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kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

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 suspicious 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!

Sally

Kris Ann
Posts: 26
Joined: Jan 2009

Hi Sally,

My mom Judy is 63 and was a stage 4 with upsc/clear cell cancer..she was diagnosed in March of 08. She had 4 chemo rounds. 30 whole abdominal radiation rounds then 4 brachy therapies. The chemo went well for her. The radiation started good but got really rough after about week 3. She took 1 week off then finished the rest.. then the 4 brachies which went fine. She finished those in Oct of 08.. by December of 08 she was starting to get belly aches and her ca-125 went up a bit. She ended up back in the hospital in late march of 09 with an intestinal obstrucion caused by radiation.. to make a very long story short they ended up having to do surgery on mothers day weekend of this year to remove the damaged intestine that he thought would be cancerous..

The turn out went well.. pathology completely negative for cancer. Then he thought there was a lymph node and that is fine as well.. she just had a ct-scan this past sat. and I got results last night that she is fine.

So there is hope no matter what stage your at.. never give up. My mom is doing fine now. We are leaving for vacation to the beach on Sat.. she can eat and has energy and is slowly gaining a little weight back. She goes to Dana Farber in Boston. They are very positive and helpful there. I am her proxy and i go with her to everything. And she is okay.. as you will be too. Never give up!!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome Sally. Your story sounds very interesting - what a roller coaster ride. First good then bad news. I like your attitude - get informed and advocate for yourself. I wish you the very best. I recommend staying positive and making a CONSCIOUS DECISION to be WELL - not just a sick cancer patient. I'm glad you are stage 1b. Seems like they do blend together with the UPSC thing. Stats are daunting no matter what.

And thanks, Kris Ann, for the encouraging news about your mother. It does give me more hope.

Stay positive and take heart, ladies. God Bless you all. Be well.

Mary Ann

deanna14
Posts: 733
Joined: Oct 2008

Sally,
I am so glad you have taken the bull by the horns and are advocating for yourself. It is very scary that there is little data on UPSC. Yet, we steadily gain more and more sisters here on this thread. Maybe they should be studying us!
I think despite your lack of physician guidance that you are receiving the right treatments. I am Stage IIIC and I had the same chemo, 3 brachy and 25 external radiation. I can understand not wanting the external radiation, especially in light of your diverticulosis. I will tell you though, I have not had any lasting intestinal side effects from the radiation.
Good luck with the remainder of your treatments and God bless you. Keep us posted on your progress.
Hugs,
Deanna

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