Skin Cancer - Squamous Cell

Posted by CANCERRUNNER @cancerrunner, Jul 11, 2011

Skin cancer survivor here of a rare form to head & neck area. Squamous cell that appeared quickly under my chin then spread within a few weeks to the bone requiring aggressive surgery, then recurrence and then very agressive radiation therapy. Best guess by experts is that my physiology and prior scars may have exacerbated the tumor. I’m an endurance athlete with a hyper-metabolism, but not a sun person at all. I survived with extensive knowledge of how to live life fully without fear of sun exposure. Cancer hit me at 34.

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Been looking on the internet for people who have had squamous cell carcinoma. Last month I got diagnosed with SCC it turned out to be stage 3. The cancer started on my lip and spread to the tissue and muscles around my chin. I just turned 30. I saw your post and was curious about your treatment. I just had surgery where they removed the cancer along with 85% of my lower lip and part of the tissue and muscles in my chin. They said they were confident they got it all, but would like me to do some other treatments to make sure it did not spread. The pathology came back that the cancer was “uncontained” so there is a chance it has spread to other places. They mentioned Chemo and or radiation therapy. I was wondering what your radiation therapy was like? How did it work? How long did it take? What was the recovery like? What was it called? Any information you have would be appreciated. Thanks. Hope all is well.

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@dougstory

Been looking on the internet for people who have had squamous cell carcinoma. Last month I got diagnosed with SCC it turned out to be stage 3. The cancer started on my lip and spread to the tissue and muscles around my chin. I just turned 30. I saw your post and was curious about your treatment. I just had surgery where they removed the cancer along with 85% of my lower lip and part of the tissue and muscles in my chin. They said they were confident they got it all, but would like me to do some other treatments to make sure it did not spread. The pathology came back that the cancer was “uncontained” so there is a chance it has spread to other places. They mentioned Chemo and or radiation therapy. I was wondering what your radiation therapy was like? How did it work? How long did it take? What was the recovery like? What was it called? Any information you have would be appreciated. Thanks. Hope all is well.

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My oncologist spoke with national panels and chemotherapy was deemed to have little benefit. So I underwent aggressive radiation. Bottom line, I suffered. I lost 35 pounds, tried to eat but was tough, drank but tough so I endured. Cancerrunner.org for more info. Have your dentist seal your mouth and teeth and get some Stanford mouthwash. Connect with pain mgmt specialist and prepare for hydration therapy. I used a PIC line into my heart and gave myself home IV. Your mouth will be horrible so prep for a more liquid diet. Look into making cheese souffle and stock on Boost.

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I have a friend with this exact problem. She is going through radiation and no chemo. What kind of surgery? She would have had to lose an eye among other things with only a 20 percent chance of living an extra two years. She thinks she will die. What prognosis did you get? Thanks in advance.

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@barbarab

I have a friend with this exact problem. She is going through radiation and no chemo. What kind of surgery? She would have had to lose an eye among other things with only a 20 percent chance of living an extra two years. She thinks she will die. What prognosis did you get? Thanks in advance.

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Odds were to just make it through extensive radiation then we’ll see. The radiation onc to me to the edge then even more. I was checked every month with alt MRI, PET, CT for two years. Not pretty but still kickin.

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@barbarab

I have a friend with this exact problem. She is going through radiation and no chemo. What kind of surgery? She would have had to lose an eye among other things with only a 20 percent chance of living an extra two years. She thinks she will die. What prognosis did you get? Thanks in advance.

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Hi, thanks for the reply! My friend is like a mother to me, and I can’t bear that she could die. (And I already lost my mother – to melanoma). I am flying out to see her and take her to radiation for a few days. She went to Mayo but didn’t get any good news. So, now she is just doing radiation locally where she lives. What was your prognosis if you don’t mind sharing – i.e., what did the doctor say were your chances when you were first diagnosed? It sounds like you had no surgery? That’s wonderful you’ve already gotten two years.

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@barbarab

I have a friend with this exact problem. She is going through radiation and no chemo. What kind of surgery? She would have had to lose an eye among other things with only a 20 percent chance of living an extra two years. She thinks she will die. What prognosis did you get? Thanks in advance.

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I had extensive surgery then radiation. My prognosis was stage III squamous cell carcinoma with low odds since it was speading so fast. Had recurrence after surgery. The cancer was aggressive and spread to the bone. Got lucky to keep my jaw. More info at cancerrunner.org. Contact me anytime and tell your friend to ping me.

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@barbarab

I have a friend with this exact problem. She is going through radiation and no chemo. What kind of surgery? She would have had to lose an eye among other things with only a 20 percent chance of living an extra two years. She thinks she will die. What prognosis did you get? Thanks in advance.

