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Proton Therapy: any long term side effects? Any regrets?

Posted by oskarpr @oskarpr, Jun 13, 2024

Anyone who have proton treatment for prostate cancer wanna share his experience?
Any long term side effects.
Any regrets?

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suzdog | @suzdog | Mar 23 3:40pm
In reply to @neilmartin "@suzdog I understand not wanting to imply that a center is bad. My issues may be..." + (show)
Profile picture for neilmartin @neilmartin

@suzdog I understand not wanting to imply that a center is bad. My issues may be simply how my body reacted to treatment. I do think our issues may be more common than some realize just from the posts I read. I will also say that most cases I have seen seem to ease over time, I would guess and hope that happens for you.

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@neilmartin I hope that is the case but at almost 14 months after treatment ended I am still waiting. I wake up most everyday with stomach problems & my bathroom frequency sucks. A daily feeling of malaise dominates and I am unable to do anything to make it go away.

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neilmartin | @neilmartin | Mar 23 5:23pm

A few thoughts,

I went to a gastroenterologist who was connected with my treatment center and understood radiology. If you have proctitis a sigmoidoscopy could confirm and a Gastro would do that.

I have read that our kind of issue could be driven by not just proctitis but by heightened sensitivity of the colon / digestive tract due to radiation which creates an IBS like response which can last some time. Also Metamucil helped me on my path back, you have to stick with it two weeks but it worked.

My point is don’t give up, get a good gastro and see if you can get help!

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jbonsoe | @jbonsoe | May 1 11:47pm
In reply to @daveinflorida "@jbonsoe Are you saying that you now have regular, non-dry orgasms?" + (show)
Profile picture for daveinflorida @daveinflorida

@jbonsoe Are you saying that you now have regular, non-dry orgasms?

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@daveinflorida That is correct except the amount of ejaculate, so far, is smaller than before treatments.

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billymechanic | @billymechanic | Jul 8 7:21pm

Just did three sessions of proton for prostate cancer I have 41 more sessions to go question my legs are in a mold, but they are not restricted from moving. I stay as still as I can. Looks like to me I should be strapped down is that not the case ?

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chuckspot | @chuckspot | Sep 28 3:54pm
In reply to @jrhamp "2010 proton radiation at Loma Linda Hospital in Loma Linda, California. PSA; 6.47; Gleason 3 plus..." + (show)
Profile picture for jrhamp @jrhamp

2010 proton radiation at Loma Linda Hospital in Loma Linda, California. PSA; 6.47; Gleason 3 plus 3. Slow-growth cancer localized in one area. Spent 2.5 months with morning radiation just a few moments after set up. The procedure has changed somewhat from what I understand. No side effects...I played racquetball each day in the afternoons. Keep in mind, with the extended length in treatment time, one must have accommodation and perhaps a vehicle. In my case, I was residing in Europe working contract in Africa post-military retirement. The total cost was (at that time) about $100K not including vehicle rental or accommodation. TriCare For Life paid the entire bill. Proton radiation was originally designed for brain cancer treatment at Loma Linda (Children's) Hospital. Proton radiation for prostate cancer was an "offshoot" of the benefits of that procedure. I have read many personal circumstances on this informative Mayo website and it appears many men and many doctors as well know very little about proton radiation therapy. Keep in mind, a hospital like Loma Linda had to build a cyclotron, the size of the boundaries of a football field cost tens of millions of dollars. Always seek second opinions.

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@jrhamp eye had proton treatment for me prostrate at Loma Linda 2006 5 days a week for 2 mounts at age 56 and things are good with no psa above 1.

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