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

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.

@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 .... : ((((

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.

@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 🧐 ...

I was wondering about lymphedema myself.

In the following P.C.R.I. video, Dr. Kishan discusses RT side effects. At minute 55:42, as part of an answer where he discusses some of the more terrible side effects that are possible he mentions lymphedema - "Uh lymphedema - I honestly have not seen that as a result of radiation but it potentially could occur I suppose".

@surftohealth88 Even if it IS a possible SE, they would avoid some of the nodes with RT as a precaution??
That’s pretty insane to me, since a much bigger SE is NOT killing any cancer that may be in those nodes…
Your husband has an aggressive cancer and toning down treatment over a remote possibility is just plain stupid.
I think they’re just covering their butts. They know you and your husband are both smart, well informed individuals and will have questions if this were to happen.
With so many other possible SE’s out there - which don’t often happen - I wouldn’t let this one keep me up at night.
Phil

@climateguy
Oh my - you are golden 😍🙏 !
Thank you , thank you, thank you !!!! : ))))
It is soooo encouraging - I think I will be able to sleep tonight finally ! How on earth you found this - I am grateful from here to the Moon and back (couple of times ; ) ) ! Can not wait to show my husband !!!
*HUGSSSSSSSSSS

@heavyphil
Right !!!! I mean, so many other things could happen with RT and now mentioning THIS as possible "deal breaker" is insane indeed. IMHO

You would not believe the back and forth with this gland ! At the end I decided to go "out" of the area and ask RT Kahuna in LA and he told me to include that node in RT field, while the guys here tried to per-sway me that this is "most probably something else". Yes - like every single wrong step so far done for my husband - every single time they dismissed the fact that he has Decipher 1 (!!!!) .

First they told us to "take our time" to make decision even though we wanted RP immediately - "aaaaa, no rush, no rush, no rish " _ said exactly like that - 3 times in a row !!!!

Than when we asked for nodes to be taken out "Oh, they looked normal size, so I did not take any out " (????)

Than when BCR started "Oh, that is NOTHING, no need to rush into RT " -
Us : "But doubling time is every 4 weeks , we will miss 0.2" !!!!
Him:" Oh it is different with uPSA - it is not the same and it slows down and even stop rising"
Us doing uPSA in 3 weeks on our own : "We want PSMA, this is 0.14 and next month it will be ABOVE 0.2 " !!!
Them : " You will probably not see anything on PSMA"
Us: "We do not care , we want RT to start before it hits 0.2 ! MO told us that actually 0.05 should be an action point for us" !
Them: " OK, next available opening is in 6 weeks" !
Us: .... fainting ... Me to Mr.Surf : "Call all hospitals around and find the first available PSMA " !!!
DONE
Results - SEVERAL nodes involved.
Them: " Ok, lets plan ADT and RT. First we will start with Lupron and Abiraterone blah blah blah "
Us: " Well we want Orgovyx and Nubeqa "
Them (half upset) : "OK, Orgovyx you can pick up today and Nubeqa needs approval but I do not see a problem" -
BOOOOOM- both meds ordered
Us: " We heard that in SLK they do PSMA again to check for inconclusive findings after 8 weeks of Orgovyx"
Them: " Ehem, we do not do it , this node is most probably not PC"
Us: " BUT my husband is high risk patient, with Decipher 1 and BCR in short time and one of the nodes was glowing even before RP and we were told it is NOT PC. We would rather check. "
RO: "We can do it but it will be inconclusive again - if it disappears it could be that inflammation caused by local infection spontaneously disappeared so we will again not know if it was PC or not" .
Me: " Ok, but if it glows we know it definitely is not PC".
RO: "Perhaps ..., but still nothing is 100% and I would wait 3 mos for PSMA"

(Me doing research for days and finding the study that says that starting RT between 8 and 11 weeks gives the best result - panic mode sets in. )

Us: " Any chance we do this at 8 weeks "
RO: "Nope and now that you are on ADT you have time" (?????)
Us:" Ok, can this node be included in RT field - is there a problem with that ? And when will we have those markers inserted" ? Scheduling said there is no space available till very end of July and we should start RT mid July !!! "
RO:"My colleague also thinks that gland is not PC and BTW I am traveling and if you have any urgent question ask Dr. xxxxxx".
Us calling our surgeon and insisting on having insertion done ASAP !!!
DONE ! (There was space in schedule in 5 days (???)

Us : As time was passing and no additional help or direction of what to do with damn gland we decide to consult "outside provider" all the way in LA . Amazing gentlemen, I mean it was pleasure and an honor to talk to him. I still can not even believe we had that opportunity, but that is another story.
His advice: " You have extremely aggressive cancer, I mean Decipher ONE ! Yes, PC is rarely there but I had cases with PC there, definitely not unheard of. With aggressive cancer one never knows. AND, you will not have any additional SA, whatever SA you will have it will be in the pelvic floor, IF you have any, so there is no drawback of having groin node treated and there could be a great benefit to do it ! "
Us: "Yeayyyy - we know what to do !!! Finally !!!" ( Happy dance ...)

We write to RO that we want node included if at all possible and that we had consultations with big Kahuna and he said to do it".

RO:" Well there is no such thing as a free lunch. You might get lymph-edema. "

US: Jaw dropping , I mean, WTH ???? Did we poke his ego or what ? O_O Like I wish to have boob implants and size triple D no matter what, even though only B can fit, so now I am relay pushing it for no reason !!! *slapping my forehead Like we are just inventing some glowing nodes here and there in my poor husband's body and are worried for NO reason. Pfffftt, what is one node here and there ???? 🤯

Anyhow - thanks all for listening to my ranting : (((, I really feel like I will explode, not a single day of no stress since February 2025 : (((. Oh, and I forgot the whole segment about "adjuvant" RT back and forth - well, you can extrapolate. *sigh

HUGSSSSS to ALLLLLL and may you all have wonderful rest of the weekend and all days in the whole year too : )) <3.

@surftohealth88
All I can say is OMG! What a saga and no wonder you occasionally are so frustrated and cautious to the extreme. To see this level of incompetence at a major institution is alarming.
I am glad you are on a definite path and that you still have retained your sense of humor despite the obstacles they keep putting in your way.

My husband had his RALP 5 months ago. Since his cancer is aggressive, some lymph nodes had been taken out and unfortunately he got a large lymphocele. It took many weeks before it dissolved recently. We were worried that it would cause a persisting lymphedema which it may do. Thank god it didn't, but it still may months or even years later. There are a few limited things you can do to mitigate the risk - do the right gym, wear the right clothes etc., which my husband does - but this is the price he has to pay for fighting his cancer (there are more). In the end we must try to be positive and hope for the best.

If I understand you correctly, they should have taken out a few lymph nodes during your husband's surgery. Then he would be possibly in a similar situation. If I understand you correctly, they may radiate those lymph nodes now for undoing the mistake? Which is good but bears similar risks, less likely though and not a common side effect. Stay positive, it will be all good in the end, THIS should not cause you sleepless nights. Wish you all the best!

Aw c'mon surf. Just think how bored you would be if Mr. surf got the treatment he's supposed to get without any drama. 🤣😁🤣

Oh, and IMRT plus SBRT here with no lymphedema yet. Just something else to look forward to.