Meet others living with Head & Neck Cancer: Introduce yourself

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 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.

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 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 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.

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?

Mantle cell lymphoma. Large lump under my left jaw and due to start radiation for it as well as prostrate cancer late next month which will take a total of 5-6 weeks of daily treatment. On the waiting list for the helping hands lodging at the Phoenix clinic but if anyone has suggestion for affordable lodging in the area in case the helping hands does not work out. Thanks and good luck to all facing any type of this disease.

The original lymph node involvement had a small amount of extra capsular spread. Which I understand to mean the cancer cells escaped the lymph node and are in the neck. Also of the two bad nodes one was completely taken over by the tumor. I was originally told by my surgeon I would just need radiation to my neck and no chemo. The radiation oncologist told me to speak with the chemo oncologist. She went over percentages and it is only a small gain by doing chemo. I am not being treated at Mayo Clinic but sought a second opinion from then. Their oncologist said she would recommend the chemo as well. So I’m doing both as a curative treatment to mop up any microscopic cells that escaped the lymph nodes. I did not want to say no to chemo and then have a recurrence and wish I had done it. I have to say the side effects are worse with both but I’m going for a one shot deal to get this disease out of me. Hope this explanation helped.

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?