Sweat gland cancer?

leeranger
leeranger Member Posts: 5
in Rare and Other Cancers #1
I have been diagnosed with low grade malignant acrospiroma, a rare tumor of the sweat gland. It started out as a bump under the surface of the skin on my right middle finger, and the docs thought it was a cyst. After having it removed, it was sent off to three different pathologists nationwide to get a diagnosis. One said it was benign, one said it was porocarcinoma, and the one we went with said acrospiroma.

Last week I had a wide excision of the finger and a sentinel node biopsy that resulted in the removal of 5 nodes from my arm pit. The nodes came back clear but the finger shows that the cancer is still present. My doctor has now advised that we amputate. I am so shocked that is has come to this! My doctor can't guarantee that I will be cancer free after this and I think that is the scariest part! I'd be happy to lose my finger if I get to keep my life, but unfortunately this cancer is so rare, no one can tell me much. :(

Does anyone have any experience with this type of cancer?

Comments

  • BEBS
    BEBS Member Posts: 17
    #2
    Wishing you well!
    Hi leeranger,

    I am so sorry to hear of your diagnosis. However, it is great that nothing was found in the lymph nodes.

    Since it started on the finger, it's somewhat surprising it wasn't diagnosed as Aggressive Digital Papillary Adenocarcinoma (although I suppose other sweat gland cancers could originate on the fingers).

    My own diagnosis (May 2011) started as a bump on my left index finger - like you, they originally thought it was a cyst. After the excision, the local lab could only identify the sweat gland piece and sent to an outside pathologist who diagnosed ADPCa. I also had a SNLB with 5 nodes removed - like you, all clean. From everything I've read, this isn't a guarantee, but is a good sign (the last study on ADPCa showed of 6 that metastisized, 5 were first found in the lymph nodes).

    I chose the amputation (half finger versus a Ray, which some have done) over a wide excision - I didn't want to take any chances. I now get an annual CT to check for lung nodules (the most likely path after the lymph nodes). I will get more nervous with each one, as 3-4 years out seems to be when things popped up in the study.

    Even though there is chance it will metastisize, I keep in mind the most likely scenario seems that it won't. Still, it's tough living life with both time frames in mind - not wasting today, but also preparing for a long future!

    Please keep all of us posted on your situation. Since sweat gland cancers are so rare, it's important we all keep communicating - I know this site was extremely helpful for me.

    Warm regards,

    BEBS
  • bigwheel21
    bigwheel21 Member Posts: 1
    #3
    daughter with cylindroma rare sweat gland tumor
    My daughter was diagnosed 2 years ago with sweat gland cancer on her upper back had 3 incisions. It looked like an simple cyst so it shocked us all when it came back cylindroma. We were told by an oncologist that it would not spread and he would not do any scan of her body at that time. She began 6 months ago losing weight and having loss of appetite. This time she was referred to another oncologist who has diagnosed her sweat gland cancer has spread to her liver, lung and bones she is only 24. The cancer center has never had a patient with a sweat gland cancer. They are trying chemo Taxol/carboplatin after 2 treatment tumors seem to be responding. Does anyone know other patients with sweat gland cancers and different treatment options
  • SMF1402
    SMF1402 Member Posts: 1
    #4
    bigwheel21 said:

    daughter with cylindroma rare sweat gland tumor
    My daughter was diagnosed 2 years ago with sweat gland cancer on her upper back had 3 incisions. It looked like an simple cyst so it shocked us all when it came back cylindroma. We were told by an oncologist that it would not spread and he would not do any scan of her body at that time. She began 6 months ago losing weight and having loss of appetite. This time she was referred to another oncologist who has diagnosed her sweat gland cancer has spread to her liver, lung and bones she is only 24. The cancer center has never had a patient with a sweat gland cancer. They are trying chemo Taxol/carboplatin after 2 treatment tumors seem to be responding. Does anyone know other patients with sweat gland cancers and different treatment options

    sweat gland cancer, in right upper leg (adnexal carcinoma etc)
    Greetings to All,

    I am sorry to hear about everyone’s sweat gland cancer diagnosis.

