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Uterine Cancer and Lynch II Syndrome

Mollymom
Posts: 1
Joined: Feb 2005

I had complete hysterectomy Dec 20, 2004. I was diagnosed with adenoma carcinoma. It was stage 1 cancer with a grade 2. I'm 40 years old and the cancer was found because of a D&C to remove a polyp. The cancer was confined to the polyp. My mother, grandmother, and aunt all had this cancer and survived. My great aunt died of colon cancer. My uncle has had kidney cancer. I am cancer-free currently, my lymph nodes were disease free. My oncologist says there is about 95% chance that I have Lynch II syndrome. Does anyone out there have this Lynch II syndrome? My onocologist recommends that I have genetic counseling. Has anyone had genetic counseling? What does that do? I feel like the person who drew the short end of a stick in a terrible mission. I'd appreciate thoughts, advice. Thanks.

deanna14
Posts: 733
Joined: Oct 2008

I was diagnosed in September 2008 with mixed endometrial and uterine papillary serous carcinoma. Mets to 1 lymph node. The gyn/onc sent the positive node for dna testing. The preliminary testing show that I am positive for Lynch Syndrome. My brother had colon ca at age 39, me uterine ca at 39, mother had endometrial ca at 52, grandmother with multiple colon cancers over her 96 years, and a half maternal uncle with colon cancer.
My doctor is referring me to a genetic counselor. My brother said he has heard that insurance companies try to get ahold of your records from genetic counseling and deny you coverage. Does anyone know anything about Lynch Syndrome. Is it true that such genetic issues can be used against you in the aquisition of health insurance.

DarDar
Posts: 1
Joined: Jun 2009

Hi How are you? I was diagnosed with Unterine cancer in 2005 and was 28 years old. I had a radical hysterectomy and thankfully the cancer was confined to my uterus. I just had the genetic test done for Lynch Syndrome and I tested positive. So I know you asked if anyone had this test done and I did. My Insurance covered it 100% because my mother's entire side of the family had colon cancer or uteran cancer or both. I am not sure if you had the test done already but, my genetic counselor said that since my family is high risk my Insurance covered it. I have GHI/Emblem Health. If I can help you in anyway please let me know.

elle3
Posts: 1
Joined: Jul 2009

I was diagnosed with colon cancer in 2002. My Mom had colon cancer her late 20's, uterine cancer late 30's, right kidney cancer at 53 and left kidney cancer at 67. Her father, my grandfather died of colon cancer at age 44. Due to this family history, my oncologist tested for the genetic marker through Myriad genetics for Lynch Syndrome. The test was positive. Due to the concerns regarding insurance, both my daughters were tested anonymously for the specific genetic marker - 1 was positive and 1 negative.

Since that time my daughter, in her 30's, who tested positive has been proactive about colonoscopy and endoscopy and medical checks for cancer. Thank goodness - she knew to be aware and conscientious. She has had several polyps removed in the last few years and just this past week she was diagnosed with endometrial cancer. We are hopeful for her recovery from this dreadful disease.

If it wasn't for the understanding by Dr. Lynch and the genetic testing, I fear we would not have known to be so vigilant.

After now 4 generations of this disease - we know not to give up and stay vigilant for early signs of any cancer.

Not related to Lynch Syndrome but my daughter, my mother and myself have survived thyroid cancer. I have also survived a Sarcoma in my upper left arm in 2005.

pharmgirl824
Posts: 1
Joined: Mar 2012

Hi-
My mother was recently diagnosed with Lynch Syndrome. My brother, sister and I would like to have the genetic testing done anonymously. How did your daughters go about getting the test done anonymously. Was this done through a doctor's office?

Thanks!

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