Squamoid eccrine ductal carcinoma (SEDC): Anyone else?

Posted by thefishers5 @thefishers5, Mar 2 3:22pm

I have recently had Moh's surgery on my squamoid eccrine ductal carcinoma. It was miss diagnosed so has been there for 3-5 years at least. I am concerned about it having already spread. Is there anyone in this forum who is familiar with this type of cancer and/or has been treated for it that is willing to share their experience.

Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.

thefishers5 | @thefishers5 | Aug 26 7:19am

I too am being treated for this cancer.

Susan, Volunteer Mentor | @grammato3 | Aug 27 1:03pm

In reply to @lengl47 "@lips702 I was told I now have peroneal tendon fibrosis and complex regional pain syndrome. I’m..." + (show)

@lengl47: I'm so glad you had this checked out. That is exactly what I had been concerned about - CRPS, complex regional pain syndrome. It's been some time now, can you tell me more about the treatment you've been undergoing and if/how it has helped?

Susan, Volunteer Mentor | @grammato3 | Aug 27 1:05pm

In reply to @thefishers5 "I too am being treated for this cancer." + (show)

@thefishers5: It's good to hear from you again. Can you share how your SEDC is being treated?

lengl47 | @lengl47 | Aug 27 4:22pm

In reply to @grammato3 "@lengl47: I'm so glad you had this checked out. That is exactly what I had been..." + (show)

@grammato3 The only treatments I am receiving right now are physical therapy which is going fine. I still have issues sleeping at night. I am also receiving Hyperbaric oxygen therapy daily to heal my wound. I have done 20 treatments so far and it is helping close the wound but may need another 20 or more before it's completely healed up. I am still waiting to get into my pain management doctor after having my nerve test done. He is booked up until November. My nerve test proved that two nerves are "absent" I am on the cancellation list and hope to get in sooner. I am hopeful and anxious to see what other treatment he can provide me. Thank you for asking!

Susan, Volunteer Mentor | @grammato3 | Aug 27 6:03pm

In reply to @lengl47 "@grammato3 The only treatments I am receiving right now are physical therapy which is going fine...." + (show)

@lengl47: Those are definitely two good modalities to assist with improvement and the pain management provider can also have some beneficial interventions to help with the compromised nerves. It's good to be on the cancellation list, sometime it doesn't hurt to call in the mornings to see if there someone has cancelled an appointment so perhaps you could get in that day. Have you tried doing that?

lengl47 | @lengl47 | Aug 27 9:18pm

In reply to @grammato3 "@lengl47: Those are definitely two good modalities to assist with improvement and the pain management provider..." + (show)

@grammato3 that’s on my to do list in the morning. Thanks so much for your help and input. Much appreciated.

lengl47 | @lengl47 | Aug 28 2:14pm

In reply to @lengl47 "@grammato3 that’s on my to do list in the morning. Thanks so much for your help..." + (show)

@lengl47 woohoo, I got my Dr appt moved up to 9/15!!

Susan, Volunteer Mentor | @grammato3 | Aug 28 4:08pm

In reply to @lengl47 "@lengl47 woohoo, I got my Dr appt moved up to 9/15!!" + (show)

@lengl47: Your persistence paid off! Back in May when you wrote about the symptoms you were having, I'd asked some questions as I did have concerns about CRPS. You've probably learned more about it in the interim, but here is some information from Mayo that may help as you prepare for your visit: https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

Please let me know how that visit goes on the 15th.