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
LINDA JOY, 17 yr. Thriver
FEAR, LOATHING, GRATITUDE and JOY
These four words describe my journey with LMS.
Fear: First, it was hearing the word cancer and then leiomyosarcoma of the retroperitoneal – it was ‘What?!!’ of ‘What?!!’ Next came fear of the unknown: scans and the results, recurrence, another surgery possibly affecting quality of life, chemo, blood transfusions, etc.
Loathing: I loathed the interference in my life. LMS arrived just after getting married and my career peaking. I loathed: considering cancer when making decisions for the future, the feeling of exiting life while the world went on normally around me, the long-term fatigue, being defined by cancer.
Gratitude: At 67 and a 17-year survivor, I now look back with overwhelming gratitude (not to say I still don’t have twinges of fear). I am grateful for life, the love and support of my husband, sister, parents and friends, excellent doctors during my early journey, new friends, the ACOR listserv, getting real with being vain.
Joy: On a personal note in cancer defiance, Joy is my middle name. I decided to adapt it as my surname in 2000 for the listserv because I was adamant that cancer was not going to steal my joy.
Linda Joy – South Carolina
Diagnosed: 7/28/1998 at age 50 LMS Retroperitoneal
7/28/1998 Surgery for recurrence
10/13/2000 AIM, Adriamycin, 12/10/2000 – 4/25/2001, 6 cycles.
Lisa Smith, 11 year Thriver
Living with LMS
In 2005, at age 40, I got the ULMS diagnosis after a partial hysterectomy. Every three years I’ve had a recurrence: 2008 near the remaining ovary. I had surgery followed by 6 rounds of Adriamycin; 2011 in pelvis and had cyber knife; 2014 near bladder and another wrapping around ureter. I got a ureter stent and 11 rounds gem/tax. I develop fistula between intestine and ureter due to damaged weak tissue from prior cyber knife. I started Temodar in February 2015.
So many times I thought this is it, I will keep getting worse and then die. But each time I got better and had years and now months of quality life. Don’t fall into despair and give up. I’ve lived to see my 3 daughters grow to adulthood and to meet my grandsons.
Remember to keep living with cancer not dying from it. When I had periods of depression. Getting out into the sunshine, meditation and my gratitude journal got me out of it. I exercise and eat a vegan diet. Working and being around people helps a lot. I became an animal advocate and volunteer for a farmed animal sanctuary. This was the gift that cancer gave me. Focused on helping, not on myself and cancer.
Melody Yamaguchi, 10 Year Thriver
My children were 10 and 12 when I found the lump in my left upper arm. It was a hard lump that felt like a small marble. I went to my general practitioner, who sent me to a dermatologist, who sent me to a surgeon, who sent me to an orthopedic surgeon, Dr. Ashe. All of this runaround cost me three months. After examining my arm, Dr. Ashe exclaimed, “You have a lump in my arm and it doesn’t bother you.”
As an advocate for my health, I demanded tumor removal and biopsy. I received a call from Dr. Ashe’s office. They told me to come in immediately, even though I had an appointment scheduled for the next day. My sense of foreboding increased when the staff hustled me into an exam room without collecting my copay. Dr. Ashe informed me I had leiomyosarcoma. I asked, “How do you spell that?” He handed me a referral to the orthopedic oncologist and patient support center at University of California of San Francisco (UCSF), then abruptly left.
I went home with the intention of holding it together in front of the children, but I lost it. I gathered them up and we all snuggled together in my bed and watched stupid movies. We laughed sometimes and we cried sometimes. This is my sweetest memory of cancer.
My over-riding emotions though were sorrow and anger. Anger. Huge. I didn’t want some other woman in my bed, sleeping with my husband and raising my kids if I passed away. Mine! It is 10 years later. My husband and I just celebrated our 26th wedding anniversary. Our children are now independent young adults and continue to be the joy of my life. We have grandchildren.
