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

Hello from a fellow 67 yr old male HPV+ tonsil T 2 and 1 lymph node cancer treatment patient. (current)
Just got started with chemo (cesplatin 74mg) ) and IMRT radiotherapy, have now had two chemo days and 5 radiation treatments. An ENT surgeon with robotic technology balked at a surgery.
Proton therapy is not available at this clinic or anywhere within 100s miles unfortunately.
Standard of care treatment plan of 7 chemo days and 35 radiation days (70 gray) but highly doubt it will need to be completed with the rapid progress being made already. I get to look at this tumor in the back of my mouth w/flashlight after each treatment and it is already 1/2 the size it was when starting. Totally amazed at how well this therapy is working .
Yeah some side effects from the chemo so far and expect it all to get worse before better but the options of not doing anything are worse. I could already feel this thing growing down my throat when treatment started.
Have discussed this with the doc and was given the ok to end treatment when and if desired . He is stuck with the standard of care plan and evidently is not permitted to end treatment early so from my research on trials and study's it seems with my personal situation I may only need 1/2 -2/3 the treatments . Its call de-escalating treatment in the cancer world and is to help minimize all the side effects.
Makes you wonder how much of the standard care treatment plan is backed by money/income for the clinic. Was diagnosed approx 3 months ago and have met dozens of people in the medical world and faced treatment delays from tests and scheduling appoints. Its a busy field these days.
Anyhow good luck to anyone going through this . There is lots of reading out there on trials and study's NIH is a good source where they pull a lot of studies together to view.
Be your own advocate for de-escalation you can make your own calls on the standard of care treatment plans which most clinics are using.

Hi @woodsy1

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 (7 weeks) of Photon 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, I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included 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. In addition, in 2025 had basil skin cancer in 3 different spots. Knowing what I know now I would only accept the Proton and not Photon for any radiation treatments.

One thing I am finding out is this big de-escalation Head & Neck cancer treatments coming about especially for people who got it as a result of HPV. I attached some articles on it here. Also, I talked to my oncologist recently and he said I would have four different options if I had tonsil cancer today.

You will get better. Hope this helps. Good luck.
Best,
Rob

@roblem Thank You for posting these articles Rob. Very helpful. My heart goes out to you as you have been through a lot already. Good luck to you going forward.

Well after 2 chemo cycles one week after another gonna have to move on from that and let the radiation finish it off.
Had too many complications from it . Old beat up body just isn't so tough anymore.
Just starting to feel normal again 8 days since the last round of it except for the shingles outbreak on my butt.
But on a brighter note making excellent progress on reduction in tumor size.
2 chemo and 9 radiation cycles its almost gone . Hope everyone is hanging in there.

Hi @johnschaar and welcome to the Head and neck group. Everyone is nervous about Chemo and radiation when it comes to treating head and neck cancers. The HPV+ variety appears far more responsive to treatment and far less likely to return. For myself and many others the routine was surgery and radiation only. This all depends on how invasive the cancer is. or rather what stage is considered.
I think you will find most doctors are not willing to treat patients who wish to drive the bus. I don't wish to get into a discussion between you and your wife. Perhaps she has a significant background in cancer treatments, perhaps runs her own cancer center with excellent results. I have no idea. But if you want the medical community to help you, then you must trust they will do the best they can. The only caveat is one should ensure the oncologist has significant experience with head and neck cancers, as they require precise treatment such as proton radiation as opposed to photon to minimize damage to healthy structures.
Anyway, not a doctor myself but I wish you the best. Perhaps others will jump in here to help. In the mean time, what stage was your cancer and what treatment(s) so far?

I had cancer on the base of the tongue and in a few lymph nodes. Like you, I was scared of the treatments. I was not a candidate for surgery, so I went with chemo and radiation. For years later, and my scans are still clear.

For me, I wanted treatment that had a long track record with data supporting its effectiveness. If the institutions that focus on head and neck cancer supported it, I was all in. If organizations like Mayo, MD Anderson, etc. didn't include it in their treatment options it wasn't for me.

You are the one with cancer so follow what your brain is telling you to do.

Good luck!

@stephenrfleury
May I ask what type of radiation treatment?

@hrhwilliam
I’m not sure I follow you. I was am very much in favor of proton treatment. I want that for my own care, however, I’m told that there is a high instance of ORN that wasn’t previously published or really made known to us patients. What do I do? I was told this by a prominent doctor at MSK. Would she lie to steer me away from proton therapy? My primary site is my left Palatine tonsil. I have a few enlarged nodes in my left neck. I have a growing node in my right neck. Two institutions both told me proton treatment would not help me. That ORN was a big risk….. reading your post. I’m really lost and fear I’m just wasting away valuable time.
I need to be treated. I don’t know what to do every month. It grows a little bit more…..