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Sweat gland cancer?

leeranger
Posts: 4
Joined: Jul 2012

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?

BEBS
Posts: 16
Joined: May 2011

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

leeranger
Posts: 4
Joined: Jul 2012

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. 

bigwheel21
Posts: 1
Joined: Sep 2012

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
Posts: 1
Joined: Sep 2012

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's picture
Tanya85
Posts: 6
Joined: Aug 2013

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
Posts: 1
Joined: Oct 2013

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
Posts: 1
Joined: Dec 2013

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.

 

mandakate13
Posts: 1
Joined: May 2014

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
Posts: 2
Joined: Jul 2014

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.

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