Squamous cell carcinoma (SCC) P16+

I vote for De-Escalation and Proton Radiation all the way. The best way I can explain is to tell my story..
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 tried to get De-escalated amount but doctor really pushed the full 30 rounds. I am currently 2 years post 30 rounds ( tried to get De-escalated program but could not) 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. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. 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 90% back, My stamina is back to about 90% . I had a throat scope and CT scan every 3 months for the first two years. I have now gone to every 6 months. 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 as It will help you on your journey. God speed!

Hello,
Just starting this journey. Felt something in my throat a few months ago, seemed to get worse and effect swallowing. So, I went to GP end of July, referred to ENT. Got scoped & neck CT within a week & referred to UF Head & neck surgeon. Luckily for me things have happened fast since I had initial Drs appointment. Biopsy of additional neck lump result Squamous cell carcinoma (P- 63, P- 40 and P-16 positive). Have appointment with Oncology Dr plus Radiation Oncology Dr this week. I have done a bunch of research (reason for me being on this thread). So feel pretty informed about what the next month or 2 will be like for me... I am also in a de-escalated radiation and chemotherapy study. I'm all for anything that may reduce treatment side-effects/improve quality of life.
My question is about Proton therapy. I will be bringing it up in my consultation appointments this week, but just looking for feedback. I also will probably post something in the thread I saw specifically on Proton therapy.

Thanks, I've already talked to Dr Lee. and these are all fine, except none approach where I'm at. Mine is definitely withing itself meaning after 2 years it hasn't gone anywhere and is just encapsulated inside it's dead stuff. is the best paraphrase I can say with what I was told late last year.

I'm working on a much different angle, we know Keytruda gets rid of it fairly quickly and is far better than what the 'standard' Rx is for it. I'm is discussion with a provider moving towards a few rounds of Keytruda we have yet to figure the start and how many probably 3-4 worse case 5 as I'm doing a fairly decent job at letting it kill itself.

Thanks again for the info as I know Lee won't travel down the path, but I always like to have names I can approach of providers that just may jump into the keytruda boat with me.

Hi @midiwiz,
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 where I had chemo and radiation back in 2008. As others have said here is get a second opinion and make sure it is from a cancer clinic.

I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable.

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.

Hope this helps and God speed.

Yes
Going through radiation and chemo is a bitch but I was fortunate enough to have a great care team. They made sure I had access to everything that would make the process easier.

Hi @kevinsmccarson60 I agree with others here that HPV+ type has proven to be quite successfully cured in most patients. The road to cure however is a difficult road, taking over your life for a few months, and not a fun trip whatsoever. If you have questions, this is the place to ask. Don't hesitate to start a new Discussion with your question(s) as specific results are more easily obtained that way.
All I will say is please question your care team as to their experience with SSC in head and neck specifically. If they are first timers, please seek a referral for the best care. In the long term, it will matter most the care you received. Courage.

Had the same thing on my tonsil.
Went immediately to MSK.
Because it was hpv +and p16+ the radiation treatments worked very well.
Just went for my one year PET scan and the cancer is still gone.
Thank God and a great radiologist.

Hello @kevinsmccarson60 and welcome to Connect Head n Neck. I'm sorry that you are joining us with your diagnosis, but you may appreciate hearing of others' experiences and feeling the support of individuals who know what you are going through. The medical community today is tough to navigate. Waiting is the worst, when all you want to do is get that cancer OUT NOW.
I was lucky to experience treatment at Mayo Rochester after 4 months of local doctors and tests prior to a diagnosis. Things can happen so very fast at Mayo that it spoils you for dealing with the normal medical journey. Keep after your medical team for better timing as you are your own best advocate. Sometimes the squeaky wheel does get the grease.
While radiation and chemo are not a fun experience, the sooner started, the closer you are to the end and healing can begin. We are here to help if you have any questions.

Hello fellow SCC patients
I was diagnosed with SCC HPV+
About two months ago. It’s a slow process to get all tests and appointments done. Referral nightmares. Blah blah blah. But I got the surgery done to remove the mass on left side of neck but they didn’t have the order to do the chemo port at same time. That was three weeks ago. Tomorrow I get the port. Then I still need to get radiation appointment and fitting done. Such a slow case. Mainly at the hands of my oncologist and PCP offices. Referrals have been a nightmare
Hopefully I can start treatment at end of May.

My original chemo was cisplatin, but my creatin levels were to high so they switched to a variant of it. They mixed it with a steroid and anti nausea meds. My side effects were not bad from the chemo. I had chemo every Monday for 7 weeks and radiation 5 days a week. I lost a lot of weight and my facial hair fell out. I am coming on a year out of treatment and doing fine. 3 scans and all is well. My appetite is good and no pain since last August. Psalm 138 was and is strong medicine for me.