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Has anyone experienced a tonsillectomy and soft palate reconstruction?
Any experience or suggestions?
I’m my wife’s caregiver. Early May 9th she was diagnosed with tonsil cancer. She made her first appointment within 2 weeks of noticing something in her throat which was mid March. Her first appointment was first week in April. After treatment for an infection that didn’t clear up, a CT scan was ordered. It came back negative. Dr wasn’t convinced so he ordered a biopsy. It came back positive. That’s when we realized we’re getting ready for a fight. My wife is an RN and is mentally capable of most anything. She told me it was cancer from day one.
The biopsy came back positive.
PET scan was next to determine stage and if signs of spreading. An appointment was scheduled with the Oncologist, Radiologist and ENT the next week. Results were as good as could ask for. Early stage 1.
We’re originally from Atlanta and have experienced the Emory University Health system. She was able to get in the next week. She read up on their robotics surgery and was all for it. After a consultation with this team we decided this is where she’d be having her surgery. The scans showed the left tonsil and into the soft palate. The surgeon explained it to be very painful and the first 3 weeks would suck more than anything she’s experienced. Surgery was Wednesday June 14th and we came home Wednesday 21st. He was right! It’s very painful! The soft palate had much more tumor than scans showed. She’s been struggling to talk and eat/swallow.
We went back last Tuesday for post op visit.
2 of 26 lymph nodes had cancer in them. Now we’re having to plan radiation therapy. The tumor is gone but her soft palate was reconstructed with fatty graph from her cheek. The radiation should start in 2 weeks and I’m trying to get some weight on her but I’m not successful with that. Most likely there will be a feeding tube in her stomach as she’s lost over 20 pounds. I’m praying for a miracle that the radiation will be the clinical study 3 eeek 5 days a week rather than the 6 weeks 5 days a week.
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I had a tonsillectomy in May. My right tonsil had a cancerous tumor. I’ve never experienced that level of pain before. I am scheduled for robotics surgery this month to remove the residual primary and the lymph node on my neck. I will find out about follow up after the surgery. It was stage 2 and HPV positive which was a relief for the surgeon because they know how HPV acts in the body.
I dread a second round of the pain more than I can say but the surgeon is using a different approach for pain management than my first surgeon. I was lucky to have caught this early. I’m 71, very healthy and active.
Good luck to you.
Hi @kmac1207 and welcome to our wonderful group of folks who have literally had their head examined.
It is difficult to watch your wife in pain and have little you can do to help. Whatever works such as ice water, warm water, cold 7-up. Don’t give up. Try fifty things to find what works and don’t get discouraged. You are the nurse now. Doctors and nurses make difficult patients sometimes.
Stage one is good. Of course stage zero (no cancer) is better but at least you can be almost certain of light at the end of the tunnel.
So this will be the year that she fought cancer and this will be the year that you will be both strengthened in your relationship. I and others are here for you, to help answer questions, to hold your hand from a distance if necessary. Don’t hesitate to ask as you already have.
Thank you! We're finding little things here and there! Mixing ice cream with ensures, homemade mashed potatoes and thinning them down, Panera Bread baked potato soup and really mashing them down, using a strainer for chicken noodle soup and a few other things. Bitter/sweet is the treatments we were hoping for, Proton therapy we were able to get but the Clinical Study for 3 week treatment won't work for her. 6 weeks for 5 days a week and 1 round of chemo for 7 weeks is the process. We're bummed about the time frame but thankful for the treatment! She's lost 30 pounds and oncologist recommended a feeding tube aka peg tube. I'm thankful it's an option as she will most likely lose more weight and needs nutrition! She's scared and worried but knows this is the best option. We're going to beat it!
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3 ReactionsBest of luck to you! I hope it goes well! Has there been mention of anything in the soft palette? That's where hers spread to as we were preparing and scheduling surgery.
Update: we're having to do the 6 week therapy for radiation and adding to it, now chemo 1 day a week for 7 weeks. We start this Thursday June 20th.
No! I have my second surgery to remove the residual
Primary and a lymph node dissection on Thursday. May or may not be robotic surgery in the throat. The CT scan from last week was vague! So not sure where the throat surgery will be.