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

Posted by oskarpr @oskarpr, Jun 13 3:44pm

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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

westernflyer | @westernflyer | Jul 27 10:11am
In reply to @oskarpr "Questions: What is your age? Do you received hormonal treatment prior radiation.? Are cancer free after..." + (show)
@oskarpr

Questions:
What is your age?
Do you received hormonal treatment prior radiation.?
Are cancer free after 14 years
Post PR?
What is your current PSA?
No urinary symptoms in general?
About ED?

Jump to this post

Current as 65
No hormonal treatment before or after
Rising PSA..Possible recurrence..under review now with Loma Linda and possibly Mayo
PSE: 4.29
No urinary issues
No ED issues..none

REPLY
westernflyer | @westernflyer | Jul 27 10:12am
In reply to @oskarpr "Questions: What is your age? Do you received hormonal treatment prior radiation.? Are cancer free after..." + (show)
@oskarpr

Questions:
What is your age?
Do you received hormonal treatment prior radiation.?
Are cancer free after 14 years
Post PR?
What is your current PSA?
No urinary symptoms in general?
About ED?

Jump to this post

replied as westernflyer...

REPLY
ozelli | @ozelli | Jul 29 5:17am

What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person, 63, nothing else going on medically but struggling to open a jar of peanut butter on occasion. Maybe a coincidence or my imagination.

REPLY
1 reply
edpenney | @edpenney | Jul 30 11:19am
In reply to @ozelli "What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person,..." + (show)
@ozelli

What I have noticed post proton (12 months out) is arthritis-like activity in hands. Active person, 63, nothing else going on medically but struggling to open a jar of peanut butter on occasion. Maybe a coincidence or my imagination.

Jump to this post

Curious. What was your Gleason score. Will have SBRT in October but on the fence with ADT. I am 4+3, PSA 5.0, contained in prostate yet 6/12 cores 4+3, 3/12 cores 3+4. Mayo and others are suggesting 4 mos. ADT yet with new research that is being debated.

REPLY
1 reply
ozelli | @ozelli | Jul 30 4:58pm
In reply to @edpenney "Curious. What was your Gleason score. Will have SBRT in October but on the fence with..." + (show)
@edpenney

Curious. What was your Gleason score. Will have SBRT in October but on the fence with ADT. I am 4+3, PSA 5.0, contained in prostate yet 6/12 cores 4+3, 3/12 cores 3+4. Mayo and others are suggesting 4 mos. ADT yet with new research that is being debated.

Jump to this post

4+3.
PSA 17.5, contained within prostate (no PSMA scan however). 4 out of 12 cores positive, 3/12 @3+4 and a single core @4+3. Cancer involvement in those cores ranged from 5% to less than 20%.
Our results are similar but also different. My PSA slowly rose over 6 years from 5.75 tp 17.5. Yours is low but that is not necessarily a positive when you have so many cores @4+3.

I was willing to do a short course of ADT if recommended but to my surprise, the doc said it wasn't necessary as studies didn't support it. I didn't debate him on it.
You have 9 out if 12 cores positive so I guess that is why you are being recommended ADT. Not an easy call to make.

Some seem to tolerate it well, others struggle. 4 months is not a long time but you need the right mindset particularly with exercise. If it were me, I would likely do it.

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