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
Sandy Durbin is an 18-year LMS Thriver. For several years before her 2001 diagnosis, she had symptoms that were identified as recurrent urinary tract infections. In fact, she had an 11 cm (diameter) tumor in her bladder, which necessitated the removal of the organ, parts of her intestine, and an anterior exenteration, followed by extensive reconstruction. Though radiation was recommended, Sandy declined further intervention.
In 2004, 11 metastatic tumors were found in both of her lungs. After several tries, Sandy found a surgeon at the Cleveland Clinic, Dr. Thomas Rice, who agreed to remove them. The tumors were resected, one lung at a time, with several months in between for recovery. After the second resection Sandy started a chemotherapy regimen of adriamycim / ifofsamide. It was difficult and left her feeling exhausted, depressed, and cloudy-headed. Nothing could control her nausea/vomiting.
Discontinuing treatment about ¾ of the way through, she switched to more natural methods, including guided imagery, to which Sandy attributes much of her subsequent recovery. The primary imagery she used was by Dr Andrew Weil, Heal Yourself With Medical Hypnosis. She worked with these imageries a couple of hours a day, as she continues to occasionally do today. She also ate/took several supplements, including but not limited to: Astragalus root, Beta Glucans, Reishi & Maitake mushrooms, and a blend of proteolytic enzymes. She has been disease free since late 2004.
Sandy believes that attitude is everything. In fact, this is the most important thing she wants to share. Other things that helped, besides the guided imagery that “helped her stay sane,” were the constant love and support from her family. This gave her a reason to live and the “ability to fight.” Some self-help books also helped her keep the right attitude. She did not find reading about statistics and her prognosis helpful.
As to what she has learned, Sandy is grateful for every experience life gives – the awful, difficult ones as well as the wonderful ones. She now knows without a doubt how very much she is loved. If she had any of this 17-year journey to do over, she would not undertake chemotherapy. She would, however, take the same nine months off work to learn about health, homeostasis, introspection, meditation and nutrition before reentering the “game of life.” She would also, as she did, read her own medical records and view them and herself as unique and separate from the disease and its devastating profile.
Sandy’s most important advice for newbies is: Believe with every cell of your body that you can overcome. People always make breakthroughs & prove statistics wrong. Believe you will be this person. Don’t let rough days define your recovery. Bawl it out, eat some comfort food, then tell yourself to suck it up & get back to being a fighter. You’ll never know how strong you are until being strong is the only choice you have.
Unwanted Rare Cancer Leads to Terrific New Friendships
Joni Fixel from Okemos, Michigan was diagnosed with uterine LMS on July 24, 2003. Hers was a basketball sized inter-uterine tumor and was removed with clean, wide margins. Because of those margins, she and her oncologist/surgeon chose to forego chemo and radiation, and to instead adopt a “wait and watch” plan of frequent scans and monitoring.
Fortunately, Joni has had no recurrence in the last fifteen years and remains No Evidence of Disease (NED). Yet there were, of course, some tough times. What helped? Joni’s faith in God and talking to others in the LMS community. Obsessing over every pain did not help. While scary, every ache and pain is not LMS!
Joni is glad that she got involved in the LMS community, making new friends that remain 15 years later. She encourages newbies to get involved in that same community and to use self care, to do what feels right and brings peace. Simultaneously, she counsels those new to the journey to not chase after too many opinions at the risk of no treatment at all.
When asked what were the most important things she wants to share, the first is to not hesitate to ask questions or to have someone with you at appointments ask. Her second piece of advice is to enlist the help of friends; they want to share and help.
Finally, in Joni’s own words, “There is so much information available now and treatment choices that just didn’t exist when I was diagnosed. I am happy to read of many more long-term survivors now than ever before. It is my belief that there are more LMS patients than thought but due to missed or non-diagnosis, the numbers are lower than the reality.”
Thank you, Dr. David Spriggs!
Alice Herman of New York City was diagnosed with uterine leiomyosarcoma in September, 2002. The diagnosis came after a hysterectomy, which had been advised for heavy bleeding. The cause of the bleeding? A burst ulms tumor – definitely not good news.Though she did not qualify for a clinical trial taking place, two months later Alice was able to receive the same drug, Gemzar/Taxotere, outside of the official trial. Following surgery and treatment she still had a suspicious spot in the area of the original tumor. However, she did not develop any other evident tumors. Alice credits the Gem/Tax combination with containing her disease.
