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Squamous cell throat cancer

Head & Neck Cancer | Last Active: Mar 11, 2023 | Replies (28)

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@sepdvm

Hello jenhope and I am sorry your brother is facing this. I have metastatic SCC and it has been 10 years since my first surgery. While mine began in my ear, my father had oral SCC back in the early 90s. I know a few people with tonsillar SCC due to HPV. Surgery is sometimes an option, and radiation with or without chemo is often used, especially with lymphovascular invasion. HPV associated tumors are more responsive to radiation than nonHPV. Radiation is tough and sometimes a feeding tube is needed but we all get through it and it is worth it for positive results. One acquaintance who declined radiation due to side effects was still battling it years later when it continued on in his lymphatics. There are also now immunotherapies approved for use for H&N SCC that were not available 10 years ago. I am on Libtayo infusions every 6 weeks for 2 years now and my last metastasis has disappeared. I am tolerating it very well. I can't emphasize enough about getting a second opinion at a referral center or large teaching hospital. He wants the most up to date treatment, not just the standard of care. My cancer surgeries and followup care has all been at Mayo Clinic Rochester MN, with my radiation and chemo at University of Michigan closer to home. When I asked my Mayo radiation oncologist if radiation was equal wherever it is given he said no, that it depends on the skills of the doctors designing the treatment plan. He recommended UM for their world renowned head and neck radiation oncologist. Insurance often covers a second opinion so don't be afraid to travel for it. We continue to drive 10 hours each way for what I consider the best of care at Mayo Clinic. A couple of books that have helped me to keep a positive attitude: How Not to be My Patient by Ed Creagan MD, a Mayo palliative care doctor, and Radical Remission- Surviving Cancer Against All Odds by Kelly Turner. Lots of optimism and suggestions for a healthier lifestyle in both books. Best of luck to you both. Caregiving is a tough job so it is good to educate yourself and be prepared. This Connect site can be so helpful.

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Replies to "Hello jenhope and I am sorry your brother is facing this. I have metastatic SCC and..."

I just had surgery at Barnes in St Louis MO. for my throat. While in there they removed some of my lymph nodes and found the cancer was in 2 of them. They are suggesting radiation as the next step. This will be set up at a place closer to me. I'm wondering do I need another opinion and how hard to get get somewhere like Mayo?