Leiomyosarcoma Long Term Thrivers 2013-2014
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
Amy Regenstreif
October 2013
Advocate
Amy Regenstreif has rightfully earned the title, “Advocate.” Amy is a single parent of twin daughters, now 24 years old, and lives in the LA area. She was diagnosed with retroperitoneal leiomyosarcoma in August of 2001 at age 44. She had no idea that 12 abdominal surgeries, about 4 chemos, a little pelvic radiation, 2 stomach ports, 1 pic line, 1 arm pit surgery, and 1 collapsed lung later…that she would be standing here today. Along the way she taught herself – from her own experiences and the struggles of others – how to advocate for those in serious medical situations.
Amy’s motto is… “Never accept NO.”
Amy just formed a new company called “Treat Your Healthcare Like a Business” …because fighting cancer is your new job! In her other life she markets health, life, and long term care insurance with New York Life Insurance Company since 2003…a job she got while in the midst of cancer.
20 Year Thriver: Joan Wachter
November 2013
Joan was diagnosed in 1993 with uLMS. She was told there were only 56 documented cases of uLMS, and there was nothing to read. She had adjuvant chemo and radiation. Joan is one of the lucky 50%, for whom uLMS never returns after stage I.
Like many long term survivors, Joan has had permanent secondary side effects from her treatment 20 years ago. She’s had many hospitalizations and a surgery for intestinal blockages.
She also still has fears. “Every bump I get biopsied right away. I don’t mess around!”
Since her diagnosis, Joan has happily remarried, had a grandchild and a successful career as a realtor in San Mateo, California. She loves going to Tahoe and Hawaii.
Alison Woodman
December 2013
Surveillance, surveillance, surveillance!
Alison Woodman from Cambridge, Massachusetts knows how to stick to her guns! She was diagnosed in 2001 with retroperitoneal LMS. It was a struggle to get the diagnosis. Alison went into the doctor’s office at least three times over a period of two years, telling him that she could feel a lump on the right side of her abdomen. He examined her, but didn’t seem interested and couldn’t feel anything. Finally, since the lump didn’t go away, she faked symptoms and told them she had intermittent fevers and nausea. They sent her for an ultrasound. A follow-up CT confirmed there was a tumor. It was taken out but with no margins.
After surgery, she had an aggressive surveillance plan at Dana Farber Cancer Institute. For the first two years, she had scans every three months. Then she graduated to six month scans for another three years. After that, five years from diagnosis and no more tumors, the plan was annual scans.
Then at seventh year, her doctor wanted to stop all CT scans completely. A reasonable suggestion for most cancers. But Alison knew that LMS was not like most cancers. So Alison refused. She continued to have her annual CT scans.
After ten years, a few small spots in her lungs and a couple in her liver began to turn up on the scans. The spots didn’t cause concern until 2012, eleven years from her original diagnosis. One grew significantly. She had it surgically removed by VATS. Due to Alison’s insistence on annual scans, the metastasis was caught early. She’s back to getting CT scans every 6 months now.
What does Alison do to thrive despite LMS? Alison replied, “Laugh as much as possible. As often as possible. I’m bad at exercise, but try to eat healthy food and not get stressed out. Otherwise, I think I’ve just been incredibly lucky.”
Jim Matthews
January 2014
Faith, Juice and Really Wide Margins!
I am an 18 year LMS survivor and I still think about the day they marked me for radiation in 1996. Memorial Sloan Kettering in New York City, had already removed a grapefruit sized tumor from my chest. They also removed 1/3 of the right lung, right diaphragm and 3 inches of esophagus around the tumor. They even removed some pericardium around my heart. Talk about getting wide margins! I was grateful for the two fellows who were maybe 40ish, a woman and man. They sprayed saline solution into my chest cavity and sucked out the fluids. It sounds so simple like an oil leak on the floor of a garage. Even after that, the tumor ruptured and they all grabbed it out in pieces. It harkens me to picture a Three Stooges skit as they worked around my open side.
