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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…
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…
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…
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.…
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.
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…
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…
Vagal Nerve Damage from Radiation
Hi folks - it's been a long time. My husband had tonsil cancer over a decade ago and got the full chemo and rad treatment. I was active here for a while, but after a few years, I saw that others could provide any info I could, and it was hard to relive the bad days. Now, I'm learning about something that might be new to…
Severe reaction to insect bites post radiation
I saw a post from several years ago about severe reactions and swelling when being bit by mosquitoes post chemo. Has anyone had the same issues with bites post radiation? I had throat and neck cancer, TORS surgery and neck dissection followed by radiation. I did not have chemo, but did have 23 lymph nodes in my neck…
Blood test to detect HPV+ SCC - NavDX
I haven't read a lot of the posts.. however, in the ones that I have read, I haven't seen anything about the NavDX blood test. I just went in for my 9 month post treatment check-up at USC, and my ENT had ordered blood drawn for the NavDX test so that results would be in for my check-up appt. While my initial cancer was in…
Low Dose Radiation Treatment for Osteoarthritis ??
After I completed rad & chemo in 12/21 my rad doc said I should avoid all radiation, if possible, going forward. He is now pushing LDRT for my OA in my thumbs (after hearing that while I have OA in my SI & SC joints on the right side - there is no pain in the joints themselves). From what I could find on the the net it…
scaring on vocal cords - 3 1/2 years post treatment
saw rad doc this month for semi annual check up. (NED) he said he saw some scaring on vocal cords, which has never been previously noted before by him, the ENT surgeon and the speech pathologist. He did not offer any other info about it. I didn't think to ask him about this in more detail (I got distracted by his sales…
Val Kilmer's Throat C, Trachea, and Pneumonia
News just broke about his death, due to pneumonia. Think he was treated in 2015, but uncertain about the details and if surgery was involved. What is certain pertains to aspiration and pneumonia. FT-dependent since 8/2019 because of Rad damage to the top 1/3 of my esophagus, everything I swallow goes into my lungs. Thus, I…
HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?
I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been…
Carotid body tumors need help finding specialist!
My husband is 40 years old and doctors just found 2 carotid body tumors on a ct scan, one on right side of neck and one on the left. Surgeon that requested ct scan told us today to do our research and get him to a specialist in these tumors as he is not and doesn’t know anyone around here that is. We are south of Buffalo…
Skin care around the PEG
Any tips on care of the skin around a peg? The dressing got wet with drainage and in no time the skin around the peg became quite reddened and raw. I have been cleaning with a baby wipe and drying the area then applying aquaphor ointment.
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…
PEG tube pain
Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away. It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor…
Burning & Stinging when Eating
Hi, I'm Lisa. I am 1 month out from treatment for tonsil cancer. I had a PEG tube put in at the 3rd week of treatment due to horrendous mouth sores/Mucusosis. At one point, I could not even drink water. Since finishing treatment ( 7 wks Radiation, 6 chemo) I have been trying hard to introduce foods and drinks by mouth to…
Post-surgery Issues
Before the cancer developed on my tongue, I had 30 years of recurrent mouth sores. I had allergy testing (all negative), but I was able to identify some foods that triggered the problems including spicy foods and walnuts. This past September, I had a major outbreak, but this time, one spot did not heal - it turned out to…
Adenoid Cystic Carcinoma
My name is Debbie. I was diagnosed with ACC in March 2003. I had a large portion of my upper palate removed and now wear an obturator. I don't have anyone in my community that has gone thru this. I had 6 weeks of radiation. I just want to meet someone who has this disease and visit. I feel all alone out here.
Mucoepidermoid survivor
Hi! Could you help me? My husband is undergoing intermediate mucoepidermid treatment and I would like to have news about how it is to deal with the treatment, if there is a cure
Memorial Day May 26, 2025 We Honor and Remember our Fallen
Monday the 26th is Memorial Day, a day set aside to honor our country's servicemen and women who died in service to our country and who gave their all. These are the ones who gave their lives for their country-their last full measure. They deserve no less than the highest honor and respect. Participate in the National…
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.…
Stage 1 Cancer under left side of tongue front of tongue
Has anyone been diagnosed with tongue cancer under the tongue - will have operation on June 3rd. Is having tongue cancer in the front of your tongue worse than having it in back of the tongue. I never dealt with anything this before and just wondering. Can you all tell me the experiences with tongue cancer and what I…
Swelling in Knees and Ankles Following Chemo and Radiation
New to this network and learning so much as I assist my husband recovering from TORS and the 6 week chemo/radiation that followed. TORS was a breeze compared to the trauma of radiation and chemotherapy. His last radiation treatment was April 28, 2025 and while we expected the dry mouth, difficulty swallowing and general…

Head and Neck Cancer

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