Meet others living with Head & Neck Cancer: Introduce yourself

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?

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.

I received 35 proton neck treatments for squamous cell on root of tongue. Just lucky it was caught early and needed, no chemo. Reading about the symptoms all of us who have under gone radiation, I am sorry but I believe we are not being properly cared for. Some of us will never get our taste back or never find relief from dry mouth. And heaven forbid if we should ever need a tooth extraction. It probably will never heal. Mayo Clinic offers a freezing option vs radiation for prostate cancer. And I can’t for the life of me figure why no one American institution offers this easy to get to no side effects for the tongue. There is one Mexican institution that offers it. I raised the question with an ENT and he said Well, it comes back to which I responded And whoever said it couldn’t come back with radiation? And I went on ‘So what? Even if I offers only a couple of more years without this discomfort , it’s worth it, just ask anyone of us. It seems to me freezing should be the first option offered all patients. It would be kess lucrative but a lot better than 7;weeks of radiation and the discomfort that follows…no better time to start.

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.

I recently noticed a dark spot on my inner cheek and scaly
Red and white spots on my lip.
If this is lip cancer and inner cheek cancer what kind of doctor treats this and where is
the best place to go?

I do apologize I am new to this group and I think I may have introduced myself in the wrong spot. This is what I posted.

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.

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.

Hi @shielashepperd thanks for your response. So glad to hear you are making excellent progress, post- recovery! That is inspiring. Yes, I hear this cancer is much different than others. Praying for good test results for you in May and please share. He has one scheduled on 4/2, right before getting fitted for the radiation mask. Thank you also for the tips. I’ll be on the lookout for your results in May.

Thank you for your post. I am very sorry to hear about your husband. But he is lucky to have you as his advocate taking initiative to get information to cure him. I am actually a couple months ahead of your husband. I have Hypopharnyxgeal cancer stage 3a. Locally advanced. I also had Breast cancer 15 years ago. I can tell you breast cancer was so much easier to navigate than this. Mainly because there are many resources and awareness for BC. I finished my radiation 3 weeks ago. Cisplatain+35 rounds rads. No surgery. HPV negative (if you are + you are in luck). The treatment is like they say it is. Keep him active and do everything your doctor tells him to do. Keep his weight on with shakes and thick soups as long as possible. Also do the exercises. If they have not told you then ask or google them. 3 weeks post treatment my voice is coming back, I am eating & swallowing carefully and slowly. My radiated skin is peeling and I see new skin. No pain but I just have a cough that comes and goes. But that's fading too. My scans in May, so I too am nervous about my outcome. I am 57 years old, female, with kids in college.
I have many years planned ahead. I would love to meet someone in my situation, HPV negative, to tell me if it worked. For now I pray, exercise, eat healthy, and get hydration regularly. I finally having lunch with friends for the first time in months although I'll be whispering. I will post my scan feedback in May. Best of success. Feel free to reach out if you need anything. God Bless.

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.