Squamoid eccrine ductal carcinoma (SEDC): Anyone else?

@thefishers5: thank you for coming to Mayo Clinic Connect in search of answers for this unusual skin carcinoma. I personally had never heard of this condition and upon doing some research I did see that due to it being so rare (less than 1% of all skin cancers) it often is misdiagnosed. I'm so sorry you had to encounter this but appreciate your coming here to share this experience as others may have gone through the same thing and can provide some information for you. Additionally, you may be a point of reference for others who may encounter this themselves.

Wishing you all the best. May I ask what is the next step for you in treatment and ongoing care?

@grammato3 I was diagnosed in June 2025 with this rare skin cancer, squamoid eccrine ductal carcinoma. I have Moh's Surgery in June 2025 and I was told it was stage 3. My oncologist recommended 29 rounds of radiation. My wound had to heal before starting the radiation. My radiation was daily for 6 weeks. My last round of radiation was on November 11, 2025. Since then, I have horrible pain in my ankle/ foot to this day. I am currently seeking a 2nd opinion on why my pain is ongoing. My oncologist said it was from scar tissue but it is getting worse. My cancer was on the outside of my left leg right above my ankle. I am reaching out in hope that others can also shed some light on their experience as well. I have been extremely frustrated with lack of concern for the pain I am experiencing. I have also been told that this pain may never go away, and this pain is 24/7.

@lengl47: I wanted to give you a quick reply as I saw your comment as I'm preparing for vacation . I'm so sorry to hear you're continuing to experience this type of pain after having undergone such a lenghty course to get to your diagnosis. I wonder if your providers indicated that the treatment involved proximity to nerves in the area? If these were impacted, that may be contribuing to your ongoing healing as the nerves regenerate or to the compaints you're having.

May I ask if you're experiencing any changes in skin temperature, sensation, color, hair/nail growth or localized swelling or stiffness around your ankle or foot? Have you asked the oncologist if you could seek the opinion of a physiatrist (one who specializes in physical medicine and rehab) or interventional pain management specialist?

@grammato3 I don’t recall being told that there might be nerve damage. However, I’m currently being treated for neuropathy. I’m 8 weeks in of a 12 week treatment plan. The oncologist never mentioned referring me to anyone but my palliative care Dr recommended that I see a foot and ankle specialist. I’m looking forward to my appt next Monday. I’m sleeping about 4 hours a night while still working. I’m so exhausted! I do have swelling in my ankle. No issues with losing hair or any nail issues. The treated area is extremely sensitive to touch and still very red and discolored from radiation.

@lengl47
Good morning 🌞
Has wound care been suggested to you?
I have had several open wounds with pain from Mohs and was recommended to Wound Care by Mayo, they have been lifesavers for me!
I have also had a lot of nerve damage/pain from my Mohs and open wounds, wound care is my go to.

@lengl47 Please let us know what your doctor says next Monday, okay? Did your palliative care doctor say why the recommend that particular specialist?

Dang it about sleep. Are you able to take Tylenol or Benadryl to relax you enough to get some sleep?
Ginger

My palliative care Dr just thought I should have a 2nd opinion and I agreed because of my ongoing pain. I’ll keep you posted con what my Dr says tomorrow. Benadryl and Tylenol won’t touch the pain at all.

@lips702 what type of treatment is involved with your wound care? They have never offered any type of treatment to me for healing.

@lengl47
Wound Care is simple treatment to assist in your healing!
I have open wounds on my legs from Mohs surgeries.
Wound care takes measurements of the wound, the doctor scrapes the wound and takes away old tissue, this allows the new skin to heal on the wound, they give great instruction to follow for that week of care at home, follow up weekly with DR
Many types of medical healing sources. I would never have known about until Wound Care until Mayo suggested it.
Hospitals here in Las Vegas have an association with Wound Care facilities
Let me know if you decide to go that route, you won't be sorry! Best wishes

@lips702 I was told I now have peroneal tendon fibrosis and complex regional pain syndrome. I’m being sent for PT and to a wound care Dr and an Interventional Medicine Dr for treatments. One appt is this week and looking forward to seeing what type of treatment I’ll be getting.