One year later, Alice had a second surgery to remove the remaining spot, which proved to be a second tumor. After surgery she declined radiation, informed by her own research, information from the LMS listserve, and a second opinion from MD Anderson. Following that second surgery in December 2003, Alice received CT scans and was followed by MSKCC. After ten years of NED results, her MSK oncologist released her to her primary care physician. Now, 16 years post diagnosis, Alice is grateful for every day and for the new lease on life that she feels she has been given.
How did she cope during the stressful times? Her support group of friends and family helped tremendously, as did yoga, therapy, and acupuncture for chemo symptoms. In addition, her husband was a full partner during the cancer journey, attending every infusion and doctor’s appointment. She also worked with an MD/homeopathic doctor whom she believes helped. When she had trouble sleeping, Ambien did the trick. With the shock of the initial diagnosis, Alice investigated every alternative and complementary therapy she read about, though she found most were not helpful and the search quite wearing.
If she were starting out now on the uLMS journey, knowing what she knows, Alice would go straight to Sloan Kettering for the first surgery. Had this happened, that second tumor may have been discovered and removed during the first surgery. She would again work with David Spriggs at MSK and would meet with several oncologists before deciding to work with him. And she would again accept an experimental chemo treatment instead of the then-standard chemo that did not have a high success rate.
One of the key lessons that Alice, a self-described “control freak” had to learn, is that she does not have total control over what happens in life. With that knowledge she now relaxes more and enjoys the journey, wherever it takes her. Gratitude is her constant companion
Finally, her most important advice for newbies:
Where you are treated makes a big difference. Seek out the best cancer hospital you can find within reach of your home. Take one day at a time, working with a doctor experienced with sarcoma whom you trust, while also building your own support community and learning what you can about your disease. And do NOT second-guess decisions once you have made them!
It was December, 1998 in Cape Girardeau, Missouri when Barbara Blanchard, a dedicated educator with a full and rich life, experienced swollen feet and legs, “electric shocks” in various places in her body, and an increasing tendency to lose her breath. After seeing several doctors, she was diagnosed with malignant leiomyosarcoma of the duodenum, the first section of the small intestine.
Within a month she had a Whipple surgery, a major operation most often performed to remove cancerous tumors from the head of the pancreas. Eleven days later she was back in surgery because of a bile obstruction. Barbara had neither radiation or chemotherapy post-surgery; they simply were not effective at the time. What she did search for and eventually find was the LMS online support group, a lifeline of hope and information, a place where she could feel safe.
The road Barbara has had to walk has not been an easy one. She had, and to a lesser degree still has, difficulty digesting food. Though extremely challenging at times, Barbara feels it is a small price to pay for these last 20 years. In fact, she considers herself to be a member of the prestigious club entitled “God’s Special Miracles.” She writes that as members ”We get new eyes – eyes that penetrate into the very souls of those we know. Our ears become keener – they hear those who cry out for help. Our understanding takes on a deeper philosophical meaning. “
Barbara continues with words that encourage and inspire us all: “Each day is a treasure that fills us with awe regardless of the challenges it may bring. We are here! We can handle anything!” She and her husband decided they could let fear control their lives, or they could appreciate and enjoy each day to the fullest. They chose the latter. In fact, she does not think anyone could squeeze anymore out of a day than they have done in the years post -diagnosis, creating enough memories to fill countless scrapbooks.
This is the gift Barbara has been given by leiomyosarcoma: To appreciate and enjoy each day. And to help someone along the way.
Eleanor: Nine Years with Leiomyosarcoma and Still Grateful
Eleanor at 72 is a pillar of gratitude and positivity.
Leiomyosarcoma (LMS) treatments are focused on helping patients have a better quality of life, longer. However, sometimes the treatments themselves are debilitating. Eleanor is disabled after ten surgeries and chemotherapy. Yet she thrives, describing herself as a grateful survivor who is glad to be alive to enjoy her circle of supportive family and friends.
