eccrine cancer

On Oct 20, 2011 4:29 AM moun62 wrote:

On Jun 06, 2007 12:00 AM Barmer wrote:

Hi, We are desperate for more information. We are wondering if the cancer is actually more common but spreads to lymph nodes and is not diagnosed early so, when it is, it is simply not recognized. Here is what happened to us: My husband had a hard lump in his lower back-slightly above his waist on one side. He had it as long as I can remember and it bothered me. When I hugged him, I asked him about it. He said it was a cyst and there was another one enxt to it that opened when he was 19 years old and working part-time while he was in college for a large company that had a health office. They sent him to the health office and the area was cleaned and bandaged. End of story on the cyst. For the past few years I have been pestering him about the remaining cyst and he has had it looked at every year when he has a physical. He is a "young" 64, active, vibrant, and a runner- trim and very fit. The physician said it is nothing. But I said that lump felt harder and I wanted him to see a dermatologist who also said it was nothing. This year I mentioned it again before his annual physical. I told me maybe it was and is nothing but I would feel a lot better about him having it removed and aske dhim to do it for me. Again, the doctor said it was a harmless cyst. The dermatologist said it was a harmless cyst, but my husband said he wanted it removed because of me. The surgeon removed it and said it was a nothing but a sebacious (probably spelled wrong) swaet gland cyst, but sent it out to pathology. The surgeon also said it was deeper than she thoguht it would be and this office surgery turned out to be painful for my husband. Then the lab report came back as most likely basal cell cancer and he had another surgery to remove the margin area that had some cells. then that came back as having still more cells and a decision was made to have a thrid procedure in the hospital with the idea of getting rid of basal cell cancer once and for all. The surgeon excised a large piece of tissue that went to pathology and two weeks later my husband visited the doctor (JUne 3rd) who told him it was not basal cell but rather eccrine cancer and she also said it was so rare that she knew nothing about it. She told him only 400 cases are diagnosed every year, that it had not spread to the lymph glands, and that it was a type of cancer that could spread. She is trying to set up an appointment with Dana Farber (Boston) near where we live so a team of oncologists might look over his records. Also she thinks they may want to give him some radiation as a precaution- So I rushed to the Internet and have not been coming up with much information. I am so desperate to know more from people who have this cancer and to know what oncologists from other parts of the country are saying. My husband has two much older brothers. One is 76 and is a breast cancer survivor (unusual in men), the other one is 74 and has recently had surgery for melanoma. But this brother has multiple additional health problems (diabetes, Parkinson's, and a blood disorder) that are more imemdiately pressing. Anyway it was the genetic history that gave the doctors the impetus to do more intense pathology tests. Please tell me every and anything else you know. THANKS!!!!!! ----quote------ On 6/4/2007 Mnmsmom wrote:  On 6/4/2007 Barmer wrote:My husband was diagnosed today and has yet to visit a cancer specialist. He had a cyst removed from his back-been there for 40 years and I never liked it. Doctors kept saying it was nothing. First they said basal cell and he had it operated two more times. Now the pathology came back eccrine carcinoma. I am very worried. he is the healthiest person I know. It has not spread to lymph glands and his surgeon never saw it before in anyone and is sending him to Dana Farber-let's stay in touch.I can't believe this--two hits in a week.  Maybe this is getting more known.  Good luck to your husband and let me know how it goes.  Also please let me know if you have any questions and I will try to help! Thank you for your email!   -----end quote------

