It’s My Life….
I was born in Sean Ross Abbey Mother-Baby Home, Roscrea, Co. Tipperary, Ireland in 1947.
My mother stayed with me for 3 1/2 years only to be forced to give me up for adoption. In 1951, I was adopted by an Irish couple, who lived in New York and grew up as their only daughter. In 1969 I got married and in 1970 I had my son. I went back to college in 1975, and received my nursing degree which later would prove to be very valuable. My husband, son, and I went to Ireland in 1979 to the home where I was born to try to find my birth mother. We had no success. I knew the information should be available, but got nowhere. It was extremely frustrating.
I started having rectal bleeding in 1983, and went to a Surgical Consultant. He performed a sigmoidoscopy, and said it was most likely from a hemorrhoid. The bleeding continued, and I called him back. He recommended to go and see a Gastroenterologist. I had a colonoscopy and found out I had colon cancer. I had surgery in July of 1983, and had a sigmoid resection. The operation was successful, but I had a slow recovery. By January of 1984, my husband and I had separated and we later divorced. Throughout all of this I continued to have annual colonoscopies.
In December of 1985, I remarried, and started a new chapter now living in Pennsylvania.
In 1994 I finally found my Irish family that I had been wondering about most of my life. In August of 1994, I met my 2 brothers and their extended families. I also sadly found out that my birth mother had died in 1988 from colon cancer. Little did I know at that time what the future held for my brothers and me with Lynch Syndrome.
Up until 1998, I had a colonoscopy every year. In 2000, I waited 18 months to have a colonoscopy and found out that I had a polyp that was cancerous.The GI Dr. called me at work and said “If you want to live, you need surgery immediately”. During this period I also had gross hematuria (blood in urine) for 1 year. After treating this with medication, thinking it was a bladder infection, I finally went to the Urologist and he did a cystoscope and diagnosed bladder cancer. He also did a retrograde pyelogram (radiograph of the bladder, ureters, and renal pelvis) in the OR. He discovered a tumor on my left ureter and recommended I have my left kidney removed. In 2001, they did a transurethral resection of the bladder tumor and 2 weeks later I had a colon resection and my left kidney removed. In 2002, I had a reoccurrence of a bladder tumor and had the TURBT performed again and 6 BCG treatments for recurring bladder cancer.
About this time I started wondering what was going on inside my body. Why was I having so many problems at such a young age? I decided to have genetic testing done in 2004, and found I have a defective gene called MSH2. It is the leading cause of Lynch syndrome. In my mind I was already prepared for this and was not surprised. Because of being positive for MSH2 in 2004, I had a total abdominal hysterectomy (prophylactic), not because of cancer being present.
I had the genetic testing for my son’s sake, because if I was negative his chances of getting colon cancer would be considered the same as the general public. It turned out that I was positive. He is 45 years old and has never had a colonoscopy. He also has no interest in knowing anything about Lynch syndrome. I feel he should at least have the genetic testing done for his wife and 3 children’s benefit.
I am glad I shared my results of my genetic testing with my 2 brothers. I helped them to start having regular colonoscopies. Both of my brothers unfortunately had colon cancer.
Access to Knowledge is Access to Power. Knowing the enemy is a big advantage.
I have learned several important things from this journey.
Number one is to take care of yourself because your good health is very important. Be diligent with follow up exams and tests. You don’t realize this until you are sick.
Number two is if you find yourself in a health crisis it is important to surround yourself with a support group of friends and family.
Number three and probably the most important is that this can be beaten. Both my brothers and I are living proof.
As of today, we are all happy and healthy.