myoepithelioma

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myoepithelioma

by kayleighnicole on Thu Oct 18, 2007 12:00 AM

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I was told i have a rare form of cancer called myoepithelioma, and am looking to find anyone else who has this type of cancer.  Contact me if you know of anyone with this cancer or have it yourself.

 

kristi

RE: myoepithelioma

by JJ123 on Sun Sep 21, 2008 12:00 AM

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On 10/18/2007 kayleighnicole wrote:

I was told i have a rare form of cancer called myoepithelioma, and am looking to find anyone else who has this type of cancer.  Contact me if you know of anyone with this cancer or have it yourself.

 

kristi


I have had myoepithelioma. If you are still looking for someone who has had it let me know. I would like to know your experience also.

 

JJ

RE: myoepithelioma

by kayleighnicole on Mon Sep 22, 2008 12:00 AM

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Thanks for the message.  Here is my story....I was diagnosised in July 2006.  It started with me noticing a lump in my pelvic area and went to see the doctor that was in may of 2004, the doctor thought it was just a mucus filled sac and as long as it wasn't hurting me it was nothing to worry about.  We watched it year and i went in for an unrelated surgery in June 2006 and had them remove the tumor too..  Came back to my post op appointment where they told me it was cancer....I saw a oncologist afterwards and he told me that all that needed to be done was to go and have a wider scope done to make sure they got all the cancer...had that and everything had come back clear.  I was told no chemo or radiation or CAT scan was necessary....Then about a year later....I noticed another lump....Went back to the dr and she was conserned too.  I then had a CAT Scan and a Pet scan where they noticed TWO big tumors one in the same place as before and a bigger one attached to my abdomen...I had another two surgeries, One major one: removed the tennis ball sized tumor in my adbomen 14 lymph nodes in my right leg, my right ovary and right tube and a muscle from my right leg.....I was in the hospital for a week and couldn't walk for about 2...They got all the cancer and since this came back i had 7 weeks of chemo and radiation.....I know have to wear a compression stocking on my right leg everyday since i don't have any lymph nodes in my right leg, they are worried about lymphedemia, so far pretty good, but you never know what will start it....

 I did have my incision open up after my radiation was over, that took about 9 months to finally close...It was a long process, but finally now i am feeling great and am cancer free.  I still have to go every 3-6 months for scan and check up.....

 What is your story and How are you doing???  It is so hard to find info on this type of Cancer, so i am always looking for more stories and to see how others are being treated....So let me know..Where do you live and where were or do you get treated at???

 Sorry long email...

 

Kristi

RE: myoepithelioma

by JJ123 on Wed Sep 24, 2008 12:00 AM

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Thank you so much for writing me back and telling me your story! I too have had very little luck in finding information about this type of cancer. If you don't mind me asking, how old were you when you were first diagnosed, and have they given you any ideas of how or why you got it? I am just curious based on my own experience. They don't have any idea how or why I got it. In january of 2005, I injured my back at work. I worked in the healthcare field and they mandated that I have a back xray to check my back. I was 27 years old. My back was fine but a golf ball size mass was present in my right lung. I am from Michigan and I was living in Grand Rapids at the time. My doctor told me that it was probably a pneumoinia that had never healed or a infection. I did not have health insurance at the time so I waited until May first to have a biopsy when it had not cleared. The biopsy came back as a malignant cancer, although they did not know the type at the time. Within a week I was in the Fred and Lena Meijer Heart Center, haveing a thoracotomy, and my right lower lobe of my lung removed. It took about 3 months for them to find someone who could diagnose it. Then it came back as a malignant myoepithelioma. The doctor I had at the time said that there was not enough information about it to know if it was going to spread, come back, ect. He also said that there was not enough research to suggest weather it would be approperiate to have chemo or radiation, and because I was younger, he didn't want to put me through it not knowing if it would be effective or not. In July of 2007, I found a lump in my left breast, they removed it and determined that it was not cancer. In November of 2007, I had 3 lymph nodes in my left neck swell up and they removed them and they were not cancer. I still have lymph nodes that swell from time to time and I just try to watch them. I have nodes in my lungs that have developed since the surgery in 2005, but nothing is big enough to biopsy. They consider me cancer free. I will continue to have CAT and MRI scans a couple times a year for many years to come. I am just now feeling great again and hope that it continues. But with the uncertainity of this disease you don't know. I am happy that I finally got to talk to someone else who has had this type of cancer. I had given up on looking for information a while ago and I just looked on this the other day for the fun of it, and there was your message. God bless you and your continued health. I look forward to talking to you more.

Janice

RE: myoepithelioma

by gizmo1 on Mon Feb 01, 2010 01:14 PM

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hi i too have had this cancer mine was in my nose its really hard to find any info on this and no doctor i have spoke to can ease my mind as they know nothing about it

niki

RE: myoepithelioma

by cbhowell on Wed Aug 25, 2010 01:23 AM

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My neighbor has this type of cancer. It normally starts in the salivary glands. His started in his lungs and moved to his esophagus and now has tumers on his back and in his chest cavity. The doctors said they think it is a specific gene handed down. It is a very rare form of cancer.

