To all uterine cancer survivors and those undergoing treatment I will share my story. I have been hesitant because I wonder if someone with cancer ever really feels "out of the woods," but here goes:
Age 42 (2007), three teenage girls, divorced. Had some abnormal bleeding that I thought was a birth control pill mix up, but diagnosed with and endometrial polyp. D and C revealed a polyp but "a few questionable sarcoma cells." I am a physician and asked my gyn "what the hell?" He sent the tissue to CA for histochemical staining and it came back NEGATIVE for cancer. Six weeks later, I began bleeding again and went for my post op check up thinking it was my normal period only to find out the mass had re-grown. I was living in post Katrina New Orleans and decided this was no place for cancer treatment and went to Dallas, where I had family and friends, taking my twin teenage daughters with me (this is where they relocated after Katrina and wanted to go back there). My older daughter was in her junior year and elected to stay in New Orleans.
I had an appointment on the following Tuesday but began bleeding heavily on Friday. Went to ED on Saturday feeling fine except for the bleeding. Admitted and burned with Monsel solution (a whole different story), but ultimately had an emergent hysterectomy on a Sunday night. The surgical oncologist basically said he thought I had an aggressive form of cancer with a poor prognosis. You can only imagine how well that went over! Pathology came back as carcinosarcoma (MMMT) of uterus with invasion levels just mm deeper than they would have liked and while no lymph node involvement they could detect, I had lymphovascular involvement. So, now they recommended 27 whole pelvic radiation treatments with two of those being high dose vaginal cuff treatments (lovely). Finished in November, commuting to New Orleans throughout. December's screening CT showed nodules in my lungs. Repeat in January showed they had grown one millimeter! My CT surgeon was a godsend and insisted they come out. January 21, 2008 I had a bilateral lung resection and 2 0f 8 nodules were positive for rhabdomyosarcoma one of the mullerian tumor types that was chemo sensitive. I was off to Sloan Kettering where a fabulous sarcoma specialist said I needed aggressive chemo starting NOW ( I had not been able to get a good answer to my chemo question before this and was relieved that someone would just weigh in). Back to Dallas for 6 rounds (3 inpatient days every 21 days) of chemotherapy. I had a port placed and continued to work in New Orleans by commuting and telework from my bed at home and on the chemo ward. I don't have to tell any of you that it was six months of hell but with the support of my friends, family and co-workers, I finished in June of 2008. I moved back to New Orleans after Hurricane Gustav (september 2008) as my work required me to be in the City and I believed my twins needed to be near their father with the less than favorable prognosis.
Ladies, I have/had Stage 4 uterine sarcoma and I have never felt better almost 4 years later. The prognosis was dismal as you know, but I just prayed for a little more time with my girls and kept as positive an attitude as I could (some days it was easier than others and still is). I continue to be vigilant with my check-ups although the doctors want to back off the every six month CT's which makes me nervous, but I have to do it sometime.
For all of you out there that may have this please know the news is not all bad. It is a mind-body challenge every day, but it can be done. I have never shared my story so not sure where to go from here. I know women's cancers are a difficult thing to discuss in a public forum but I believe we need to stick together, speak up and demystify them. There are definitely side effects that change your life but they are manageable and there is power in knowledge and cohesiveness and speaking up and out.....J