    In mid April, 2012 I was diagnosed with sweat gland cancer, in my right upper leg (adnexal carcinoma with eccrine feature, etc). I was told that this was also a very rare and slow growing tumor. I wasn’t sure what to think, but have done a lot of research since then.

    In mid May was the bulk of the tumor removed. This was done in my dermatologist’s office who also does plastic surgeries. Everything went great, but the lab results showed that there were still tumor tissues in my leg.

    Due to the excellent contacts of my dermatologist doctors, they referred my to their colleagues who are experts in the field of oncology and Moh’s surgery.

    Two weeks ago I had a Moh’s Surgery in a hospital. The surgeons were excellent and told me that they were able to remove all the tumor tissues. God Bless! The surgery took littler over six hours and I had to have a skin graft. Currently I am still recovering from the surgery and hoping that the skin graft took (which I will know this coming Friday).


    Moh’s Surgery was the best option for my case.

    Mohs micrographic surgery offers the highest cure rate: up to 99% with the smallest scars, according to the American College of Mohs Micrographic Surgery. Plus, this state-of-the art method of cancer removal offers the lowest possibility of regrowth and less risk of scarring than with traditional methods. With this highly specialized procedure, the skin cancer tumor is accurately and precisely removed down to its roots, giving little or no chance to grow back.

    I also started on a very well known body detoxify therapy, which will also help to activate my own bodies healing process and also help rebuild/strengthen my body through supplying it with proper/better nutrition.


    Wishing you a speedy recovery,
    SMF
  • Tanya85
    Tanya85 Member Posts: 6
    #5
    my husband

    My husbands story and your story sound identical. His biopsy got sent off to 3 different doctors. he was diagnosed with Eccrine POROCARCINOMA malignant tumor form. It's also a very rare type of cancer. good luck to you

  • jaggez
    jaggez Member Posts: 1
    #6
    sweat gland cancer

    Hi leeranger,

    I went to my doctors on 16th sept 2013 with a pain in my heel but I must admit I had a plaster over a lump on the top of my foot that had been there for months but steadily got worse. I didn't mention it until my doctor did and 3 days later it was removed under the insistence of the same doctor that it would be nothing, 2 weeks later. stitches out and I'm told 'cell changes, sorry I didn't expect this;which is fine with me.

    I went to the dermatologist 2 weeks after that who said it was cancer of the sweat glands???? hang on a minute??!!! SO, he might want to excise the area more if not then a check up every 3 months....so..I get an appointment through saturday morning for wed 30th Oct. So does that mean I have cancer? do I worry?/ I have been told to keep my eye on any unusual chages which are apparent, which are now on my back and left arm.how do we know what is or isn't???

    I feel exactly the same as you, how do we cope if we simply do not know?? 

    Thinking of you xxx

     

  • suse1023
    suse1023 Member Posts: 1
    #7
    jaggez said:

    sweat gland cancer

    Hi leeranger,

    I went to my doctors on 16th sept 2013 with a pain in my heel but I must admit I had a plaster over a lump on the top of my foot that had been there for months but steadily got worse. I didn't mention it until my doctor did and 3 days later it was removed under the insistence of the same doctor that it would be nothing, 2 weeks later. stitches out and I'm told 'cell changes, sorry I didn't expect this;which is fine with me.

    I went to the dermatologist 2 weeks after that who said it was cancer of the sweat glands???? hang on a minute??!!! SO, he might want to excise the area more if not then a check up every 3 months....so..I get an appointment through saturday morning for wed 30th Oct. So does that mean I have cancer? do I worry?/ I have been told to keep my eye on any unusual chages which are apparent, which are now on my back and left arm.how do we know what is or isn't???

    I feel exactly the same as you, how do we cope if we simply do not know?? 

    Thinking of you xxx

     

    i really wish i wasnt a

    i really wish i wasnt a member of this club but i'm afraid i am.

    mine was first called apocrine adenocarcinoma--a tiny bump on my scalp which was excised in 2006.

    it metastasised this time last year to three lymph nodes under my left ear and they were exised in june.

    i just finished a few months of chemo and radiation and am in recovery phase now.

    the doctors at dana farber now call it a neuro endocrine cancer and told me their best educated guess was to give me up to 50% chance of a cure with the meds and radiation.

    however i was unable to complete the four rounds they wanted as i was allergic to the etopocide. i got two rounds in and all of the 32 radiation sessions. 

    so the 50% odds they gave me were then thrown out the window and i am anxious about it big time.

