HPV Tonsil cancer: I'm very nervous about chemo and radiation

@jfh1970
MSK and John’s Hopkins. Perhaps due to the location of the involved lymph nodes. At this point, I have been overloaded with information and emotions and I just don’t know what to do. But they both told me that proton treatment is known to cause bone death and so they’re worried about me developing ORN.

@jfh1970
I’ve had two opinions so far. Both said the same thing, regardless of whether I am in a trial or not.

@justwow Hard to second guess those two, but still… did they say it was due to the lymph node location?

@jfh1970
@hrhwilliam
I was offered this explanation:

Since my cancer has already involved lymph nodes, the concern is microscopic disease. In that situation, reliable elective coverage matters more than pinpoint targeting. Photon IMRT is more robust and forgiving for microscopic risk, which is why proton therapy doesn’t offer an advantage in my case.

I had large (N2) left lateral masses, including some next to my carotid artery. Proton is perfectly capable of targeting them with the same precision as the primary.

@justwow lymph node involvement makes all the difference. Non-clear margins after surgery is another factor.

I vote for Proton all the way. As I understand they both would give you radiation doses but it is the delivery method which is more gentle so to speak with Proton. The odds are excellent on a great outcome. The best way I can explain is to tell my story. See below...
I was diagnosed with HPV 16+cancer of base of tongue March 2023. I am 58. I had TORS surgery to remove tumor and lymph nodes through right neck dissection. 2 of which had cancer. Radiation followed about 45 days later. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much farther. I am currently 2.5 years post 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, Tongue and swallowing exercises prior to proton Radiation. I would look into a Speech therapist they can help with this. It was a struggle to eat during radiation and I FORCED myself. I did manage to stay off a feeding tube but I lost about 20 pounds. You will lose your appetite and everything has no taste. However as far as today. I can eat and drink about anything I want. My taste buds are about 95% back, My throat mucositis has almost gone away, Saliva production is about 95% back, My stamina is back to about 95% . I had a throat scope and CT scan every 3 months and now It is every 6 months. I also have a NavDx test done. You should also ask about the NavDx Blood test for HPV 16. It will become more important once you have completed your treatment to monitor any HPV 16 cancer activity in your system. I continue to be cancer free as of today. Trust in your faith. God speed!

@jonesja Thank you for sharing this—really helpful to hear a real experience. My doctors’ concern (at both institutions) is that my plan needs robust elective coverage for possible microscopic disease (including the opposite neck). They feel modern IMRT can already meet organ-sparing constraints well, so proton may not add meaningful benefit in my specific case. I’m going to ask for a side-by-side dosimetric comparison (parotids + swallowing structures) so it’s based on numbers rather than generalizations.

@justwow I was T2N2 SCC HPV 16+ primary tumor in the right tonsil with bilateral lymph node involvement. I left my local area specifically to receive proton radiation. I had consultations with 5 major cancer centers before I settled on my doctors and treatment. I had 35 proton treatments 70gy and 6 cisplatin infusions. My understanding was that the chemo was an important adjuvant to treating the lymph nodes. I am now 4 months post treatment with the only current side effects being taste buds in recovery (at about 50% right now) and dry mouth (saliva is improving). I eat normal meals and my enjoyment of food has been steadily improving. I have no pain or other issues. Treatment was difficult, but I am happy with the choices I made.

@metsgirl
What was the most difficult side effect for you? Was it from cisplatin or radiation? Im receiving bilateral treatment as well even though tumor and infected lymph nodes were on one side. I think bilateral is standard if lymph nodes are involved