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PLEASE READ & HELP US!! malignant Eccrine Porocarcinoma (tumor form)

Tanya85's picture
Tanya85
Posts: 6
Joined: Aug 2013

On June 21st 2013,My 31 year old husband was recently diagnosed with a very rare, most aggressive form of cancer..Malignant Eccrine Porocarcinoma. Apparently it started in his sweat glands. There have been less than 300 cases ever reported in the world and unfortunately they don't know a lot about it. He went from having 1 family doctor to adding about 5 specialist and everything is happening so fast. The one thing we do keep hearing is that there is a poor success rate and essentially no cure. A couple of docs even told us that having melanoma or breast cancer would be better than having this type of cancer. Everything I've researched has said that even if it is removed it usually comes back and then becomes metastatic and fatal. My heart grows heavier every day more and more just researching. I need comfort, we need comfort. I need to find someone else who has had this cancer to compare cases with..I figured this may be a good place to start. Please share our story and help us find someone. God bless you all♥

 

 

 

 

Helpless_scared
Posts: 1
Joined: Sep 2013

Hi Tanya

my Mum has been diagnosed with the same from of cancer. She is 74yrs old and it startefwith a cyst in her keg. Now we've been told its spread to her skin and lungs. She had fluid and blood clots collecting in her lungs and the doctors spentv10 days draining it. Like you, we, ve been told their is no cure or treatment for it here in the UK. I'm at a loss and have no idea what to do. Allmtheynkeep giving her is morphine. Then leg is going septic and the wound is very swollen. I am so sorry that I haven't got anything positiveti offer but you are in my thoughts. May suggestion is to keep searching the Internet hopefully there will be a form if treatment somewhere.

Tanya85's picture
Tanya85
Posts: 6
Joined: Aug 2013

I am so sorry helpless_scared. My heart goes out to you and to your family. I completely understand the emotions...I am so sorry that your mom is going through this. I have been searching the internet immensly and have came up with a few cases that may help but nothing certain. Do you mind sending me pics of your moms first sight, before it was removed?

CPN
Posts: 1
Joined: Oct 2013

Hi Tanya,

So sorry to hear about your husband's diagnosis. 

Can you tell me where his cancer is located and what treatments/surgery have been done or are planned.

Will be praying for him.

 

Tanya85's picture
Tanya85
Posts: 6
Joined: Aug 2013

Yes his cancer was located in his right leg. It has been surgically removed and future treatments of chemo and or radiation have been talked about but have not been determined just yet. I have been researching every where and still i keep coming up empty handed. Do you have any help to offer?

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