     

    i am still nauseas all of the time--if only mm was legal around here.

     

  • leeranger
    leeranger Member Posts: 5
    #8
    BEBS said:

    Wishing you well!
    Hi leeranger,

    I am so sorry to hear of your diagnosis. However, it is great that nothing was found in the lymph nodes.

    Since it started on the finger, it's somewhat surprising it wasn't diagnosed as Aggressive Digital Papillary Adenocarcinoma (although I suppose other sweat gland cancers could originate on the fingers).

    My own diagnosis (May 2011) started as a bump on my left index finger - like you, they originally thought it was a cyst. After the excision, the local lab could only identify the sweat gland piece and sent to an outside pathologist who diagnosed ADPCa. I also had a SNLB with 5 nodes removed - like you, all clean. From everything I've read, this isn't a guarantee, but is a good sign (the last study on ADPCa showed of 6 that metastisized, 5 were first found in the lymph nodes).

    I chose the amputation (half finger versus a Ray, which some have done) over a wide excision - I didn't want to take any chances. I now get an annual CT to check for lung nodules (the most likely path after the lymph nodes). I will get more nervous with each one, as 3-4 years out seems to be when things popped up in the study.

    Even though there is chance it will metastisize, I keep in mind the most likely scenario seems that it won't. Still, it's tough living life with both time frames in mind - not wasting today, but also preparing for a long future!

    Please keep all of us posted on your situation. Since sweat gland cancers are so rare, it's important we all keep communicating - I know this site was extremely helpful for me.

    Warm regards,

    BEBS

    Hi all. I was the original

    Hi all. I was the original poster and just stumbled upon my own thread while googling. I had a ray amputation shortly after my original post and have been cancer free for over a year and a half. My hand has been aching lately and I have a follow up with the oncologist soon so I decided to see if there was any new information about my specific type of cancer. I'm saddened to see you guys have also gone or are going through sweat gland cancer. I hope you all will update us on your current condition. Take care. 

  • mandakate13
    mandakate13 Member Posts: 1
    #9
    Sweat Gland Cancer

    Hello all! I was just diognosed with cancer of the sweat glands.  I am not 100% sure what kind.  I am 27 years old and have a growth on my foot for five years. It never hurt so I never thought anything of it until I went to the emergency room one night for something totally different and the doctor advised me to get it looked at.  I went to a foot specialist, had a MRI and they said it was a cyst so I had it removed.  When the pathology results came in the podiatrist called me and said that it was a tumor and it was very rare.  I just had my first visit with an oncologist Friday May 16, 2014.  I had a CT scan of my chest, abdomin, and pelvic regions.  I will go in on monday to see the results.  I read one post on here from a lady that said she had bumps on her scalp,  welp I do too.  I'm so scared.  I don't want it to spread.  I can't believe that I left this thing on my foot for so long.  The oncologist said that the next step is to have part of my foot amputated. 

    I know that these posts on here are older, but I pray that everyone is doing well and is still truckin'.  :)

  • mskandi1989
    mskandi1989 Member Posts: 5
    #10
    mandakate13 said:

    Sweat Gland Cancer

    Hello all! I was just diognosed with cancer of the sweat glands.  I am not 100% sure what kind.  I am 27 years old and have a growth on my foot for five years. It never hurt so I never thought anything of it until I went to the emergency room one night for something totally different and the doctor advised me to get it looked at.  I went to a foot specialist, had a MRI and they said it was a cyst so I had it removed.  When the pathology results came in the podiatrist called me and said that it was a tumor and it was very rare.  I just had my first visit with an oncologist Friday May 16, 2014.  I had a CT scan of my chest, abdomin, and pelvic regions.  I will go in on monday to see the results.  I read one post on here from a lady that said she had bumps on her scalp,  welp I do too.  I'm so scared.  I don't want it to spread.  I can't believe that I left this thing on my foot for so long.  The oncologist said that the next step is to have part of my foot amputated. 

