Post-surgery Issues

FoduJudi

Before the cancer developed on my tongue, I had 30 years of recurrent mouth sores. I had allergy testing (all negative), but I was able to identify some foods that triggered the problems including spicy foods and walnuts. This past September, I had a major outbreak, but this time, one spot did not heal - it turned out to be squamous cell carcinoma, stage 1 on the middle left side of my tongue.

I am five months out from surgery and am having a lot of trouble with mouth sores now coupled with tongue swelling and lymphoedema in my neck. It doesn't seem to matter how bland or soft food is, it aggravates my mouth. I am scheduled to see an allergy / immunology doc but he can't see me until September. I am seeing a PT / OT to learn to massage the lymphoedema.

Have any of you had any of these issues, and if so, were you able to find help? My mouth is so sore, it is hard to talk or eat. I have tried all the standards - salt rinse, hydrogen peroxide rinse, steroid rinse - so I would love to hear someone has found a magical cure for this! Thanks!

rkinjo

hi, thanks for sharing. Did you have radiation to your neck? I had really bad lymphedema in my neck after radiation. I bought this massage thing for my head and chest area and it worked like a charm. Expensive though.

I’ve had tongue cancer twice and I know the feeling of tongue ulcer pain. Have you gotten it biopsied? If it’s pain that bad, I’d go get a second opinion and try and get it biopsied.

mstclair

https://csn.cancer.org/discussion/comment/1723020#Comment_1723020

hi. Thanks for your post! What massage thing did you get??

rkinjo

https://csn.cancer.org/discussion/comment/1723025#Comment_1723025

hI, its from tactile medical Flexitouch. Works like a charm. If you need more info, please let me know. I actually have my old one I’m willing to part with. Good luck! I was remember my neck lymphedema was during covid, so I was lucky I was able to wear a mask to hide the swelling.

mstclair

thank you so much - I'm checking out the website and it looks interesting. I wanto to investigate furhtther to see if it helps with fibrosis. It seems like it would! That is more precisely my ongoing problem now.