Anyone had Metastatic Squamous Cell Carcinoma?

@jammirenee72 Welcome to Mayo Clinic Connect. While my experience with squamous cell carcinoma is limited to my skin. I was indeed surprised that it can be found in other parts and organs of the body, including head and neck, tongue, and lung!

Can you share with us a bit more information, if you would please, about where this was diagnosed in your body, and how long ago? What is your medical team advising you at this point? By your statement that it is evident in lymph nodes, you lead me to believe it was uncovered in an area other than your skin.
Ginger

@jamirenee72, I'd like to add my welcome. Like @gingerw, I'd like to learn a bit more about your diagnosis. This will help me connect you with other members with the same diagnosis. What part of the body is the original cancer?

I started my cancer journey back in Feb 2020; I had a spot on my lip that I thought was a pimple I didn't ever pay much attention for almost 2 years .
I finally took the steps to get it treated I underwent surgical procedure to remove the mass that was squamous cell I returned to the surgeon approx. 9 mos later because I still experienced a weird painful sensation and drooling I never did before . Fast forward on July 20:I had to undergo more surgery because it showed in my lymph nodes and now I start radiation my diagnosis mestastic squamous cell I am scared

I have had metastatic SC Carcinoma for over 9 years now. Original tumor in external ear canal, involved facial nerve and bone before diagnosed. Surgery was subtotal temporal bone resection plus superficial parotidectomy and lymph node dissection of neck. Those nodes were clear but surgical margins were not. Followed with Cetuximab targeted therapy and radiation for 7 weeks. First and second mets were in lung 18 and 36 months after initial surgery. Both removed via video assisted thoracic surgery. Lymph nodes were clear. Next met was a growing lump on pectoral muscle below shoulder. Surgical removal but no lymph nodes taken. Last met was over a year and a half ago in kidney with associated lymph nodes positive on PET scan. Started on an immunotherapy Cemiplimab and since last December have had no visible cancer. All this has taken place at Mayo Rochester. Dr Katharine Price is my wonderful oncologist there. There are newer immunotherapies available now for this disease with some good results. Was your tumor HPV associated? Mine was not and skin associated tumors like mine may respond differently than the HPV tumors. With the newer drugs available this diagnosis may be more treatable even if not curable. I have also done a complementary therapy of immune augmentation therapy in the Bahamas for the last 10 years. Do your research and consider a referral center for your best care.

I have it in my throat. It was diagnosed early 2019. It has not spread further. It is chronic.

@jamirenee72, I can imagine you're scared. Metastatic cancer are hard words to hear, but you are not alone as you can see from the replies your received from @sepdvm and @jimthomasintl. I'd also like to bring @srm @hoppy and @lori58 to share their experiences and journey along with you.

Jamir, when will you start radiation and how many sessions will you have? What is your main concern that you'd like to know more about?

I was treated for squamous cell ca of the nasopharynx in 1976 at Wilford Hall, the Air Force hospital in San Antonio. The good news is it didn’t kill me. The bad news is that the radiation rendered me deaf, and ruined my dental health. I have no saliva and it has become impossible for me to swallow pills and most solid food.

I don’t worry much about the cancer recurring, but I fear that the body parts that were most heavily irradiated will simply die or “fail” in the next few years. I am currently taking antibiotics daily to prevent osteoradionecrosis. This also helps to keep me from getting aspiration pneumonia, I believe, but that’s not the official reason for taking the doxycycline. I worry that my body is a breeding ground for antibiotic-resistant bacteria, but I don’t know what to do about it.

I had a gastric feeling tube for a while but I hated it, and after it fell out for about the fifth time I did not have it replaced. After that, I had to have surgery to repair a fistula at the stoma site.

I was diagnosed with metastatic HNSCC and malignant neoplasm of the lymphoid in April 2020. I had a very small spot on my left interorbital check (caused by solar radiation) that turned out to be squamous cell carcinoma that metastasized to my left cervical and axilla lymph nodes. I had outpatient surgery to remove the spot (tumor) on my face and began chemo/immuno treatment with carboplatin/taxol and 200 mg of keytruda. After 4 infusions (1 every 3 weeks) the CT Scan showed the largest lymph node had shrank in size from 13 mm to 7 mm and all other nodes returned to normal size. My oncologist decided to continue treatment with just Keytruda (200 mg every 3 weeks). After 5 infusions I had another CT Scan which came back NED. All lymph nodes had resolved, no evidence of irregular node activity. Because of the pandemic, my oncologist switched me to Keytruda @ 400 mg once every 6 weeks. Over the past 2 years I have had 16 infusions, the last one on August 31, 2022. The 3 CT Scans w/ contrast and 2 Pet Scans I had during that period all came back NED. Because I have not experienced any side effects, my Dr wants me to have 2 more Keytruda infusions. With the advances in treatment a metastatic HNSCC diagnosis is not as dire as it once was.

I had a biopsy 2 months ago and just got the diagnosis of SC carcinoma. Doc said it will be approx 4 months to get the rest of the tumour removed. Is this concerning? What should I be looking out for? Does it spread regionally (tumour gets bigger) or can it jump to other areas? My lesion is on my leg. I’ve had other spots appear on my leg and one in chest but they don’t look like the lesion on my leg.

@jamirenee72 I started my cancer journey in April 2021. I had what I thought was a pimple for about a year. I went to my dermatologist several times for it and told her to do a biopsy the last time I went in. When I went in to get the stitches out she told me she had read the pathology report and it was nothing to worry about. On Tuesday of the following week the Nurse Practitioner called me to let me know she had read the wrong report and that I have Squamous Cell Carcinoma. I was referred to a plastic surgeon and had surgery a few weeks later. The cancer affected my smile and left a large indent on my chin till April 2022 when I had reconstructive surgery to repair the nerve and tissue was put in the indent to fill it in. I seen the dermatologist today and she found a large and deep lump in my throat. She told me to contact my primary care doctor ASAP. I would be lying if I said I’m not scared. I’ve read about this cancer and it terrifies me. I thought it would show up on the skin before attacking something inside.
Was there a certain test your doctor did on you when you were seen by your doctor?
Are you currently taking any herbs or vitamins to help you fight it?

Thank you.
Myrtle