    I know that these posts on here are older, but I pray that everyone is doing well and is still truckin'.  :)

    This story sounds identical

    This story sounds identical to my cousin's story on which I am doing research. He has a knot on his foot for five years and was told it was gout. Then after it got so bad he could not walk, he had an emergency room doctor look at it. They did a biopsy and found out it was a rare cancer. He had to undergo surgery and have his leg cut to his knee. It has spread that far, during the time of the misdiagnosises. He's been to some great hospitals in Texas, Lousiana, and Oklahoma. With this cancer being so rare, though, no one seems to know what else to do. They have tried different chemos and radiations for the past three years and it has spreaded into his lungs, liver and up his leg. The masses keep growing and the last doctor at the cancer center of america said there was nothing left to do for this type of cancer, to go home and live life. I mean this is a hard pill to swallow. He is my family and I want to do what I can to find a way to help him get rid of this. He is married to my cousin and they have six children. If any one knows any treatment that may help him, I would love to know. Thank you all and I wish nothing but the best.

  • mskandi1989
    mskandi1989 Member Posts: 5
    #11
    Tanya85 said:

    my husband

    My husbands story and your story sound identical. His biopsy got sent off to 3 different doctors. he was diagnosed with Eccrine POROCARCINOMA malignant tumor form. It's also a very rare type of cancer. good luck to you

    What kind of treatments has

    What kind of treatments has your husband have? And has it helped?

  • mskandi1989
    mskandi1989 Member Posts: 5
    #12
    jaggez said:

    sweat gland cancer

    Hi leeranger,

    I went to my doctors on 16th sept 2013 with a pain in my heel but I must admit I had a plaster over a lump on the top of my foot that had been there for months but steadily got worse. I didn't mention it until my doctor did and 3 days later it was removed under the insistence of the same doctor that it would be nothing, 2 weeks later. stitches out and I'm told 'cell changes, sorry I didn't expect this;which is fine with me.

    I went to the dermatologist 2 weeks after that who said it was cancer of the sweat glands???? hang on a minute??!!! SO, he might want to excise the area more if not then a check up every 3 months....so..I get an appointment through saturday morning for wed 30th Oct. So does that mean I have cancer? do I worry?/ I have been told to keep my eye on any unusual chages which are apparent, which are now on my back and left arm.how do we know what is or isn't???

    I feel exactly the same as you, how do we cope if we simply do not know?? 

    Thinking of you xxx

     

    I'm so sorry to hear this

    I'm so sorry to hear this about you. I was wondering what kind of treatments you have had because my cousin has a very rare cancer called adnexal carcinoma and this is the second name they decided to call it. It also has a very long name. They have amputated his leg and did many different chemos and radiation and he is still not doing well. I just would like to know if you have had any success. Thank you.

  • mskandi1989
    mskandi1989 Member Posts: 5
    #13
    mandakate13 said:

    Sweat Gland Cancer

    Hello all! I was just diognosed with cancer of the sweat glands.  I am not 100% sure what kind.  I am 27 years old and have a growth on my foot for five years. It never hurt so I never thought anything of it until I went to the emergency room one night for something totally different and the doctor advised me to get it looked at.  I went to a foot specialist, had a MRI and they said it was a cyst so I had it removed.  When the pathology results came in the podiatrist called me and said that it was a tumor and it was very rare.  I just had my first visit with an oncologist Friday May 16, 2014.  I had a CT scan of my chest, abdomin, and pelvic regions.  I will go in on monday to see the results.  I read one post on here from a lady that said she had bumps on her scalp,  welp I do too.  I'm so scared.  I don't want it to spread.  I can't believe that I left this thing on my foot for so long.  The oncologist said that the next step is to have part of my foot amputated. 

    I know that these posts on here are older, but I pray that everyone is doing well and is still truckin'.  :)

    Hi, I'm so sorry to hear

    Hi, I'm so sorry to hear this. My cousin has a very rare cancer in the sweat glands and he had the same thing, a knot on his foot for five years before it was diagnosed with cancer. He has been through many treatments, his leg amputated, and chemo and radiation and now the news is worse. There is nothing left for the cancer center to do. I would like to know if you have had any luck with treatments and maybe something helped shrink the tumors. Thank you for your time.

