Meet others living with Head & Neck Cancer: Introduce yourself

Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by an ENT for a few months with initial symptoms of a clogged left ear and those symptoms grew to excruciating pain which mimicked TMJ on the left side of his face, pain in his left ear and then numbness on the left side of his head and face. He was unable to eat and lost about 20 lbs. in the process. By the time he had a MRI on 12/30, they found a mass that was eventually staged as 3/4A. He is currently undergoing the initial 3 chemo cycles and set to begin radiation next month and continue with chemo once a week. We have had a few treatments delayed due to low blood counts as well. He no longer has the excruciating pain, but has not regained the weight, but is able to eat. He is also fatigued most days and having the typical chemo side effects after treatment. He is expected to have a PET scan at the beginning of April. Just curious for those of you who have had/currently have this diagnosis, did you see significant shrinkage of the mass on the first scan following treatment? Just curious since the pain is no longer, should we expect to hear some good news. We understand, regardless of what the scan shows, he’ll still have to undergo the 35 radiation treatments. The doctors have told us about all the side effects that he can expect as a result of the treatments. Also for those of you who have experienced radiation for this type of cancer, curious if these side effects are as bad as they are projecting? Were you able to work going to treatment daily? Thank you for any input you have. This is all so very new to us, as I’m sure it was to all of you. We are honestly still processing and trying to learn as much as we can. Thank you.

Hi Erika, my story is similar. I had a bump on my neck which was eventually diagnosed as HPV+ SCC. The lymph nodes were at level 2. I also had no obvious primary but the tonsils drain to that area of the lymph nodes so a biopsy of my left tonsil confirmed a small primary tumor there. This was in December 2022. Since then I’ve had two surgeries and am now undergoing radiation and chemotherapy. I was also told the prognosis is very good for HPV+ cancer as it responds to treatments better than HPV- cancers. There is a blood test called NavDX that detects HPV+ tumor cells in your blood. Ask your doctors about it. I had a positive score before surgery and after surgery the tests detected no circulating tumor cells at all. I’m receiving radiation and chemo to make sure no microscopic cancer cells spread anywhere else. It’s a long process and I recommend finding a comprehensive cancer center to be treated at. They will coordinate your care and all your treatments. God bless you and stay positive as you will beat this.

Hi! My bf had a similar diagnosis and surgery as well. He also had a negative result with the blood test. His doctors seem to be on the fence about any further treatment. I’m curious as to what benefits the radiation and chemo treatments provide. Did the doctors give you a choice to undergo further treatment just to be sure? Did they talk about percentages etc?

I would go see your PCP. Good luck with getting anyone to reply here, my post has been on for 18 hours and still no replies.

Hello, my name is Erika. From Pennsylvania. I was diagnosed with Metastatic Squamous Cell Carcinoma HPV positive in my neck lymph nodes and they are not finding where my origin is. I was diagnosed on 3/14/23. I first noticed a small lump in my neck in November of 22. I didnt think anything of it until February when I had noticed it had grown considerably. I had my first appoint with PCP on Feb. 14. And since then I have had blood work, ultrasound of the neck, CT scan of neck and then chest, a biopsy of the neck, and then surgery to remove all or part of the node to be ran through the lab. It indeed come back as MSCC +HPV. The CT scan of my chest didnt show much significance. All that was put in the report was Minimal linear atelectasis in the right middle lobe. Few 1 to 2 mm punctate
subpleural nodules noted in the lower lobes. I since had a PAP smear and the results have not come back yet. But on physical examination they noted a few lesions on cervix. I have been set up with a oncologist, radiologist(4-10), and a gynecologist(4-18). My ENT doctor said that my kind of cancer has a good prognosis, but everything I read online says poor prognosis. He also said that it would be better if they didnt find the primary cancer origin. Anyone else have a similar story? Any advice on what to do in the waiting period? Or any advice at all with anything will be appreciated. Im sick with worry.

I am 16 months out from my treatments. For HPV16 I got 5 chemo treatments and 35 radiation
treatments. My cancer has moved to my right lung for the second time. I had 10% removed last November. The next surgery has not been determined yet.
Now I am beginning to have swallowing problems again. Does anyone know if scar tissue can be an issue in my throat? I had lymph nodes on both sides of my neck radiated.
Or has anyone had their esophagus stretched?

Will you please tell me how I identify or go to the latest posts?
Right now I'm on an iPhone I could go to the computer, but typically I use the phone . Thank you, best

Hello everybody here!
I wish all the best for you all brave cancer survivors.
I am diagnosed with stage II SCC of tongue May 2022. operated on the same month. I underwent a subtotal glossectomy, all neck lymph nodes dissected, and a tongue reconstruction was done with a flap from my breast.
the post operative phase went fine, NGT tube removed after 45 days and I started taking oral fluid diet.
After two months I received 30 sessions of radiation.
My suffering starts when I discovered that there is a defect beneath the tongue where food particles went and lodged there. It is very annoying and painful, I try my best to clean this pocket, but still some tiny particles stay there.
After radiation therapy I developed a mild neck lymphedema, but now I am fine, it is not progressing (Thank Allah).
The first MR image seems to be assuring.
Three weeks ago, I did A PET Scan, and it shows a cyst on the left Jaw, and two small lung nodules.
We are seeking different Professional opinions since some regard these nodules as suspicious, and others think they might not be that bad, and advised us to wait for a while and repeat the PET Scan.
We are waiting the opinion of the oncologist.