I really had planned to do radiation because my surgeon, Dr. Bob Ginsburg, the son of a butcher, told me it was necessary to do as a precaution. I believed him but, Laura my wife, Ellie my Mom, Meghan my sister the RN, all seemed to think I was crazy to have the radiation. Even my local Doctor asked, why did I have to do anything? He was like the 1960’s American Doc who enjoyed a mild diet of Marlboro’s during his evening hours. Well they all got to me. I did nothing because the fear of radiation… the gift that keeps on giving.
I prayed, juiced and lived a relaxed lifestyle. It seems to suit me. I think prayer and a balance of opinions helped me find the answers. My daughter Tara Lynne is not 4 months old now, but finishing her senior year. My wife Ellie says my two boys just came along after my surgery. I either had faith that I would survive or I perhaps was a tad overzealous thinking I would dodge another bullet. Growing up, I was the accident prone kid: a shovel to head wrecking a snow fort, hit by a car at 60 mph down the Jersey Shore, fell off Buttermilk Falls Cliff in New Jersey, and a few car jaunts… rolling a ‘74 Pinto wagon as we raced from the Jersey Devil down the Monkey Town Road in the pine barrens of South Jersey. They say God watches out for fools, babies, drunks, and well… So vaya con Dios! Live today and ask for peace and healing. Shalom! Jim the Juice Man
22 Year Thriver, Marge Rudloff
February 2014
Wise Advice for the Newly Diagnosed
In 1992, Marge Rudloff was diagnosed with uterine LMS after a hysterectomy. Despite pelvic radiation, it recurred on her bladder within a few years. Since her bladder surgery, she has not had another tumor. It’s been 22 years since she first heard the word, leiomyosarcoma.
There was no internet and online resources when Marge was diagnosed in 1992. All she had was a one page print out about LMS. In 1998, six years later, she found (on her work computer) the ACOR online discussion group and “talked” with other survivors. In 2003, she actually met them in person at the first LMS Hugfest gathering in Lancaster, Pennsylvania.
While Marge has not had a recurrence of LMS in the past 17 years, she has suffered from the long terms side effects of her treatments. Radiation damaged a large section of her bowel which had to be removed, resulting in on-going diarrhea. Surgery had its side effects too. After her bladder was removed, she suffered from kidney infections which developed into chronic kidney disease. That led to a nephrectomy (kidney removed) eight years later.
After 22 years, Marge continues to get annual CT scans of the chest, pelvic and abdomen.
Marge thinks about LMS often, but doesn’t worry about it. If something different or unusual happens in her body, LMS is her first thought. Marge states, “I feel good but I don’t have my head in the sand. I volunteer for a Cancer Hotline so I try to keep up with things somewhat.”
An unexpected good side effect has been the enhancement of love and respect she has received. She was surprised at how many people cared and wanted to help.
Marge shared, “I’m still always amazed at how far my husband will go to care for me, encourage me, and just be there for me. We will be married 50 years in February, there definitely was a time I didn’t think I would see that. Love that guy!”
From her LMS journey, Marge has learned to be her own advocate and research things for herself. She doesn’t take everything a doctor says as gospel.
What’s her advice for newbies? “When a doctor tells you to get your affairs in order, it often means you have reached the limit of HIS abilities. Don’t be afraid to get a second opinion. I’ve heard too often that someone will stay with a doc because they like him. Don’t rush to making a decision on treatment, research your choices. You are blessed to have so many people who can share their knowledge and experiences on the ACOR online list.”
13 Year Thriver, Myrna Cohen Doyle
From Toronto, Canada
I was diagnosed January 29th, 2001 during a “routine” hysterectomy for fibroids. I had my first met in 2005 in my right middle lung. Second met in 2008 in the same right middle lung. I am currently a stage IV, 13-year survivor.
What procedures or treatments have you had?
