Dealing with a cancer diagnosis is not easy.
There are treatment options to consider, possible prognoses that give patients limited amounts of time before the illnesses claim their lives, the physical toll the illness and treatments can take on a patient’s body, the financial burden of medical bills and more.
Things can get even more difficult when it is a rare form of cancer such as the one Marilyn Farrell has.
In April 2010, the 70-year-old was diagnosed with leiomyosarcoma (LMS) of the uterus, an unusual and aggressive soft-tissue cancerous tumor.
LMS is so rare that when Farrell visited the Cancer Education Center at the Mayo Clinic in Rochester, Minn., she and the librarian only found 14 mentions of treatment for the disease.
When considering treatments, Farrell, who lived in Kirkland for 35 years before moving into Emerald Heights retirement community in Redmond about eight years ago, initially did not want to undergo chemotherapy.
“Because chemo killed you,” said Farrell, who worked with Cancer Lifeline in Seattle during her late 30s and met a lot of very sick cancer patients at the time.
Before deciding on a treatment plan, she sought a second doctor’s opinion at the Seattle Cancer Care Alliance (SCCA). Her first doctor was with Group Health. Farrell said the environment at SCCA scared her because it was full of really sick people. So she went back to Group Health and decided to do chemo.
She went through six rounds over the course of six months and had a hysterectomy to remove most of the tumor. Farrell said surgeons could not remove the entire tumor at the base of her uterus because it could possibly leave her paralyzed or spread even more.
After the initial treatment and procedure, she said her scans looked good and she considered herself cured and done with treatments. But when she went back to the doctor six months later, they found more growth on the remainder of the tumor.
So Farrell underwent another six rounds of chemo and test results showed that there was no more new growth in the tumor. But just like the first time around, her six-month followup scan showed the tumor growing once again.
Farrell underwent another six rounds of chemo — this time with different drugs.
At one point in her treatment regimen, Farrell, whose hair was falling out due to the chemo, also underwent radiation treatment.
In spring of 2014, Farrell recalls sitting in her doctor’s office and having him ask her what she had planned for the upcoming year. She told him a nephew was getting married that September and in response, her doctor told her that she probably wouldn’t be feeling too well at that point.
Farrell took that to mean that she wouldn’t be around anymore.
But instead of taking her doctor’s words as a death sentence, she decided that any day she was able to just get up and put on clothes was a good day.
Farrell said aside from feeling fatigued from chemo, she did not feel bad.
SUPPORTIVE TEAM MEMBERS
Ever since she received her diagnosis, Farrell said she has learned a few important things when it comes to dealing with cancer.
The most important thing she has learned is that cancer patients “need to put together a team of people” to support them — and not just one made up of medical professions. In addition to her Group Health doctor, Farrell said her team includes a naturopathic doctor as well as Hartmut Stecher, the founder of Cancer Treatment Navigator (CTN).
Stecher began working with Farrell in December 2012, initially helping her by giving her an overview of cancer, how cancer cells work, what the disease does to the body and different treatment protocols.
Farrell said this was exactly what she was looking for.
After that, Stecher started looking into clinical trials that could possibly help Farrell. He found one and Farrell was able to get into it. She said the trial worked for about seven months before her body developed a tolerance — something they discovered with all the treatments she has received.
Farrell then began taking chemo pills, which worked for two years before her body once again developed a tolerance.
Since she went off the pills a few months ago, Farrell has not been taking much medication — only Tylenol as she has begun experiencing some pain and discomfort — and she and her team are trying to figure out what to do next. She said she was referred to an LMS expert at the SCCA and if and when he has a clinical drug trial, she hopes she will be able to get in and that her insurance will be able to cover it.
Stecher said CTN operates independently from the health care system and helps cancer patients with navigating clinical trials, which is a big vehicle for getting new drugs and medications to cancer patients.
Half of CTN’s focus is on the clinical trials and the other half is focused on other non-standard treatments.
Stecher said he started CTN because everyone — one way or another — is touched by cancer. Prior to founding CTN about four years ago, he spent 25 years in bio-medical research, focusing on cancer. As a result, he would often have family and friends contacting him for his expertise and advice. He said a neighbor came to him when her brother was diagnosed with a rare and aggressive case of cancer. Stecher found a clinical trial for a different type of cancer that he thought could help his neighbor’s brother and as a result, the other man went into remission.
“It was such a wonderful experience,” he said about being able to help the family.
Stecher said the neighbor’s family told him he had to offer his expertise to others because his help was invaluable — something they couldn’t have done without him. He added that this type of service was not something cancer clinics are able to offer as they are focused on the day-to-day care of their patients.
“I wanted to bridge that gap,” Stecher said.
In addition, Stecher is also aware of programs that help with covering the costs of drug trials and treatments as sometimes insurance won’t.
This was something Stecher helped Farrell with, as well, as the chemo pills she was on for two years were not covered by insurance and would cost about $8,000 a month. He directed her to a patient support program at the drug company and she was able to receive the drugs at a reasonable price.
Farrell said if it weren’t for Stecher and CTN, she would not have known how many options she had for treatment and for a cancer patient, options mean a lot.
“What does that do to my mental health?” she asked, getting emotional at the thought. “Big deal. It gives hope.”