  • Chrissy28
    Chrissy28 Member Posts: 2
    #14
    Digital pappilary adenocarcinoma

    in February I had a lump on my thumb knuckle removed. Dr thought it was benign. Pathology reports come back stating it's aggresive digoral pappilary adenocarcinoma. I am 22 years old and was not expecting this especially being so rare like you state. Right away I went for chest scans and hand mrI and was sent to memorial Sloan Kettering where they did a wide excision to make sure surrounding tissue is clear and also a lymph node biopsy from armpit. Both came back clear but I am now afraid for my future. It's my thumb so I'm really afraid of amputation etc. It was never mentioned but I'm afraid it will come back. 

  • KrisW
    KrisW Member Posts: 1
    #15
    jaggez said:

    sweat gland cancer

    Hi leeranger,

    I went to my doctors on 16th sept 2013 with a pain in my heel but I must admit I had a plaster over a lump on the top of my foot that had been there for months but steadily got worse. I didn't mention it until my doctor did and 3 days later it was removed under the insistence of the same doctor that it would be nothing, 2 weeks later. stitches out and I'm told 'cell changes, sorry I didn't expect this;which is fine with me.

    I went to the dermatologist 2 weeks after that who said it was cancer of the sweat glands???? hang on a minute??!!! SO, he might want to excise the area more if not then a check up every 3 months....so..I get an appointment through saturday morning for wed 30th Oct. So does that mean I have cancer? do I worry?/ I have been told to keep my eye on any unusual chages which are apparent, which are now on my back and left arm.how do we know what is or isn't???

    I feel exactly the same as you, how do we cope if we simply do not know?? 

    Thinking of you xxx

     

    Eccrine Carcinoma

    i just found this site and I too was diagnosed in Jan 2015 with the rare cancer. Mine appeared a year ago on my left forearm. My dr told me it was nothing for a year. I decided to have it removed thinking it should not be there!  Long story short and many weeks of not knowing what it was, the diagnosis came in and a wide excision was done.  6 weeks later I had 12 lymph nodes removed/tested and all were supposedly clear but they also tell you single cells can be missed.

    i just finished 25 radiation treatments and the area/scar looks awful!  I go tomorrow for my 3mo followup with my team of specialists in Boston who specialize in this rare cancer....having some other issues that I hope are un-related. My doctors tell me I will be fine but everything I read online says different. I just don't want to be afraid that every pimple or bump that appears suddenly is a reaoccurance. 

    Uggghhh, so scary!  Just glad to know that I am not alone ....

    hoping everyone is doing well!!!!!

  • leeranger
    leeranger Member Posts: 5
    #16
    Chrissy28 said:

    Digital pappilary adenocarcinoma

    in February I had a lump on my thumb knuckle removed. Dr thought it was benign. Pathology reports come back stating it's aggresive digoral pappilary adenocarcinoma. I am 22 years old and was not expecting this especially being so rare like you state. Right away I went for chest scans and hand mrI and was sent to memorial Sloan Kettering where they did a wide excision to make sure surrounding tissue is clear and also a lymph node biopsy from armpit. Both came back clear but I am now afraid for my future. It's my thumb so I'm really afraid of amputation etc. It was never mentioned but I'm afraid it will come back. 

    Wow!

    Original poster here and it has been 3 years since my ray amputation. Occasionally I google the type of cancer I had to see if there have been any new developments over the years. I am so sad to see so many responses from you all who are going through something similar. As far as I know, I am still cancer free but I have to admit, it has been awhile since I've been checked. I am supposed to have blood work done every 6 months and after reading this and remembering that there is always a chance it can come back, I need to get in to the doctor. Wishing you all good health and peace. 

  • Chcorser
    Chcorser Member Posts: 1
    edited July 2020 #17
    Eccrine Cancer

    My daughter was diagnosed 4 years ago with eccrine cancer.  now she has a recurrance/metastasis.  Her doctor is no longer practicing medicine.  
    we are looking for any doctors who have experience with this cancer Or maybe soft tissue cancers.  We would go anywhere to at least consult with someone.   (We live in Southern California).
    Where are you all being treated? Even any centers or doctors that treat rare camcers?  I would appreciate any help or any kind doctors that i might call??

    thankyou!

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