Partial hysterectomy, my ovaries were left 2001. Pelvic radiation 5 weeks, 52 grays, in May 2001. Clamshell thoracotomy right middle lung 2005. Right middle lobe removed (lobectomy) in 2008.
Where are you right now, medically? Do you get scans?
I see my sarcoma specialist and my radiation oncologist once a year and get chest CT scans once a year. Right now I am NED.
Advice for the newly diagnosed?
You must be your own patient advocate. Ask questions. Get hard copies of all of your scans and tests. Have your samples re-tested if possible. Don’t be afraid of your doctors they are human too, they are not super heroes or rock stars.
Try not to be afraid. Help is out there. Get control of your “health life” even if you think that your body has betrayed you. Don’t be afraid to ask for help. Our group has taken away so much of the fear. Let your families be your best supporters. They want to help but they too are afraid.
What is your biggest challenge as a 13-year survivor?
Planning for the future. LMS is so sneaky. I thought I had it beat after almost 5 years, the gold standard, only to have a recurrence in my lung and then another one after that. I get nervous every 4 or 5 years because my ULMS has been so slow growing.
I am hoping that there will be therapies available for all of us. For now, surgery has been my best option.
16 Year Thriver, Deborah Gates
April 2014
Not a moment to waste.
Attorney Deborah Gates was a powerhouse before she had ULMS, and true to her nature, she hasn’t let her diagnosis rob her of one single second. Successful and too busy to be sick, Deborah was an executive with a Fortune 500 corporation (in 1992, she had been appointed Vice President, the first woman at that level.) In her spare time, she volunteered as the President of the Board of Directors of the local hospice, and on the Boards of Directors of the State Nature Conservancy, the state symphony, and the local hospital foundation. “I regularly worked evenings and weekends so I scheduled an outpatient morcellation hysterectomy for Christmas Eve 1997, so I would not miss work” states Deborah. When Deborah understood what the pathology report meant, she pledged, “If this damn leiomyosarcoma could come back and kill me in one year, I want to resume ballet and I want to lie on the grass and watch the clouds. I want to spend my time with my family and my friends and not in windowless conference rooms.” And that’s exactly what she did: ·
She resumed ballet and jazz and appeared in both ballet and jazz dance performances
Completed fourteen triathlons and five marathons
Learned how to play the harp
Was certified as a mediator under Washington State law. (Presently in the process of adding a foreclosure mediation certification to assist homeowners in retaining their homes.)
With her husband Steve, she purchased their dream beach home on Puget Sound, complete with a nesting pair of bald eagles.
Steve and Deborah hiked together in the Olympic Mountains and traveled around the world snorkeling and scuba diving.
Became an elected officer on the Board of Directors of the Sarcoma Alliance.
With her collie dogs, she pursued agility, tracking, and appeared in TV commercials.
Was elected to the national board of directors of the Collie Club of America.
When Deborah’s 53-year-old husband died unexpectedly at work in 2006, she used her grief to make changes in the Washington State hospital safety standards. Presently, she is advocating for tougher standards on a national level. Her husband might be alive today if these safety standards had been in place in 2006. Deborah’s 16 years since diagnosis is an example of making every moment count. “Life doesn’t have to go on hold. Do what you’ve always wanted to do, what really matter to you and reach for the stars!”
Warren Bailey, 13 Year Thriver
May 2014
Back in the Game
In March 2001, at age 55, I got the bad news from my primary doctor in Anchorage, Alaska, that the 6 cm lump in my thigh was Leiomyosarcoma. There literally wasn’t an oncologist in the entire State that knew anything about treating this cancer. The closest sarcoma center was the Seattle Cancer Care Alliance. My wife and I traveled to Seattle in our motor home, 2500 miles with winter still going strong down the Alaska Alcan Highway. Little did we know that Seattle would be our home for the good part of the next 5 1/2 years, with many treatments including many surgeries, AIM for chemo, radiation, and hyperbaric treatments and more.
