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
Kayla Killingsworth Douglas, 11 Year Thriver
I live on Anastasia Island, St. Augustine Florida. I’ve lived on the same street all my life, on Lighthouse Ave. The St. Augustine Lighthouse is on the same street.
In July of 2006 I went to my GYN for my annual appointment. The doctor felt that my uterus was large. After an ultrasound and CT scan, it was discovered that there was a tumor. The biopsy was not conclusive as to the type of tumor. There was a time lapse. My mother was very ill and died of lung cancer in early December. On 1/9/07 I had a total abdominal hysterectomy.
Now here’s the cool part, I was NED, no evidence of disease, until April 2015. Yep, I got a full eight years of being healthy and happy. I was very careful to have a CT scan and exam right on schedule all that time.
In April 2015, they found two tumors deep in my pelvis. For that surgery I chose to have the robotic assisted laparoscopic, surgery. The recovery was much easier, but I got two years before the cancer came back. I am uncomfortable with that decision, to do the robotic, although I was told that they would not be using morcelation.
I had surgery again on March 2, 2017. This time it was open abdominal surgery to remove a tumor on the small intestine, one on the vaginal cuff and several in the lymph nodes in the pelvic area.
So that’s it, no chemo and no radiation so far just surgery. I have no grand plans. I have lived my life in three month segments based on the scan schedule. I’ve never had any symptoms of the presence of the tumors so regular scans have been essential. I’ve been treated by the head of the department in a Sarcoma center. The quality of the work in the pathology and radiation department is important. If they read it wrong, the information to the doctor will also be wrong. So choosing the right doctor at a major sarcoma center has been essential.
Yep, I’ve been around a long time. During this time, I’ve tried to ruminate as little as possible. I have spent time with my three sons and my five grandchildren, sailed on the Atlantic Ocean and played percussion and sang back-up vocals for the Ancient City Slickers band. I have lived and loved and celebrated. Wishing you much happiness. Blessings to all of you, from Anastasia Island, in the shadow of my lighthouse, to you!
15 Year Thriver
Vancouver, BC Canada
What is your LMS history?
In February 2003, after a year delay, a total hysterectomy for fibroids revealed Stage 3A ULMS. (PR+ ER-) I had 5 weeks of pelvic radiation then was followed by a gynecological radiologist at the BC Cancer Center. For the next 11 years I took megace, a progestin used to suppress the effects of estrogen on cancer cells. Side effects were negligible. CT scan screening was discouraged. In fact, other than quarterly pelvic exams, I had occasional ultrasounds through my GP and lung X-rays through the oncologist. Other than 2004, I didn’t have my first pelvic/abdominal CT until January 2012 and first lung CT in April 2017!
In July 2013, a lump in my abdomen was found during a physical exam and thought to be a lipoma. An ultrasound indicated the same. Finally, a “non-urgent” MRI in December 2013 led to surgery in January 2014 resulting in positive margins. As a second surgery was refused by the Gyn. Oncology Board, I had to rely on a friend to find a general surgeon experienced with sarcomas to operate again. Since April 2014, I I’ve been taking letrozole with lots of aches and pains!
Since my 2014 recurrence, my Oncologist finally agreed to annual CT Scans. In November 2016, I had a pelvic/abdominal CT which showed two 3mm lower lung nodules. They had actually been identified in my first pelvic/abdominal CT in January 2012 but “missed.” My first lung CT in April 2017 indicated that one of the dormant nodules had increased to 5mm. Last month, six years after originally discovered, the nodule is now 6mm and scheduled for removal by VATS.
How did you cope?
I took control and treated this thoroughly grim diagnosis as a project! I was able to stop working in lieu of disability benefits. Goodbye stress! I joined a multitude of support and activity groups geared to cancer patients (meditation, healing touch, relaxation, Qui Gong etc.) I volunteered at the cancer center to “stay connected.” Made time for fun, planned lots of trips, visited friends old and new, got a dog, planned outings and dinner parties, played in the garden and took up golf. Basically I decided to “Live Life” and focus on doing what I never had time for before and also what made me happy. I used the opportunity to “embrace those parts of myself that I had skillfully avoided until then.”
Today I still try to practice good lifestyle and diet behaviors. I keep up-to-date with LMS developments and frequently attend local cancer information sessions, most recently about the role of genomics and immunotherapy.
What have you learned over these 15 years?
Never underestimate your inner strength and determination. You will be surprised! Come up with a coping strategy that works for you! A poor prognosis and/or recurrence(s) does not always mean the worst. It’s important to use every opportunity and resource to remain current with new developments in LMS treatments.
