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.
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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.
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?
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.
Thank you for replying. I had my tonsils removed in march of 21. When they diagnosed me with this they took a look back at my pathology report for tonsils, and it was clear. before this surgery i had 3 large lumps in my neck. The removed one fully and i do believe the other 2 are in there still. I will ask my doctors about what you suggest, ty. I am just hoping that the cancer hasnt spread to my cervix, or maybe it came from there, i have no idea. Im thinking my radiology appointment is going to talk about my treatment options. And i really hope i find out more answers. I have to wait until 4-10 for those appointments and the wait is driving me insane.
Again, ty for replying and I wish you the best of luck with your treatment plan. I will send good vibes your way as I dont believe in a higher power. Thank you.
I havent talked to my oncologist or radiation oncologist yet. That is on 4-10. But I will be weighing out all options. I hope I dont need another surgery. I hate what the anesthesia does to me its so embarrassing. Some people are happy and giddy. I am a hysterical basket case and cry very loudly.
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.
After your oncologist appointments if you need help, advice, or encouragement there are a lot of us here to talk to. And please, when it comes to anesthesia we all get a free pass to be as crazy 😜 as we will ever be. Keep us posted.
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.