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In the home stretch
I am down to my final 56 days of ADT (hopefully forever but we'll see) after finishing SBRT in June. I REALLY want to thank everyone here who reached out to me when I was in a very dark place about this whole prostate cancer thing, especially northoftheborder and robertmizek. I was sad and angry which was out of character for me. I'm actually a very mellow guy IRL.
FWIW, I've become active in my IRL support group and I see myself in some of the guys who are just being diagnosed so I am paying back the help you all gave me by trying to be helpful to them.
If any doctors, nurses, or others associated with cancer care read this:
1. Nurses and radiation techs--you are the unsung heroes who calm us down and your kindness is boundless even on those likely stressful days when the radiation machines break down and you're stuck working until 9 or 10 at night fitting everyone in for their treatments. That said, radiation techs: I hope I never see you again 😃
2. Dosimetrists--most people don't know you exist but you do an awesome job. I've had very few side effects from radiation (so far--knock on wood) and a lot of that is due to your very careful mapping and planning. I know most of you never meet the patients in person but some of us know you're out there!
3. Doctors--you have to have professional detachment but I do appreciate the position you're in. People who respond well to treatment disappear while those who don't continue to see you for long periods of time and you have to keep a distance to keep your sanity.
My ONLY advice to doctors and nurses is that you REALLY need to be more forthcoming about the side effects of ADT. "Some guys get hot flashes and some have ED" just doesn't cut it. Attend a support group sometime and you'll see how many guys are totally unprepared for what happens when they're on ADT. You give out great literature and discuss radiation treatment at length. You should do the same for ADT vs. just jabbing people with it and sending them on their way.
I think, with help from a great psychologist I'm seeing, that I'll be OK soon. I'm down from thinking about prostate cancer 16 hours a day to maybe an hour. So, thanks again everyone.
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That's brutal.
I'm an ADT+ARSI lifer like a few others here, and I found that the first year was the hardest; after that, my body learned to adjust. I still have some hot flushes, but the fatigue and joint pain are much diminished, and the abrupt mood swings have pretty-much disappeared. I was lucky never to have experienced the brain fog (at least not that I noticed).
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2 ReactionsWhat a great post Scott. You’re an amazing person and it’s been a pleasure to know you. You know how to get in touch with me if you ever want to chat.
You’re awesome. Never give up!
Bob
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3 ReactionsOut of curiosity, have you heard about or done any research on Bipolar Androgen Therapy (BAT)? I’m wondering if you are/will be a candidate for it. It’s being researched at John’s Hopkins.
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1 ReactionThanks! I will take a look.
Right now, I feel incredible lucky/blessed that my current treatment is working — the side-effects are tolerable, and my PCa is staying castrate-resistant after 3 years — so I'm a bit reluctant to offer myself up as a guinea pig for experimental treatments, under the "if it ain't broke..." principle.
But if or when my PSA becomes detectable again, I'll be casting around for different treatments, so it's good that I'm aware of this.
Ah, I see here that Bipolar Androgen Therapy (BAT) is for metastatic castrate-resistant prostate cancer (mCRPC), so I wouldn't be a candidate right now with my mCSPC, but it could be a promising next step if/when my situation changes.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/