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Did anybody ever get lymphedema after RT (salvage or primary RT ) ?

Posted by surftohealth88 @surftohealth88, 14 hours ago

I am wondering if anybody ever got lymphedema after RT treatment. My husband now has to decide what will be included in RT field - 2 ROs have different opinions (yeayyyy *sigh).

Thanks in advance 🌺.

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melvinw | @melvinw | 13 hours ago

Eight months post salvage RT (both prostate bed and pelvic lymph nodes) and I’ve dodged that bullet (actually, no lingering SEs that I can identify). Wasn’t even aware of that as a complication, until now. Good to know about, as it appears that it can occur years later. Do you have any idea what percentage of RT patients develop lymphodema? Common, rare? Best wishes with making an informed decision.

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surftohealth88 | @surftohealth88 | 12 hours ago
In reply to @melvinw "Eight months post salvage RT (both prostate bed and pelvic lymph nodes) and I’ve dodged that..." + (show)
Profile picture for melvinw @melvinw

Eight months post salvage RT (both prostate bed and pelvic lymph nodes) and I’ve dodged that bullet (actually, no lingering SEs that I can identify). Wasn’t even aware of that as a complication, until now. Good to know about, as it appears that it can occur years later. Do you have any idea what percentage of RT patients develop lymphodema? Common, rare? Best wishes with making an informed decision.

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@melvinw
Thanks Melvin for reaching out 😌.
Yes, I never heard of it either before hearing about it this morning from RO. That is why I decided to post question here. I told my husband I never ever saw that here on this forum as SA for RT , only couple of members after RP and if nodes were taken out for examination. Now supposedly it can happen with RT also 😵‍💫. I Googled as much as I could this morning and % are all over the place , lets say in average 10 % but some go much higher if nodes were cut out during RP - up to 18 to 28 % ! For inguinal (groin nodes) incidence is even higher 15 - 30 % : (((((. And yes, it can happen immediately or many years later.

Oh boy, why it all has to be so complicated ? Why patients do not get all of the info upfront ??? Now we have like 24 hours to decide - just insanity all around ... honestly .... : ((((

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Jeff Marchi | @jeffmarc | 9 hours ago

I have never heard of it happening when lymph nodes are radiated, but it is a possibility. I’ve usually heard of it happening with a prostatectomy when lymph nodes are also removed. It is rare in those cases.

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surftohealth88 | @surftohealth88 | 4 hours ago
In reply to @jeffmarc "I have never heard of it happening when lymph nodes are radiated, but it is a..." + (show)
Profile picture for Jeff Marchi @jeffmarc

I have never heard of it happening when lymph nodes are radiated, but it is a possibility. I’ve usually heard of it happening with a prostatectomy when lymph nodes are also removed. It is rare in those cases.

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@jeffmarc

Thanks Jeff for your input. I agree, even in our big community here it is rare even with RP and I never heard about RT alone causing it 🤷‍♀️ , so I was flabbergasted.
I have no idea why that info was "thrown in" in the last moment *sigh . I suppose I am not stressed enough without "surprise" curve balls thrown in 🧐 ...

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