Skin squamous cell carcinoma (recurring)

Posted by annabach @annabach, Jul 2, 2023

Anyone else battled on-going outbreaks of squamous cell cancers? I have had dozens on my legs in the last two years. One required a swim graft. Three were MOHS procedures. A dozen were excisions with sutures. The rest were small and frozen. I just had an aggressive one removed the had quickly extended all the way to muscle. Who did you see? Are there other treatment options besides continued surgeries? I have at least six more that have popped up in the last week. It feels as though this will never end!

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Profile picture for jodes1984 @jodes1984

@grammato3 Thank you so much for your kind words. I haven't had a biopsy yet, however the GP was pretty certain. I am so so scared, can't eat, sleep, getting moody with my kids. I feel like I'm going to die as I feel it's spreading rapidly. Still waiting for the 2 week wait via our UK NHS.

Do you mind me asking, how did your SCC look? Mine is huge, ulcerated etc.

The waiting is awful, and it feels so lonely x

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Profile picture for jodes1984 @jodes1984

@gingerw Thank you so much for your reply, how are you feeling now? I'm so pleased you have a Dr that listens and takes you seriously.

If you don't mind me asking, how did they treat your aggressive SCC? X

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@jodes1984 My doctor knows I am not one to "cry wolf". All my specialists understand that there is research done on my part, and making sure things get addressed. This is where being your own best advocate is so helpful.

The one spot I am thinking about, had suddenly appeared on the back of my arm. Because of the history of melanoma and other skin cancers, I figured after a week or two, a call was in order. They got me in right away, took a closer look, and biopsied that spot. We set the MOHS procedures shortly thereafter, it was 6 stitches long for the incision. There are many scars on my face, neck, hands, arms, and upper torso, for both basal cell and squamous cell cancers. As @grammato3 has mentioned, there are several types of those cancers, and I have experienced them! Some were addressed with liquid nitrogen, many were MOHS.
Ginger

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Profile picture for jodes1984 @jodes1984

@lips702 Thank you, I've had it for 2 months, back and forth to the GP, I'm worried it's spread as no treatment just yet, still waiting the 2 week wait.

It looks really nasty, swollen, risen, black centre, ulcerated, I'm so conscious.

How do you feel day to day? I feel like I'm going to die, I'm so scared.

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@jodes1984, 2 weeks have passed now. Have you had your follow-up appointment? What did you find out? How are you doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@jodes1984, 2 weeks have passed now. Have you had your follow-up appointment? What did you find out? How are you doing?

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@colleenyoung Hi, I had to pay privately as I have only got an appointment letter through for the end of this month, so was getting worried xx Waiting another couple of weeks now for biopsy. X

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Profile picture for Ginger, Volunteer Mentor @gingerw

@jodes1984 My doctor knows I am not one to "cry wolf". All my specialists understand that there is research done on my part, and making sure things get addressed. This is where being your own best advocate is so helpful.

The one spot I am thinking about, had suddenly appeared on the back of my arm. Because of the history of melanoma and other skin cancers, I figured after a week or two, a call was in order. They got me in right away, took a closer look, and biopsied that spot. We set the MOHS procedures shortly thereafter, it was 6 stitches long for the incision. There are many scars on my face, neck, hands, arms, and upper torso, for both basal cell and squamous cell cancers. As @grammato3 has mentioned, there are several types of those cancers, and I have experienced them! Some were addressed with liquid nitrogen, many were MOHS.
Ginger

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@gingerw I'm so sorry to hear that you have experienced them all, how did you cope mentally? I hope you're in the mend from them all?

I had my results today, it was a high risk SCC, so am having a scan tomorrow as my lymph nodes are up, so they want to see if it has spread to near y lymph nodes or organs. I'm so scared.

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Profile picture for jodes1984 @jodes1984

@gingerw I'm so sorry to hear that you have experienced them all, how did you cope mentally? I hope you're in the mend from them all?

I had my results today, it was a high risk SCC, so am having a scan tomorrow as my lymph nodes are up, so they want to see if it has spread to near y lymph nodes or organs. I'm so scared.

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@jodes1984: I’m so sorry to hear this was confirmed as what your original provider suspected but thank goodness they sent you for this follow up care.

Like @gingerw, I’ve also had all three types of skin cancers and had also undergone testing of my lymph nodes as well as several and ongoing PET scans so I well understand the “scanxiety” as many of us refer to these procedures. I’ve found this article which I’ve shared in the past, let me know if you find some of the suggestions helpful: https://melanoma.org.au/news/coping-with-scanxiety/

Please keep up with the updates when you can.

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Profile picture for jodes1984 @jodes1984

@gingerw I'm so sorry to hear that you have experienced them all, how did you cope mentally? I hope you're in the mend from them all?

I had my results today, it was a high risk SCC, so am having a scan tomorrow as my lymph nodes are up, so they want to see if it has spread to near y lymph nodes or organs. I'm so scared.

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@jodes1984 I accept my maladies. I advocate for myself the best ways possible, for the health conditions present at any given time. This gives me a sense of having sayso in decisions. Remembering that my medical team also includes me!

How was your scan, and the results? Thinking about you today...
Ginger

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Profile picture for mabfp3 @mabfp3

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

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@mabfp3 did you have a biopsy that showed SCC. Wondering how it was diagnosed as SCC but later found not to be. Was this at MGH Derm Surgery or regular Dermatology. I had a recent experience so am interested in this further. Thank you.

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Profile picture for moorjan3 @moorjan3

@mabfp3 did you have a biopsy that showed SCC. Wondering how it was diagnosed as SCC but later found not to be. Was this at MGH Derm Surgery or regular Dermatology. I had a recent experience so am interested in this further. Thank you.

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@moorjan3 Hi! I just went back to search for that post from me and it was in 2023! I need to correct myself a bit on a “diagnosis” from the NP at my local dermatologist. She suggested a biopsy to me on my bottom lip because she felt that it was a good possibility of SCC. She told me that the biopsy would be painful on the lip and would interfere with eating. So, I decided to go into Boston to get a second opinion. As soon as the doctor looked at it, she told me that it was a precancer and the freezing would take care of it, which it did. I have had quite a few basal and squamous cell cancers over my lifetime, so I just needed that second opinion to be sure. The second opinion was with an MGH dermatologist. Good luck to you. I hope this helps.

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Are you still getting lesions on your legs?
I am using a new Immunotherapy called "Unloxcyt".
I have had 5 infusions and the drug is working!

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