After a lung surgery in July 2005, I have been NED (no evidence of disease.) I finally got back to the Sport that I love so much, racquetball. I used it to bring awareness and raise money for LMS. I recently became the number one racquetball Player in the country over 65 years old, by winning the National Masters Racquetball Championships in Tucson, Arizona and made it into the Alaska “Hall of Fame”. Photo: Huntsman World Senior Games where Warren won a Gold, Silver and Bronze metal.
10 Year Thriver, Laura Penny
Another Grateful Ladybug
My GYN had been monitoring a 4 cm “fibroid” starting in 1997, when I was 37. But in 2004, I got a very heavy period and found the fibroid had grown to 10 cm. My GYN said it was time to take it out. I opted for a myomectomy. He warned me about LMS, but said it usually happened when the growth was more pronounced. On July 1, 2004, I got results: low-grade LMS. I was devastated, especially because I had three young children. I got a TAH/BSO in 2 weeks. After surgery #2, I went to Sloan Kettering (MSKCC) for a consult, and all they told me was to watch and wait.
My emotions were raw, but I got through this agonizing time by reading Lance Armstrong’s books and holding onto every shred of hope I could find. It recurred a year later, 2005, with two smaller tumors in the same place. I had another surgery. I went on Femara. Three months later, my follow-up scan showed a tumor in the same place again, widespread lymphadenopathy, and eight lung nodules.
In early 2006, I had VATS, a bronchoscopy, and a mediastinoscopy, all of which indicated sarcoidosis, not LMS, in my lungs and lymph nodes. Apparently the mesh used in a previous surgery caused an autoimmune reaction. The pelvic tumor remained. The surgeon told me the previous doctor had missed the second tumor in 2005. He removed that tumor in late 2006, and found and removed a second 2 cm tumor.
In early 2007, my onc started me on Faslodex. I still get those shots monthly. My scans are all clear.
In 2010, I started having lunch with others in Maryland with ULMS. Soon the “Ladybugs” were born, giving me a place to support others and voice my own fears. I will celebrate 10 years since diagnosis on July 1, 2014. My kids were 11, 9, and 2 when I was diagnosed, the youngest adopted from Cambodia after already losing one mom. Now they are 21, 19, and 12. I know no one’s future is certain, but I am thankful I’ve seen my kids grow up.
Julie Lindell
July 2014
Mixoid ULMS
I was a 16-year-old, junior in high school when I had a biopsy for a misshaped, enlarged uterus. They said that it was not cancer. They scheduled a surgery a few months later and found a baseball size tumor. Because I was so young, they didn’t want to damage my uterus or bladder so they only got 95% of it. The remaining 5% “benign” tumor the surgeon had left behind, grew to a large cantaloupe in just 5 months.
By my 17th birthday, they went back and took out my uterus, both ovaries, appendix, bladder, part of my colon to make a new bladder, another part of my colon because it was close to the tumor and the upper portion of my vagina. I then had 28 radiation therapy treatments.
I was told I had uterine myxoid leiomyosarcoma. There were only 10 reported cases and only one was in someone young like me. I was really quiet and shy and tried not to complain. I have learned that was a mistake. There are medicines out there to help with the side effects, especially now! So tell the doctors, nurses and therapists all your problems, because if they don’t know, they can’t help you.
I haven’t had any recurrences, thank God! But I do worry about having the radiation so young. I have a narrowing of my colon due to late radiation side effects that sometimes bothers me. I’ve had a couple surgeries on my bladder too. I am a radiation therapist myself now, and know so much more. I want to help people get through the worst time of their life so they can get back to enjoying it.
Helga Lavigne from Ontario, Canada
20 Year ULMS Thriver
August 2014
Coping with long term side effects from radiation therapy.
In December 1993, age 58, after an emergency hysterectomy, I was told I had LMS. The oncologists told me I had a 50/50 chance of survival. I was shell shocked. I went for 25 radiation treatments after being told the potential side effects would not show up for at least 10 years. Follow-up was only pap smears, pelvic exams and a periodic lung x-ray.