If you could start all over… what would you do differently?
Never take “No Evidence of Disease” (NED) for granted and DO NOT let your guard down! Don’t be afraid to challenge your Doctors or pose questions to the LMS community. Even after 10+ years, LMS can recur. You are not out of the woods at 5 years. When an abdominal lump was discovered, neither my doctors or myself thought it was a recurrence and it took 6 months to act on it.
LONG TERM THRIVER
Leah Chew – 20 Years uLMS
It’s been almost 20 years since I was first diagnosed with cancer. But I can still remember the look on Dr. Weiser’s face when he broke the bad news. I was frightened and lost. How can that be, I’m only 30 something, how can I have cancer? What does this mean for the rest of my life? How will this affect my life? The questions raged in my mind and from time to time they still do.
What had started out as a simple procedure to remove a fibroid tumor on my uterus, which was discovered by my gynecologist, had suddenly morphed into Uterine Leiomyosarcoma. My oncologist at the time recommended surgery as the best option for this type of cancer and as long as we could get clear margins chemo and radiation should not be necessary. With the decision made I had a hysterectomy and removed ovaries and lymph nodes. I had cleared the 1st hurdle, but unfortunately there would be more to come. 2 years later, during a routine exam another mass was detected near my bladder. Keeping with the game plan I had, the mass removed with clear margins and to no great surprise the biopsy came back positive.
After being NED for 9 years, in 2009, the lump appeared in my back thigh. Again this was removed. I didn’t do my routine follow up until 2015. It was then discovered that I was at stage IV. There were 3 nodules in my right lung and 1 in my left and a nodule on my right thigh. I went to Emory and had a team of surgeons along with a sarcoma oncologist that worked with me. The thoracic surgeon removed my upper right lobe and resected the nodule with clear margins on my left side of the lung. The other surgeon who deals with sarcomas removed my tumors in the thigh with clear margins. This all happened December of 2015 and January of 2016. I’ve been lucky because from my history, it appeared that my tumors have been slow growing and it’s been caught fairly early. I’m continuing to do 6 months PET/CT scans… and so far NED.
I had my husband and mother who is my rock. My mom would make juice for me every day for 1 year. The juice consisted of ginger, lemon, kale, apple, carrot, beet, sometimes it varies but always had ginger. Through all this, I continued to work. My co-workers always gave me support and laughter. My husband is my mental supporter. Through this journey, I’ve tried different things such as cutting carbs and sugar from my diet, stay active, stay peaceful and most importantly have a good doctor who you trust and a plan. I’m glad I currently have a sarcoma doctor and her team.
I was frightened and lost the first time I was diagnosed with LMS and again when I was diagnosed at stage IV. I think what helped me through these 2 major times was that I believed in my doctors, coupled with my own experience (only I know my body and I can make the decisions) I was able to work through the plan which gave me a sense of peace.
13 years dancing with NED after morcellation
My OBGYN thought I was full of fibroids, and that a hysterectomy would take care of my problems. When I went to see him for my follow up visit on August 2nd, 2004, I was feeling so much better than I’d felt in years that I called him my miracle man. The poor man then had to tell me that pathology had come back with an LMS diagnosis. He immediately set up scans for chest, abdomen, and pelvis. Although he was on vacation with his family, he called us as soon as he got the results to let us know that they were clear. He continues to be a large part of my journey with his constant support.
I was referred to a “sarcoma” doctor in Maine. My husband and I left his office feeling defeated. We were ready to fight, but were told to sit and wait for recurrences. It was then that I discovered the online group for Leiomyosarcoma. It saved my sanity. Being able to ask questions of people who were in my shoes, and had real, helpful advice was so important. I was told to get myself to a sarcoma specialist. I was given names of places and doctors. We made an appointment at Dana Farber with Dr. George. On our way to Boston, (a 3-hour drive), we got a phone call that Dr. George was ill that day. Because we were almost there, they fit us in with Dr. Morgan. He looked over my scans as we were sitting there and agreed with the doctor in Maine, that there was nothing to do but sit and wait, and scan. With a second opinion under our belt, from a sarcoma specialist, we went home to do just that. The following morning Dr. Morgan called and said that having met with the tumor board, they all agreed that because of the morcellation, I should do radiation, with brachy therapy following.
