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

Tanya85
Tanya85 Member Posts: 6
edited August 2013 in Rare and Other Cancers #1

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♥

 

 

 

 

Comments

  • Helpless_scared
    Helpless_scared Member Posts: 1
    #2
    Hi Tanya
    my Mum has been

    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.

  • CPN
    CPN Member Posts: 1
    #3
    Porocarcinoma

    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
    Tanya85 Member Posts: 6
    #4
    CPN said:

    Porocarcinoma

    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.

     

    thank you

    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?

  • Tanya85
    Tanya85 Member Posts: 6
    #5
    Helpless_scared said:

    Hi Tanya
    my Mum has been

    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.

    for helpless_scared

    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?

  • toolatehere
    toolatehere Member Posts: 2 Member
    #6
    Doctor?

    I know this is an old thread.  Looking for a doctor that has experience with porocarcinoma for my husband.  Can anyone help?

     

  • Bianca Sa
    Bianca Sa Member Posts: 2 Member
    #7
    toolatehere said:

    Doctor?

    I know this is an old thread.  Looking for a doctor that has experience with porocarcinoma for my husband.  Can anyone help?

     

    my surgeon did Moh’s surgery

    my surgeon did Moh’s surgery for my Porocarcinoma 10 years ago. Your dermatologist should be able to refer you to reputable qualified specialist in your area.  There are many talented surgeons around the country.   The treatment response varies with the disease stages, but know this is a bearable/beatable  form of cancer.  Stay off the general internet; research papers and studies only focus on the extraordinary cases.  Those are the papers you find on-line.  The rest of us get lost in the shuffle.  When you are diagnosed with a ‘rare agressive’ Form of anything it is difficult to realize that you still only see the extra amazing cases in the literature.  

    Hopefully you already have a surgeon on your radar.  prayers from the south, while you navigate this path. 

  • toolatehere
    toolatehere Member Posts: 2 Member
    #8
    Bianca Sa said:

    my surgeon did Moh’s surgery

    my surgeon did Moh’s surgery for my Porocarcinoma 10 years ago. Your dermatologist should be able to refer you to reputable qualified specialist in your area.  There are many talented surgeons around the country.   The treatment response varies with the disease stages, but know this is a bearable/beatable  form of cancer.  Stay off the general internet; research papers and studies only focus on the extraordinary cases.  Those are the papers you find on-line.  The rest of us get lost in the shuffle.  When you are diagnosed with a ‘rare agressive’ Form of anything it is difficult to realize that you still only see the extra amazing cases in the literature.  

    Hopefully you already have a surgeon on your radar.  prayers from the south, while you navigate this path. 

    Thanks--my husband passed at

    Thanks--my husband passed at the end of July.   

    Just leaving this here for anyone that searches in the future--the history of his progression.

    Jan 2020-growth on leg, regular surgeon took biopsy in office, never reported results

    May 2020-growth returned sent to dermatologist for follow up

    June 2020-dermatologist got biopsy results--misdiagnosed as metastatic colon cancer sent to oncologist at local NCI gastro/melanoma surgical oncologist 

    July 2020-NCI center biopsied growth diagnosed Eccrine Porocarcinoma, possible lymph node involvement, recommended Keytruda before surgery

    September 2020-Keytruda didn't work, surgically remove growth--which has spread to lymph nodes, unable to get clear margins

    November 2020-after wound healing issues started Yervoy-did 2 treatments--cancer progressed to lymph nodes in stomach area and lungs

    January 2021-started Taxol 

    March 2021-scans show mixed results from Taxol added in Keytruda

    May 2021-progression to spine added in carboplatin to the Taxol/Keytruda, started radiation to spine

    July 1 2021-progression-no other treatment options

     

    Things I have now learned, the NCI Surgeon had only treated 1 other case of Porocarcinoma, Oncologist-2 other cases of Porocarcinoma.  After progression, when asked they never would give an accurate plan.  

    Apparently, if caught early, Moh's surgery has a very high success rate.  There is no evidence neoadjuvant treatment of this disease is successful.  There is molecular testing that can be done to gauge success rate -- ask for it.  

    It is up to the patient to seek out information on doctor's experience and second opinions.  

     

     

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