I am a 62-year old woman who was treated for carcinosarcoma in a Fallopian tube, and I live outside of Philadelphia, PA.
On Christmas Day 2012 I experienced symptoms – blood-tinged, watery vaginal discharge – that a post-menopausal woman should not have. WebMD.com suggested that I call the doctor right away. I did that the next day and was able to get in immediately. Saw the physician assistant who ordered pelvic and vaginal ultrasounds and offered to “look up there." I declined that offer, but did have the ultrasounds. The doctor’s office relayed the results by the end of the week – could be a cyst on the left ovary or chronic fibroids – with instructions to see a specialist immediately.
About a week later I visited a local gynocologist. With only the written ultrasound analysis in front of her and an external poke-around exam, the gyn told me that the ovary needed to be taken out immediately and at my age, I “didn’t need the rest.” She wanted to admit me for surgery four days later to do a total abdominal hysterectomy, and while I was on the operating table, the tissues would be sent to pathology. If any cancer was found, fatty tissue and lymph nodes would be removed, with the assistance of an attending local gyn-oncologist. She offered a prescription for Xanax. I demurred, saying that my husband and I had planned a weekend getaway – couldn’t I do that – and that I would seek a second opinion at University of Pennsylvania. She reluctantly agreed, and the slight body language response suggested that I had slapped her in the face. For the interim, she ordered a CT scan and CA125 blood test, which I obtained right away.
The CT scan revealed a cystic ovary; the CA125 was within normal limits.
With the results of the ultrasounds, CT scan and CA125 in hand, I consulted a leading gynecologic oncologist at Penn Medicine/Pennsylvania Hospital in Philadelphia, a week after that. His view was different. Because I was low risk for ovarian cancer (slender, not diabetic, good health, little compelling family history and test results that showed nothing alarming), he recommended removal of the ovaries and Fallopian tubes. This was done laproscopically on an outpatient basis on 1/28/2013. Surgery went swimmingly and recovery was swift.
A week later the pathology results came in. He called me with the “incidental finding” – a .9 cm tumor in the left Fallopian tube. The cancer was carcinosarcoma and highly aggressive. The pathologist thought it had been a mistake, consulted with him about risk factors and took a second look at the tissue samples to confirm the diagnosis. Next step: radical hysterectomy, omentumectomy and selective lymphadenectomy with chemotherapy to follow.
Surgery was performed robotically (only five 1 cm incisions) on Valentine’s Day and went well. Pathology results showed no other cancer in any tissue removed, including biopsies of diaphram, peritonetum and miscellaneous suspicious scar tissue. Home the next day. The “Tumor Board,” a committee of pathologists, surgeons and oncologists at Penn, concluded that the cancer was Stage I.
The hematologist oncologist recommended four rounds of chemotherapy – carboplatin/taxol. Each one-day treatment was weeks apart. I came through the treatments pretty well. Managed the nausea with Sea-bands, the constipation and heartburn with OTC meds. Hair fell out and I experienced mild peripheral neuropathy. Like most people, I felt pretty lousy on days 3 - 5 after a treatment. Oddly, my CA125 went up after surgery and was still higher that it had been in January before surgery.
The treatment is the clinical standard for ovarian cancer, since there are no other standards for this type of cancer (the hematologist described me as the “rarest of the rare”).
Chemotherapy ended on May 9. My hair began growing back a month later, and the mild peripheral neuropathy is gone. Have had two CT scans since May, both of which show two undefined masses that may be scar tissue. CA125 is in the single digits. The oncologist would like a CT/PET scan early next year, hoping that it will provide more definitive info. Surgeon was not concerned; thought the masses were post surgery scar tissue.
I feel quite good. Have recovered from surgery, though still get tired if I overdo it. A marvelous mindfulness class facilitated by an art therapist really helped me to work through the sense of loss that followed surgery and treatment.
CT scan and visit to the oncologist in late February. Scan showed that everything has stabilized; CA125 still in single digits, and oncologist said that I'm in remission. Only side effect is mild lymphedema in lower right leg. I'm feeling quite well now.