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Wow, what an amazing story. Made me cry and admire you at the same time. I wonder if my friend V. will contact you. I will see her second week in October. Maybe I will read her your story when she is lying in bed nauseous from the radiation she gets M-F. She does not want to lose her eye and drink out of straw so she has opted not to do the surgery for now. She is much older than you (mid 60s) but she has that same positive outlook on life and her mother lived until just a few years ago so why should she go so soon herself. I get little squamous patches on my face – one now I am supposed to put chemotherapy cream on for 4 weeks, then antibiotic for one. I see another one starting – always just small little red spots. Seems like nothing compared to what you had, and V. has now, but god help me if one metastasizes. Anyway, if V. wants to ping, maybe you’ll hear from us/her. Can’t know what she feels or wants – I know I’d want to talk to someone like you if I were in her shoes, but have no idea what would be helpful to her so we’ll see. Thank you for your emails. I wish you, your wife and little fella all the happiness in the world.

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I had a kidney tx in 1978. Everything has gone well and I’ve lived a great life longer than I expected. But am still here for the fight. I’m on medrol and Imuran and have reoccurring skin squamous cell cancers. They just get removed biopsies and more removed if necessary but they are reoccurring fast 8 in 2 years. I’m on niacinimide omega 3, sea Buckthorn and just started lutiolin. Dr. Have reduced my imuran researched solutions but to no available. Any similar stories?

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@pamelakx1978

I had a kidney tx in 1978. Everything has gone well and I’ve lived a great life longer than I expected. But am still here for the fight. I’m on medrol and Imuran and have reoccurring skin squamous cell cancers. They just get removed biopsies and more removed if necessary but they are reoccurring fast 8 in 2 years. I’m on niacinimide omega 3, sea Buckthorn and just started lutiolin. Dr. Have reduced my imuran researched solutions but to no available. Any similar stories?

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I have several squamous cells, they ended up doing chemo injections in legs snd arm, all healed except left leg, I had a wound that woukd not close , did 3 biopsies, first positive second negative snd third positive, they sent me to wound specialist for a MOH th started me on clindamycin 300 bid for 20 days, they had no luck with it snd sent me back to dermatologist, who decided I needed a MOH specialist, Dr Lim took two layers off shin and closed it back, after 3 weeks, back for stitches removal, area, very painful to touch, she doesn’t know why it is so inflamed told me to come back in 2 weeks, the 19th will be two weeks! In meantime I sent a message to my dermatologist asking if I should go somewhere else, she said Dr had spoken to her snd they think my reactive squamous is back in the same spot, I have been going thru this since last June 2020, I have called Mayo in Jacksonville, hoping I can get done answers

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@pamelakx1978

I had a kidney tx in 1978. Everything has gone well and I’ve lived a great life longer than I expected. But am still here for the fight. I’m on medrol and Imuran and have reoccurring skin squamous cell cancers. They just get removed biopsies and more removed if necessary but they are reoccurring fast 8 in 2 years. I’m on niacinimide omega 3, sea Buckthorn and just started lutiolin. Dr. Have reduced my imuran researched solutions but to no available. Any similar stories?

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Hi Pamela, Congratulations on 40+ years with a new kidney. Transplant recipients are more susceptible to skin cancer. @threerrr3 also has a similar experience with liver transplant and skin cancer.

@jolinda started this discussion about sun protection and transplant patients that you may wish to add your tips to.
– Anyone have tips on sun protection? https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/

You must have to keep a watchful eye on your skin. Are the lesions usually caught early?

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@kscherz

I have several squamous cells, they ended up doing chemo injections in legs snd arm, all healed except left leg, I had a wound that woukd not close , did 3 biopsies, first positive second negative snd third positive, they sent me to wound specialist for a MOH th started me on clindamycin 300 bid for 20 days, they had no luck with it snd sent me back to dermatologist, who decided I needed a MOH specialist, Dr Lim took two layers off shin and closed it back, after 3 weeks, back for stitches removal, area, very painful to touch, she doesn’t know why it is so inflamed told me to come back in 2 weeks, the 19th will be two weeks! In meantime I sent a message to my dermatologist asking if I should go somewhere else, she said Dr had spoken to her snd they think my reactive squamous is back in the same spot, I have been going thru this since last June 2020, I have called Mayo in Jacksonville, hoping I can get done answers

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Kscherz, that sounds very complex and painful. I, too, hope you get answers at Mayo Clinic. Is it possible that there is an underlying reason for the slow healing of the wound?

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@colleenyoung

Kscherz, that sounds very complex and painful. I, too, hope you get answers at Mayo Clinic. Is it possible that there is an underlying reason for the slow healing of the wound?

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I also bruise very easily, have been to hematologist, sometimes the bruise will open and get infected! My blood courts are good! 3 different areas are stumped, so thought it was time to find out, I am a petite woman 67 and very active, just ready to get it cured

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