Lymphedema changes?

kgasmart

BOT cancer, stage 1 (under the new staging), surgery 12/17, modified radical neck dissection/they took a total of 57 nodes, all followed by 30 rads... and many complications.

 

Including lymphedema, which has been an issue since about five weeks post-operation. For the past year, though, it's been almost exclusively on the right side of my neck. Had numerous sessions with an MLD therapist that helped... and it's been manageable, usuall somewhat uncomfortable but something I've learned to live with.

 

Last few days though I've noticed a chance. I'm getting tightness on the left side of the neck, which happened every now and then but has occurred for several days in a row now. Can't see that there's any new swelling on the left... but it just feels different.

 

So I'm wondering if any of you have experience with lymphedema that changed or evolved over time - maybe the lymphatic fluid started moving in a different direction or pooling somewhere it hadn't, previously?

 

Ugh. I know we all have to accept our "new normal," but I wish the new normal didn't suck!

ERomanO

The only change I've

The only change I've experienced is that it's decreased since I first noticed it (just after my 3 month post tx visit with docs), but I did not have a neck dissection so I'm not sure that I can compare.  At my 6 month visit my chemo doc said it tends to "wax and wane", so maybe you're just in a waxing period???

kgasmart

ERomanO said:

The only change I've

The only change I've experienced is that it's decreased since I first noticed it (just after my 3 month post tx visit with docs), but I did not have a neck dissection so I'm not sure that I can compare.  At my 6 month visit my chemo doc said it tends to "wax and wane", so maybe you're just in a waxing period???

Maybe

I just wonder if it's possible the fluid is pooling in a different/new spot, though I can't tell if the tightness has led to additional swelling - mybe a little but I'm paranoid about the swelling anyway.

 

At the suggestion of the massage therapist I've used "KT" tape on and off, which (she said) lifts the skin and helps the lymphatic fluid flow more freely. Began noticing this after the last time I used the tape -  just wondenr if the tape helped it move to new places.

tbret

kgasmart said:

Maybe

I just wonder if it's possible the fluid is pooling in a different/new spot, though I can't tell if the tightness has led to additional swelling - mybe a little but I'm paranoid about the swelling anyway.

 

At the suggestion of the massage therapist I've used "KT" tape on and off, which (she said) lifts the skin and helps the lymphatic fluid flow more freely. Began noticing this after the last time I used the tape -  just wondenr if the tape helped it move to new places.

Mine moved / moves

Two months after treatment ended I got "whammied".  By the time I got to the therapist it had mostly subsided by itself, but I do the nightly massage (my wife does it for me, mostly).

 

My cancer was right tonsil and one lymph node (large - Stage IVb)

I took a selfy and sent it to my elder sister.  Her response was, "Can they remove that?" 

I was happy to still have a throat regardless of its size. 

...but to answer your question, where mine "pools" has changed on each side of my throat.  It is also much, much, much better than it was (I am 2.5 yrs from diagnosis) and 90% of the improvement came very quickly.

 

kgasmart

tbret said:

Mine moved / moves

Two months after treatment ended I got "whammied".  By the time I got to the therapist it had mostly subsided by itself, but I do the nightly massage (my wife does it for me, mostly).

 

My cancer was right tonsil and one lymph node (large - Stage IVb)

I took a selfy and sent it to my elder sister.  Her response was, "Can they remove that?" 

I was happy to still have a throat regardless of its size. 

...but to answer your question, where mine "pools" has changed on each side of my throat.  It is also much, much, much better than it was (I am 2.5 yrs from diagnosis) and 90% of the improvement came very quickly.

 

Thanks for the reply!

I wear the Jobst compression garment most nights and do the self-massage every morning while I walk the dog. The swelling is there but manageable; and for a year little changed. Now it feels like something has changed. Might make an appointment with the lymphedema therapist to see what she thinks.

 

Boy I would LOVE it if I saw the sudden improvement you saw! I've just learned to live with the fact I have what looks like a double chin on the right side of my neck but not the left side... 

SuzJ

Appointment

Yep, I'd go in, with the torure jobst, you shouldnt be seeing that.