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.

Dear Pam

I am so sorry that you are going through all this. I had similar surgery a few years ago - they took half my tongue, repaired with a flap and artery from my left forearm. They repaired the forearm with a flap from my upper left thigh. Had trache tube and nasal feeding tube. Right side neck dissection.

Other than the tubes, sensors, and drainage pumps connected to me, I was able to use my whole body as I came out of anesthesia. I was able to do short 5 min walks with a nurse that day. It takes a month or two for all the stitches and scabs to heal up. But, i was able to get out of ICU after less than a week and go home after less than two weeks. The docs told me two weeks is typical. I stayed an extra day as they said if i did, i could go home without the trache tube (just the hole in my neck). The nasal feeding was the most annoying thing. I kept catching it on door handles or my finger as i reached for something etc. I can still recall the taste of the small blueberry shake that was my first real food in weeks.

There are many things i can suggest. Bring a small simple electronic writing pad to make communication easier (boogie board is about $30 on amazon). I wish someone told me to shave all the sensor and surgery areas myself. I would have done a better job and had less issues with removal of sensors, etc. Doubt you will have that issue. I liked having a long power cord for my ipad and phone so i could easily stay powered up from a chair or bed in my room. Sleeping is hard because of all the wires and cables and you need to be careful to keep blood flow to the transplanted flesh/new tongue. When you get home, cut a V shape out of a few old t-shirts to make room for the trach area. It drains a lot and needs a lot of maintenance.

Get a Vitamix (discount thru OCF, i think) or similar for blending food and making it easier to consume once you get your feeding tube out. We rented a hospital bed for my return home and set it up on another room. it was nice to be able to incline and decline. Plus, I slept in short 2-3 hour periods, being in a different part of the house meant my coughing, bumping around, etc. was less annoying for others in the house.

The best advice i got was to keep a journal. One for medical data and questions and one for thoughts and fears and memories. It helped on my down days to read from a couple days or weeks ago and realize how far i had come. I think we tend to be too hard on ourselves and expect recovery too fast.

I was able to walk around the neighborhood once i got home and started a light jog after a month or so.

I recall recovery from surgery going faster than recovery from rads. Two years out from surgery and radiation and i have been full bore life (work, run, surf, travel, speech, food, etc) for probably 16-18 months now. So, i would say maybe 3-6 months on recovery. I was able to do many of my old activities such as surf fairly quick (couple months) but i was weak. It took many more months to get full shoulder, arm, core strength back.

Please ask any questions you want. I was lucky enough to jump on the phone with a guy who had gone through similar as this a few years before me. Just helped to talk live about my questions.

Keep the faith, you have been through a lot already, you can do this.

Best
Nels

Thank you so much for your reply, Nels. Surgery is coming up soon, and you have helped me so much by providing a timeframe for what to expect. You've given me a lot of good advice that I will heed. I have been thinking lately that I wish I had kept up the journal I started at the beginning of this experience. I will be regularly journaling during this phase. I appreciate knowing that help is available now and in the future. I really don't think there are enough thank you's to express the gratitude I feel.

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
.

Pam,

It warms my heart to read you are recovering and home. No rads or chemo? Yay on that! Good luck on the swallowing and speech. I just kept gently trying more. It takes months. I still get flavors back slowly which was lost due to radiation treatment of my mouth and neck areas.

Stay safe and keep the faith!

Best,
Nels