She credits the connection with other patients through the Leiomyosarcoma Support and Direct Research Foundation (LMSDR) Facebook page with her survivorship. Recalling the openness with which other LMS survivors share their fears, successes, failures, and strategies, she declares, “It has brought me into a network of our sarcoma warriors and broken down my ignorance. The group has certainly lifted me out of my isolating fear and extended my life. I am so grateful to the administration and members.”
Without a doubt, LMS often brings about sweeping life changes for those bearing the diagnosis.
Before she was diagnosed, Eleanor was the busy 62-year-old CEO of a multi-million-dollar family business who traveled extensively both for work and pleasure. She managed the twelve-acre farm that she shared with her husband of fifty years, Joe. She managed his chronic illness. In her spare time, she trained and competed in bicycle marathons and enjoyed swimming.
Today, Eleanor rests or sleeps for twelve hours a day, and faces chronic exhaustion, all of which contribute to isolation despite the loving care and attention of Joe, daughters Eleanor and Claire, and friends. Although she must conserve energy for its best uses in fighting LMS and the effects of treatment, she helps with a few light household chores around their downsized Maryland home, and shopping.
Indeed, leiomyosarcoma is a frightening and impactful diagnosis. But survival statistics are improving because of increased research thanks to the awareness efforts of the Leiomyosarcoma Support and Direct Research Foundation. Eleanor recalls that she met her diagnosis with “absolute terror and certainty that I would die in excruciating pain.”
The nature of LMS is to disappear for a while then show up with no warning. So it has happened to Eleanor. Currently, she awaits radiotherapy for nodules in her lungs. Yet, while she grieves the resurgence of the disease, as well as her lost vitality, the active life that was, and a head full of gorgeous red hair, Eleanor hails her good fortune to be a survivor.
“Life is too beautiful. I am not ready to die!” she exclaims then notes the loving accommodation of her needs by family and friends along with the unconditional love of her four cats. Adding to her zest for life and will to live, is anticipation of a beautiful flower garden Joe is having made for her enjoyment. She truly practices life one moment at a time.
There is however, something Eleanor would like people to know about leiomyosarcoma: “Although we patients generally look healthy, not wasted and skeletal like a stereotypical cancer victim, we are still very ill and require all kinds of support – mental, medical, spiritual, and physical. Help us keep laughing.”
Kelly Pounds is a vibrant, active, 18 year-thriver who found a rock-hard, though painless lump in her right thigh Memorial Day Weekend, 2000. Fortunately, she was scheduled to see her GP the following Monday later, Kelly saw an orthopedist who took one look at the MRI, ordered an X-ray, and then sent her the following morning to Dr. Craig Jones, an orthopedic oncologist. After a scheduled biopsy,
From Fear to Hope
In January 2002, my life changed forever when my doctor said three simple words: “You have cancer.” Not just any cancer, but a very rare one, leiomyosarcoma, which immobilized me dead-in-my-tracks with terror.
I never went through any denial. My girlfriend had the same uLMS. She lived 2 years. She flew to MD Anderson Cancer Center in Houston and tried all the chemo available. I held hands with her family in her last days. That was only nine months before I was diagnosed.
I visualized my own demise. Those were dark days as friends tried to get me to “think positive.” Because I had a “heads-up,” I was a smart and stubborn patient. Thinking I was going to die within 24 months anyway, I refused the tumor board’s recommendations of chemo and pelvic radiation.
I felt some relief when the first lung met showed up. I had been waiting and waiting anxiously for nine months. At least we could do something that was proven to help: surgery.
That was a kick-in-the-pants to get more proactive. I studied immunotherapy. In 2003, I was able to join a telomerase immunotherapy phase I trial in Boston at Dana-Farber Cancer Institute even though I was NED (no evidence of disease). I flew from San Francisco to Boston every other week for this precious shot. A fellow LMS patient put me up. After four months, a whopping 3.5 cm tumor showed up in a chest lymph node. Back to surgery I went.
After the thoracotomy, I was NED again. I continued to learn from my online support group and the local group of LMS patients I put together. At the recommendation of one of those LMS friends, Delia Pratt, MD, I asked my oncologist to test my original tumor for estrogen and progesterone receptors. I was 99% positive for both estrogen and progesterone. After six months of fighting with my gyn onc surgeon and insurance, I had my ovaries removed in 2004. I then took an aromatase inhibitor, Arimidex, for the next seven years.