A month into my own journey, a woman sent an email to the online LMS support group. Her experience mirrored mine. My husband asked if I minded if he wrote to her. She and I began a lifelong friendship. In the beginning we emailed daily. Having someone right there with me, going through the same treatments, the same feelings, the same fears, was an amazing coping tool. On a day I was fearful, she could calm me down, and visa versa. Today we don’t email daily, but we are in touch often, and have met as often as we can. We are not in close proximity at all, so this takes some doing.
The most important thing I have learned throughout this journey is that I am my own best advocate. And I am worth it. I am a quiet, don’t rock the boat, kind of person, but there have been several times when I have had to become the squeaky wheel. From fighting with my OBGYN’s receptionist to get my records copied and sent to Dana Farber, to having my radiologist tell us that we “were too involved” in my care. It has been a struggle, but one well worth it.
I would say that the best thing I did was to find the online LMS groups. The advice, the caring, the sometimes hard line approach, was what I needed to get through this. I joined the LMSdr Facebook page a couple of years ago. I don’t often post, but I feel my 13 years of dancing with NED can be an encouragement to those just beginning this battle.
10/2019 UPDATE: After 15 years of NED, I went to my GP for an unrelated pain. I thought I was getting another kidney stone. My Dr sent me for a CT scan. The scan showed no stones, but a nodule in my lung that had doubled in size in 2 years. Two years ago I had passed a kidney stone. The nodule was a shadow on that scan, and never mentioned. Thankfully this radiologist picked up on them both. This led to more scans, then many trips back to Dana-Farber. The lower left lobe of my lung was removed. The nodule was indeed a recurrence of LMS. Dr Morgan feels that I am once again clean of LMS. The surprise this time is that one of the lymph nodes in the lobe came back with Adenocarcinoma cells that present as lung cancer. Since cancer doesn’t start in lymph nodes I am going through adjunctive chemotherapy. No primary was found, and a subsequent PET scan shows no cancer, so I am very hopeful that it also went out with the lobe. I am feeling so grateful that this has all been found so early. Is it possible that LMS may have saved my life this time? 🤷🏼♀️
Dorien Rumsey Mahoney
10 Year Thriver
“I’m going to live beyond the 17 months (or whatever) prognosis”
May 2008: diagnosed uLMS, stage IV (2-3 small lung mets)
June 2008: Gem/Tax for 5 months – shrunk lung mets
April 2009: more lung mets
2009: VATS lung surgery
2010: left and right lung thorocotomies
NED (no evidence of disease) since!
The hardest thing for me, especially at the beginning of the LMS journey, was decision making. Like where to go for treatment, where to get a second opinion, when to ask for lung surgery. At first it seemed like I had to make major decisions really frequently. That was scary because at that time I believed that the ‘wrong’ decision could cost me my life. Now I know that decisions have to be made in difficult circumstances. In order to make these decisions, I need to pray, gather as much info as I can, and be aware of how others have navigated these issues. Once a person has done all those things with an open mind & heart, the decision gels, and you feel as confident as you can that you’re going to make the best decision you can make at that time, based on what you know and based on God’s guidance.
If I were to do it over, I would do the same thing. Pray, gather information, go to conferences, talk to survivors. LMS was a good ‘training ground’ for me. In July 2016 I was diagnosed with Parkinson’s. After the initial shock (my dad had the dementia kind of Parkinson’s and had poor quality of life eventually), my LMS survival training kicked in! Back to praying, reading, going to groups, finding an exciting groove to keep Parkinson’s at bay with jazzercise, physical therapy, yoga, and immersing myself in supportive family and friends. I even changed doctors a week ago with confidence that I would benefit from the decades of research and experience my new doctor had to offer. As it turned out, my ‘new’ doctor taught my original Parkinson’s doctor when the young man was in his residency!
I’m very excited with all the LMS research that is going on. Newbies, there’s a whole new LMS world out there. I’m so thankful that you are entering a new age of LMS treatment! Keep learning and asking questions and supporting research. Then, if some of us thrivers need treatment again one day, you’ll have paved the way for us – thank you and my prayers go out to you all every day!
13 Years & Still Working
The doctor informed Elmer that he would never work again. He promptly fired the doctor, and went back to work. Other than when he was in the hospital for surgeries, Elmer has never missed a day of work. Working helps him get through this cancer. As well as his loving family by his side.
Elmer was diagnosed in 2005, with a grapefruit sized LMS tumor in the left side of his abdomen. After it was surgically removed, he had six annual scans that were clear. The doctor told him he was cured. Then in 2016, after 11 years of NED – no evidence of disease, he felt a lump on his shoulder. Not only was the lump LMS, he had tumors in his lungs. It spread over time to his groin, chest wall, adrenal gland and abdomen.
