New Community Member Here. Neck Cancer being treated with Radiation

April 15th will mark 3 months since my last RAD. I had my PET on Friday and I am praying that it comes back clean . The only thing is that I am having some trouble with eating here and there . I have what I think is scar tissue on the back of my mouth were it ends and the throat begins . Seems like it gets aggravated by something I try to eat and it then makes me stop eating and I start sweating . When does this go away ? I wish I could eat regularly but this is making it a challenge . Sometimes its with food that I know I can put down . Its very frustrating . My tastes are still shot but I expected that . I just want this swallowing sensation to end .

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April 15th will mark 3 months since my last RAD. I had my PET on Friday and I am praying that it comes back clean . The only thing is that I am having some trouble with eating here and there . I have what I think is scar tissue on the back of my mouth were it ends and the throat begins . Seems like it gets aggravated by something I try to eat and it then makes me stop eating and I start sweating . When does this go away ? I wish I could eat regularly but this is making it a challenge . Sometimes its with food that I know I can put down . Its very frustrating . My tastes are still shot but I expected that . I just want this swallowing sensation to end .

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Welcome to this community- I share on behalf of my husband who was a physically active and healthy person that started enjoying an occasional cigar w/golf maybe 15yrs ago, yet we ended 2016 with a swollen mouth that led to weeks of tests while a growth closed his throat. In 6wks to dx, he lost 30lbs from his inability to swallow or eat anything before being told of lg tumor mass base of tongue. Thankfully pre-treatment we secured a feeding tube to enable him to start to regain nourishment for strength entering their “standard 7wk daily radiation with weekly chemo”. Agree by week 5 the worst was yet to come, we asked them to stop but docs insisted “7wk” protocol. What they don’t discuss are all these side effects, most HN patients suffer some level of swallow disorder and malnutrition during and post treatments. Expect heavy mucus developing in throat where you might need to expel wherever you are, Ken gagged for too many months and now almost 2yrs on this road he still struggles with excess mucus. Sadly he suffered the worst radiation result, as it collapsed his esophagus leaving scar tissue blockage preventing any function from upper esophagus- ENT and radiation onco docs just smile and say “at least you’re cancer free”-that was their job. I can only stress to maintain knowledge of your body, how it feels and what it needs, ask for a feeding tube to help rebuild your depleted nutrition, ask for swallow test during and post treatment, ideally one was completed pre-treatment for their “bar” to watch swallow progression/complications during treatment. Sadly here in FL swallow tests have not been part of the community-based HN oncology normal treatment procedure, so sadly my husband’s team plowed forward regardless of the permanent damage their chemoradiation protocols caused. We only heard base swallow testing done as part of overall treatment regiments post consults at Dana-Farber and since 2018 his current team at UFShands. I think most here will agree HN cancer is one of the worst with ongoing collateral swallow function damage and only recently the HN onco world is finally recognizing as a significant complication they need to review. You will be your best advocate so make sure you ask any/all questions to your medical team, stress your need for better nutrition and weight mgmt so they’ll order a feeding tube. I’ve personally been involved with now 3 c-diseases since my own stg-4 NHL dx in 2012, relapse in 2014 and then a metastatic breast cancer dx in bone marrow/bones 2017 plus my husband’s horrible journey in HN disease and yet we have limited ongoing research supporting the links between previous cancer treatments and secondary cancers yrs later. We can and need to do better for all patients battling c-disease. It is our collective voices that support patients, and I understand sometimes hard to do when we are the patient in daily struggles; knowing you have communities like this where one can share experiences will help strengthen you both during and post treatments, the more we as patients share can only help researchers improve both protocols and new therapy options. Wishing you that strength to finish strong and remain a loud advocate voice for the mission for cures.

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I am 1 year 2 months post radiation and cancer free. Still a hassle with mucus and choking. You mentioned Shands
.I went to VA while h is partnered with Shands and they were all over the swallow protocol from the beginning. I was a huge help. E drone should make sure that is done. Sorry for butting in here.

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April 15th will mark 3 months since my last RAD. I had my PET on Friday and I am praying that it comes back clean . The only thing is that I am having some trouble with eating here and there . I have what I think is scar tissue on the back of my mouth were it ends and the throat begins . Seems like it gets aggravated by something I try to eat and it then makes me stop eating and I start sweating . When does this go away ? I wish I could eat regularly but this is making it a challenge . Sometimes its with food that I know I can put down . Its very frustrating . My tastes are still shot but I expected that . I just want this swallowing sensation to end .

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Thanks for the insight - what is the "swallowing protocol"
C

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