Lymphedema

Thanks Matt! I have been doing that, as well, so nice to know I am not weird. Honestly, going through this cancer journey has been so humbling. I have seen the best in people, and, in the odd one, the very worse. The day that I pulled and turfed my NG tube, I actually went to get my hair styled ( and with the ng, my hairless lower 'hairline', and red and scarred neck, I admit that I probably resembled one of Star Treks borg)but this woman stared at me the whole time I was there (am I wrong to want to punch her ha ha- oddly, this did happen in radiation, as well, when my neck was burned and I looked and felt miserable). I am beginning to look like my old self (and want to do what I can to help that, as I work with people) and realizing how important looks are to other people in everyday relationships. Sorry to ramble...

Just to update- I met c clinic staff today and they said that because the swelling wasn't bad, they could help me. Said lymphedema occurs more because the pathway for lymph fluid is disrupted, more so than number of nodes taken. Today I looked much better so am hopeful and will update as I learn more ( in case it can help someone else). 

AnotherSurvivor said:

Had a good discussion with my

Had a good discussion with my ENT on the lymphedema subject last week during my 1 year post exam.  The nodes get toasted by the radiation, probably most do not come back, tho the final verdict on recovery may not come in for years.  In their toasted condition they collect fluid, but no longer drain it off as quickly (if at all).  Draining is now done mostly by gravity, tho elevated circulation also helps, so yes, going to the gym probably is helping deal with it.  Rubbing requires care, you want to stimulate circulation without abusing the toasted tissue, but the massage techniques for that do help. 

My recommendation to wear neck scarfs to help is valid because the warming in the neck opens the blood vessels, so draining is increased.  The head/neck thing to wear at night minimizes the accumulation of fluid in the chin nodes because it constricts, but the fluid simply flows on to lower in the neck which is why I have a mid-neck bulge when I get up in the morning.  That's actually a sort of good thing because those lower nodes will probably drain quicker since more of them are still functioning (my tumor was in my tonsil, people with other targets will be different).

I also get good drainage results when I apply skin moisturizer to my old burned area, but I suspect what is going on with that is I am actually doing a moist version of the soft massage.

Thank you! 

OKCnative said:

This was one of my

This was one of my considerations when my first ENT wanted to perform a neck dissection on me. I sought a second opinion from another ENT and he had an opposite conclusion. He said he'd seen so many people successfully treated for SCC HPV+ without any surgery (node removal or tumor removal) that he was of the opinion that patients should go through treatment first, then re-evaluate the need for surgery.

He explained that the removal of lymph nodes almost ensures lymphedema with almost no good treatment options.

I'm so glad I took that advice and opted for no surgery. I had a couple of neck nodes that were enlarged and they were treated with radiation and chemo. Post treatment they've gone back to normal size.

That said, i too began to suffer from mild lymphedema under my chin.

I was told to do morning neck massage for manual drainage (found good videos online), to keep my neck warm (I ordered and wear a neck warmer) and to stay active (I exercise regularly).

Sure enough, the lymphedema has now almost completely reversed itself.

Good luck!

Hi OKCnative, no surgery wasn't really an option for me. But I had a talented surgeon who was also very careful.I was fine for the weeks leading up to chemoradiation but that and the steroids really swelled my face ( looked like the juviderm queen!). Now I am thinking that perhaps it might get a little better as time passes. Only had radiation to one side.Thank you for your thoughts.