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.

Pam

Good luck. Let us know how it all went and how you are doing when you get some time. Sending thoughts and prayers for successful surgery and a full recovery.

Best
Nels

Hi Nels,

I had my surgery in late August, and everything was as you said. I was in intensive care for three days, and they let me go home on day nine. It was amazing how many tubes and wires are involved in all this! The gradual removal of them was a high point of my days. I went home tube/wireless and without a trach, which I was grateful for. The best part was the tonsil margins were clear and the lymph nodes negative.

All the doctors and nurses were impressed with the boogie board. It was amazingly helpful. I was able to pick one up on the way to the hospital.

I'm pretty much healed up, and still doing therapy for speech/swallowing. I had a video swallow study a couple weeks after surgery, and didn't get past liquids. Liquids are better than nothing. Speech therapist is urging me to do a follow up. Hoping for better results on the next one. I'm faithfully doing all the exercises, and there are a lot of them. Speech/swallowing is going to be a long road for me. I'm lacking energy and tire easily, but I know that will improve over time. I'm able to take a daily walk, which helps.

Thank you so much for your helpful advice. Grateful to you for helping me understand what to expect, and also grateful for skilled surgeons and medical teams!

Take care,
Pam
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