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Breast and Endometrial Cancer Leads to a Lynch Syndrome Diagnosis

July 04, 2020

Breast and Endometrial Cancer Leads to a Lynch Syndrome Diagnosis

by Marcy Friedman

My first cancer

In October 2003, at the age of 47, I was diagnosed with breast cancer and became a member of the Cancer Club. Subsequent testing showed I did not have a BRCA mutation. Nobody in my family had ever had breast cancer, so I was not surprised. I had a lumpectomy, radiation and chemotherapy, and moved on with my life.

My second cancer

In 2008, as I was nearing that important five-year survivor milestone, I started experiencing pelvic discomfort and frequent urination. Over the years I had several urinary tract infections and kidney stones, so I felt pretty sure it was one of those. I planned to call my doctor in a few days if I didn’t feel better. Then, in the middle of the night, I awoke and found myself bleeding, and the cramping was worse. Now I was scared.

The doctor said it was likely kidney stones, but because of my cancer history, he sent me for a pelvic and abdominal CAT scan. It did appear that I had passed some kidney stones, but I also had a mass on my uterus. An immediate exam with a specialist confirmed I had endometrial cancer. The crazy thing is that the bleeding was supposedly due to the kidney stones. Although bleeding is a sign of endometrial cancer, it turned out my uterus was fused closed. Therefore, if not for the kidney stones I would not have bled. I would have gone to the doctor at some point for the pain, but the kidney stones got me there sooner!

A careful oncologist suggests genetic counseling

I underwent a total hysterectomy and chemotherapy for a second time in my life. My new oncologist, who was a partner with my breast oncologist, noticed that my medical history included two aunts with colon cancer. Neither of my parents had ever had cancer, and they died of other conditions, so my oncologist suggested genetic counseling and possible testing for Lynch syndrome, which I had never heard of.

Testing proved I had Lynch syndrome. This began my journey of yearly colonoscopies and endoscopies, urology and dermatology visits, and routine visits with my breast doctor, gynecological cancer specialist and oncologists.

Sharing with family

I informed my family, including my brother and cousins, of my Lynch syndrome. Other than my two aunts, I know of no family member who had cancer or had been diagnosed with Lynch syndrome. One of my parents had Lynch syndrome, but I’ll never know which one. More importantly, I was advised that my two sons should be tested when they turned 25. I went with each of them to my genetic counselor. I was joyful when my eldest son was negative. Three years later my second son tested positive. He handled the diagnosis well. It was far more difficult for me to hear of his Lynch syndrome diagnosis than my own.

Cancer free

I’m now 17 years breast cancer-free and 12 years endometrial cancer-free. My son is doing well and he and his wife are due to have a baby. The best part of this story is that in vitro fertilization with genetic diagnosis ensured their child does not have Lynch syndrome. My family’s story with Lynch syndrome ends with me.

I learned of FORCE during my breast cancer treatment, and it became a great resource for me. After retiring two years ago, I wanted to get more involved in sharing awareness of endometrial cancer and Lynch syndrome. FORCE’s expanded mission to include those with Lynch syndrome felt perfect, and I will now be a Peer Negotiator and have the chance to help others.

I have been lucky enough to have the support of family and friends, as well as a team of doctors who provided me with excellent care and emotional support. I’m a survivor and I’m so grateful. Knowing that my son and I have Lynch syndrome allows us to be proactive in the process of early detection and cancer prevention. Knowledge is power! Giving support and empowerment to other Lynch syndrome and cancer survivors has given me a new purpose.

Posted in: Stories
Tags: Hereditary Cancer , Genetic Counseling , Genetic Testing , Lynch Syndrome , Endometrial Cancer


June 2, 2021

Roberta McGlinn says:
I'm 72 and just a few years ago when I got breast cancer, they did tests and was told I had Lynch Syndrome. Got the breast cancer early, and had lumpectomy and radiation on the table. I'm okay now, 5 years later. Diagnosed in 2016. However, in 1996 at the age of 47 I got endometrial cancer and had a radical hysterectomy and internal and external radiation. Radiation caused radiation proctitis and ruined my bones. Early osteoporosis--they made the mistake of radiating my left hip bone by accident after my cancer surgery which I broke a few years later ( I thinking skiing and golf weakened it). After a year the hip did not heal at all and I went to a specialist. Had to use a bone stimulater for 27 months, 10 hours a day, in order to get it to heal but it did. Two years later they put in a hip replacement and were dumb enough to use a new "state of the art" metal on metal hip made by Europe's biggest medical company. The thing corroded over the next few years and they couldn't figure out what was wrong. After years of shots in my back and bursa, it started to just pop out all the time. Still they couldn't figure it out (if you can even believe that) so I went in for a hip revision in 2011. Turned out it was like brown toothpaste, all eaten away--resulting in permanent drop foot, palsy, permanent nerve damage and more lymphaedema. A mess-- and they never told me what was wrong. I tried suing but that was a joke--couldn't prove they did anything wrong. Couldn't afford an individual high priced attorney that would have taken years of litigation but may have resulted in some justice for me. Ended up at Mayo Clinic. Finally had tendon transfer surgery on left foot to get out of my brace which was very painful to wear and had to fit into my shoe. Now my foot has very curled up toes--can't be fixed. My glut muscle in hip is gone and lymphadaema and curled toes results in chronic foot pain, constant limp and pain in hip and back--walk with cane now, if I can walk at all. Forget travelling. I paid a very, very high price for my permanent handicapped parking permit. I think sometimes these doctors are not aware of what they were doing to me. In the meantime, my marriage of 28 years ended when my husband found a new, healthier woman making me feel like a total failure. Lost my marriage, my home, our money from divorce, my health and everything that was important to me. This is just one woman's story--my story.


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