I was diagnosed with HPV positive stage 3 tonsillar cancer (left tonsil) in November of 2021. It had spread to base of tongue and there was some lymph node involvement. Had quite a few teeth extracted due to concerns about later dental issues post radiation. I had a chemo port and peg tube inserted and started treatment at the end of December. Six weekly cisplatin treatments and 33 weekdays of radiation 69.96 gy. Treatments ended mid- February.

A CT scan at 2 months post treatment found a blood clot in my jugular vein. Started Xarelto then, clot is gone now. The 3 month post treatment PET scan in May, showed a small spot on my left tonsil. Doctors were in agreement to wait two months and have another scan. They reminded me how large the tumor had been at diagnosis. The second PET scan showed the spot was still there. There is also a cystic but necrotic lymph node remaining.

Went to see a specialist, and I will be having surgery. TORS left radical tonsillectomy, left neck dissection, left radial forearm flap, and a tracheostomy. My doctors are optimistic this will be curative.

I have been positive through this cancer journey, but will admit to a bit of fear popping up now and then regarding the surgery. My oncologist suggested I not worry about things that might not happen, and I have taken that to heart.

For those who have been on a similar path, any advice for me as far as recovery? I know we're all different, but am curious as to how long it takes to feel somewhat "normal" again. How long does it take to be able to use the flap donor arm? If you had a flap from your arm, did you regain full strength? Any thoughts would be appreciated. Thanks so much for this site and the ability to connect with others in a similar situation.


Diagnosed November 2021.
T4N2M0 tonsillar cancer, (left tonsil) spread to base of tongue, some lymph nodes, HPV positive.
6 weekly cisplatin treatments (blood counts low, skipped last one) concurrent with 33 daily radiation treatments 69.96 GY





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