hi,i am amazed to have found you,another word for this cancer is basaloid carcinoma ad i have had it for 20 years and still fighting it.....a little background....20 years ago when i was pregnant with my son i also had what i tought was just a litle agravating pimple on my side,since i was pregnant it did not occured to me to have it removed even thou it was growing slowly inside and outside of my skin...just where you close your jeans at the waist,after my son was born i decided to have it removed because of the place where it was growin so i amde an appointment with surgery,we removed it and i stopped thinking about it till a week later,the doc called me and told me to come back to have it open again and scraped some more as it was positif....what the heck did i know about positif?i just had a baby,went back to work in catering for fundraising for congress in washington...i was super busy and super happy...my littlefamily was complete...a great husband,a daughter then a dream of a little boy.....i went back in a realize he meant i had some kind of skin cancer...but he also told me not to worry...ths is not the type that goes anywhere and so life went along.......he forgt to tell me one out of a million do go in .and life went on until we oved to atlanta and i was working with a team to feed the olympics in 1996...the morning before the opening my life whent crashing down.....a fews months before i started gong to the doc thinking i had sprain a leg muscle when in fact my now familiar ennemy was once again waking up.....after trying all kind of antiinflamatories with no result i finaly got a scan that showed something was going on on my right side....from there i was send for a biopsy that  ended up beeing done under the pet scan as there was no solid mass...it was in the soft tissue just a diffuse area....and by onday i was on kemo...the onco never saw it before and they concluded that it had started from a sweat gland and kept going from there....the first 6 months of kemo was cisplatin and 5fu....it knocked me off my feet but i was super healthy exept for the cancer and i recover completely over time after i was told the cancer went in remission after the 6 months of that cocktail....i also had surgery after kemo to make sure it did not spread o the lymph nodes and it did not.....i went to all my pet scan appoinment for the next 5 years,,,every 3 months the first year then every 6 months after that.....5 years passed and i was prononced in remission and cured.Afews "" target="_blank" rel="nofollow">http://cured.Afews " target="_blank" rel="nofollow">cured.Afews months later i started having symptoms again and unfortunatly my doc did not beleive me and kept sending me to all specialists possible for all kind of pain i was having...it took 4 years to get it under controle with again a biopsy under the pet scan machine and back i was on the kemo i hated so much.....since then i have had a complete hip surgery as it moved to the bone about 2 years ago and after allkind of kemos,radiation,experimental kemos,radiation in a injection that goes to the bones and so much more ...i now just finished my last 6 months of kemo,i had a pain pump put  in that delivers morphines everyso often,a brand new hip,a filter in my artery as i was having too many blood clots in my legs and i am forever on injections for that,i do  have a neuropathy that is not too bad in my feet from the cisplatin,i lost my hair with only one of the kemo,anyways,i am beat up but...ALIVE....my children have grown and gone to their own destiny and thank God i was there for them to grow up with a mother...i dont know what else to tell you all...please ask any questions you feel like...it is a hell of an experience to go thru but for years i could not find another like me to talk to and i just happen to bump into the word eccrine and remenber way back then when i was researching this thing in the national library of science online,i remenber that word kept coming back even thou my doc at that time did not say a thing about it...in the beginning they called metastaze of unknow primary then  basaloid carcinoma.....by the way,when i started this way back then i was already at the 4th stage so.....dont panick ,its a very slow cancer in the begining but everyone is different....ironicly,i was very lucky in that aspect.....i am sorry we have to meet under thoses terrible and scary circonstances but sohappy to have found others like me...bless you all and its a long road but so worth the journey.......

I have recently this year found out I had Eccrine Cancer. Cancer of Sweat Gland on back of my head near neck. It took 15 yrs at the least to get to this point. I have benawayre of a very sm knot. From Time to time over the years I asked What is this, oh Nothing I was told. Last 2 Yrs I went to Dermatoglogy in Tyler and Both times told it was wren cyst. Second time, I asked to have ot removed and WALLA..Form of Rare Cancer. BUt first ..They thought I was in STAGE 4 BREAST CANCER.

   SO MAMOGRAMS AND PET SCAN WAS ORDERED BY CANCER DR AND HE HAD SLIDES SENT TO ANOTHER PLACE.  That is when I found out true kind of cancer. I read up on everything and knew as much and more then some of Dr's I saw..( Not good feeling)

 I refused radical neck surgery, chemo amd radiation. Later i decided I would do Proton at MD Anderson.

    Pet scan showed sm upstart in neck..it had moved.

SO I go to MD..I will stick to facts, Medical ones.

I received 30 Proton Treatments. Was told I might have little hair fall out, slight redding of skin.  Tuens out after 3 week 4x6 patch of my hair fell out, roots and all. My ear was sore, I asked if they were going to burn off..Naaa our ear will be fine. They were right, but not for very long time. It got infected, behind it and sores all over it and my neck got blisters and some cracked open. Was very miserable time with head, ear and neck blistered.,. Finally got better, and

Then I broke out in Shingles on top  of Proton area. 

