My treatment journey with tongue cancer: And yours?

Posted by jaybb1 @jaybb1, Apr 14 8:06am

In Nov 2025 I had tongue surgery for adencarcinoma of the Tongue. Three weeks ago completed 30 Radiation sessions. Tongue still hurts, but glad the feeding tube and trach have been out for months. Next week I will start Lymphedemia Therapy for neck (it hurts) and lower jaw. But I have slight pain, disconfort in upper chest and left shoulder that I attribute to Radiation Therapy. Who else experienced this.???

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

crogers | @crogers | May 24 12:27pm

In reply to @shane1954 "@jaybb1 Showing my ignorance here but what is MLD?" + (show)

@shane1954 Not ignorance. I was wondering the same thing.

bdsis | @bdsis | 6 days ago

In reply to @crogers "@shane1954 Not ignorance. I was wondering the same thing." + (show)

@crogers Manual Lymphatic Drainage (MLD) is a specialized, gentle massage technique used to treat head and neck lymphedema (HNL), a common and often debilitating side effect of cancer treatments like surgery and radiation. It redirects excess fluid away from congested areas and reduces tissue fibrosis. (I had to look it up!)

albion223 | @albion223 | 6 days ago

I think your experience is something we’ve all shared to some extent. After radiation I began to experience lymphedema (which I wasn’t told anything about during radiation treatment). YouTube videos (“Kelly cancer pt” has some great videos) has given me some great tips for how to deal with this and I’ve been practicing self massage for two months and have kept the swelling down to hardly noticeable levels. My surgeon in Boston has sent me to a certified lymphatic massage therapist who has shown me further exercises to do along with the proper techniques as well as ordered a headset to wear at night to push any swelling out of the neck area. Waiting for the headset to arrive so I can’t comment on its effectiveness.
Otherwise daily massage and physical activity will be your best option for combating this issue.

jaybb1 | @jaybb1 | 6 days ago

In reply to @albion223 "I think your experience is something we’ve all shared to some extent. After radiation I began..." + (show)

@albion223 thank you for your feedback. My conclusion based a on questions I had, is that my doctors have little to very limited knowledge of lymphedema and lack formal education on this. That is why I was told nothing ahead of time. Listening to the video of the informed doctor from Stanford, he says that in ALL medical school doctors get maybe less than an hour on lymphonic system. Self education is all there is
Along with a certificate therapist chosen from the criteria I posted.

56tburd | @56tburd | 5 days ago

In reply to @jaybb1 "@albion223 thank you for your feedback. My conclusion based a on questions I had, is that..." + (show)

@jaybb1 a nurse told me that all I had to worry about is whether I wanted to live or die. What she failed to realize is that there isn't much information provided afterward addressing all the side effects. The past 20 years have been a learning experience, but I've found much of it here in the past couple of years. Hopefully, I'll not need it in the future.

jaybb1 | @jaybb1 | 5 days ago

In reply to @56tburd "@jaybb1 a nurse told me that all I had to worry about is whether I wanted..." + (show)

@56tburd thank you, thank you. "20 years a learning experience". AND, glad to here that much of that learning is from "here". As I indicated, no one has mentioned side affects of radiation to me. But probably true for most of us, as they roll you into the operating/procedure room they put forms for you to sign, no way one can read all that fine print in 10 seconds (or understand it). Same for radiation. Did any of these forms, which no copy is provided to me, have information on long term effects--I do not know. Yes, we all agree with the statement of your nurse "live or die". But as we know, that is NOT an excuse for ignoring communication on side affects. Thank you for your feedback