Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email us at 2LMSDR@gmail.com
Sharon Anderson, 13 Year Thriver
No chemo or radiation, just surgeries and adjuvant Arimidex
I opted for a myomectomy to remove a large uterine fibroid in January 2002. I had no symptoms or problems… but a close friend had just died from ULMS that year, so something inside urged me to get it out. It was LMS, 6 x 9 cms. with a mitotic rate of 10/10hpf.
I was 43 and never thought I’d make it to now… 56 years old. My gyn onc said I only needed an annual chest X-ray. I joined the ACOR support group and was immediately warned to get CTs of the chest, pelvic and abdomen every 90 days. It saved my life. There was a 1 cm. lung metastasis growing. I had VATS – video assisted thoracic surgery to remove it. I was hiking two weeks later.
I volunteered for a vaccine clinical trial at Dana Farber. I flew from San Francisco to Boston every other week. During the trial I developed a fast growing tumor in a chest lymph node – which was surgically removed.
Next, I asked my onc to test my original tumor for hormone receptors. When we found them to be 99% positive for estrogen and progesterone, I fought my insurance to get my ovaries removed. Then I started an aromatase inhibitor, Arimidex, to prevent any estrogen being made post menopause. I have been NED – no evidence of disease – since then, 11 years. I stopped the Arimidex a few years ago because my bones were thinning. I take calcium, vitamin D3 and exercise.
My big battle has been depression after I lost my ovaries/estrogen. I saw a psychiatrist who finally helped me with 3 different anti-depressants. Each one helped replace a low “happy chemical.” It was a life saver. I really mean it.
Two “therapies” help me stay sane. I play and teach taiko drumming. The other is my advocacy work for Leiomyosarcoma Support & Direct Research Foundation. People thank me a lot, but I’m the one so grateful for being able to work, not wish, for a cure. Being able to do something makes me feel better.
UPDATE: as of 2019, Sharon is now still NED and a 17 year Thriver!
Suzy Allen, 14 Year Thriver
When I was diagnosed with uterine LMS in June of 2001, I had 10% chance surviving 5 years. I believe diet is a big part of my survival. I have survived 14 years “against the odds” and the only thing that has been consistent since 2008 is eliminating sugars and gluten (celiac dx 2008.)
Between 2001 and 2004, I had lung mets. My treatments were AIM, Gemzar/Taxotere, Iressa and five thoracotomies. In 2003, I stopped eating sugar of all kinds for 90 days. They were monitoring another lung met. After 90 days the PET/CT showed the tumor cavitated. My doctor was shocked. I was not undergoing any chemo and the only thing I changed was my diet. Due to stress, I started to have my Starbucks chai lattes and scones again and the next 90-day scan showed my tumor was growing.
From 2004-2008, I had 4 years of NED (no evidence of disease) until 2008 when I had another thoracotomy. When lung mets returned in 2013 I had cyber knife and took Tamoxifen for a few months. I’ve been NED since.
Set boundaries on how you will discuss your cancer with people. It’s OK to not discuss it if you don’t want to. Many times I would be out at a party having fun and someone would discuss my illness. I went home feeling bad. I had finally forgotten about it, and there I was rehashing and reliving my nightmare, when I really wanted to move forward.
I stopped focusing and discussing my illness and treatments 90% of the time, and instead focused 90% on living, health and wellness. I started to journal my thoughts. I wanted to experience joy, fun and make new memories with family and friends and not spend lunch or dinner discussing cancer. It made me feel bad and I didn’t want to feel bad anymore.
Focus on what you have, not what is lacking. I spent many years angry about what cancer had taken away from me. I fought so hard to live my life, and I realized I was not living that life. I learned to forgive, move on and appreciate the life I fought for.
Caroline Abbey, 11 yr. Thriver
STUMPING LMS with Letrozole
I had a total abdominal hysterectomy in 2004 because of growing fibroids. A 5 cm. tumor was found. Slides were sent to Harvard for a second opinion who deemed it “a most difficult case.” They reluctantly classified the tumor as STUMP – Smooth Muscle Tumor of Unknown Malignant Potential. I was told there was only a 1% –2% chance of a recurrence. There was no follow-up at all. I continued taking hormone replacement therapy pills for the next 7 years.
