Lynch Syndrome Survivor and Previvor; My Complicated Story and Sister’s Courage

Lynch Syndrome Survivor and Previvor; My Complicated Story and Sister’s Courage

My name is Michele George, I am 43 years old, cervical cancer survivor and positive for Lynch Syndrome, MSH2 variant. My Lynch Syndrome Journey starts in the spring of 2009 when my younger sister, Rachel, was diagnosed with stage IV colon cancer (which was misdiagnosed and later determined to be  Pseudomyoxma Perotinei/Appendix Cancer). She was 33 years old, underwent a right hemicolectomy and a cancer treatment plan was initiated at the James Cancer Center at Ohio State University. The physicians at OSU were surprised that she was so young and there was only a family history of skin cancer, not colon or female cancers. My primary care physician at the Veteran’s Affairs clinic recommended a colonoscopy due to the possible hereditary link. I was promptly scheduled for a colonoscopy at the end of the summer in 2009. Rachel was there to give me advice on the colon prep, which everyone says is the worst part, and she was with me the day of the procedure. I drifted off under sedation and woke up easily afterwards with no discomfort, just feeling hungry. The surgeon removed three tubular adenomas (considered pre-malignant tumors) without difficulty. I was 35 years old and typically would not have been recommended for a colonoscopy until the age of 50 years old. I am so very thankful for the vigilance of my physician and urging from my sister t get tested, I am certain it saved my life. Later that same year after endless doctor’s appointments, chemotherapy and more surgery my sister received results of her genetic testing that confirmed Lynch Syndrome, MSH2 variant. Our family was already overwhelmed with Rachel’s diagnoses and prognosis but now we had to figure out which side of the family was possibly at high risk.

My genetic testing was initiated by my gynecologist after my annual exam, repeated pap smear and colonoscopy came back with suspicious possibly cancerous cells. My sister and I had the same gynecologist and she knew about Lynch Syndrome and the higher risk of uterine and ovarian cancers. I received a phone call in January 2010 that my test results were positive for cancer and that further testing for the specific type was needed as well as genetic testing. I was referred to James Cancer Center at OSU to consult with a physician for additional testing and the possibility of a new procedure to maintain the ability for childbearing. In March 2010, I received another phone call to tell me I had Lynch Syndrome, variant MSH2 and stage 1B1 cervical cancer that would require a hysterectomy. (I was told the cervical cancer is not linked to the lynch cancers.) My physician at OSU considered the cancer diagnosis and Lynch Syndrome and recommended a total radical hysterectomy with bilateral salpingo-oophorectomy, also removing my ovaries due to the high risk of ovarian cancer with Lynch. After watching my sister deal bravely with her cancer and treatments and her uncertain future, I proceeded with the surgery. In June 2010, I was cancer free and started on hormone replacement therapy and regular annual checks for Lynch Cancers. More family members were tested, some positive and some negative. Rachel was the driving force for genetic testing in our family, in addition to working with Lynch Syndrome International to create awareness; she was suffering with a poor prognosis. Rachel’s aggressive form of cancer was not responsive to chemotherapy, debulking surgeries or experimental drugs and vaccines. She died on December 10, 2011 leaving behind two beautiful daughters and legacy of determination to educate the public and health care providers about Lynch Syndrome.

My commitment to honoring my sister is to faithfully complete the recommended surveillance testing that earns me the title ‘Previvor.’ I’m happy to report no more polyps discovered during colonoscopies or EGDs and nothing suspicious on ultrasounds or urinalysis. The yearly testing is an annoyance to deal with, the scheduling, driving, insurance and cost but compared to the devastation of hearing the words, “you have cancer,” all those things don’t seem too bad. Having knowledge of my cancer risk allows me to be proactive.

My Lynch Syndrome surveillance is managed at Cleveland Clinic, where they are up to date on the latest research and guidelines for monitoring and testing. I am cared for by a team of doctors; gastroenterologist, gynecologist, and dermatologist. A special registry track patients with Lynch Syndrome and is managed by a registered nurse who is available to assist with appointments, questions and getting ready for procedures. I feel less anxiety having a team approach to my care instead of trying to manage it on my own and hearing the phrase, “I’ve never heard of Lynch Syndrome by a healthcare provider. My Lynch Syndrome journey continues as I remain vigilant with surveillance, educate my family and create awareness in my community.

Lynch Syndrome is a part of me but not all of me. I will honor my sister’s bravery. I am resilient. I am determined. I am vigilant.
I am Hopeful.

#PrevivorStrong #SurvivorStrong

Blog by Michele George