While I haven’t had a tumor since 2004, not everything was hunky-dory. The surgical menopause put me into a depression deeper than I had ever felt before. I felt like I had weights on my legs and arms. I spent months in bed thinking of death, and at times, even suicide. I had a severe clinical depression that I could not control.
The first antidepressant gave some relief, but it took several years of experimenting to find the right combination. To be honest, I’m on three different ones and never felt better in my life! Do not hesitate to work closely with a psychiatrist for depression or anxiety. The trauma of having cancer and constant fear changes your brain chemistry. The right medications actually help heal that deprivation of “happy chemicals” like serotonin, which your brain needs.
It’s been 17 years since my diagnosis. I have no idea why the leiomyosarcoma hasn’t returned. My doctors believe it was the estrogen blocker I took, but because it was adjuvant, we will never know for sure.
While I am so grateful for the time I have had, the fear has never left. From my research and witnessing others, I know LMS can return after many years of being NED. I’ve seen it return after people were 12 years from their last tumor. I get annual CT scans.
My LMS journey has forced me to grow in many ways. I have little tolerance for petty squabbles or people who complain nonstop. I have to pay attention to my mental health and surround myself with caring people and beautiful things that give me pleasure. I have learned to be a problem-solver rather than just react emotionally to challenges. And I have learned the value of reaching out and giving to others, while passing the hope forward.
Sarah’s Interview on Drug Watch: https://www.drugwatch.com/contributors/sarah-salem-robinson/
Sarah Salem-Robinson is a Physician Assistant. As many thousands of women in the last two decades before her, she experienced a harrowing health journey with heavy periods and pelvic pain which lead to a “minimally invasive” hysterectomy with the use of a surgical power morcellator device.
Unfortunately, Sarah’s GYN surgeon at Kaiser, the clinic where she worked, refused her request of an open laparotomy surgery for what he insisted were, “benign” fibroids.
Sarah’s first encounter with the power morcellator was as an OB/GYN Physician’s Assistant in Northern California. She assisted in the operating room during a hysterectomy and was disturbed to see a uterus shredded and sucked out through a small tube. She was shocked and watched with anxiety, but she could also feel the elation in the OR at the time, especially from the GYN surgeon because he had a new innovative tool.
While power morcellators promise quicker surgical incision healing times and less risk of complications such as bleeding and infection, they also come with a much more dangerous risk — the risk of spreading undiagnosed uterine cancer.
Sarah’s GYN doctors recommended the device for her fibroid removal. They assured her she was cancer free and she would be fine. Then, a week after her surgery, doctors told her she had leiomyosarcoma, an aggressive uterine sarcoma. At stage one, 60 to 80 percent may survive five years. After a surgery with power morcellation, that number drops to a mere 10-15 percent. As a result of the power morcellator use, instead of a cure by open laparotomy, the morcellator spread Sarah’s undiagnosed leiomyosarcoma cancer. She is currently a stage 4 LMS patient fighting for survival.
This life-altering experience led Sarah Salem-Robinson to advocate and bring awareness to women undergoing hysterectomies. At Kaiser, she approached the chief of staff (also a GYN) to ban morcellation during hysterectomies so that no further women would undergo the upstaging of undiagnosed cancer. However, Sarah soon learned that Kaiser purchased two new morcellators directly after her LMS diagnoses. Sarah began a public Facebook to document this on-going fight, campaign against morcellation at https://www.facebook.com/campaignagainstmorcellation/
For more information on uterine morcellation and leiomyosarcoma, see LMS Boot Camp #7
The call came at noon on a Friday in February 2010. I remember every word, like it was yesterday.
“This is Dr. Campbell. Your biopsy results are back. I am shocked and very upset.”
The pea-sized bump I had discovered 3 weeks earlier between my lower gums and my inside cheek had grown to 3.5 cm while I waited for surgery. I almost bled to death in Dr. Campbell’s chair as he hacked away at it, bit-by-bit. He packed me full of gauze and sent me home, leaving the core behind because he couldn’t get it. Since they kept saying it was an infection, I had no cause for worry. Only later did my dentist tell me Dr. Campbell told her he had never seen anything like it.
Dr. Campbell continued: “It is cancer, a very, very bad cancer. You will need a very good oncologist. We are waiting for a second opinion, but all of the options are terrible… Mrs. Strong? Are you there?”
