jbx's Journey:

For over year complained to PCP about reflux, vomiting, weight gain. Was told to take antacids and diet. Eventually went to urgent care after 3 days of vomiting and frequent urination. Urgent care sent me to ER with suspected appendicitis. ER performed CT scan and found suspected ovarian tumor.

Was referred to local ob/gyn who performed emergency right side oophorectomy. Thought I had a ovarian cyst. During my visit to remove surgical staples was told had ovarian cancer. Referred to gyn oncologist at large teaching hospital.

Six weeks after emergency oophorectomy had an ex-lap to confirm staging. Oncologist advised against chemo or hysterectomy. Had follow-up CT and trans vaginal ultra sound every 3 mos. then every 6 months for next 3 years. Was released from his care back to my hometown ob/gyn. Oncologist never discussed other cancer risks with me. Led me to believe because cancer was stage 1 I was in the clear.

About 4 1/2 years out from original diagnosis began having gyn symptoms. Primary gyn performed endometrial biopsy. Confirmed endometrial cancer. Referred me back to same oncologist. Not wishing to return to him I quickly sought referral to another oncologist.

New oncologist performed total hysterectomy. Had very detailed discussion of family medical history and referred me to genetic counseling.

Had phone interview with genetic counselor and was sent large family history packet to complete before face-to-face appointment with her. Family medical history was shocking to me. Even though I'd been diagnosed with cancer in 2002 my father never mentioned that his father had passed away from colon cancer. Never spoke about family cancer history with me. Dad's family is large. His father was oldest of 11. Six of them passed away before age 30 of cancer. Spent nearly 3 months tracking down Dad's family and compiling medical history.

Made decision to have genetic test to confirm what the geneticist and genetic counselor suspected. I have gene defect that causes Lynch Syndrome and Turcot's Syndrome. Shared test results and recommendation with extended family that they speak with a genetic counselor and understand their cancer risks - possibly be tested for Lynch Syndrome. Only five people out of about 50 family members spoke with a counselor and were tested 3 of them have the gene defect.

In 2009 Dad was diagnosed with stage 4 brain cancer (GBM). He was 66 years old. Never had any of the other common cancers associated with Lynch but the cancer with the least risk, brain cancer was what he developed. He passed away in February 2010 seven months after his diagnosis.

In 2008 I began recommended annual screening for all cancers associated with Lynch and Turcot Syndromes. To date I have been diagnosed with Barrett's Esophagus and Epilepsy. Have had biopsies taken during past two colonoscopies for suspicious looking areas. Just ares to watch. No cancer yet. Esophagus is stable. Brain MRI shows no changes for past two years. Have had numerous per-cancerous skin lesions removed in past three years.

Celebrated 10 years of surviving in August 2012! I am huge advocate of knowing your family history and being screened. My first cancer was found at stage 1 by a fluke. My second was diagnosed at stage 1 because of conscientious follow-up. Early detection = long-term survival.