I am a 72 yo male who completed chemo and radiation for oral cancer 18 months ago. Surgery was done and a very small part of the tongue was removed. My last PET scan wsa done on 8-18-15 and was NEGATIVE! My speech has been affected only slightly and I can eat almost anything (except spicy foods and most breads). I am having persistent problems in two areas: 1) slowly advancing fibrosis in the neck and throat areas--which seem to be causing me more trouble with swallowing, and 2) pain on the right top area of the tongue as well as on the right floor of the mouth. My oncology docs seem rather dismissive of these complaints and always remind me that "you are still alive" and "since you no longer have cancer we have nothing else to offer". Does anyone know what type of doctor one goes to with tongue and mouth issues? Quality of life is now the issue for Me. I am grateful to be alive and appreciate all the oncology docs have done. Thank you!

Congrats on the NED! I'm two years post and my MO sort of dismisses the spasms I get in my neck from time to time, often when I do a big yawn or a lot of physical work that creates a lot of neck cramps.

My own view is this sort of post cancer treatment side effect is generally managed by your primary doctor. I've not seen my primary since all this cancer stuff as I really have no non-cancer related issues.

I'm thinking some PT may help at least teach me some exercises to minimize the neck strain.

God luck.

I would second the PT/OT recommendation. My husband is 4 days post treatment and we have weekly therapy appointments to work of fibrosis prevention

I wish there was a one stop shopping for all our needs as few places may do. I would also recommend a Speech and Language Pathologist, SLP, as I'm sitting here after completing a weekly boot camp visit, in addition too, specific exercise based on my swallowing needs, physical examination and modified barium swallow. My ENT prescribed it.

There is also manual lymph drainage, using very light massage, if you call it that, as demonstrated on me by an occupational therapist, to help with lymphatic drainage, which otherwise can result in fibrosis. I went to PT, but was for walking, leg strength and balance, and again for my shoulder, so my neck was never really worked on, just what was prescribed.

Also, acupuncture may help, as advised by MD acupuncturist from MSKCC.

MSKCC has a doctor, Dr. Michael Stubblefield, that deals with rehabilitative cancer care such as Trismus, Fibrosis. He has a few articles, videos that may be of interest.

The problem for me is finding time to see everyone, I addition to all my other doctors.

I hope this helps.

Unfortunately, many OC survivors suffer from the same long term side effects you described. OC is a horrible disease with barbaric treatments and many patients suffer well after treatments have ended.

I suggest finding a very experienced ENT who treats many OC patients. Also find a physical therapist who is familiar with OC patients, it may be a bit of a search to find one who has treated OC patients.

Best wishes!

Hi Jimbob. I think your doctor is a bit mean dismissing your complaints. Did you have radiotherapy? Usually doctors are very onto swallowing problems that follow on from surgery and radiotherapy. The pain in tongue and floor of mouth could be some sort of sensitivity near the surgery scar/join. Where my tongue is scarred down I have a stinging sensation from toothpaste etc. After a broken tooth scratched it, it hurt for several weeks.

The SLP (SLT?) is the person for swallowing problems.

Quality of life after treatment is part of head and neck doctor's field, though - they do lots of research into it.

As discussed, video from MSKCC, "Treatment for Radiation Fibrosis Syndrome."

https://m.youtube.com/watch?sns=fb&v=cp5PGCUYRdE