Skin squamous cell carcinoma (recurring)

Hello @annabach and welcome to Connect. I have had metastatic SCC for 11 years now. It started deep in my ear and invaded bone before diagnosed. It was skin origin not mucous membrane so more similar to yours. My mets have been to lung and muscle and kidney and with the last one with lymph node involvement I have been on the Immunotherapy drug Libtayo (Cemiplimab). It is a checkpoint blocker that has proven effective in skin origin SCC when surgery is not an option. After a little over 2 years on it, my kidney and lymphatic mets have disappeared and I had a final infusion in April. This has all been directed by Dr. Katharine Price, the head and neck oncologist at Mayo Clinic Rochester, MN. My infusions have been done at home in Ohio every 3-6 weeks. It sounds like your SCC is quite aggressive and perhaps you can talk to your oncologist about testing your tumor for PD1/PDL1 to see if it has high enough levels to be responsive to this treatment. I highly recommend pursuing treatment at a large cancer center for the best of treatments and I hope you can think about a referral for second opinion. I'm happy to answer any other questions that may help you. Good luck to you, all those surgeries have to be exhausting and stressful.

I have had many squamous cell skin cancers removed, either by MOHS surgery or just excised with stitches. I was a lifeguard for many years when I was in high school and college and I think that I may now be paying the price. I never realized that squamous cell could also be metastatic. I had something develop on my lower lip that was first diagnosed by a NP at my local dermatologist as a squamous cell. I went to Mass General Hospital Dermatology dept and a very knowledgeable doctor told me that it was a precancer and not squamous cell (this time!). She was able to do that freezing spray that they use on my lip, several times, and it was painful, but I was just so grateful that it was not another squamous cell on my lip. All of my best wishes to both of you, Sue and Anna. I am so sorry to learn of all that you are both going through and have been through. MaryAnn from Boston

Thanks, Mary Ann! So glad the lesion on your lip could be resolved without surgery! I appreciate your empathy. Life is a journey into old age that is still impacted by our youth. Hope you don’t require further interventions from your life-guarding days!

Anna

My Dermatologist offered an alternative treatment and it was a disaster for me. They encourage patients to consider Superficial Radiation Treatment (SRT).

I ended up with a non-healing ulcer in my lower leg that took a year to heal. Weekly visits to a wound treatment center for painful debridement and 30 days of Hyperbaric Oxygen Treatments (HBOT) provided the best path to healing.

I thoroughly researched SRT and found it is contraindicated for lower limbs. Lower vascular circulation is impeded by radiation damage.

In an effort to protect other patients from the ordeal I experienced, I documented my research on the FDA adverse event MAUDE database. This and other adverse event reports for SRT treatment injuries can be found on the FDA MAUDE database, search manufacturer “Sensus Healthcare” with a date range starting in 2016 to current date.

SRT is marketed to Dermatologists and I suspect it is effective for head and neck regions, it is contraindicated for lower limbs and they falsely claim it is ideal for SCC in lower legs

Thank you so much for this information. Most of my outbreaks of squamous cell cancers have been on my lower legs. I have been searching for alternative recommendations, so your information is timely. I appreciate knowing your experience, but am so sorry you have had to endure this long recovery period. I am going on my second year of continuous outbreaks. Two more MOHS procedures are scheduled for next week, and I know it will be weeks and weeks of wound care. It is an exhausting journey! My best to you for no further complications!

Just to add a comment regarding SRT, I ended up going to two Wound Centers, one in SC and later transferred to one near our home in Tennessee. When I entered treatment, both Wound Centers indicated that I was not alone; they were treating or had previously treated patients with non-healing ulcers in lower legs caused by SRT. The damaged caused by radiation made the injury much more difficult to heal compared to Mohs.

There is a wound care blog by Carolyn Fife entitled “Stop the Madness of Shin Radiation”, detailing radiation damage to lower legs

I wish you well as you deal with SCC

I just had a biopsy on my lip two days ago because something else appeared in a different spot. My new skin dr is hoping to rule out a squamous cell by doing the biopsy, but she did tell me again that I have a lot of “pre-cancer” on my lower lip due to sun damage over the years. Now waiting a week or two to hear back from her on my results. *Hoping* that it is not a squamous cell!

I have had many squamous cell cancers-- seems like every time I go to the dermatologist, he takes off either a squamous or a basal cell skin cancer. I have also had 2 melanomas. Lots of pre-cancers as well, both on skin and on other parts & pieces! It is not only the sun that has caused all these cancers. Bad genes I assume. I am darn sick of these darn things, but NOT worried!
I just had a squamous on my hand sent out for biopsy, it is healing nicely and in about a month, the dr. will take a little more out. (not Mohs again thankfully) All the drs., dermatologists and others have assured me that as long as these skin cancers are removed in good time, except of course melanomas, you really do not worry so much,
You will be fine, believe me!

Thanks for reaching out and sharing your story. It is always comforting to feel we are not alone in the struggle I totally get that most of the time the SCC is not at all life threatening if removed in a timely manner. However, I also had a friend who died from an aggressive SCCon the top of her head that attacked her brain.. One SCC I had removed by MOHS was also a very aggressive form and the doctor had to remove tissue all the way to my calf muscle to get it all - even though the lesion had only been visible a few weeks. His comment was that he had had patients who had worse results from this kind of SCC than from Melanoma (which I have also had). I am over 30 removals over the last two years - mostly on my lower legs, many of which have become infected. This last aggressive one required 3 different antibiotics before the infection finally relented. So I am VERY weary of this constant struggle even though I recognize that I am fortunate to have a very treatable challenge. Legs are just so slow to heal and so susceptible to infection. But I am doing everything I can to care for my wounds. And I am taking a thousand units of Nicotinamide ever day. I wrap my wounds in plastic when I shower. I am allergic to antibiotic creams, so I can use only Vaseline to soothe the wound site. I use a steroid cream to deal with my allergic reaction to the gauze, paper tape, etc. on the surrounding tissue. It’s been a true learning experience of what helps. Next week I get the next two MOHS procedures. Please send positive vibes that these may FINALLY be the last two - at least for awhile. We have a “trip of a lifetime” planned for November and I pray I can be wound free and have legs healthy enough for the challenge!

Ugh! I will hope with you! Let me know what you learn. That’s such a sensitive area to deal with. Best wishes for a simple procedure!