Now, its been 7 weeks and I can see light at the end of tunnel.  

   I will do Pet Scan in Tyler late August and check on cancer. But you are correct, they know vbery little and wait so long to figure it is cancer by then it has mind of its on.

I feel mine will come back more than once, but till it does, I will live my life.. Best Wishes to you all....Connie

I'm new to this board, not sure how to post!! I had a lot of the same experience. Had a small nodule on my head for about a year. Didn't pay much attention to it. A friend pushed me into seeing a dermatologist. She didn't like it, sent me to a surgeon. Biopsy came back Adenocarcinoma Unknown Primary. Had negative p63 which is unusual for Sweat Gland Carcinoma--info I found myself and took to doctor. There was another marker also not right. Been through most tests now except Pet scan all negative so the diagnosis has been changed to Eccrine Sweat Gland on scalp. I wonder what the odds are of having a rare cancer with two markers that are rare for the rare cancer? Does anyone else know what their biopsy report is? Basically two surgeries to clear the margins and that's it. Some internet reports say minimul chance of matatasis, others say metatasis usual. Really confused now. Especially because of the P63 report. I also suspect this is not that rare. There was an article in the Times that said it is 170% on the rise. But Eccrine Cancer also covers a lot of different cancers. Mine was on the scalp.

On Oct 24, 2012 6:38 PM shusu wrote:

I'm new to this board, not sure how to post!! I had a lot of the same experience. Had a small nodule on my head for about a year. Didn't pay much attention to it. A friend pushed me into seeing a dermatologist. She didn't like it, sent me to a surgeon. Biopsy came back Adenocarcinoma Unknown Primary. Had negative p63 which is unusual for Sweat Gland Carcinoma--info I found myself and took to doctor. There was another marker also not right. Been through most tests now except Pet scan all negative so the diagnosis has been changed to Eccrine Sweat Gland on scalp. I wonder what the odds are of having a rare cancer with two markers that are rare for the rare cancer? Does anyone else know what their biopsy report is? Basically two surgeries to clear the margins and that's it. Some internet reports say minimul chance of matatasis, others say metatasis usual. Really confused now. Especially because of the P63 report. I also suspect this is not that rare. There was an article in the Times that said it is 170% on the rise. But Eccrine Cancer also covers a lot of different cancers. Mine was on the scalp.

 

Hi,  I also had eccrine cancer on the scalp but I had an additional characteristic of it being mucinous which is another rare form to this "rare" cancer.  I am interested in looking into my pathology to see about the p63.  I also had the 2 surgeries to clear the margins. My experience sounds very similiar to your situation, just like doing most of the research myself.  I am 3 years out and have had no other occurence as of yet that I am aware of.  There does not seem to be an appropriate doctor to do my follow up so they assigned a dermatologist that I see annually. Did you get your lymph nodes tested?  Hope your PET scan results are good.

I had eccrine cancer on my great toe.  I have been cancer free for five years and see Dr. Ross at MD Anderson in Houston, Tx.  They removed my great toe, tested my lymph nodes and did a Pet scan.  I would agree with the last response and request a test of your lymph nodes.  It seemed when I first joined this site, there were very few of us diagnosed with this cancer, but since then it seems to be less "rare" than what originally thought.  I live in a very very small rural town and there are two of us in this town of less than probably 500 people with the same diagnosis, just different locations.  Hers was in her lymph nodes in the groin area.  It does appear ours is more rare than many, because this seems to be more common in the head/neck area from what I can gather from our communication and my own research.

Best of luck to all!  I hope we find a cure or commonality soon.

Staci

It is true the markers will be off and blow their minds..You make them look up cases and check on my case and will help them to not delay treatment and know what doing. I have wriiten on here about mine and hell getting it verified and getting tumor cut off after being told nothing. I went to MD asnd had Proton and yes it had moved to my neck from back of my head low near ear. I refused Surgry or Chemo..So far two#  3 mo apart  Pet SAcans in Tyler Tx Show cancer..I go back when 6 mo comes.. This cancer will return, but when?

It is now May 19th and I am ok..Next Pet Scan will be 6 mo after last. Can ony take one day at a time.