“Damn, I’m dead,” was all I could think. “Mmmhm,” is what I said.
“Do you have any questions, or does your husband have any questions?” he asked. My husband was at work. I was all alone.
I wanted to ask: “How do I tell my family?” My husband had just gone back to work after 19 months of treatment for leukemia. Our daughter with cognitive delays had heart issues. We had welcomed our first grandchild five months earlier and she and our other daughter and son-in-law had moved away. Our son, newly engaged, was in Chicago. I was helping my mother adjust to the move to an assisted living facility.
I had a thousand questions. Mostly, “Why now?”
While Dr. Campbell did not know anything about leiomyosarcoma of the lower jaw, or how to give a patient bad news, he did give me something valuable. It was a brochure from the University of Minnesota Sarcoma Center. The brochure, he explained, had belonged to his business partner’s wife, who also had a sarcoma. “But you can keep it,” he said. “She’s dead.”
I saw my husband’s left fist clench. I was afraid he was going to hit the oral surgeon. He later admitted that he almost did.
It was a brutal introduction to LMS (and the inability of some doctors to show compassion). Thank God my medical care improved greatly after that. I am so grateful for the sarcoma specialty team at the U and the surgical team that built me a new jaw from the fibula in my right leg (gives new meaning to the phrase “I can’t walk and talk at the same time”) in a 14-hour microsurgery. Unfortunately, the location plus the fact that my tumor had been hand-morcellated meant my diagnosis was Stage 4, with a poor prognosis.
I went home with a feeding tube and a trach, my right leg immobilized for a month. I have had six recurrences, and seven surgeries — lymph nodes in my neck (followed by radiation and a feeding tube for 3 months), most of the lower lobe in my left lung (three separate recurrences), three ribs (with follow-up SBRT), a section of my diaphragm, and my right adrenal gland. My last surgery was 4 ½ years ago, and I have been “dancing with NED” ever since.
I have been blessed by insurance that has never denied me treatment. And by my oncologist, Dr. Hurley at Regions Cancer Center, who welcomes my involvement on my care team and does not let me leave an appointment without asking what I have learned from the LMSDR Facebook group. He empowers me to be knowledgeable.
There have been missteps on the journey. My husband told me that he could not be there for me “the way I was for him.” (I had moved into the hospital with him for much of his 160 days of hospitalization.) I was angry. But he had a new job and was still physically and emotionally drained by his own journey. Now I know that honesty was a gift. I learned we can’t expect one other person to take on our burden, and that it takes a village to hold us up and help us move forward.
I am grateful for my village — for the members of ACOR, and the LMSDR Facebook group who have shared wisdom, and love and hope. Because my husband could not help with my day-to-day care, family and friends stepped up. They said: “That’s what your friends are for” and have jumped right back in during each of my recurrences.
My faith has propelled me on this journey and gives me hope and joy even in the darkest of times. I have found great healing and personal growth in sharing my faith as a volunteer with a hospice organization and in a Facebook blog.
I am so grateful for this gift of life. When asked how it feels to live on borrowed time, my answer is that this is not borrowed, but gifted. This gratitude drives me to serve the LMS community — with the LMSDR Minnesota/Wisconsin regional group, as board secretary for LMSDR, and a long-time moderator for the LMSDR Facebook group. I am here to say that while this is a very, very bad cancer, it is manageable and there is hope.
I walk with a limp (they forgot to tell me how much I would miss my fibula!), but I walk firmly in the grace of God, the love of my village, and the friendships I have made because of cancer.
And for all of that, I am a very, very grateful survivor.
Vicki Strong 2019
At age 51 in June 2010, Debbie Foley, another extraordinary sarcoma thriver, was diagnosed with uterine lms. Debbie’s complaint was painful fibroids, and her doctor, Lisa Anderson M.D., recommended a full hysterectomy. No laproscopic surgery. No morcellation. Despite a disease that has metastasized, Debbie considers this decision a fortunate one.
For the next seven years Debbie received follow- up care and treatment for slow-growing nodules on her lungs from Dr. Spriggs at Memorial Sloan Kettering. From June – September 2010 she received four cycles of Gemcitabin/Taxotere. In October 2011 she received VATS, video-assisted thoracic surgery, a minimally invasive surgery of the chest, performed with a thoracoscope, or small videoscope using small incisions and special instruments to minimize trauma. Two nodules in her left lung were removed.
