eccrine cancer

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eccrine cancer

by Cookie4 on Fri Jun 01, 2007 12:00 AM

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My sister was recently diagnosed with this and was told it is a very rare cancer.  They removed the tumor and have done two additional surgeries removing lymph nodes to see if it had spread. They both came back cancer free.  Any information about this cancer would be appreciated. 

RE: eccrine cancer

by Mnmsmom on Mon Jun 04, 2007 12:00 AM

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On 6/1/2007 Cookie4 wrote:

My sister was recently diagnosed with this and was told it is a very rare cancer.  They removed the tumor and have done two additional surgeries removing lymph nodes to see if it had spread. They both came back cancer free.  Any information about this cancer would be appreciated. 

 Cookie4:

I  have eccrine cancer and have been desperately looking for someone else who has this--yes, it is very rare!   I am a 39 year old mom of two young daughters.  My tumor was on my head and was found and removed a few months ago.  My sentinal lymph node test came back cancer free as well, and they took a margin out around my tumor that came back cancer free as well.  If your sister is anything like me, she is still very concerned.  I was operated on a well known doc at Rush-Presbyterian in Chicago who felt I would not ever have to deal with this again.  However, all the 'internet fishing' I did seemed to tell  me that there was a high recurrence rate.  Last week I went to a doctor for a follow-up/second opinion.  He confirmed that there is a 65% recurrence rate. However, because my tumor has likely been there since around the year 2000 and hasn't spread, he believes that that is the best indicator for my future prognosis.  He said that because it did not spread to my lymph nodes, I can feel a little better that it may not return.  He did say, though, to consistently (monthly?) check my lymph nodes running down the back of my neck (closest to where my tumor was) and if they are swollen to make an appt. Also if I didn't feel well for two weeks (and there was not apparent reason why) to make an appt, that it may have returned in my blood stream.  Lastly, he suggested that if any lump appears anywhere to make an appt too.  Other than that, he said he only needs to see me every six months, and after two years if I have been cancer free, I can feel confident it wont return.

I would really appreciate any info (her age? location of tumor?) you could give me on your sister--I would even love to talk if she or you are interested.  When they first diagnosed me, they thought a plate might need to be put in my head and that my head might be deformed!  Fortunately, my scar is only about an inch and a half long and it is hidden under my hair--not even visible.  I started an eccrine page on this website (not sure why they didn't categorize your email under it) and tagged all emails related to eccrine to come to me.  Luckily I just saw yours on the main page.  I met one other person on this website that has it.  A person's father who had a lump on his arm, then the cancer spread up his arm and down the right side of his lung.  Most recently it went into his lung. 

Again, thank you for your email--I am sorry to hear about your sister, but am thankful for you reaching out.  It has been very scary for me and I'm sure it is  for her as well.  sue

RE: eccrine cancer

by Barmer on Mon Jun 04, 2007 12:00 AM

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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.

RE: eccrine cancer

by Mnmsmom on Mon Jun 04, 2007 12:00 AM

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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!  

RE: eccrine cancer

by Barmer on Wed Jun 06, 2007 12:00 AM

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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------

RE: eccrine cancer

by Barmer on Wed Jun 06, 2007 12:00 AM

Quote | Reply
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 next 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 that 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 asked him 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) sweat 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 third 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. So it was a fluke that my husband discovered he has eccrine cancer and he is not feeling sick in any way at this moment in time. But we are very concerned about what to expect in the future. 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------

RE: eccrine cancer

by Barmer on Sun Aug 19, 2007 12:00 AM

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Just a follow up to our ordeal. It has a happy ending. After three procedures, my husband was sent to Dana Farber in Boston where he saw an MD who has some experience with eccrine cancer. She did another surgery to widen the margins-he has a huge scar the length of his back. But the outlook is excellent! He has no more signs of the cancer and the lymph nodes were not involved and it is with great relief that I submit this message. He has a 90% chance of NEVER having this cancer again-mainly because I made such a fuss over the lump on his back and insisted it get removed.

RE: eccrine cancer

by Mnmsmom on Sun Aug 19, 2007 12:00 AM

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Thank you for the update.  I have been in and out of the state/country and have missed a few emails.  There is another woman my age who has an eccrine  tumor in the exact area that I had.  Very unusual.  My doctors have all said that I have a very slight chance of it returning as well and they do not seem so concerned anymore.  It's hard for me not to worry though.  I am so happy your husband has a happy ending in such a horrible ordeal--I know you can sleep better too! Take care, and I hope to NOT hear from you :).

RE: eccrine cancer

by friend_of_Lori on Tue Aug 28, 2007 12:00 AM

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On 8/19/2007 Mnmsmom wrote:

Thank you for the update.  I have been in and out of the state/country and have missed a few emails.  There is another woman my age who has an eccrine  tumor in the exact area that I had.  Very unusual.  My doctors have all said that I have a very slight chance of it returning as well and they do not seem so concerned anymore.  It's hard for me not to worry though.  I am so happy your husband has a happy ending in such a horrible ordeal--I know you can sleep better too! Take care, and I hope to NOT hear from you :).

Hello everyone! My dear friend has eccrine cancer. She is 47 and mother of two. A tumor showed up on her back ( I thought it was a cyst) The tumor was shown to be metastatic.  But the docs did not know from where, (Breast, ovary or lung) Took more margins and scaned her from head to toe.  All looked OK until 5 months later.  Node under arm and a spot in the back of her tongue.  They still did not know what type of cancer, but started chemo.  After a few more test and lab work, they now think she has eccrine cancer.  She has responded to chemo, lymph nodes are 50% better. But they also discovered a spot on her liver.  I am a nurse and worked in pediatric cancer, I do not know anything about this adult cancer.  Her doc has not given her much info and I spoke with him also.  I am looking for info on this type and if this is going to be a chronic issue or can we look at the word cure.  Is there one expert doc in this type and does anyone know where to get more info and info the best treatment.

 Lori is an amazing person and she is in her fourth round of Chemo. 

Thanks in advance for your help with any information.

Regards,

Lori's Friend

RE: eccrine cancer

by delaney on Thu Sep 06, 2007 12:00 AM

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I am another person affected by this cancer.  If it's so unusual, seems as though a lot of people are struggling with it but no one knows where to turn.  I had a spot on my lower leg by my ankle in August 2006.  My family doc said it was a benign fibroma, took it off and never sent it out for pathology.  It was about 0.5cm, very small.  It came back within one month, more tender than it had been, slightly bigger and wouldn't go away.  Had it not been that I kept shaving over it, I would have let it go longer.  I TOLD him he was taking it off and sending it out this time.  That was December.  To his disbelief and my dismay, it came back eccrine.  The pathologist called him directly because he knew how unusual it was and the doc would have never heard of it.  He told me he would have to take a larger section out to make sure the margins were clear.  At that point I said enough and went to the dermatologist.  HE said the wider punch biospy would not have enough to be certain it was gone and he would do a wide excision.  He did, I had 13 stitches, it came back all margins clear.  I just had my 8 month check up and he said in his 20 years practicing he has seen maybe 6 and although there are no guarantees, as small as it was, he thinks it was an isolated thing.  I try not to worry but am pregnant with a baby girl due in 5 weeks.  I want to see her grow up with a cancer free Mom.   
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