Nancy Vignola
Long Term Thriver Story
By Nancy Vignola
10/15/22
15-Year LMS Thriver
“Life is what happens to you while you’re busy making other plans”—John Lennon
My life was going well in January 2007! I had great friends, a wonderful job teaching first grade, and good health. Or so I thought…
We had just returned from Christmas break and were settling back into school, when I began experiencing pain in my lower right abdomen. I also had a slight fever, so my principal sent me home. As I drove home, the pain intensified, so I detoured to the emergency room.
I was ushered back for an examination, where it was decided that I needed an abdominal ultrasound. The doctor on duty thought I might have appendicitis, but it turned out to be a large fibroid. This was surprising, since I had visited my gynecologist three months before with no mention of a fibroid. Since I was fifty-one and extremely unlikely to want more children, I decided to have a hysterectomy. I am grateful now that my primary care physician (PCP) convinced me to have my ovaries removed as well.
The surgery was quick and uneventful. My gynecologist assured me that only 1% of fibroids are cancerous, and I felt good about the decision to have a full hysterectomy. A week later, I returned to my surgeon’s office to have the staples removed. When that was done, my doctor asked if I had had someone accompany me to the appointment; if so, she said, she would like that person to come back with me while she discussed “next steps.” I thought that was odd but consented.
The next few minutes were like a slow-motion nightmare. My doctor explained that the pathology report found that I had “a rare and aggressive cancer called leiomyosarcoma.” She also said that she had researched specialists who treated this rare cancer, and she had already made an appointment for me for the next day. I am forever grateful that my gynecologist recognized that this sarcoma needed an expert!
The ride home was awful! As soon as I got home, I began researching leiomyosarcoma on the internet—a big mistake. Everything I read was negative, out of date, and frightening! I was going to die!
The initial meeting with the sarcoma specialist helped to tamp down some of my fears. The doctor reassured me that the surgery and pathology report indicated clear margins and explained that I would have CT scans of my chest, abdomen, and pelvis every three months for two years, then every six months, and eventually every year until year ten.
During the next few years, my personal life was in turmoil. I divorced after a twenty-two-year marriage, and I was dealing with my dear son’s bipolar disease and addiction as he self-medicated to feel better. In 2011, I lost my son to mental illness and addiction. This was a devastating and bitter blow.
A few years later, I was blessed with a wonderful new relationship and marriage. Through great previous emotional pain, I learned a lot about what is real and what is important. I was truly blessed!
I continued to follow through on all my scans for ten years with No Evidence of Disease (NED)! I was free and best of all, cancer free! How I wish that had been so.
At year thirteen, I had a routine mammogram, which showed tiny calcifications in my right breast. I had a diagnostic mammogram with the same results. I went on to have a breast biopsy to determine if this was indeed cancer; it was. I was diagnosed with DCIS, a stage 0 cancer. My PCP recommended a breast surgeon at the University of Pennsylvania. We met for an initial examination and planning for a lumpectomy. She also offered me a bilateral breast reduction and lift at the same time as the lumpectomy. I agreed—I might as well get perky new breasts out of this deal!
I had the usual pre-surgery testing. My blood work was great, but a chest x-ray showed a mass in my left lung! I could not believe this. My breast surgeon made a call to a great thoracic surgeon at the University of Pennsylvania. I saw her for an initial consultation and had a lung biopsy a week later. The biopsy indicated that uLMS was back after thirteen years. Now I was facing the breast surgery, then a thoracotomy one month after that! To say I felt overwhelmed would be an understatement. I thank God for my husband and the many family and friends that kept me from “jumping off the ledge.”
I had the breast surgery with no issues and recovered quickly. The surgeon said that the DCIS was so tiny, it was removed when I had the breast biopsy. I was quite happy with my new, improved breasts! I was to begin radiation treatments after I recovered from my lung surgery.
Of course, life gets complicated sometimes, and my mom was hospitalized with pneumonia a week after my breast surgery. She was there for one month and was diagnosed with dementia. She could not live alone any longer, so we decided to have my mom live with us. And then
Covid-19 hit America and the world. Everything was shut down, including most surgeries. Fortunately, my surgery was not canceled.
So, a month later, I found myself back at the University of Pennsylvania for VATS surgery on my upper left lung. I was blissfully anesthetized and awoke to the news that the robotic machine had malfunctioned, and I had had the “big surgery,” or full thoracotomy. There were to be no visitors due to Covid-19, and I went home three days later to recuperate and prepare for my mom to be released from her hospital stay and come live with us.
The recuperation was difficult, but I worked hard to regain my strength. I did physical therapy in my home and walked when I could. The bonus was losing twenty-five pounds from the ordeal of two big surgeries in one month! I was overweight, so this was a good thing for me. There is always a silver lining!
I began radiation treatments about six weeks later for the breast cancer and resumed my CT scans every three months. I felt good and positive. I was well cared for at a sarcoma center, with doctors I trusted who were happy to collaborate as a team in all healthcare decisions. I cannot stress enough how important it is to be treated at a sarcoma center! It is also essential to have a good relationship with your care team. I was respected, listened to, consulted, and received great empathy from everyone on my team.
My life went on through the next year, with clear scans every three months. Unfortunately, I only got one year of NED. A CT scan caught an enlarged lymph node in my right axilla (armpit). I wanted it removed immediately, so my lung surgeon scheduled me for surgery in three days. Compared to the other surgeries I had had, this was an easy one. Of course, the pathology report showed that uLMS was back.
At this point, my sarcoma team submitted my case to the Tumor Board, which meets every week to review cases and suggest a plan for the patient. It was determined that the uLMS in the axilla was positive to the inked margins of the tissue removed, so they recommended I have a second surgery on the axilla to remove more tissue and get better margins. A month later, I underwent this surgery and had another quick recovery.
I again began the CT schedule of every three months. I have just reached one year NED from my most recent recurrence, and fifteen and a half years since my initial diagnosis of uLMS. I did not find the Leiomyosarcoma Support and Direct Research Foundation (LMSDR) until I had my first recurrence two years ago. I have learned so much from the wisdom and experience of the warriors I have met through LMSDR. It has been more than just a Facebook group; it has been a lifeline to me and countless others. Immerse yourself in the group! View the bootcamp videos and ask questions. You will gain valuable information, updates on the latest LMS advances and trials, compassion, and greatest of all—HOPE!
