Just Diagnosed with Tonsil Cancer - How to Treat?

I was diagnosed with lymphoma on the base of my tongue and tonsils in October 2023. I had 12 treatments of radiation, but no chemo or surgery. The side effects of radiation were hard for me and I am still dealing with taste changes and dry mouth. I had sores in my mouth, and everything I ate burned. My dry mouth was made worse and I lost weight as I wasn't able to eat much of anything for 3 weeks after completion of treatments. I know this paints a bleak picture, but on the upside, my follow up PET scan was clear and my oncologist said I am in complete remission. I am hoping my taste will get back to normal but my radiation oncologist did say it could take several months for it to heal. Not sure if this is helpful, but wanted to share my experience. Prayers to all who are fighting this battle.

It really depends on so many variables such as what type of surgery they are offering, what type of radiation they are offering and so many other variables. I would seek out a 2nd opinion.

Sure, in 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.

Unfortunately, just diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and am finishing my research and second opinions. I will have left partial glossectomy with a radical forearm free flap surgery scheduled for April 3. Also, includes a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

One thing I am finding out is this big de-escalation cancer treatments coming about especially for people who got it as a result of HPV. I just talked to my oncologist a few days ago and he said I would have four different options if I had tonsil cancer today. I also attached a couple articles on it here.

Best,

Rob

I too was diagnosed with tonsil cancer May of last year. I had 4 needle biopsies, a tonsillectomy and biopsies of the tongue and finally TORS surgery to remove residual cancer. Also removed 18 lymph nodes and two were metastatic. Before the TORS surgery I had a NavDx test and the results were 3212. I underwent a shortened regimen of radiation and chemo. 2 x a day radiation for two weeks and one chemo each week. The follow up NavDx test was zero. I have had a couple of follow up CTscans and will have another in June. All negative . I am at a teaching research hospital on NC and was the first patient for the shortened course It’s generally used for repeat cancers. I still have issues with swallowing because I don’t produce a lot of saliva. I lost about 8 pounds which wasn’t too bad. I was able to swallow liquids and got through with frozen Boost and a lot of ice cream! Radiation on your throat will change your taste completely. Good luck to you. I had an excellent medical team at Wake Forest Baptist.

My husband has just started radiation for SCC of the tonsils, throat an tongue. That wa after extensive TORS surgery in late January. He has not been able to swallow since then. Am wondering if he ever will. He just left the hospital after the tumor returned and wrapped around his carotid artery. He is so fatigued and weak after only 2 radiation treatments that I can't imagine how he will survive this. Does it get to the point where all he can do is sleep??

Jclassey again
I finally do not have pain when I eat. It took about 4.5 months to get to that point .
Taste is still very strange but slowly returning. Hopefully your husbands pain is manageable with just acetaminophen

Hey John,
I’m coming up on 8 years this fall since my treatments.
I was stage IV with as my oncologist said “way too much cancer for surgery”. So my only option was die or chemo radiation and I chose the treatment option!

Everyone responds differently to treatments and recovery so it’s hard to tell you what to expect.

I can tell you that observation of the many others during treatments surely assured me that the feeding tube and port was the correct decision!

It was nearly a year before I was able to eat solid food and I still struggle today. I need large amounts of water to get my food down and still choke frequently.

My oncology team insisted that I file for disability as we entered into treatment.
This was not easy for me to do as I have worked since a very young age.
I’m so thankful that I did go on disability because my team was right, I’m never going to be the same as I was.

I am a victim of the Camp Lejuene water so I really can’t say that my conditions are from my treatments or from the water as they both can cause similar problems.

I suffer from fatigue, slow reaction, forgetfulness, tinnitus, hearing loss, agitation, insomnia, chronic migraines, loss of balance and a few others.

So whichever way you decide to go I wish you the best and fight the good fight!
May God Bless you.

MOJO

cris2
No my throat did not hurt after chemo and radiation. I was able to swallow again without any problems once tumor was gone. it swrunk dramatically within the first 3 weeks of treatment.
Don

Does your throat still hurt when you eat? My husband is going on two and half months after treatments and still hurts to swallow and eat, he has to drink water after every bite. I think I heard on here it takes a long time to heal.

Ok thanks, good to know.