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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…
Nutrition after tooth extraction, several years post radiation for BOT Cancer.
I need to have a tooth pulled and a root canal on another tooth (RC shouldn’t matter). Since my radiation, which was four years ago, my main nutrition comes from 2 large smoothies, 4 total servings daily. Now I’m reading that after extraction I should avoid using straws, and avoid seeds. One of my smoothies has blueberries…
POT and Cancer.
Hi, Guys and Gals. I am a voice actor, and I was diagnosed with throat cancer in 2023. I have an animated character I created a long time ago, and now he will tell my story of survival. His name is "Cecil Jenkins". I hope you find my video inspiring, informative, and entertaining. [removed by CSN Support Team]
Perineural Spread?
Hi all, I am wondering if anyone has had experience with perineural spread? My fiance had two good scans January and April of this year following surgery, radiation, and chemo for SCC base of tongue. Post-surgery and in the radiation planning process there still appeared to be spread along V3 nerve. January MRI and PET/CT…
Possible cancer recurrence
I was treated for stage 3 tonsillar cancer in 2014. I had radiation for six weeks and have been cancer-free since. I recently noticed sudden weight loss, so I went to my regular doctor and he scheduled me for 3 CT scans with contrast from head and neck down to the pelvis. I feel confident that if cancer, it would be in the…
Salivary Duct Carcinoma
Hello, my name is Hannah and I am newly 26. I live in CT and work as a children's outpat clinician. I was recently diagnosed with stage 1 salivary duct carcinom...I start 6 weeks of daily radiation next week and I'm feeling pretty nervous about it...I had my treatment planning session last week and left feeling pretty…
3 months after finishing radiation, PET scan recommends lymph node biopsy
My husband finished 6 weeks of radiation in July, after having a tonsillectomy and a neck dissection that removed one cancerous lymph node and 29 additional lymph nodes. He has HNSCC-HPV-16+. Last week he had his first follow-up PET Scan and unfortunately it shows Prominent FDG uptake in another lymph node. The radiology…
Lhermitte's Symptom or Sign
Hi All, We have discovered a common symptom among a few of us here (D'Ware Jim, Skiffin John & I) called 'Lhermitte's Symptom'. Please read below to see if you think you get this sensation and can anyone who has, please post a brief note re: when it started, where you get it and if you have had any medical opinion etc.…
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…
The Hidden Price Of Everyday Tasks
Hello everyone. I came across this article on another support forum, and it occurred to me that I should share it here because many of us suffer from multiple treatment leftovers and other things leftover from our cancer treatment. There are also folks on here dealing with heart problems and breathing problems of other…
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.
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…

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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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