ECCRINE POROCARCINOMA

Hi Wildcat sam 

I haven't had eccrine porocarcinoma, although I did have a basal cell carcinoma (rodent ulcer) removed from my chest a few years ago, but I noticed that you hadn't had any replies to your post yet. Resonding to you will 'bump' it back to the top of the discussion list again.

I've done a search in the group to see if anyone else has posted about eccrine porocarcinoma but only found this one thread I'm afraid. Unfortunately, the original poster has left the community but your could have a read of the thread to see if it helps at all.

Hi Larchbrook, I left a message on the other link about eccrine porocarcinoma just incase they become members again  Thank you for finding out that thread 

Hi Latchbrook. I'm worried about the suspected rodent ulcer on my nose as that is where I got it cut out from before. I'm going to phone my cancer nurse on Monday for a check up. My nose is sore to touch on the area of surgery before and a small lump has begun to show. On the other side of my nose there's a swelling under the skin. 

Yes, it's a good idea to get checked out. let me know how you get on.

Hi I have porocarcinoma diagnosed a year ago, had a surgery to remove it and the lympho nodes from one side. Then a 30 sessions of radiotherapy.

Totally understand you and feel you pain of how hard it is to find information about it. 

I will also need PET-CT in the next 2 years each 3-4 months, similar to you.

Wishing you a lot of health and mental strength!!

Like a very few people on this site or anywhere else I have a diagnosis of porocarcinoma (apparently according to one paper I read the WHO has now officially dropped the "eccrine" part of the name). It was removed a year ago, but has now either recurred or there is a benign poroma only a couple of inches from the site of the original tumour. The chances of that are even rarer than the chances of recurrent cancer, so I am sticking with that until the histology department make further progress. The treatment is the same anyway - cut it out.

As Wildcat Sam has said, there is very little knowledge of this disease anywhere, and very little useful support information. You are basically on your own when you get it. Over eleven years now I have had seven senior clinicians of various types look at these two lesions and literally say "It's just a wart". There is no protocol for treatment, so one recent paper, a review of services at centres which are regarded as centres of excellence, found no commonality of approach. Porocarcinomas can easily metastasize, but there is no agreement on whether patients should have a scan or not. I was refused one, one other poster here with porocarcinoma had one. There is no agreement for treatment of recurrence or mets. If you have a plantar lesion you might well need orthotic help, but there is little knowledge or help to be gained there - one NHS and one private orthotist both made me completely useless inserts which i found really painful. By chance I met another orthotist who could help and gave me an insert which was literally the opposite of what the other two had made, and it made a massive difference. (I will give contact details to anyone who needs them.)

So, the little we can do is for the occasional patients with this to swap stories here, or FB if you use it (I don't.) 

Hi, sorry to hear you had the same cancer, can I ask what country your from as im in Scotland and don't get any treatments apart from the consultant checking my sweat glands with her hand feeling for lumps 

Thanks for the write up.  Yes no information no scans etc. Im in Scotland so it's the nhs. Each day  is another day I survived.  That's the way im looking and thinking now. Take care