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Head and Neck Cancer

Superthread (Read only) ~ contributed by Sweetblood22
Welcome new members! This is a read-only post that provides information about resources we, members of the head and neck cancer forum, found helpful as well as our answers to most frequently asked questions in our forum. Please feel free to send Skiffin16 a private message (PM) if you have something you think should be…
Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
Immunotherapy for Squamous Cell Carcinoma, base of tongue
Brief recap: 2007, SCC left tonsil/lymph gland, minor surgery, 35 rads, 7 Cisplatin Chemo, still all clear last PET 3/2025. 2022, SCC right tonsil, TORS for tumor, RND of the neck. No chemo, 30 rads. PET 2025 shows reoccurrence near base of tongue. Surgery and radiation not an option. Waiting on appt to discuss…
Side effects of radiation and chemo for treatment of NECK cancer.
Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had…
National Institutes of Health Trial participant HPV16 Tonsil cancer
Without a lot of medical technical details I am a 71 yr old male. Diagnosed with HPV tonsil cancer in May 2025 and received a recommendation to join a trial at the NIH in Maryland designed to change the common treatment protocol - Three rounds of Chemo first 7 weeks apart (June and July 2025) to reduce the tumor of the…
Introducing myself, a spouse caregiver
My husband has HNC that originated in his tongue. He had half his tongue and a lot of lymph nodes removed. 7 weeks of radiation with cisplatin adjunct therapy. 3 month PET was ~clear but areas to watch under his tongue. 6 month PET, plus punch biopsy (that I pushed for) revealed radiation didn't get it all. He has a mass…
NavDX positive test
Hello, I have HPV related head and neck cancer. I've had three surgeries....a biopsy, radical tonsillectomy and a full neck dissection. I'm currently undergoing radiation treatments. I was told after removing the tumor from my tonsil that the margins were good and the cancer was removed. I recently had a NavDX test done…
radiation induced brachial plexopathy
I am now 63 years old. I had oral cancer, and was treated with Cisplatin and radiation. They beat me up pretty good, and I have several residual issues but the cancer is gone. About three months after my last treatment, I started getting numbness and tingling in my finger tips. It spread within a month or so all the way up…
Radiation Induced Plexopathy
Hi All. I used to be a regular on this board. Diagnosed SCC unknown primary in April 2010. Had surgery only and was considered cured 5 years later. in 2017 I was diagnosed with SCC unknown primary a second time. Ended up finding a tumor on the right BOT. This time I had radiation and chemo and I am still cancer free over…
The importance of reducing/eliminating stress in virus-related cancer - study attached
I believe 100% that my cancer was caused by an excessive amount of stress.. brought about by anxiety, worry, and fear about $$ and a whole host of things outside of my control. Stress lowers our body's natural immune system and weakens our ability to fight off sickness and disease.. and it also can activate dormant…
Alcohol Consumption after Cancer Treatment
Hello, I am a cancer survivor, I had a large tumor on the rear of my tongue and 7 weeks of aggressive radiation and chemo. I just passed my 5 year treatment anniversary and thankfully healthy. Has anyone heard anything about the effects of drinking alcohol after treatment? I'm not a big drinker but I can no longer feel the…
My partner may have Cancer because of me.
I didn’t know I had HPV when I was intimate with my partner. After I got the diagnosis, I was in tears. I got my HPV vaccination in my adolescent years. I was scared to let my partner know he might have it as well because of me. After telling him, he said nothing was going to change between us and everything will be ok.…
need help please
hi everyone: I have to come here to see if anyone else have had the same frustration. I noticed a lump in my neck, under the jaw, although not too obevious but it's enought to freak me out. I have tried to contact several cancer society offices, lab and specialist offices to arrange an appointment to have a check up, but I…
Pervistop
Has anyone tried the supplement Pervistop? It is supposed to help the body shed persistent HPV.
How to travel when all I can eat is smoothies
It’s been four years, as of four days ago, that I had my last radiation session for BOT Cancer. I still have problems eating solid foods and even some foods not so solid but grainy textured. It’s not that I can’t swallow, it’s more like dry foods stick to the back of my throat, my gums and teeth, sometimes to the point of…
Her we go…
ROOKIE
After a couple of months of diagnostics and strategizing a treatment regimen, I walked into the chemo lounge for the first time. I’d already had a couple of radiation treatments and was starting to catch on to how this was gonna go. I approached this whole thing naively and with overconfidence in my abilities combined with…
Newly diagnosed. What to do??
I’m a 65 yr old active male in reasonably good shape who has just been diagnosed with HPV related cancer. Long story short, I was sent to an ENT due to a right side tonsillar mass which was surgically removed. Biopsy result was a bit vague regarding whether or not the removed tissue had clear margins, only stating HPV+ and…
