Meet Long Term Thriver, Michelle Russell
By Michelle Russell
11/17/24
In February of 2015, Michelle experienced abdominal pain from several fast-growing uterine fibroids. Her abdominal pain worsened, and in October of 2015 she had a total hysterectomy with removal of the fibroids as well.
The post-surgical pathology report showed necrotic tissue in the fibroids, and Michelle was diagnosed with stage 1-B high-grade uterine leiomyosarcoma. In addition, the pathology report documented the fact that the uterus and fibroids had been morcellated and removed using a bag. The bag had fallen open during the surgery and the morcellated tissue, including the leiomyosarcoma cells, had spilled out into her abdomen.
The surgeon, however, neglected to mention this, and told Michelle she had clear margins. When she and her partner read the pathology report and came back to him with questions, he told them that he would only tell them what he thought they needed to know. Needless to say, they never went back to him.
From December 2015 to April 2016, Michelle had adjuvant chemotherapy using gemcitabine and taxotere (gem/tax). During this time in February 2016, she was hospitalized for a pulmonary embolism and was prescribed Xarelto, a blood thinner.
Michelle remained tumor-free until November 2018, when a PET scan revealed an 11x9x12 cm tumor in her pelvis near the bladder. A month later, she had surgery to remove this large tumor and several smaller ones. That surgeon told her that he was not sure he’d gotten it all because the cancer cells were “splashed all over the abdomen” due to the morcellation and spillage from her hysterectomy.
Sure enough, more tumors emerged, and Michelle began seeing a surgical oncologist at The University of California, San Francisco (UCSF). After five cycles of doxorubicin from February to May 2019, she stopped the chemo because it wasn’t working. The doctor told her she had 3-6 months to live.
Michelle then saw Dr. Thierry Jahan, a sarcoma specialist at UCSF. He immediately stated, “You’ve got quite a bit more than 6 months!” He gave her back her hope.
In November 2019 she started a clinical trial with Votrient (pazopanib) and abexinostat. This gave her stability for months, allowing her to work at her job for a CPA firm. She had a good quality of life, but in May 2020 she had to go off the trial due to low platelets and a gallbladder attack/surgical removal.
Dr. Jahan retired in June 2020, and Michelle began seeing Dr. Kristen Ganjoo at Stanford. Dr. Ganjoo started her on dacarbazine in December of 2020, and added gemcitabine in January of 2021. This combination resulted in some tumor shrinkage.
On June 4, 2021, Dr. Byrne Lee (Stanford) performed HIPEC (hyperthermic intraperitoneal chemotherapy) surgery, first resecting all visible tumors as well as 7 cm of Michelle’s large intestine. For the HIPEC portion of the procedure, he used heated cisplatin to wash her abdominal cavity and let it sit in her abdomen for over an hour.
Michelle spent two weeks recovering in the hospital due to infection and a high fever. Then, one day at home several weeks after the surgery, Michelle leaned forward and the outer part of her post-surgical abdominal incision burst open from belly button to pelvis. She went to the emergency room at Stanford, where they stitched it back up. “That whole experience was truly frightening!” she says.
From July to November 2021, Michelle tried immunotherapy with Yervoy and Opdivo. Unfortunately, she had to stop when her liver function became elevated.
Since then, however, she has been NED (No Evidence of Disease) for over three years. She remembers a recent follow-up appointment when Dr. Ganjoo told her, “We’re about the same age. Let’s grow old together.” This gave Michelle a great deal of hope for the future.
When asked how she copes, Michelle shared that her long-term partner Stacey does the majority of the cancer-related research for her, passing on only what is useful and filtering out what is unsubstantiated and potentially scary. She has also learned to have patience with the healing process and compassion for herself.
Michelle advises new leiomyosarcoma patients to be critical thinkers when dealing with doctors. Ask questions. Make them explain things to you. You are paying them, so don’t feel guilty—it’s their job. Also, remember that doctors are human and don’t know everything. No matter what a doctor tells you, check in with yourself as well. “You are not just a statistic—you’re a person. Statistics may or may not apply to you,” Michelle says. “Stay in touch with your own body and listen to what it tells you.”