External beam - your reaction? - Prostate Cancer A...

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External beam - your reaction?

EdinBmore profile image
9 Replies

Gents,

I'm scheduled to start beam radiation near Thanksgiving - Happy Holidays! I've read about beam and watched videos. The procedure itself seems pretty benign. But, I am concerned about the post procedure side effects - short and long term. Any lessons learned?

Thanks,

Ed

Oh, btw, currently "doing" hormones. Firmagon and then Eligard/Lupron. Roller coaster ride of emotions for me. Interestingly enough, no impact (yet) on ED or sex drive. Go figure.

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EdinBmore
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Tall_Allen profile image
Tall_Allen

Here's the side effects grouped by the % who get them:

pcnrv.blogspot.com/2016/08/...

Here's what you can expect for acute side effects:

pcnrv.blogspot.com/2018/10/...

EdinBmore profile image
EdinBmore in reply to Tall_Allen

Thanks so much. I'll print and discuss with the docs. Sometimes I think that they forget that they've given this information a thousand times to many men but, for each of us, this is the first time we've heard this info and sometimes we block or don't really hear what's being said. Obviously, a rather radical change in one's life. Sigh.

Thanks again.

chhs1976 profile image
chhs1976 in reply to EdinBmore

Please be aware of the following. If you go the radiation route first, the options for further treatment are limited if there is a reocurrance. Radiation can readily be administered after the RP if necessary.

EdinBmore profile image
EdinBmore in reply to chhs1976

Thanks for info. Yes, I've read that radiation does a real number on the prostate and makes surgery extremely difficult (if not impossible) but the prospect of RP and its side effects scares the bejesus out of me. Thus, hormones, beam and seeds.

E2-Guy profile image
E2-Guy in reply to EdinBmore

Had a robotic RP 14 years ago at UCI and it was a 'piece of cake'. Surgery Tuesday afternoon, home Wednesday, one Vicodin, drove myself down to San Diego Bay on Saturday morning and spent over an hour jumping waves on my waverunner that afternoon. The only side effect that I'm beginning to experience is a loss of libido...could very well be my 75 'wild' years (at least the last 60), and some things are just wearing-out! Deciding on an RP again would be a 'no brainer'.

PonySoldier profile image
PonySoldier

Hey Ed. I'm right where you are with the hormones, ED & sex drive; no problems yet but haven't been on them too long. The thought of RP and it's side effects has me terrified. My heart says go the radiation route, my head says surgery. I'd be interested to hear what was the biggest issue influencing your decision. Thanks.

EdinBmore profile image
EdinBmore in reply to PonySoldier

I was on Active Surveillance (very low risk cancer) at Hopkins for 7 years. All of a sudden, after a MRI fusion biopsy, the results were much worse: 3+4, PSA > 20, high PHI. I met with urologists and radiation oncologists (all of whom try to "sell" their specialty as "the" treatment option). I also reviewed the NCCN guidelines for my grade/stage and treatment options. While surgery is supposed to be the "gold standard," radiation has as good of a track record. And, the side effects - long and short term - seem awful to me. Btw, my brother had a RP and his outcomes were terrible. So, I opted for hormones, beam and seeds. Not my idea of a good time and I'm sure that, like most, I'll have ED and some incontinence/bowel issues like everyone else. All a mind fuck for me. But, again, seems less devastating than RP. Good luck to you. Thus far no significant issues with hormones (other than depression and fatigue). I've been lucky. Hope you are too.

EdinBmore profile image
EdinBmore in reply to EdinBmore

Oh, and I noticed a stronger urine stream and less up at night to pee as a result of hormone (which also shrinks prostate). And, noticed more clear ejaculate (as opposed to white/cream color). I assume related to hormone as well. Carry on!

billy1950 profile image
billy1950

I am 13 years out from external beam...had 8 wks in Upstate NY. Excellent oncologist at small hospital who I had a lot of trust in. After about 5weks I had a little fatigue but not bad at all. The treatment today is a lot more advanced than in 2004-5. I have had a PSA of 1 for a few years now. Never have been on hormone therapy. My initial diagnosis was PSA 6.9 with gl 6.

can get short-lasted erecrions with dry orgasms...I'm 68 today and happy things have gone well. Stay strong!

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