Sometimes curious people ask me about my upper arm, which looks like a smallish shark took a bite out of me. Completing the look is a 3 1/2 inch straight white scar, radiation tattoos and skin mottling from the radiation. If my curious onlookers will listen, I tell them the importance of being a strong advocate for your health.
Having cancer wasn’t great. It sucked. But it has made me a more compassionate and kind person. And kindness is always a good thing.
Michelle Dillion, 8-Year Thriver
Beating the Odds
In the beginning, prior to a hysterectomy, my gynecologist said there was a slim chance it may be cancer. In surgery, he cut my “fibroid” into sections, and also nicked a ureter. He told me later there was some cancer, but assured me it was contained in my uterus.
The oncologist told me they had found Leiomyosarcoma, and I would need six weeks of radiation and six months of chemo (Gemzar and Carboplatin). A CT scan prior to beginning treatment showed “multiple” lung mets (metastases).
Luckily, I had discovered ACOR, and knew I needed a second opinion. So I had my records sent to Memorial Sloan Kettering. At MSK, I saw Dr. Koehan, whose first words to me were: “It’s not as bad as it looks.” I left her office feeling like I could live with this disease. I had a plan, and knew there were more options. Nine months later, I was on top of the world when my scans came back with no evidence of disease (NED)!
My first recurrence, a 1 cm lung met, was easily removed with surgery. The next recurrence was painful — a tumor wrapped around my ureter, causing kidney blockage, and I had to get a temporary nephrostomy and a stent.
My local oncologist told me I was inoperable, and that he would make me comfortable, So I once again traveled to MSK, where a surgeon agreed to do the tricky surgery.
That was five years ago. Since then, I’ve combated LMS with chemo, surgery and radiation. I live with two ostomies now, but my quality of life is good.
My attitude is a combination of denial, hope and faith. I started out believing that once a person had a recurrence, that was the end. Now I see cancer as a chronic disease. Most of the time, I try to pretend I’m not sick, and that I have a normal life. My life is normal; it just involves doctors and chemo.
I’m realistic, but I don’t dwell on having LMS. I believe each new treatment will work and research will find a treatment to control my LMS.
In the meantime, I love my life – I read, knit, color, play with my critters, work on my crafts, cook and enjoy every moment with my loved ones.
I also read the stories of my online friends, and laugh with their successes and cry with their failures, for they are the ones to whom I truly owe my life. I would not be here today without my online support.
My advice is to read everything you can get your hands on, be cautious of what you believe, and research, research, research!
Michelle Dillon Charleston WV
April 2008 ULMS Discovered Stage IV from hysterectomy for fibroids. Gemzar with complete response. Thoracotomy for lung met. Pelvic resection, bladder and ureter rebuilt. Unsuccessful Doxil, successful Ifosfomide and later Gemzar. Complete response. Pelvic resection, colonostomy and urostomy. Stereotactic radiation. Stable lung mets. Lung mets grew, antiangiogenic protocol, more lung mets. Aldoxarubicin, Votrient, Temodar and Erubilin all failed. Yondelis with shrinkage.
Milica Stefanovic, 10-Year Thriver
In 2006, my doctor advised me to have a hysterectomy. I was insisting on removing the tumor only, not knowing that it was LMS. It was stage I, high grade ULMS. The mitotic count was 10/10, it was poorly differentiated and measured 9 cm. It also tested with a high percentage for hormone sensitivity.
After the initial surgery, I had radiation therapy, which I believe kept the tumor from spreading.
I followed with taking Femara (letrozole) for one year. I stopped Femara because of side-effects. My doctor wasn’t so excited about that decision. But I wanted to save it for later if cancer returns.
I’ve never had a recurrence – I have been NED since. I wouldn’t do anything differently. The “watch and wait” approach could be risky for this stubborn disease. Even for stage I, I believe adjuvant therapy is needed.
I also believe improving insulin sensitivity (or reversing insulin resistance) is critical for this type of cancer. I keep blood sugar stable with several small snacks during a day. I also take chromium (100 mcg before every meal). Vitamin D3, and C with magnesium, B12 and selenium. I think this is what has kept me NED so far.