prostate cancer coming back multiple times, and your positive attitude is certainly inspirational.
I understand that the number one goal is to eradicate the cancer and I want that. What I am struggling with are the two very different opinions I have received from two hospitals. One wants to take a conservative approach and the other is recommending a much more aggressive plan. If I go the conservative route, I feel like I have a better chance of not losing the progress I have made with sexual function and bladder control, but then I worry about recurrence within the next two to five years.
I lost one set of nerve bundles during surgery, so natural erections have been difficult. I have managed to keep the sensation of orgasm, and I want to preserve as much of my remaining function as possible. That is why I am concerned about moving ahead with ADT and radiation, especially with side effects such as loss of desire, weight gain, muscle loss, and potential damage to the bladder, colon, and nerves.
I have not had genetic testing yet, but I think that is a great suggestion. Will my doctor find value/use in this type of genetic testing as well?
Thanks again for sharing your experience. It helps to hear from someone who has actually gone through this.
Replies to "Hi Jeff, Thanks for sharing your story. I can only imagine how tough it has been..."
When I went on ADT for six months two years after my prostatectomy, the side effects were minimal. When I went back on it several years later for three years, the side effects became increasingly severe to the point where I chose intermittent ADT instead of continuous ADT. I went off ADT 10 months ago, am slowly regaining testosterone and have had undetectable PSA for four years now. Daily exercise and calcium supplements are important and talk to your doctor about Alendronate Sodium or similar for your bones. Good diet, exercise and no alcohol are important.
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One problem is You have not said what your Gleason score is. That is a major factor in deciding how aggressive one should be. It’s also a major factor in whether you should be on ADT and how long. The question is do you want to have progression free survival (PFS), if yourGleason is higher than 7 Then the more extensive radiation really makes sense as well as ADT.
The more extensive radiation gives you that longer PFS, And that radiation is not likely to affect your erections. All the spots that it would affect are already gone after surgery.. It’s the Orgovyx (Relugolix) (ADT) that will cause the ED problems as you probably know, Due to loss of desire,. I had 7 1/2 weeks of radiation and it had no side effects at all, Some people have fatigue some people have temporary urinary tract problems. I did have a six month Lupron shot shortly before radiation, I didn’t realize it had side effects back then and didn’t notice any.
I’m not sure you’ve heard about bimix or Trimix, You inject it into the penis in order to get a good erection. I know that in my case I still had some desire, even though I was on ADT.
What type of medical centers did you go to, to get those two different sets of Advice? Was one of them a center of excellence? If you did not go to a center of excellence that may be the best option getting a third opinion from experts.
Another thing you could do is get a decipher test, It will tell you how likely it is you will have a reoccurrence. If you get a very low number, then you can probably avoid ADT.
Yes, ADT has a number of side effects. I’ve never had a problem gaining weight even though I’ve been on it for nine years. I weigh myself every morning and base what I eat on what I weigh. I go to the gym three times a week (usually) and walk on the track (Or around the neighborhood) At least a mile twice a day every day. It keeps one healthy, Which is very important for prostate cancer. I also get bone strengthening agents. I was on Fosamax for six years and I’m now I’m getting Zometa infusions every three months. A bone specialist that a recent conference said that everybody on ADC should be on bone strengthers.
Damage to the bladder, colon, and nerves is not normally a big problem for most people with the radiation you’re talking about. Those are problems that can occur more often if you have radiation to the prostate initially. I’m not saying it won’t cause problems, but they are not usually a big deal for the majority of people and the problems are usually for a short time.