My name is Phyllis Adams. I will be 70 years old in November. I live in Spokane, WA. My family moved here after my husband retired from the Air Force. I am an Air Force veteran, a wife, mother, and grandmother. I worked as a Medical Laboratory Scientist for 20 years here in Spokane, in the transfusion service at the Inland Northwest Blood Center for 20 years. I retired in 2013 and life was just about perfect. My children and grandchildren live here. I put down deep roots in this community. I played oboe in two amateur orchestras, sang in the church choir and played in the hand bell choir too. I have refereed school soccer and volleyball. We went camping a lot. We love this place and the climate and people here. Life was just about perfect. Then, like a bolt of lightning, my life changes. Now I have been in treatment for a rare cancer, uterine leiomyosarcoma (uLMS), for 2 years. Here’s how I got here.
In January of 2019 I had a vaginal bleed. Since I was post-menopausal, I knew this could be a bad sign, so I went to see my primary care provider. She said “I don’t want to scare you, but this is cancer until it’s not.” I wasn’t too worried, partly because we didn’t know what was going on. I mean, we didn’t know if it was cancer or not.
The next step was to get a pelvic ultrasound. In March I had the ultrasound that showed a growth, but I was thinking “oh, fibroids; no big deal.” So I went to the gynecologist. He said that I needed a D&C and did an in office endometrial biopsy, which came back as normal. What a relief. So I had the D&C in April and they biopsied the ‘fibroids’. The next day I got the call from the gynecologist. I’m sorry, he said, but it is cancer. It’s called leiomyosarcoma. Well, I had never heard of it, so I still wasn’t very upset. He sent me to a gynecological oncologist.
A week later I had a PET scan, which showed cancer in my uterus and another small area of concern in the abdomen. I had a total hysterectomy in early May, and the diagnosis was confirmed. She had biopsied the area in the abdomen during that surgery, and that came back as normal tissue. Whew, another good sign.
I was considered stage one and the NCCN guidelines said the only treatment I needed was to be observed, which meant CT scans every 6 months. But I still didn’t know much about this cancer so I started researching it. The statistics were worrisome, but I thought I was cancer free.
Well, I found a Facebook support group and they said I should get a second opinion at a sarcoma center. The nearest one to me is Seattle Cancer Care Alliance, a 5 hour drive from Spokane. At first I thought I didn’t need a second opinion. But after a while, I thought what could it hurt? In July I had a video visit with a surgeon at SCCA. She said I needed a CT scan with contrast, because the PET scan didn’t include contrast. I got one, and that pesky little spot shone brightly on the CT and also found new bilateral lung nodules. And the previously present nodules had grown. She called and said it was suspicious for a metastasis. NOW I was SCARED! Those statistics I had seen were now downright frightening. Only 50% of people who were diagnosed after metastasis live for 5 years. I have never cried so much in my life.
I went to SCCA for a biopsy on that suspected tumor. Yup, it was LMS. It wasn’t necessary to remove that met, as it was very small and not causing any pain or other issues. By now it was August. After meeting with an oncologist at the SCCA Sarcoma clinic I began chemotherapy in August. I could get chemo locally in Spokane so that’s what I did. Around this time I also began seeing a counselor. She told me I had PTSD. My PCP then prescribed an antidepressant. I never thought I would ever need either of those. I am a strong woman and as my aunt likes to say, of Viking stock. I could handle anything! Right? Hmph, not so much.
After 2 treatments of doxorubicin, my oncologist ordered another CT to see how it was going. It was not going well – I had growth in all tumors. I was offered a clinical trial at SCCA, and I started that in October.
The study included the doxorubicin and a study drug. The study results were that I had stability, i.e. no growth. A bit of better news. But I had reached my lifetime limit of doxorubicin and had to leave the study. This is January 2020. I have now been dealing with this for a year with very little good news along the way. In March 2020 I had surgery to remove the abdominal metastasis because it had grown and was causing pain and was close to a major nerve to my leg. At this point, I have had ongoing issues with low blood counts so I had to take a chemo break, which of course was not good for my mental health. Boy, life is complicated.
I had another CT in May, and of course it’s not good news. More growth. Now they said here’s another study you qualify for and I said sure, let’s do it. I began this one in early June. A couple of treatments were postponed due to the aforementioned low blood counts. And finally, I was kicked out of the study for my own safety. The clinical trial included pazopanib (Votrient), so I continued on that alone. This now August 2020. I was taken off this drug too, for the same old reasons. OK, now what?
Now what is another chemo regimen, gemcitabine/docetaxel, which I began in October. That was going all right until I had a reaction while getting an infusion, followed by lymphedema in all four limbs. I had to find a special physical therapist to help with this as well as a new medication. And that was the end of that regimen.
In January 2021 I began another chemotherapy, trabectedin. This time, for the first time, good news! I have shrinkage! But the bad news, I keep having to postpone treatments. You guessed it – low blood counts. Sigh. I had my last one July 6th. So, another chemo break. But now some of the lung mets are causing pain so we, the oncologist and I, decided to try radiation therapy. I needed to be off chemo for that anyway, so this was a good time to do that. I had those treatments in the middle of September. They seemed to do the job – no more pain. Yes!
I am scheduled to start trabectedin again next week. So I have been in treatment for 2 years. I have been having to do a lot trips to Seattle. It was required for the clinical trials. My specialist is there. And it’s very hard to coordinate treatments when the providers are so far apart. And my local oncologist is now part of a national group and extremely busy. The other cancer center in Spokane isn’t taking new patients. So when I decided to do the radiation treatments I also decided to get all my treatment in Seattle. That was a hard decision as it is expensive to go over there so often, and I usually have to stay at least 2 nights. That’s a financial burden. It’s a burden for my family, who accompany me. And of course, there’s the emotional toll – never knowing when the next bad news will come. It’s been hard not to be able to do all the stuff I used to.
It’s been difficult – making decisions, dealing with all the emotions, all the travelling, the financial parts of it, and the side effects of treatment. It’s exhausting. I miss seeing my friends. It’s almost 3 years since I first had any inkling of this disaster. And that’s how I got here.