Base of tongue cancer
They discovered I had cancer in Tonsil, base of tongue, lymph node, same side Last Treatment was Chemo and radiation finished Jan 27 2025 CT in 6 weeks post treatment MRI at 3 months post treatment Everything looked the same Then Last MRI a week ago showed a 5 mm increase at Base of tongue Now 1.6 cm Was 1.1 cm 3 months…
Web chat on HPV/Head and neck cancer
Hello everyone, Saw this on cancerquest. It will be on January 24th at 12:00 p.m. A Dr. Mark El-Derry of the Emery Winship Cancer Institute will be having an online web chat about HPV and H/N cancer. Sounds like there will be a chance for asking questions and getting them answered. The link is below…
HPV throat cancer - website for treatment and recovery. "My Throat Cancer Story - 2015"
Hello Everyone, I just finished my HPV throat cancer treatment 8 months ago and recently created a website that discusses all the things that I did to help with treatment and recovery. "My Throat Cancer Story - 2015". DryMouthThroat.com I will be adding more to this website over the next few months. Robert
Burning Burn Tongue After Radiation Please Help
I am 4-1/2 months post chemo and radiation for tongue cancer. I had the cancer excised from the left side of my tongue 16 months ago. T1N3 The problem that I have is a burning and painful tongue. The burning feeling extends from the point of excision on the left, all the way around to the right side of my tongue along the…
OSCC of the tongue, heading into chemoradiotherapy...
Hi. My name is Gary Chau. I am a 40 y/o male diagnosed with OSCC of the tongue back in May 2025. My story begins almost a half a year ago after I bit the left side of my tongue. After a day or two it healed up like most tongue bites do, however, in the following weeks it had formed into what I thought was a canker sore.…
An Inspiring Lady Trying To Help And Inspire Others
Below are a couple videos of a very inspiring lady who, like all of us on here, suddenly had head and neck cancer to deal with. And like many of us, it changed her life forever. But she fought on and is now a motivational speaker. I found her very inspiring and just wanted to share this with the rest of you on here. Maybe…
Shoulder Pain and Dysfunction After Radiation
Remembering that I have had radiation twice, most will not run into this problem. But some will, and as I've not seen a reference to it before, thought I'd talk about this situaton. It has taken me awhile to figure out I had a problem. Beginning soon after my last radiation, I started having mild bilateral shoulder pain. I…
Hallelujah diet
I found a question from back in 2012 about this diet. I wanted to note my experience with it. I was found to have Hashimoto‘s thyroiditisH level of 115 which is comatose, and many tumors which turned out to be atypical. The to remove my thyroid. A coworker told me about the hallelujah diet. Back then we could visit the…
Options when there’s no Primary?
Ever since what was thought to be a benign branchial cyst removal ended up as P16+ SCC lymph node (one) the docs have been searching for a Primary cause of this cancer. My husband has has PET scan, MRI & NAVDX - all come up clean, no “light-ups”, 0% disease. TORS procedure also identified no definitive primary even with…
NavDx test
I am aware of for a lot of people NavDx test is a great help but unfortunately my husband has not been lucky enough to be one of them. He got diagnosed with HPV+ T2N1M0 squamous cell carcinoma(SCC) on his left tonsil in June 2023. He went through surgeries, 33 sessions of radiation plus 6 sessions of low dose cisplatin. He…
7 year follow up
Last week I went up to Cleveland Clinic for my 7 year follow up. I met with 2 different NPs (3, if you count the one that was shadowing). It was pretty routine - lots of questions, say ahhh, scope through my nose and down to the original BOT site, say other syllables, etc. Everything looked good and I once again proved to…
Newcomer here
I have been diagnosed with cancer of the tonsil that has spread to the lymph node. I am faced with the decision to go with just radiation or radiation with chemotherapy. I am 78 years old so I am leaning toward just radiation. If anyone would share their experiences with me it would be very helpful.
And so my Journey Begins . . .
My journey is about to begin so I figured I'd set it down and tell it as it goes. As it goes I will update and try to answer any questions. Symptoms: In June 2022 I had my yearly physical and my blood work came back as good so no indications of anything. Felt great. Started August with a sore throat and a full left sinus.…
"Baroreflex" Failure" A Rare Late Effect Of Radiation Treatment
I came across this article written by a Gentleman on another forum about late-term post-radiation effects which can give you a condition where your blood pressure swings wildly from high to low or low to high without notice. There is no cure but some control can be realized with meds. I just wanted to let the group know…

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The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Head and Neck Cancer

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