Elmer was able to get a new immunotherapy drug called Keytruda, from the pharmaceutical that makes it. So far, it’s been his most effective drug. Along with surgeries and radiation he has been able to control the tumors. He has just started Trebectedin (Yondelis) combined with the Keytruda.
His advice for the newly diagnosed? Go to a larger hospital that knows how to treat LMS. Get a good doctor. Keep up your annual scans when NED. If operable… take it out. Try the adjuvant chemo. And last, keep working if it helps you.
UPDATE 2019: Elmer’s daughter shared that he passed away 12/13/18.
Seglindei Wrathall (age 81) has been battling LMS since 1992! She states the key to her 26-year survival is being treated by a sarcoma expert at a sarcoma center. She wishes to share her LMS journey to give hope to the newly diagnosed.
Here is her history:
10/92 Hysterectomy (fibroid) 17.5 x 12 x 12 cm
10/96 Resection of abdominal mass 13.8 x 8.4 x 15.6 cm
3/99 Res. of pelvic mass 10.5 x 10 x 9 cm
3/01 Res. of upper abdominal tumor 6.7 x 5.8 x 2.9 cm
Res. of periaortic lymph node 2.2 x 1.5 x 1.6 cm
Res. of pelvic tumor 4.1 x 3.7 x 2.9 cm
Res. of presacral tumor 3.7 x 3.0 x 1.7 cm
6/01 Consultation with Dr. George Demetri in Boston, MA
12/05 Res. of right lung mass
4/09 Lobectomy of upper right lung 13.5 x 8.2 x 2.8 cm
11/11 Bilateral lung RFA
6/12 Right lung RFA
8/12 Left lung cryoablation
10/12 Right lung microwave ablation
1/13 Right lung microwave ablation
4/13 Res. of cardiac tumor 4.0 x 3.8 x 2.5 cm
Res. of abdominal mass
11/15 Right lung microwave ablation middle lobe nodule
Currently has an inoperable pelvic mass 7.8 x 5.8 cm
1/17 Consulation with Dr. Hensley at MSKCC
5/17 Started chemotherapy: Doxo and Olara at Huntsman
Cancer Institute in SLC, UT. Dr. Whisenant
Surviving LMS: Know the Enemy Within
My name is Laura Penny. I live (temporarily) on eastern Long Island, NY, but spent decades in the DC area and still see my sarcoma oncologist, Dennis Priebat, at MedStar Washington Hospital Center.
I was diagnosed with uterine LMS in 2004, 7 years after my GYN first started annual ultrasounds of a 4 cm “fibroid.” When it grew to 10 cm and started bleeding, I had it removed. I have been NED for 11.5 years.
I am one of the lucky ones. I have only had two recurrences, both local. My tumors were low grade. I had one very bad scare when surgical mesh broke and spread, appearing to be widespread LMS mets. I had VATS (video-assisted thoracic surgery), which revealed I had sarcoidosis, a non-cancerous autoimmune reaction.
I had five surgeries and spent 9 years getting monthly shots of Faslodex, an estrogen blocker. I went off Faslodex because of the side effects. For example, my mucous membranes dried out and I now have gum disease. I also have osteoporosis.
I did a lot of “doctor shopping” to find the right oncologist. I lived in the Maryland suburbs of DC and had a young family, so I wasn’t really in a position to go for long-term treatment elsewhere. I don’t think Johns Hopkins had a sarcoma oncologist at the time. I heard Dr. Priebat was “relentless,” and that was the magic word.
At this point I get MRIs of my abdomen and pelvis, along with a chest X-ray, every 6 months. I have already had 56 CT scans, so those are reserved in case something suspicious appears on a chest X-ray. I expect that Dr. Priebat will be ordering scans from the great beyond.
I read every bit of info I can about LMS. I read medical dictionaries. I go into every appointment with questions. I send complicated questions to him in advance. I have turned down treatments, insisted on surgery, argued with him, and shared life stories with him. At this point, 14 years after diagnosis, he said we are working as partners because I am in “uncharted waters.”
When I was diagnosed, I felt like I’d been shattered into a million pieces. I relied on my family and friends for moral support, meals, and child care. I appreciated when friends of seven different faiths said they would pray for me; I did not appreciate hearing that my deity has a plan for me. I also did not like being told I should think positive; I wondered why people would say that when they knew I’d received a scary diagnosis and had three young children, one newly adopted from an orphanage. I discovered the value of communicating with someone else with LMS (which can also be heartbreaking). Plus, I still believe that every day I stay alive, I am one day closer to the “cure.” I don’t think most oncologists use the word cure; Dr. Priebat says I’ll know I’m cured when I am 97 and get run over by a bus!