RE: myoepithelioma

by cancerbro on Wed Aug 25, 2010 01:51 AM

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My sister has malignant myoepithelioma, otherwise known as myopethial carcinoma.    It first manifested a few months ago as very large and painful lump in her buttock, which was misdiagnosed as many things before someone thought to check for cancer.  They intiially though it was a sarcoma, and we got her treatment at Dana Farber.   Once she got there, they diagnosed as myoepthelioma.

Unfortunately, in her case, they caught it very late.  It is very aggressive and has spread to the lungs, lymph nodes and liver.  She is currently undergoing chemotherapy to try to arrest the spread of the cancer.

From what little info there is on myopethelioma, I have learned it is quite rare and, like sarcomas, often misdiagnosed.  Dr. Chris Fletcher, an oncology pathologist affilated with DFCI helped identify it a few years ago.  If you send me your email, I can get you a copy of a journal article he wrote about it in 2003. 

Best wishes to you.  Where are you bein treated?

 

RE: myoepithelioma

by Danne on Thu Sep 09, 2010 01:49 AM

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Oh my gosh! I was told yesterday this is what I have. I had a two lb tumor removed from my lower left pelvis area. I live in Kentucky and had surgery at the University of Kentucky Hospital. They were unable to identify the tumor and sent it to Harvard Medical School where they named it Malignant Myoepithelioma. I have researched this to death and by small miricle found you. Please contact me. My email is desh

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. I will give you my phone number then. i wish your sister well and thank you in advance for any information you can provide me. Sincerely, danne l.

RE: myoepithelioma

by gizmo1 on Wed Sep 21, 2011 02:31 PM

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On Sep 22, 2008 12:00 AM kayleighnicole wrote:

 

Thanks for the message.  Here is my story....I was diagnosised in July 2006.  It started with me noticing a lump in my pelvic area and went to see the doctor that was in may of 2004, the doctor thought it was just a mucus filled sac and as long as it wasn't hurting me it was nothing to worry about.  We watched it year and i went in for an unrelated surgery in June 2006 and had them remove the tumor too..  Came back to my post op appointment where they told me it was cancer....I saw a oncologist afterwards and he told me that all that needed to be done was to go and have a wider scope done to make sure they got all the cancer...had that and everything had come back clear.  I was told no chemo or radiation or CAT scan was necessary....Then about a year later....I noticed another lump....Went back to the dr and she was conserned too.  I then had a CAT Scan and a Pet scan where they noticed TWO big tumors one in the same place as before and a bigger one attached to my abdomen...I had another two surgeries, One major one: removed the tennis ball sized tumor in my adbomen 14 lymph nodes in my right leg, my right ovary and right tube and a muscle from my right leg.....I was in the hospital for a week and couldn't walk for about 2...They got all the cancer and since this came back i had 7 weeks of chemo and radiation.....I know have to wear a compression stocking on my right leg everyday since i don't have any lymph nodes in my right leg, they are worried about lymphedemia, so far pretty good, but you never know what will start it....

 I did have my incision open up after my radiation was over, that took about 9 months to finally close...It was a long process, but finally now i am feeling great and am cancer free.  I still have to go every 3-6 months for scan and check up.....

 What is your story and How are you doing???  It is so hard to find info on this type of Cancer, so i am always looking for more stories and to see how others are being treated....So let me know..Where do you live and where were or do you get treated at???

 Sorry long email...

 

Kristi

I too have had this , mine was a small tumour on my face I had it removed after doctors told me to leave it as it was just a sist,, finally they removed it and gave me the news it was a rare cancer ,, I now have swollen lymph nodes in my neck doctors now telling me it's nothing to worry about . But I am worried the fact is they actually no very little about this so I feel they are actually guessing with my life I am really worried now as the lump in my neck is getting bigger but they tell me to leave it,, in fact the say the chance of myoepithelioma being secondary is rare, I find it a joke because it's rare anyway they don't seem to know anything about it ..intact my own gp can't even pronounce it ,,

RE: myoepithelioma

by Digsat on Tue Jan 24, 2012 03:26 AM

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On Oct 18, 2007 12:00 AM kayleighnicole wrote:

I was told i have a rare form of cancer called myoepithelioma, and am looking to find anyone else who has this type of cancer.  Contact me if you know of anyone with this cancer or have it yourself.

 

kristi

I had a open biopsy two weeks ago and went for a followup and diagnosis. myoepithelioma came up but lab wants second opinion so now have to wait another week or two. I've been researching this and not coming up with much info.doc said its mostly benign tumors and has a low reoccurrence Rate.it is located on left upper thigh on side. Ive never had any pain from lesion.hope things are going well for you.
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