Lymphodema seems to get worse sometimes. I am doing massage and wearing a sling some at night. Just wondering if others have noticed this. Also my tongue, where the cancer was removed, seems to be thicker and hard to use at times. Overall and i am thankful. I'm about 45 days out.

Welcome to OCF, STC. Please give us more details about what you have been thru and make a signature when you can. It will help us to get to know you so we can assist you better. I have sent you a message with all the info you need to add the signature.

Your tongue could have scar tissue depending on what you have had done. Recovery weather from surgery or radiation (or both) can be a long frustrating road full of ups and downs. Being 45 days out you still have a long way to go before you will be completely healed. Hang in there, hopefully the worst is behind you.

Hi STC - welcome to the family.

You mentioned you wear a sling at night. I take it that means your lymphedema is of the arm. Are you also wearing any type of compression sleeve on that arm?

I didn't know much/any about lymphedema but did a little research on it and compression garments were discussed as one of the many treatments.

As Christine mentioned above, tell us some more about your situation; the more we know, the more we can help.

Tony

STC... this is very common. I am sure that they did a neck dissection and this is what is causing the lymphedema. It's very very normal. You mention removal of cancer from the tongue. I am assuming that the treatment you received was removal of the tumor (possible reconstruction if it was a large enough chunk) then a neck dissection? If so are you going for radiation and chemo? Radiation believe it or not helps with the swelling (it shrinks tissue).

If you are clear (had a clear scan) - aren't undergoing more treatment... then you can go for lymphatic massage. They removed the plumbing in your neck - this causes pooling of fluid. Lymphatic massage helps build new drainage pathways and move fluid along. You can eventually do it at home if you want to. This happens with the tongue for a while as well. It's all collected. I found certain foods irritated it and caused it, how I slept, the temperature of foods. This went on for a long time, but it gets better over time.

best of luck.

Welcome and welcome to the "turkey neck" club

I'm a year out from my neck dissection (hard to believe!) and my lymphedema varies in severity day to day. I have the compression bandages and do some massage but basically I just deal with it. My team and everyone else says it will eventually go away as my body finds alternative drainage routes. There are certain things I equate to it being worse but again, it is what it is and part of the "new normal" for now.

Positive thoughts

I had more lymphdemia just from radiation, without prior surgery, than I did from the later neck dissections. Besides lymphatic massage, PT, light exercise helps with lymph drainage like walking, swimming, swinging the arms over heart level, which can be done while walking, a trampoline, sweating, sauna, hot shower, but check with your doctor before attempting any.