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#201340 05-06-2022 09:04 AM
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Hi - One month ago I was diagnosed with Stage 1 SCC in the right side of my tongue. 2 weeks ago the tumor was removed (thankfully it was small) and 2 sentinal nodes and I am recovering well. Fortunately, the margins and nodes were clean. Unfortunately, due to nature of the configuration of my cancer cells and the fact that this is a recurrence of a pre-cancer I had 10 years ago, the tumor board at my hospital is recommending 6 weeks of radiation (5x/week) to reduce the risk of recurrence. I am meeting with the radiation oncologist next week to get a better sense of what to expect (short and long term) and to schedule my appointments. My doctor said the salivary gland on the right side of my mouth where the radiation will be will be effected but the left side will remain uneffected. He also said my mouth and throat will burn but that will subside over time. I am quite nervous and worried about long term effect but trying to find comfort in knowing that I will still be able to generate saliva on the left side so dry mouth may not be too terrible. I am looking to connect with someone who had a similar experience (and can hopefully tell me all will be okay and quality of life will be good).

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Hello Jordan, I had 30 radiation and my dry mouth got to almost normal but still need water bottle at regular intervals all day and my taste got better with time.Make sure to do salt and baking soda rinses that will help with sores and make sure to take enough calories to maintain weight I had feeding tube so that was big help to me magic mouthwash also helped me with mouth sores.Read as many posts as you can here that's what helped me a lot. good luck.

Paan #201342 05-06-2022 07:16 PM
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Thank you. That’s reassuring. I understand it will be tough but it’s a means to an end. I will take your advice and read read read.

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Jordan,
I underwent 36 radiation treatments on the left side of my head/neck after the surgical removal of my left jaw and left neck lymph nodes. I was diagnosed with squamous cell carcinoma under my left jaw and neck. I also had chemo concurrent with my radiation. The earlier poster was correct with baking soda gargles and magic mouthwash - they helped a little but a little is better than nothing. My salivary glands on both sides have shut down - I am now 11 months out from my last radiation treatment. I was unaware that my right side would be affected before the treatments but doubt if that would have stopped me from the treatments. I do not know if having 30 treatments is less "harmful" than 36 treatments. I reside in Nashville, TN and have seen many commercials for Proton Therapy - I understand it is a less painful route to go and only know 1 person who chose the route - he is currently doing well. I wish you nothing but the best but wanted to give you a heads up just in case you lose function of both glands. Take care.
Regards,
Jimmy


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Jordan,

Welcome to OCF and sorry you are going through this. After my partial glossectomy, I had 30 radiation treatments to my right side tongue and right side neck over six weeks (60 GY) almost two years ago. I got tradition radiation (not proton). The burn and sores will start around week three and get worse up to a couple weeks after your last treatment. The effect is cumulative. Most food will taste weird or even bad by the end. If you do not have a Vitamix or similar, I suggest getting one. It helped me mix all kinds of meals. I dumped high calorie items such as avocados in to help keep my weight up. I suggest keeping a daily log of everything - your weight, calories, mouthwash, pain pills taken, exercise, etc.

My mouth was extremely dry for months and flavors are still slowly coming back. Not to get too detailed, but I would wake up with my tongue "Velcro'd" to the roof my mouth. That doesn't happen very often now. It gets better monthly still. So, be patient with your recovery. Slowly add foods back. It is exciting each time I could bring back a favorite such as pizza, fries, etc. Acidic items are hard, such as tomato based sauces, fruits like oranges, etc. But, they will come back. I still can not do alcohol but I really don't miss it. Some foods that always tasted good (or good enough) - scrambled eggs, green beans, bland soups, plain ice cream, pancakes, french toast, simple soft breads, bland pudding, bland jello, pot pies. Think bland and soft.

You will likely have to increase your dental visits to every 3 months and increase your budget for dental work. I have had numerous crowns and root canals since. But, even that seems to be flattening out a little now. If you can find a dentist that has treated people post oral radiation treatment, that will help. And, an easy trade when my oncologist shared the stats with and without radiation. My stats for recurrence were cut in half. This obviously is different for everyone depending on all kinds of variables but that made my choice easy.

Sitting in the machine can be a little claustrophobic at first but I got used to it and would close my eyes and take short "naps" in the last weeks of treatment.

Although it is tough, I was able to work part time and exercise (not at my normal level but still did the same activities) almost daily through the whole radiation treatment.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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