Newly Diagnosed and Dreading It
On 10/1/2024 I had my biopsy after a 4.7 PSA (and fairly high scores on the more "advanced version" of it). I hoped beyond hope that it was the result of lifestyle that could be curbed, so I requested a delay of a few weeks before taking the test again and not doing any of the activities that can impact the score, no sexual activity (or masturbation), stopped riding my bike, all of it. Unfortunately that didn't help, I had to get that biopsy.
The day of the doctor already mentioned he saw something "concerning", so I knew it was coming (hell, I knew it was coming anyway), and the next day confirmed it: Gleason 3+4 on one core - and as we all know, on 7 is just a 7 across the board.
Because the rest of my cores were very low, I was deemed to be perfect for active surveillance and I felt I dodged a big bullet. Of course that mean more biopsies but if that was the worst of it then so be it.
Then the Decipher came back. 0.68. Well, crap. Now it's all hands on deck, man the battle stations because that means trouble. That was yesterday.
This is my second cancer (and not a metastasis). I figured losing my kidney to cancer would better prepare me for this, and in some ways it probably has. But I won't lie, this isn't the same and I'm scared out of my mind.
I don't fear the surgery or even the cancer, the same doctor that took the kidney with DaVinci will use the same robot to remove the prostate (should I go that route which all signs point to likely). What I fear is the quality of life changes afterwards.
I've read some good and bad, it's hard to draw a bead on it. It seems like 100% incontinence, at least in the first few months. I can deal with this, as horrible as it sounds, if it's short term. A diaper my whole life is not something I feel I can deal with and I cannot help but to fixate on this. I've order the recommended reading, I understand there are things you can do, but in the end it's going to do what it's going to do.
ED is also not something I'm looking forward to. My ability to keep and maintain an erection has been almost a point of pride, I've been the Ever Ready bunny my whole life, so this is (no pun intended) very deflating. Coupled with dry and possibly painful orgasms, the prospect is horrible to me.
Fortunately my doctor was already part of the Center of Excellence group of hospitals, so I have that. I have the means to seek advice from MD Anderson and intend to do so before I engage in my treatment, but in the end it's going to be not fun.
And I'm positively mortified about this. Enough that all my prep, all my being a realist and pragmatic still doesn't help much. I'm even seeking out a psychologist that specializes in cancer patients because I'm having a hell of a time coming to grips with life after losing one of my key "man parts".
I don't have a question per se, mostly just saying hello and to jump into the big pool of men sharing my concerns and misery.
I left out that I'm 54 years old, "young enough to recover" according to doctors and "too young to be dealing with this", also by doctors lol. I don't feel particularly blessed at the moment!
thanks for sharing with us. I know our members can understand what you are going through. It sounds like you are doing all the right things as far as researching and being an advocate for yourself. I am sending over some articles that offer tips for incontinence and ED, I hope this is helpful to read: https://prostatecancer.net/stories/incontinence and https://prostatecancer.net/living/erectile-dysfunction-now-what. I hope our community members jump in here with their stories as well. Please keep us posted with what you decide. Sending you strength. Jill (Team Member)
thank you for your kind response and the links. That was last week, I've had 7 days now to obsess over this and deep dive with all resources available to me. The ED/incontinence issue still weighs heavy in my mind with some movement in the right direction after reading one medical study after another - at least on the ED part, the incontinence part is pretty much luck of the draw it seems - but I'm doing whatever is in my own power to assist and perhaps it will be for nothing but not for the lack of trying - or perhaps my preparation will be the difference between long term incontinence and none at all.
My initial reaction was "get it out of me ASAP" but I'm moving on that a bit. The doctor says he's OK if I wait a couple months and that it won't make much difference, meaning I can push this to January and spend more time working on the things within my control and doing my level best to settle my overactive brain.
I've been fairly surprised at the number of men close to my age dealing with this, as it was anomalous, according to several doctors, to have it this early, which gave them some hope that the younger age would result in better recovery. We'll see.it is so good to hear how you are taking the time and doing the research. It is important to feel good about your decision. I know there must be a million thoughts and feelings overwhelming you. It must be a lot to process. Take your time. Keep us posted. Jill (Team Member)
Look into radiation vs RP and getting erections afterward.
Im thinking rad doesn’t mess up nerves as much? I had rad and am getting erections. I gess maybe as good as before.. lolHere is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
