MENUA Uterine Leiomyosarcoma Survivor Story
Linda, a uterine leiomyosarcoma survivor shares her story
How did you discover that you had sarcoma?
I had a vaginal hysterectomy in 1992 in Houston, where we lived, and soon after, I felt a lump in my abdomen that was suspected fibroids. When I had surgery to remove them in 1995, the surgeon found fibroids as well as a tumor in my pelvis. The tumor was a surprise and turned out to be uterine leiomyosarcoma. The surgeon referred me to University of Texas-M.D. Anderson Cancer Center.
Can you describe your journey with sarcoma?
I had chemotherapy following the removal of the leiomyosarcoma. Then, a year later, the cancer came back in the same place, and I had more chemotherapy. I never had radiation. Four months later, I had a second recurrence, and the treatment wasn’t working. Then luckily the heart protector medication Zinecard became available, so I was able to have high doses of single agent Adriamycin as chemotherapy. So between January 1995 and the end of 1998, I was in and out of chemotherapy and had three abdominal surgeries. The high dose Adriamycin was a tough chemo only because I had just had two other therapies of about eight cycles each in quick succession. I needed red blood cell and platelet transfusions with almost every cycle. I had been through a lot. In October 1999, I felt some lumps in my abdomen. Remaining sarcoma cells from the 1998 surgery had led to a third recurrence of the uterine leiomyosarcoma. By 2000, M.D. Anderson had a designated sarcoma surgeon, who understood that leaving a cell behind can mean the difference in recurrence. On January 3, 2000, I had what I call my "Y2K" surgery,” which was a long and complicated procedure to remove the tumors. I had muscles removed from the left side of my abdomen and plastic mesh inserted in their place. I also had part of my colon removed adjacent to the tumors. I did not have chemotherapy at that point.
I went back to teaching and living a full life after one semester, although my energy level did not really come back for two years. In all of those years of treatment, there were twelve semesters (fall and spring) and I taught five of the twelve. I was really sick for seven semesters and some of the summers. I didn’t have that much sick leave, the English Department at the University of Houston, where I taught, helped me. When I was receiving chemo, I could do nothing: I didn't drive, my brain was fuzzy. I just gave in to the treatment. I have had inklings of recurrences, and I was the one who felt the tumors in my abdomen. I was going for follow-ups during that time. I had CT scans every two to four months. So I was perfectly happy, doing well for over nine years when, out of the blue, in August 2010 I was vomiting and miserable. When I went to the emergency room, doctors found a tumor pressing against the colon again as well as the bladder. I had single agent Adriamycin chemotherapy and surgery again. Of all the chemos I've had, quite frankly, that's the easiest to tolerate. This last round of chemo was only six cycles because my oncologist became ill himself. Since spring 2011, he has checked me at first every two months, then extended to every four months. So I go back to Houston to UT-M.D. Anderson Cancer Center (from Detroit, where I now reside) for surveillance visits with my oncologist, Dr. Robert Benjamin.
Did you have a support network when you were undergoing treatment?
I had a great support network in Houston. I had my husband and many friends who drove me to treatment as well as to the emergency room and also a book group. I had colleagues who donated their sick leave when I was having recurrences one after the other. The College of Humanities and Fine Arts at the University of Houston also carried me some way or the other. Legally, professors are entitled only to three semesters off, but I needed seven. Colleagues taught for me and I graded the papers. They were creative and generous so that I could keep tenure and remain on the faculty.
Were there any programs or services offer to you that helped with your treatment?
M.D. Anderson has programs at the "Place of Wellness" (they may have changed the name now) where I did tai chi, meditation, Qigong, and yoga. I love tai chi, which is continuous movement. I was introduced to tai chi at Anderson, and I went on to study with a Taiwanese master for seven years. I really took to it. I do tai chi every day, twice a day without fail. Separate from Place of Wellness, I was counseled by a nutritionist and saw a psychotherapist.
What do you believe was the key to your success?
I think two keys to my success are the fact that my doctor, Robert Benjamin, never gave up and my body was able to tolerate the treatment. He put me on an experimental regimen. Then when Zinecard came along, he switched me immediately from another protocol to high dose Adriamycin. I think he practices gutsy medicine. In general, Anderson physicians can offer difficult treatment because they are confident that the support services, especially their ER, can handle the complications: for me, blood clot, fever, punctured lung.
My husband has been enormously supportive, as is our son. Prayer and friends have been important as well. I never asked about statistics. You can tell me what the survival rate is, but my journey isn’t over. I'm not in those statistics yet. My doctor told me anything I wanted to know, but I never asked about survival because it didn't seem relevant. He told me about side effects of chemo and what to look out for; he was very forthcoming with information, but he is also quite positive. He is courageous so I just borrowed courage from him.
As a sarcoma survivor, what advice would you give others grappling with sarcoma?
I'll share what I said to Dr. Baker at University of Michigan when he asked if I am worried about kidney failure, diabetes, heart problems and other possible side effects from chemotherapy: I'm nervous just before January 11, the anniversary date of my diagnosis, I’m nervous a week before every checkup, but the rest of the time I just live. I told Dr. Baker that it seems ungrateful to sit around worrying if my kidneys are going to fail. If they do, then I'll deal with it. What have I been granted life for if I'm going to sit around and worry? I am so grateful. So I just go forward. I love to cook. I can eat. I travel. I can do pretty much anything I want to do. I taught for two more years after the last recurrence. I feel completely back to normal. I wouldn't presume to advise others because everyone is different. I have a friend who had rectal cancer, and she reports that her brain is still fuzzy five years after chemo. I'm really lucky. I don't think my brain is fuzzy at all. My brain does everything I need it to do. I have some ringing in my ears, I have GERD and osteoporosis. These are conditions that I may have had anyway, but perhaps they just came faster because of chemo or perhaps they’re unrelated. My wish would be that any survivor can enjoy life the best that he or she can with whatever limitations there are. I'm building a new life with my husband in Detroit, writing, starting a new book group, and making new friends.
Do you think you’ve done things differently because of your diagnosis?
No, I don't think I've done things differently because of my diagnosis. I continued to teach and do research. My husband and I became closer in the 90s. I stayed involved with my son. I studied tai chi, but maybe I would have sought that anyway. In 2002, just eight months after what I consider my complete recovery from the drastic surgery of 2000, my husband had a massive stroke. Caring for him these thirteen years has pushed the reality of my cancer journey somewhat into the background.
How did you first hear about the Sarcoma Survivorship Clinic?
I learned about the Clinic from Dr. Monika Leja. My doctors at M.D. Anderson knew I was moving to Detroit. Dr. Benjamin knows Dr. Leja well because she was a fellow at Anderson. So she is a cardiologist who is not only "cancer educated," but "M.D. Anderson educated." Dr. Benjamin thinks that Dr. Leja is my best chance for cardiac care. He knows that my heart is at risk because I've had so much Adriamycin. When I saw Dr. Leja, she told me about the Sarcoma Survivorship Clinic. Dr. Laurence Baker, a U of M sarcoma specialist, also knows Dr. Benjamin. He has offered to see me for my follow-up oncology care, so I have a great local back-up. When I go to Texas for my doctor's visit, my husband and I visit our son, his wife and our two grandchildren. It's also an opportunity for me to visit with old friends in Houston.