When I was 12 years old my mother died of colon cancer, she was 34. Her mother had died of colon cancer three years before at the age of 54. I always knew that cancer "ran in our family." You just didn't talk about cancer back then. It was taboo, almost like you could catch it by just talking about it. So years went by and I and my three brothers grew up. At the age of twenty my youngest brother was diagnosed with a rare form of cancer called spindle cell carcinoma of his pulmonary artery. It was so rare for someone so young that an article was written about him in a medical journal. He died when he was twenty-nine. Cancer seemed to take away everyone that I loved dearly. When I was forty-four after many test, ultra sounds and ex-rays I was diagnosed with cancer of the ureter, the tube that goes from the kidney to the bladder. I had surgery and six months of chemotherapy. At age 50 I found a lump in my right breast and was diagnosed with breast cancer. I had surgery and 32 or 34 treatments of radiation. While going through radiation I started to have blood in my stools. I told my radiation oncologist and was scheduled for a colonoscopy. Yep, you guessed it! I had colon cancer. After radiation was finished I had surgery for colon cancer. The doctor said he got it all. Great news, I thought. I was now going for my yearly mammograms and every three years for a colonoscopy. On one of my yearly mammograms the doctor came back to tell me I was clear but that she thought that maybe with my history I should check Heredity syndromes and gave me a piece of paper with different types of heredity syndromes. I feel that this dear lady saved my life.
I had never heard of heredity syndromes for cancer, but when I read down the list and read about Lynch syndrome I knew that I had this syndrome. I went on line and researched everything I could find even down to the gene which I thought could be MSH-2. I called the oncologist's office and got in touch with the Nurse practitioner who did testing. She agreed that I met the criteria and tested me. I did come back positive for Lynch, the gene was MSH-2. I was glad and very sad at the same time. I cried. I finally knew the killer of my family and the stalker that kept coming after me, but then I thought of my self, my brothers, my sons, my granddaughters and the only living sister of my mother, my aunt and her children and her grand children. I sent out the form letters to all of my family and to advise, plead for testing.
When the nurse got the results of my test she set me up for an early colonoscopy and to see a gyn doctor. The gyn doctor found a thickening in my uterus wall but wanted to do test. He said he didn't want to remove the uterus. The surgeon did the colonoscopy and found cancer again. The gyn doctor then decided since I had to have surgery again he would take out the uterus while the surgeon did the resection. My fear was that I would have to have a colostomy. I had watched my mother deal with hers and I thought it was just horrible as a young girl. After surgery I found out the uterus did have cancer in it and it was growing into my cervix. I was in shock. All this cancer in my body and it was so silent that if I had waited for my three year colonoscopy and didn't have my uterus out what could have happened to me? I did have to have three vaginal radiation treatments which were indignant and humiliating and hurt.
During all the cancer and treatments I have worked as a registered nurse, maybe that is part of my survival. But it has taken it's toll. I worked as a hospice nurse most of the time and after learning my diagnosis and having multiple cancers then working with the dying I just couldn't take it any more. I had a break down and became very depressed wanting to kill myself. I no longer work as a R.N. and now just try to live each day at a time. I am still alive and I don't think about what is next.
I had a difficult time when I was diagnosed with Lynch syndrome. I was the first person in Lynchburg, VA. with Lynch and I had to educate my family doctor and other professionals about the disease. I had a hard time trying to get family to get tested. My youngest son had colon cancer several years ago at the age of 32. My oldest son is 40 and still has not been tested. My younger brother is positive and so are his two daughters. One of his daughters is testing her 10 year old son because he has gastrological problems. My older brother is negative so he and his two daughters and his grandchildren do not carry the gene. My two grand daughters will be tested some way when they are old enough.