what’s the lymphedema risks % of RT to the lymph nodes for recurrence?

[BeHealthi]

Doctors have said that it does happened in some cases and I would like to know if someone from this forums did / did not have it happened ? My husband’s been advised to have prostate bed and lymph nodes radiated without PSMA pet scan and I am scared. TIA.

[Tall_Allen]

It's small, but possible. Much greater risk with ePLND.

[BeHealthi in reply to Tall_Allen]

Thanks so much Tall_Allen. Would your answer be the same for all pelvic lymph nodes as they will just radiating without any targets? When you said it’s small risk, do you think it’s less than 20% or lower? Thanks.

[Tall_Allen in reply to BeHealthi]

Less than 5%. They should always be irradiating the entire area, whether there are boost targets or not.

[BeHealthi in reply to Tall_Allen]

Thanks Tall_Allen. I have read online yesterday and it said high risks so I was so worried.

[Tall_Allen in reply to BeHealthi]

Only high risk is radiation after ePLND.

[Mgtd in reply to Tall_Allen]

You are probably aware of the STORM trial initial results presented at ESTRO 2024 but it is my understanding that it in-fact supports radiation of the whole pelvic area.

That to me was good news if I understood the initial data findings presented.

[Alturia]

I had salvage radiation to the prostate bed and pelvic lymph nodes after a prostate and surgical removal of 26 lymph nodes. I finished the salvage radiation in January 2023. I have mild to moderate lymphedema in my lower legs and ankles. I say mile to moderate because when I am only moderately active the lymphedema is mild. But if I am on my feet a lot, such as when I am travelling, then the lymphedema is a bit worse. But it hasn't really stopped me from doing anything and hasn't required any medical intervention.

[cigafred]

After salvage radiation I later had IMRT to common iliac and para-aortic lymph nodes. That was more than ten years ago, no lymphedema.

[Hawk56]

I've had radiation to the whole pelvic lymph nodes in July 2017- 45 Gya administered in 25 IMRT treatments.

No side effects then or now.

As TA says, anything is possible...given the planning and delivery software and technology today, likely, no. My radiologist sat down and showed me the treatment plan on her laptop with the 3D software and allowed my wife into the "Starship" control room to show and explain the real time adjustments. Pretty sophisticated.

She's done all 69 of my radiation treatments, SRT, WPLN and SBRT, no issues.

Kevin

Clinical History

[InqPers]

Yes. I did not know about this potential side effect when I had IMRT to prostate bed and pelvis. I have mild lymphedema in my left leg/pelvis. I say mild because initial wrapping and now maintenance compression has kept it at bay. I notice a little swelling, but it's not noticeable to anyone else unless I point it out. I am a bit tired of the daily compression routine, but it's not too big of a deal. Mine became noticeable about a year after the radiation treatment.

[LowT]

Lots of variables here. Has there been prior lymph node dissection and if so how many, etc. ? Other health conditions, etc. ?

[BeHealthi in reply to LowT]

None. The surgeon didn’t even tested any of them and it’s upsetting. Other wise it will be just the prostate bed.

[Mgtd]

Based on my experience you should stop worrying.

I had my entire pelvic area radiated without all the fancy tests. I had some minor issues the first 6 months with diarrhea and loose stools but after that nothing. Mine was done as a precaution to eliminate microscopic cancer there.

If it matters I will be 80 in 2025 and other than the PC I am in amazing physical shape with no other issues. I go to the gym everyday, hike or snowshoe in the winter 6 to 7 miles and I am the caregiver to my wife.

I needed to outlast her to keep on supporting her. That is the least I can do after 56 years together.

[BeHealthi in reply to Mgtd]

It’s always make my hearts feel so happy when seeing a couples that are lovingly and caring for each other’s. I once asked a man for the tips of his long time marriage, his response was just listening to her. 😍

[BeHealthi]

Wowed….thanks so much everyone. You all have just dissolved all my fears and worries.

[Mgtd]

Just one more comment.They recently released the initial data from the STORM trial. Dr Piet OST is the primary/lead. You can research this trial but in a nutshell here is the important points for you.

You get 3 years or more if do the treatment suggested before you need additional systemic treatment. That is a big deal and you can extend that even further with localized treatment if there is a reoccurrence.

[BeHealthi in reply to Mgtd]

I will looking up for more information on this trial. Thanks.