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Seeking alternatives to Radiation post-TORS tonsillectomy
Head & Neck Cancer | Last Active: Apr 6 11:29am | Replies (8)Comment receiving replies
Yes. I attempted to get a second opinion at Mayo Clinic to be considered for de-escalated adjunctive radiation therapy, but ran out of time to be seen by one of their Radiation Oncologists before the window closed on the optimal time frame to start radiation treatment following my TORS on 3/5. Unfortunately, both the Mayo providers I was connected with are not licensed in California and cannot do video consults. In person consultation appointments in MN and AZ were not available until after I will have started radiation here in Los Angeles. I had my CT Simulation visit with my care team at UCLA last night and start radiation in a week. Thanks to all at Mayo who offered to try to help!
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Hello . My case was very close to yours. I was diagnosed with SCC HPV 16+cancer of base of tongue March 2023. Stage 3.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost my appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 20 months out of radiation treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I had 4 NavDx negative tests with 0 so I have elected to stop that for now. However, I will continue to have a throat scope and CT scan every 4 months for two years. So far no evidence of cancer remains.
Make no mistake this will not be a fun few months but things will be much better for you in the next 6 months or so. I take the time now to thank God every morning when I get up. Have faith . God Speed
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Hi @gratefuldad, I had TORS in 2023 when I was 53. If it would be helpful to you, I am willing to share my journey and what the DRs told me. I prefer to do it via DM or email, so if you are interested, just let me know. Either way, best of luck, and you've got this!