1. < Head & Neck Cancer

Squamous cell carcinoma (SCC) P16+

Posted by midiwiz @midiwiz, Aug 31, 2023

the biopsy stated P16 positive squamous cell carcinoma with associated necrosis...
Things are flying by me so fast, yet I read the article from Mayo saying less is more. Also waiting on a call back as I want to explore the options that I don't even know what is about to happen, I have never ever had any issues and out of no where here this lump is.

I should state also I've never ever had surgery, been in the hospital etc. but also I am very careful as I totally freak out (potential heart attack levels of freaking out) with needles and anything medical. I can't even stand to be in a hospital room. So when things are flying at me I have zero time to try to wrap my head around any of this.

Sorry for the long wind.... but any info to start to process this would help. I'm supposed to do a PET scan when I get back from vacation. trust me when I say that took me 2 weeks to get my head to where I MIGHT get through it.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

kevinsmccarson60 | @kevinsmccarson60 | 4 days ago

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.

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sepdvm | 4 days ago
In reply to @kevinsmccarson60 "Hello fellow SCC patients I was diagnosed with SCC HPV+ About two months ago. It’s a..." + (show)
@kevinsmccarson60

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.

Jump to this post

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.

REPLY
mjsweeney205 | @mjsweeney205 | 3 days ago

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.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | 3 days ago
In reply to @kevinsmccarson60 "Hello fellow SCC patients I was diagnosed with SCC HPV+ About two months ago. It’s a..." + (show)
@kevinsmccarson60

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.

Jump to this post

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.

REPLY
mjsweeney205 | @mjsweeney205 | 3 days ago

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.

REPLY
roblem | @roblem | 3 days ago

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.

Shared files

Low-Dose Radiation To Treat HPV Throat Cancer a 'Game Change' 02-12-24 (Low-Dose-Radiation-To-Treat-HPV-Throat-Cancer-a-Game-Change-02-12-24.pdf)

Less Treatment for HPV-Related Oropharyngeal Cancer - NCI article 09_27_23 (Less-Treatment-for-HPV-Related-Oropharyngeal-Cancer-NCI-article-09_27_23.pdf)

De-Escalated Treatment for HPV Related Oropharyngeal Cancer_05-24 article (De-Escalated-Treatment-for-HPV-Related-Oropharyngeal-Cancer_05-24-article.pdf)

In the Office with Dr (In-the-Office-with-Dr.-Marshall-Posner-on-Head-an-Neck-HPV-Cancer-article.pdf)

REPLY
1 reply
midiwiz | @midiwiz | 2 days ago
In reply to @roblem "Hi @midiwiz, I was diagnosed with Tongue cancer on my left side of my mouth on..." + (show)
@roblem

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.

Jump to this post

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.

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