In the following year, 2012 Debbie felt well. She also married for the first time. Then came January 2013 when she had another VATS to address a new nodule in her left lung. The procedure was repeated one year later. Also in 2014 Debbie had 1/3 of her right femur resected; a rod was inserted from her hip to above the knee. Another “good year” followed, meaning no bad news and general good health, until February 2016 when Debbie’s left lung had to be ablated to address a new nodule. A few months later she had another ablation for three nodules in her right lung, and in November Stereotactic Body Radiation Therapy (SBRT) to her T12 in her thoracic vertebrae.
Debbie’s treatments picked up pace in 2017 when she had three separate interventions: ablation for four nodules in her left lung, radiation to her left humerus, and radiation for a left upper-lobe nodule Then, due to findings based on genomic testing, she entered Clinical trial PLX8394 in January 2018. She had to discontinue participation in April , however, when a scan showed a 3.8 cm lesion in T12 and growth of lung nodules. In response she had five more radiation treatments to T12 in May 2018, which was followed by six treatments of doxorubicin/olaratumab. This protocol brought stability for three months.
Between December 2018 and May 2019 Debbie had more interventions: plates and screws inserted at her left humerus, five radiation treatments to her left acetabular, and one cycle of trabectedin, which was paused temporarily for a five hour surgery in June so that rods, plates and screws could be inserted at T12/T11 to support a crumbled vertebrae, caused by radiation. As of the end of June, Debbie is recovering from surgery and has three lung tumors greater than 2.5 cm and eight sub cm lesions.
When she reflects on the past decade and her numerous treatments and interventions, Debbie concludes that 2018-19 have been her hardest years, for though now living in Northern Virginia, for much of that time she was still being treated at MSK. The numerous trips to New York took a toll on her, and in March of 2019 she decided to make the switch to Johns Hopkins, where she received her most recent surgery. Not only did the trips back and forth to NYC impact her physically, they ate into her precious vacation time, days and weeks that she wanted to spend traveling with her loved ones. Perhaps it is this attitude, as much as her longevity, that makes Debbie a thriver.
A self-declared pragmatist, Debbie listened – hard – to the advice that MSK’s Dr. Sprigg’s gave her early on: Live your Life. And so she has. She admits to having some scanxiety the day or two before her three month scans, but she deals with it, gets the test, and heads back to her work at the Department of Justice and to her life. She makes a conscious choice not to think about her disease until she has to, and she keeps her pragmatic and positive outlook close at hand.
Time for surgery? I get to read a couple of good books and spend time cooking with my sister.
Can no longer run? Walk instead.
Need another treatment? Put one foot in front of the other, take one day at a time, and count my blessings: health care; a sunny day; work that I enjoy; the support of the LMSDR Facebook group …
Other things that have helped Debbie cope are her loving and supportive husband, Larry, incredible sister Sue who is staying with her while she recovers from her recent surgery, friends, and family; her pragmatic mother who always counseled her to live her life and appreciate the day, the flowers, a good meal, the outdoors. And she makes sure she has something to look forward to, such as the NCAA final four that she and her husband go to every year and a trip to Canada for her 60th birthday. Debbie also meditates daily to help create the kind of day she wants.
As for the future – hers and that of others with the disease – Debbie is hopeful. Why? There are new treatments all the time and patients are living longer and often with a better quality of life. In fact, she wants to share with others: You have to have hope. Do what you enjoy doing. Be around people you love being around. Get together, share meals, appreciate each other’s company. And live the life in front of you.
“Keep on Truckin”
Rita Hamilton was diagnosed with uterine leiomyosarcoma in August 2000, when she was 42 years old. At that time she was told she had 18 months to live. In the 19 years since then, she has learned that doctors cannot predict how different patients will do, and stage four sarcoma does not have to be a death sentence.
Nine months after Rita was diagnosed, her sister was also diagnosed with uLMS. Her sister only lived four weeks more after diagnosis.
