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Boys, sometimes this gets me down
So many of you guys are really smart and understand this cancer well. It’s a pleasure to see all the help this support group can provide.
I’m in the mental game now and it’s ok but it’s not what I would call good. Most days are ok but sometimes it really sucks to know I’m 57 and never going to have sex again. Gleason 9, Rp, radiation and now on the shot/pills treatment for god knows how long. I have been gutted like a pumpkin and no nerves to spare. The thought of a shot to get hard is absolutely mortifying and out of the picture, for now, anyway.
Got a fantastic wife who has been by my side without question. I know how lucky I am to have her and I feel terrible she has to go through this with me.
Yes I am glad to be alive. Nature killed me in 2024 and to still be here is an amazing gift I do not take for granted.
Anyway, just wanted to vent to guys who get it. Actually I hope you don’t get it but you know what I mean.
Guess I am hoping to hear how some of you are getting through the mental game. Pity party over 🙂
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nothing fun about thinking about cancer and the 'winding down of life'
supposedly we are the only animals that know we have a beginning and an end.
It should never be a race to to the finish line but denying it does not help either.
I find it useful to try to appreciate getting all the days I can get
just like old cars, sooner or later more parts wear out, rust creeps in, I can do without perfect eyesight, I can enjoy life knowing I cannot run like I was 30, I can do without a prostate, and some other non essential parts (like my old car, if the AC does not work, one of the doors does not always open, the radio only gets a few stations, however, I can still go places) none of this is fun but I am not rushing to the finish line. I want all the days I can get
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13 Reactions72, two days after the "6 months to a year left discussion," with the palliative doc. I'm in year 6 after diagnosis. Stage 4 PC answered a lot of questions for me. With decades of testing, high PSA's, and wondering what was wrong down there I finally found out it was advanced prostate cancer. Took about a year to mentally adjust to my terminal diagnosis. The last five years have been a gift. Yes, improved nutrition, movement/exercise, and quarterly, now monthly, oncology appointments helps. Same with family and friendships. Friendships with other advanced prostate cancer guys have been epically helpful. We are all walking on the same path, some faster than others, but the gift of our stories to each other about our prostate cancer journeys/ experiences have been wonderfully helpful. We share a level of awareness that few others can comprehend/understand. Survive onward my friends.
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8 ReactionsI am also concerned about my future sex life-at age 52. But one thing that I can tell you is that injections are not as bad as they sound. No pain whatsoever. I am still trying to find the right dose/mixture. But had sex with my gf for the first time in over 8 months last weekend. It’s different, less spontaneous, but was still nice.
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8 Reactions@topf - you are one lucky guy. Imagine 10 years without.
Good news is I'll be starting ADT soon and hopefully won't think about it every day after that.
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2 Reactionsmy husband feels exactly like that! a shell of a man! He dreams of the day we can have sex again like normal couples. Maybe he'll get a pause from ADT, maybe not!? Stage 4 metastatic, been on Firmagon and Zytiga for almost a year now and scans showed great improvement after chemo last summer. He's 56 now.
It sucks and gets us both down! I'm actually going to see a therapist tomorrow!
Hang in there!
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7 ReactionsAt one point I thought " No way I can do ADT" . But I did it . It's not pleasant , for sure, but nowwhere near as bad as I thought.
For injections- do a little experiment. pinch Mr. Johnson with your fingernails for 5 seconds. Thats' pretty much it.
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2 Reactions@proftom2
Thank you so much for your comments. You are correct...only people who have this going on can really relate to others hanging out here in the unknown wondering what the answers are and what could possibly help us to feel normal like it used to be.
@beaquilter Good news for you and your husband: there's starting to be a shift in thinking about stage 4 prostate cancer and ADT.
Up a few months ago, consensus was based on studies like SWOG, which had shown that intermittent ADT had worse outcomes for metastatic prostate cancer, even though it showed promise for earlier stages of the disease.
Now the LIBERTAS study is starting to dive more into the details (instead of treating all advanced prostate cancer as a single group), and preliminary results suggest that intermittent ADT might work for *some* metastatic/stage-4 situations if you keep taking an ARSI (specifically Apalutamide in this study).
There's no long-term data yet, but the latest batch of early LIBERTAS results came out just last month. This is how fast things are moving in prostate-cancer treatment: if your oncologist takes a 4-week vacation, best practices might have changed significantly by the time they get back (!)
https://ascopubs.org/doi/10.1200/JCO.2024.42.4_suppl.TPS236
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3 Reactions@proftom2 I am sorry to hear of your diagnosis. I think we all fear that day and I wish you strength and comfort. Thank you for your reply- it means a lot.
@briang1958 ha! I’m on ADT and still think about what I can’t do, but yes the old drive is gone for sure so that makes it easier. It’s been strange to see the world without testosterone. Different,