You Must Be the Expert
I was diagnosed 21 years ago at the age of 50. My OB wanted me to have a complete hysterectomy but she was shocked to find that the fibroids were malignant. I had an oncologist at first but fired him because he was so arrogant. My surgeon recommended alternating x-rays and CAT scans every three months. After three years, a very observant radiologist looked at the scans and said “No cancer evident in the abdomen, but what the heck is THIS? They had not been watching my lungs but the radiologist saw the tumor in the upper corner of the x-ray.
I had that lobe of the lung removed and have had four more metastasis and lung surgeries over the next 5 years. I now have about 70% lung capacity, which has been fine. My surgeon has small hands and during surgery he “feels” the lungs to see if there are any hidden lumps during surgery.
I had a PET scan about 6 years ago, and it revealed a slow growing tumor in my thyroid. Biopsies every six months were “benign.” But my surgeon said “I want it out” and thank goodness, because both lobes of the thyroid were malignant with carcinoma, not related to the LMS at all.
After ten years of NED I went to the scans and x-rays every 6 months instead of 3 months. Now I am on a yearly schedule, and it is nerve-wracking every time.
Keep some LMS information with you and show it to each medical person you encounter. Speak up, be proactive, don’t believe everything you are told, don’t take any crap from any medical person or insurance agency. Get second opinions and fire anyone who is a jerk. Read the FB group posts, take notes and ask questions. You will have to educate most medical people because LMS is so rare. YOU must be the expert!
Lea Custer of Atlanta, Georgia
12 Year Thriver
The “Gifts” of Cancer
Brief LMS history:
Diagnosed with uLMS. Followed by retroperitoneal dissection in October 2006 with clear margins. 6 cycles of Gem/tax, 5 rounds of radiation. NED until 12/16, routine CT showed multiple lung masses and nodules. Concurrently, abnormal mammogram and breast ultrasound. Biopsies on 1/12/17 verified metastases in both lungs, as well as invasive carcinoma of the left breast (unrelated). Began GEM/Tax in Feb. 2017, discontinued after 3 cycles due to disease progression. Underwent 7 cycles of Adriamycin/Lartruvo, achieving overall stability. Began Yondelis in Feb. 2018 and stability continued. Last CT showed slight growth in largest tumor.
I remember the shock and fear that I felt when I first heard that dreaded “C” word in my hospital room, after a routine hysterectomy. I saw that same look on the faces of my family, and knew that we would never be the same again. The next person who needed to know was my sister, my first and lifelong best friend. Somehow I couldn’t say the words, and they came out in barely a whisper. How would I ever be able to deal with this?
The answer came immediately, as I realized that my beloved husband of over 30 years would be the solid rock that he had always been. And my sister would be the one to guide me lovingly through the rocky terrain of chemo side effects. Who would have thought that we could giggle hysterically over my first bald head adventures.
Then came the gift of 10 years without evidence of disease. I got to see my son and his family move back to Georgia from California, my first granddaughter born, and our beautiful little retirement home in the north Georgia mountains.
In December of 2016, came the “routine” CT, “just to celebrate the ten-year mark”, my doctor and I agreed. When we learned that the cancer had metastasized, I didn’t feel anger, although I did wish I had insisted on a regular CT schedule much sooner. Instead of feeling angry though, I feel grateful for the gift of 10 years without cancer. Grateful for friends and family like my husband and sister, who help to make it all less of a battle. I so appreciate all the wonderful medical staff who treat me with such kindness and compassion. I look at everything differently and with so much more recognition of the beauty in life.
Mostly, I am grateful to be in the position to see the very best of humankind, which shows its angelic face when cancer shows its ugly one. It seems to me that when faced with someone battling cancer, even the coldest expression becomes warm. People who rarely speak are compelled to say something kind, and even total strangers will come forth with inspiring words or stories. Such amazing gifts that I might never have seen had it not been for the cancer experience.
My advice for anyone newly encountering The Dreaded Dragon: Learn all that you can from the proper sources. Accept help from the people who offer, and don’t ever be afraid to ask; it makes people feel better themselves when they are able to help you. Mend any fences that need repairing, there is no grievance important enough to separate you from your family or friends. Don’t forget to appreciate all that is beautiful in this world, and recognize the many “gifts” we receive from day to day.
If you have survived leiomyosarcoma for 7 years or more – please share your story with us! Email 2LMSDR@gmail.com