Your experiences with radiation therapy to tongue

Posted by healthydeb @healthydeb, Jun 11 4:28pm

I have had 3 surgeries on my tongue for PVL (Proliferative Verrucous Leukoplakia) which is an aggressive lesion with a high transformation to. I will see my ENT surgeon in 2 weeks to discuss next steps because a segment of cancer remains at the back of the lesion and one therapy brought up is radiation if further surgery is impracticable.
Question: what has been your experience with radiation therapy? I have read a lot of information about immediate and long term side effects.

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healthydeb | @healthydeb | Jun 19 3:44am

Yes, I felt unsettled in some ways plus anxiety initially but I am coming to terms with this new recommendation. I am having a CT scan of chest and abdomen this morning and I hope it be reassuring. I’ll meet with my surgeons next week.

carlajones101 | @carlajones101 | Jun 19 6:55am

My BIL saw the drs at vanderbilt and his esophageal stenosis has returned (after 2 dilations this year) and they have referred him to someone with a long waiting list (next February!) Does anyone know of someone who can help him keep the esophagus open? Any experience you can share would be so very appreciated.

oliverpuppy | @oliverpuppy | Jun 20 7:46am

Dry mouth. Burns on skin. Dead bone in jaw. Removal of molars in some cases due to easily getting cavities and the risk of getting dead bone (osteoradionecrosis)..
however my cancer had covered a large part of my tongue and lymph nodes and required the maximum strength dosage of radiation 35 rounds and chemo. I suffered a bit but am really doing well now. It’s a journey things happen over time and the doctors were there every step of the way. Mayo did save my life as it had also spread into my lungs. I had two surgeries to remove the nodules in my lungs. I hope this info helps and remember my case is a worse case scenario. Talk to your oncologist! They will tell you about the pros and cons of radiotherapy.

healthydeb | @healthydeb | Jun 21 4:28am

Glad to hear that the worst is behind you. Your recovery and mental toughness are a tribute to you! Tongue surgery and selected lymph node removal are in my near future. I had a lot of anxiety about the scope of this operation but am slowly accepting it. My biggest concerns are: waking up from the long operation, the initial post op days, arranging for all the pet care I need, and getting home ASAP!

zenren14 | @zenren14 | Jun 23 2:48am

@healthydeb
I've chatted with many HNC patients, and long-term side-effects do occur from the radiation. It all depends on so many variables though. I wouldn't get too caught up in a web. Talk it out with you Onco before decision. I endure lymphedema, mucus & phlegm, severe dry mouth, dysphagia, poor speech, headaches. Try to do something simple you like everyday. This will benefit your recovery. Be Well.

healthydeb | @healthydeb | Jun 23 7:20am

Good advice.

tzitter | @tzitter | 16 hours ago

Headed in for partial glosjectomy and disection Thursday. What can I expect for the first week post-op

healthydeb | @healthydeb | 10 hours ago

My experience with a partial glossectomy, tongue flap from thigh, and neck nodes may give you some insights. I had a drainage tube in my neck and thigh. Tongue felt very bulky in my mouth. Of course you will have IVs and will not be able to take anything by mouth. My pain was well controlled. If you have any questions, please let me know.