My name is mike. i have come across Brian's post on ALS. So my wife had mucoepidermoid carcinoma low grade on her tongue last year 2023. She had this slow growing tumor on her tongue for 10 years prior to finding out in late 2023! 2 lymph nodes were cancerous, but small and still encapsulated. she had surgery to remove a small portion of the cancer from her tongue and regrafted using animal cell along with node(s) removal. 15 nodes in all. All clean except for 2. A few weeks later she had radiation and was completed in march of 2024. 5x a week for 6 weeks. Since then, she has very little taste left and poor production of saliva, though she is on medication to manage her saliva which has helped a bit. she is doing great. speech and swallowing are not an issue. only removed 4 teeth where the radition was targeted. all in all, shes extremely lucky and we are greatful for what could have been. At times i feel guilty that she got off so easy compared to people such as yourself and others on this forum.

My question. Our RO told us that the likelyhood of the cancer coming back is unlikely. less than 5% of reoccurance. But what i worry about are the long term affects of the radiation and it causing other cancers in and around the head and neck area or beyond at a later time in the distant future. Do i have merit to worry? from what i read on the message board and from people posting, they seem to have some type of other cancers develop years later. I cant help but to think it was because of the radiation or chemo given. I also feel its something doctors tend to downplay...

I appreaciate your thoughts and imput. thanks!

Mike

Hi Mike,

Welcome to OCF and I am so sorry to read of your wife's cancer. I had surgery and radiation treatment in early 2020. My saliva and flavors have continued to return even today over 4 years later. So, try to show patience on that. Although my saliva is still well below what it was before, it is better than a couple years ago. I just kept trying different flavors every month or two. My wife will try something I am eating and be impressed I can handle that level of spice. She knows how sensitive spices were for me over these four years.

There are so many factors in a recurrence calculation. Your oncologist should be a best source on that but feel free to try to find another source if you want it. But, if you do, I would recommend they have access to all your data (the hospital has your exact radiation dosage, surgery details, etc. on file) and you can get a copy for another source to review.

Living after cancer has it's anxieties. I find I am best at reducing that anxiety when I practice gratefulness for every day and stay active both physically and emotionally. One of my favorite internet quick reads on this is "What it's Really Like To Receive a Cancer Diagnosis." on Cancer Pal website. Here is a link.

https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Also, here is one of the most content rich books on how to live a life to reduce cancer risk. Anticancer - A New Way of Life. It covers everything from food, to exercise, to stress, etc.

Hope this helps and please keep us up to date.

Best,
Nels