Aug 11, 2009 - 12:38 pm
My name is Sally Gray. I am 64 years old and live in Wichita with my husband of more than 40 years. I have 2 children and (finally) a grandchild due in late November. I have been a lurker on this forum since the latter part of May. I thought I should introduce myself because we truly need input from as many women as possible to help us all through the lack of precise information on optimal treatment for UPSC and what to expect from treatment.
At the end of February I had my annual exam with my PCP including the annual PAP test. She called me a few days later to tell me that cells su****ious for endometrial cancer had been detected and that I should make an appointment with a gynecologist for follow-up. I decided to schedule an appointment with a gynecological oncologist. I saw him late in March for a D&C. That procedure showed the garden variety of endometrial cancer and a complete hysterectomy was performed April 23 including the removal of only 7 lymph nodes and none of the omentum. He did perform a pelvic cavity wash. As the oncologist released me from the hospital a few days later he gave me my pathology report showing the typical endometrial cancer and said there would be no further treatment needed. The cancer was staged at just barely 1b grade 2. At my one-month post-surgery visit with the oncologist May 19, he handed me a revised pathology report. Further quality control review performed on the materials from my hysterectomy showed the additional presence of UPSC staged at 1a grade 3 and located in two spots, one where the cervix meets the neck of the uterus and the other a bit further up in the uterus. The oncologist told me I should begin chemo ASAP but certainly within the next 2 weeks. The therapy would consist of 6 infusions at 3-week intervals to hopefully boost my survival odds from 50-50 to 75-25. Of course I was devastated and overwhelmed. I could still barely sit up for a few minutes because of the residual pain from the surgery. I was still not able to drive a car. I took a shower only once or twice a week.
I immediately wanted a second opinion, but the only other gynecological oncologist in Wichita is my doctor’s partner. I quickly set about locating someone with whom to confer. I sent e-mails to many people across the country and around the world I had known through the years. A former exchange student currently in Dusseldorf with a specialty in breast cancer immediately set about trying to help me. He wrote to a colleague at Mayo who recommended that I see a specific gynecological oncologist in Oklahoma City. My slides were sent there and I traveled there and visited with the doctor and got a second opinion. He recommended only 3 rounds of chemo preceeded by vaginal brachytherapy and/or abdominal or pelvic radiation. He said there is no evidence of a better outcome with 6 rounds of chemo than with 3. He said that with UPSC treatment there is a lot of religion (tenaciously held opinions) without the much needed clinical trials to support a single treatment protocol. My own online research had discouragingly already shown me that there are a number of "treatment standards" which pointed to a lack of any standard. When I returned to the Wichita oncologist he still recommended the 6 rounds of chemo but agreed to set me up with an appointment to see a local radiological oncologist the following day.
I visited with the radiologist. At the end of our visit we both were left with several important questions and he was to get back to me with some answers. This was in mid-June. I had the chest cath for the chemo inserted the next day and began chemo the following day because there was no time by then to do radiation first. In early July I received a letter from the radiologist’s assistant with a schedule of 4 vaginal cuff brachytherapy appointments scheduled for the latter part of August but no answers to my questions. Yesterday I finally was able to schedule another consultation with the radiologist for August 17. I have (on my own with no guidance one way or the other) decided against pelvic or abdominal radiation at this time because I already have a very severe case of diverticulosis with occasional bouts of diverticulitis and am worried about the fragile state of my intestinal tract in the event of any slight radiological miscalculation.
I had my third round of chemo August 3. The last 3 rounds of chemo will be scheduled following the brachytherapy if I move along with that treatment.
I am tired with a bit of peripheral neuropathy in fingers and feet and have a few persistent strands of hair on my head. I have ongoing memory problems. I have not returned to work since the hysterectomy. I still have not gotten my act together to apply for short-term disability because I am the one who takes care of that kind of thing at the office and I just have not been able to get my mind wrapped around making up a job description to go with my paperwork. My oncologist originally gave me a 6-week leave for the hysterectomy. Unfortunately my fatigue and memory problems have made me too unreliable to do my regular job. I have managed to go in to do payroll twice a month, but it takes me about 3 times as long as it should because I have such a hard time keeping track of what to do - and I am the person who designed the payroll database we use! Obviously I am not paying myself to flounder around. Our staff is so sickly that the boss, my husband, has requested that I only go into the office on weekends and after work on weekdays to stay away from infections. I am so tired by the end of the day that working evenings is almost impossible. On the weekends I am too tired to work more than about 3 hours to accomplish a one-hour work product.
Thank you Barb and Linda for the Society of Gynecologic Oncology (SGO) review. I will take the info you provided to the radiologist and the gynecologist at my next appointments. It is pretty daunting when I feel that the doctors treating me are looking to me for guidance on how to treat me, but because this seems to be the case, I am looking to all of YOU for guidance as I chart my course. I look forward to Deanna’s cheerleading, and I agonize with Patricia on deciding how to proceed. I love how level-headed Mary Ann always seems to be able to cut through to the essential point.
Thank you all for just being there!