Lucky for me, my company required a chest x-ray in 2011. Diffuse nodules were found in both my lungs, at least a half dozen between 1 to 2 cm, and many smaller. The following CT scan 3 months later showed considerable growth. A thoracotomy revealed these were leiomyosarcoma. The mitotic index was 6, much greater than the “less than 1” in the original STUMP tumor.
My tumor was 78% positive for estrogen receptors and 82% for progesterone receptors. Dana Farber put me on the aromatase inhibitor (AI) letrozole, a tiny yellow pill taken daily. Within a few months, there was considerable shrinkage, which eventually made most of the lung nodules cavitate. My tumors have become “indolent” and I’ve been progression free for the last 3 years.
The AI brings some joint pain, and of course, hot flashes. My bone density is now in the osteopenia range. I’ve been taking vitamin D, and my last bone density scan showed stability over the past two years. I’ve stayed active, golfing, kayaking and hiking.
UPDATE: 2019 Caroline and her husband just celebrated their 50th anniversay together!
Sarah Ailey, 12 Year Thriver in Chicago
Part luck, part assertiveness
I was diagnosed with uterine LMS in April of 2003. My tumor was 6.5 cm and highly estrogen positive. I was lucky. I had a gynecologist who sent me for pelvic “ultrasounds” every two years. The gyn onc who did the surgery had been involved in ULMS studies and he knew what he was looking at right away, so the surgery was done correctly.
I flew to New York and consulted with Dr. Samuels at Memorial Sloan Kettering. He recommended a new chemo combination called Gem/Tax, rather than the traditional AIM (Adriamycin, ifosimide and mesna.) I opted for an adjuvant 6 cycles.
There were a couple of fellow LMS list group members with estrogen sensitive tumors, on a breast cancer drug Femara (letrozole) with success. I brought everything I had on it and insisted the oncologist prescribe it for me after the chemo. I took Femara 5 ½ years with no recurrences.
At 8 years my onc suggested I stop scans. I told her the protocol was 10 years. And at 10 years, a precancerous lesion was found on my pancreas. I no longer have the pancreatic tail and dodged that bullet. I have been NED (no evidence of disease) since.
Peggy Chalk, 11 Year Thriver in Tucson
We cannot know
When I was diagnosed in 2004, I remember refilling my daily mini legal pad notebook from the stack of Costco pads and thinking that this was the last pack of pads I’d ever need. The joy of needing another package made me giggle…the next year.
And the two throws I knit for my young daughters so they’d have something to snuggle with and remember Mom are now pretty worn. My younger daughter, whom I prayed to see graduate from high school, now uses it on her dorm couch where she and her roommates use substances for which they are not yet of legal age (disappointed mom).
Oh, and now that I am off SSDI and back to work, I am thinking that I better save more for retirement that I expected not to reach (10 years away).
So, I understand the sadness, and hope you can focus on the moment and find joy. We cannot know the length of our time here but we can do our best to make it good.
Life is a blessing
I was diagnosed in September of 2000 with a large retroperitoneal LMS tumor that involved my left ureter. Margins were not clear. My left kidney was removed in January 2002. Radiation followed. A recurrence in my colon was removed in April 2003. After three rounds of MAID I stopped the infusions due to side effects.
The next occurrence was removed from my right upper hip. I retired on Social Security Disability in 2003 due to cognitive issues. I was a practicing registered nurse in a large urban hospital and my workplace sent me for testing. It took me a day and a half to complete what should have been 6 hours or so of testing. Needless to say I flunked!
The scanxiety in the beginning was awful. I felt as if I was on a gerbil wheel every three months. This went on many years. I have seen a therapist off and on for many years to help me deal with this anxiety.
My life is a blessing! My only son has married a wonderful woman and I have my first grandchild. I didn’t think I would live long enough to see that baby. I am active and involved in many things. I’m goofy but my family and friends have helped me through this journey!
If you have survived leiomyosarcoma for 7 years or more – please share your story with us! Email 2LMSDR@gmail.com