Jill Morgenstien's story

In December 2008, at 36 years old, I went in for endometriosis surgery. I was experiencing pain and the doctor thought it would be best to explore though he assured me it was Irritable Bowel Syndrome, which I knew I suffered from. Not knowing the signs of ovarian cancer, the day came for surgery and I went in thinking it would be easy with nothing to worry about since I have no family history of cancer.

When I wakened, the doctor visited and said I would be in pain but fine – he had to remove part of my left ovary but it would not impede me or my ability to have children because it was still functional.

Ten days later I went in alone for my post-op appointment where the doctor drew a diagram and explained I had stage 1 granulosa cell tumor ovarian cancer!!! He said I was lucky it was caught early and removed and that there was no need for radiation or chemotherapy. I would need to be checked every 3 months for safety measures. I walked out numb and shocked. Then the difficulty came of having to tell my family of this discovery. I was utterly confused considering the day before surgery I had ca125 blood work which showed no evidence of tumour.

As the doctor ordered, I went routinely for ultra sounds, blood work and pelvic exams. Everything was fine until spring 2011 – less than three years after my initial diagnosis when I started to have the same symptoms. Again I spoke to my doctors and was told all the tests pointed to me fine. My gut told me otherwise; I guess once you have a scare, you learn to listen to your body. Since the first surgery, I’ve had three additional surgeries for thyroid, breast lumpectomy, and gallbladder – all hormone related!

I insisted on a CAT scan and the results showed honeycomb masses in the remaining left ovary. My oncologist said let’s wait and see and at that moment I decided to be my own advocate and be more proactive. I found another oncologist specializing in women’s cancer and made an appointment with him – he got me in right away! I met with him on a Wednesday in November and by the following Monday I went in for “routine exploratory” surgery. I guess you should know when leaving a doctor’s office if he hugs you and your mother goodbye it’s not a great sign. My one hour surgery turned into four hours and the removal of my left ovary, fallopian tube, lymph nodes, omentum, and partial uterus as it showed my cancer had, in fact, returned.

Recovery was awful the 2nd time and was not helped by the fact that the doctor said I would need to wait ten days to find out if it had spread to my lymph nodes and if I needed radiation and chemotherapy. Now I had to wait, wondering can I beat this a second time? Can I make it through chemo and radiation? All of these thoughts were filling my head with nightmares! After ten days, the doctor reported I was extremely lucky to be one of the few where it had not spread and the surgery removed my cancer and again I did not need additional treatment.

I would need close monitoring and testing in addition to yearly God-awful PET scans. I happily agreed and I am diligent with my follow ups and care two years later. Unfortunately each day I wake up with thoughts of recurrence since I haven’t made my five year mark yet. I am grateful and appreciative of each daily blessing and I try to spread that to every person I encounter because you never know what battle they are fighting. People can look wonderful on the outside and feel awful on the inside. My biggest wish is that this story can help one person and their family and friends from suffering because of this disease.

For media enquiries please contact: cmackay@worldovariancancercoalition.