At the time of diagnosis, Rita, who lives in rural Tillamook on the Oregon coast, worked for an excellent general surgeon, Dr. Lyle Mohr. He recommended a colleague and good friend for her initial hysterectomy. During surgery a tumor was found, and it was wrapped around Rita’s colon. A colostomy was recommended to her husband, but he refused since he was told it would not prolong her life. Instead, Rita’s doctors undertook the arduous task of picking the cancerous cells off her colon. The consulting surgeon was sure Rita would have an obstruction at some point, but that has never happened.
Rita believes her surgeon must have suspected a more serious tumor at the time of the operation because he had pathology on standby. By the end of the surgery, they knew she had some type of sarcoma. She was not the first or last LMS patient he had seen.
At an early oncology appointment, it was recommended that Rita do MAID (mesna, Adriamycin [doxorubicin], ifosfamide, and dacarbazine.) From the reading she and Dr. Mohr had done, they were not convinced it would be effective. So Dr. Mohr then consulted with Dr. Demetri at Dana Farber, who suggested a wait and see approach, which is what they did. Dr. Mohr continued to order the scans, reviewed the results with the radiologist, and then communicated to Rita the results.
For the first year post-surgery, Rita received CT scans every two months, and after that every three months. For the first two years all scans were clear. At the two-year mark, a tumor in her abdomen near her bladder was found and excised with good margins by Dr. Mohr, with the original GYN surgeon assisting. Close to this time a lump on the back of Rita’s head was also found, right at the edge of the scalp. Dr. Mohr came to the rescue again, removing the lump with a wide resection of Rita’s scalp. This intruder turned out to be an amelanotic malignant melanoma lymph node. A primary was never found, and Rita has had no issue with melanoma since.
Rita had clear scans again until the end of the third year, when her first lung metastasis appeared. It was removed by a thoracic surgeon. When more very small metastases appeared a few months later, it was time for a different course of action. This is when Rita consulted with Dr. Martee Hensley at Memorial Sloan Kettering Cancer Center (April 2004.) They tested her tumor and found that it had estrogen receptors. Doctor Hensley recommended letrozole, (brand name Femara), an estrogen blocker. Rita decided to take the letrozole under the care of her local oncologist.
In 2009, Rita decided she needed a short break from the letrozole because of the painful side effects. At the same time a mediastinal mass appeared. Fortunately, it was able to be removed via VATS (Video Assisted Thoracic Surgery.) In 2013 she was switched to exemestane (brand name Aromasin) because the letrozole was no longer working. Rita had developed a tumor behind her heart, which when biopsied, was found to be LMS. After 26 radiation treatments, the tumor shrank and has been stable ever since.
Then, in August 2018 it was discovered that Rita’s lung metastases were growing. So in November she had VATS, and the middle lobe of her right lung was removed. She also had a consultation with Dr. Kristin Ganjoo at Stanford who recommended trying Evista (raloxifene), a different type of estrogen blocker. It has kept her stable this last year, though the side effects are major joint pain and problems with swelling in her ankles and legs.
As of this writing, Rita has a tumor on the lower right lobe of her lung and small metastases on the left. She also has a tumor behind her heart that is inoperable because of its location. Nonetheless, her motto and advice to all is not to let LMS stop you from living.
How has Rita coped with the disease, scans, treatment, and the death of her sister to uLMS? She credits three non-medical factors: her faith, love of travel, and helping others. Medically, she credits the estrogen blockers. She feels it did not help by taking a break from these inhibitors. If she could do it over again, she would not have stopped this treatment. She is very glad she never had any traditional chemotherapy.
As for a final word of wisdom from this Thriver of 19 years:
“HAVE YOUR TUMORS TESTED FOR HORMONE RECEPTORS, AND KEEP ON TRUCKIN’.”
UPDATE FROM RITA: Because I was given such dire survival prospects, one year after I was diagnosed we went on a “last trip” to Hawaii. Later, when I was still alive, we went on another “last trip”. We have been blessed with many “last trips”. Our friends started to go on these trips with us and asked me to do their booking. After my job ended and I had to go on disability I decided to officially become a travel advisor. I have been doing this for about 8 years. I was very excited when Sharon asked about arranging a cruise for LMSDR. This is something that I have wanted to do for quite some time. I look forward to sharing my love of cruising with all of you.
If you have survived leiomyosarcoma for 7 years or more – please share your story with us! Email 2LMSDR@gmail.com