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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
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.
Replies to "I do apologize I am new to this group and I think I may have introduced..."
So sorry for the appointments you have coming up. But they are covering all the bases. I was diagnosed with HPV16 in August of
2021. I had 5 rounds of chemo, 35 radiation treatments. I was good for 6 months. Then it moved to the right lung. Surgery to remove that.
I feel it is good to know the origin for some piece of mind.
I have had MSCC for the past 11 years. Not HPV since external ear origin. My diagnosis was done at the University of Michigan when I asked local ENT for referral and all followup of surgeries and rechecks at Mayo Clinic Rochester MN. We live in Ohio but the quality of Mayo makes the travel worth it. I highly recommend a big cancer center/referral center for their opinion, if not also treatment there. Memorial Sloan Kettering and Johns Hopkins are perhaps closer for you than MN. I have been told that MSCC is not curable, only controlled, but mine has been gone for 2 years on a newer Immunotherapy Cemiplimab. I know that HPV SCC is much more responsive to traditional treatment. It is all very scary and the stress induced by your worry does not help. A couple of books I found helpful are How Not to Be MY Patient by Edward Creagan, a MAyo palliative care physician, and Radical Remissions by Kelly Turner. These books help you realize what additional things you can do to help yourself through this terrifying process of cancer. For a little different approach, The Rebel's Apothecary by Jennifer Sansouci is full of information. Good luck to you in this battle. Positive attitudes will keep you going.
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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.