Reading your post l am reminded of that old adage...
" Everything to lose...and nothing to gain"
Personally...l am glad l chose not to have my roots removed.

Six weeks after my H & N cancer was confirmed...l was able to get a good health policy through B.C.B.S.
I believe insurance companies can no longer penalize you under the so called 'pre condition clause'..?
I was under the impression that this was passed under Obama's Presidency. ?
I see your initial post was in January of this year....so you may not see this reply to your post..
Sadly...in my case..prior to my cancer diagnosis l had only a limited health plan ..
We should all seriously think about what some refer to as 'catastrophic health insurance' especially as we age..

My thanks again to B.C.B.S. 💓

Hello friends! Ever since treatment (partial glossectomy, chemo, and rad 9 years ago) I have severe oral thrush always. I go on 14 day regimen of fluconazol, clears up, then after 2 weeks I’m back on fluconazol. Anyone else experience this? I’ve tried clotrimazole lozenges but they didn’t seem to work and made me extremely nauseous (which I had to take 5x a day). I’ve tried the fluconazol swishes, nystatin cream for my lips when it spreads that far, a candidia diet eating yogurt and cutting sugars that feed it, tried homemade swishes all just to revert back to the fluconazol cycle.

Just curious if anyone else is running into this and has something that is working for them long term! Thank you!

Interesting to me that I was searching out similar information since I have been experiencing assorted discomforts in shoulder and upper right arm. I have had chemo and radiation over 10 years ago for BOT cancer, however I was unfortunate in experiencing a second primary cancer of the right side of my tongue which resulted in a partial glossectomy and rt. neck dissection in 2020. Deemed cancer free at that time with 4 month follow ups.
An additional development with my neck is at the base of the back of my neck and rt side of shoulder seems to me to be a palatable "knot". I do experience headaches on occasion as well. Tylenol helps.
So, my doctor wants to wait 4 months to see if it is changed or larger, the knot, but with the other symptoms I am not as inclined to wait.
Does anyone have similar experiences or something that might resemble this situation.
I understand that radiation is forever. I guess I am just trying to understand if this is part of what can happen as a result of treatment with rads.
Appreciate any input.
Thanks!

Hi all, I am new to this forum and wanted to introduce myself. I really appreciate this forum as there don’t seem to be many places to turn to for firsthand information about OC. I was diagnosed about 5 weeks ago with SCC on the right side of my tongue. I am now 17 days post op after having a partial glossectomy and a selective neck dissection where 30 nodes were removed. Nodes turned out negative and the margins of the removed tumor were also negative. I do not need any further treatment and for that I am truly grateful. I did have a 6 year history of lesions turning out to be dysplasia. I have a different doctor this time, and hope that his encouraging facts about my cancer not returning will be true. Just wondering when I can expect the numbness and swelling to go away. I have numbness on my tongue (a fairly large chunk was taken out) and a lot of numbness on my neck which feels so odd! Although I’ve been cleared to eat whatever I want, right now that is just not physically possible. I’m looking forward to getting back to as normal as possible. Is this realistic? Up until now, I have found that family and friends have been pretty much hands off, no contact once they heard the word “cancer.”

My oncologist said an occasional drink was okay and although I have abstained from alcohol since 2007, I used to enjoy non-alcoholic beer on occasion. After my sixth surgery in 2019 I visited a naturopath who was willing to work with me in conjunction to my other physicians. She suggested that I had silent reflux and placed me on a low acid diet. This involved giving up soft drinks, non-alcoholic beer and a large number of foods such as tomatoes, citrus, pineapple, tart apples, mango, and most berries. It also ruled out seltzers and any carbonated beverages. It limits chocolate, coffee, and tea. Although i did have a recurrence of cancer in 2020 and had 3 more surgeries, radiation, and chemo, I have stuck to this diet and my mouth has been calmer than it's been since 2010.

I'm not saying that all oral cancer survivors should give up alcohol or non-alcoholic beverages, but I know that in my case it made all the difference.

You're welcome!!!!

I'm so sorry you're going through this. I'm a concerned daughter, too. My dad had Stage IV oral cancer twice, two different surgeries on his jaw and a wide mouth resection in between to clean up an antibiotic resistant infection, which is how they discovered the cancer had returned. We went through an awful lot in a short period of time, so some of it is a bit fuzzy in my memory. As I recall, the resection took almost as long as the mandiblectomy. He had a bit of swelling and pain afterwards, but we left the hospital a few days later. I don't think he had an NG tube after his resection.

I'm also looking for dental answers as I am worried about ORN. My dad has had teeth break off and an oral surgeon wants to remove them. It's so hard to know what to do sometimes. I hope you find the answers you're looking for and I hope knowing you're not alone in your struggles can bring you some comfort.