To deal with my mental anguish I saw a psychiatrist and took an antidepressant for several years. To this day I am still expecting the other shoe to drop. This cancer can return at any moment.
In July 2001, 8 years after my diagnosis, a metastasis showed up on a lung x-ray and was surgically removed. I declined adjuvant chemo much to the dismay of my doctor. At this point, my daughter found the ACOR Listserv. I found so much valuable information unavailable here in Canada.
In February 2004, I had a total mastectomy for carcinoma which had spread to a lymph node. I turned down chemo and radiation. From 2004 to 2010 I had CT scans every six months and took Arimidex to block estrogen and Metformin for my diabetes. My doctors suspect that it helped my remission.
This March, the radiation side effects caused a bowel obstruction and resulted in surgery. I now live with a colostomy. Obviously the radiologist back in 1994 never thought that I would survive 20 or more years.
So after many years living with a roller coaster of emotions, giving away my clothes, planning my affairs, praying to God, whose existence I had doubted on occasion, I am pleased to still enjoy life with my family and friends. I admire members who carry on so valiantly from one treatment to the next. I must thank the ACOR listserv for giving me a sense of belonging. It has allowed me to feel empathy for and kinship with so many individuals, some of whom are no longer with us.
Thriver, Beth Grady
September 2014
30 Years!
My story begins in 1983. During my hysterectomy for a fibroid, the surgeon removed an intact grapefruit-sized tumor weighing 1.5 pounds. It was a “stromal tumor of unknown malignant potential” or STUMP for short. The doctor explained that it would be considered cancer except that it had a low mitotic rate. I spent the rest of that day wondering whether or not I had cancer? But I soon forgot and no follow-up was advised.
Ten years went by. I experienced many changes during those years Ten years went by. I experienced many changes during those years including a divorce, a marriage and retirement. I started hormone replacement therapy (HRT.) 1995, during a pelvic exam my doctor discovered a large retroperitoneal tumor. Just prior to removing the mass it ruptured, spilling the fluid contents into my gut. They said it would “probably behave in a benign fashion.”
Not until 1999 did I have my very first CT scan for another retroperitoneal tumor. Surgical pathology identified as low-grade leiomyosarcoma (LMS). In 2000, I was again in surgery to remove a pelvic low-grade LMS tumor. In 2003, my CT scan indicated one tumor in the pelvic area, but during surgery the doctor was surprised to find five. Scans don’t always tell the whole story. I discontinued the HRT because it was evident that the estrogen was feeding the tumors.
About that time, I discovered the ACOR LMS website and an LMS support group led by other patients in the SF Bay Area. I also traveled for the first time to a sarcoma center for a second opinion. My 2004 CT showed a large tumor in one lung and a small one in the other lung. Surgery revealed the larger one was predominately a low-grade lipo-sarcoma containing both low and high grade LMS.
I had no evidence of disease (NED) until 2007, when another LMS tumor was removed from my abdomen. In late 2008 a new 2 cm mass in the abdomen was seen on the CT scan. I began taking letrozole (Femara), an anti-estrogen drug and just four months later the 2 cm thingy was now just a residual 3 mm. EUREKA!! In 2009, the abdomen/pelvis scan showed a 3 cm mass. In 2012, I lowered my letrozole dosage to ½ tablet per day to help both the hot flashes and bone density. This pelvic nodule is still stable today and all lung scans continue to show NED.
I feel certain that if I had access to the ACOR website back in 1983 I wouldn’t have gone through so many surgeries. I keep abreast of new developments in the LMS arena without dwelling on the subject. Many good things are happening. I’ll see you at the LMS Retreat!
25 yr. Thriver, Bobby Whitfield
October 2014
ASK!
I was diagnosed June 19, 1989. I had an operation on what was supposed to be a hernia in the right groin area. I was sent to NIH and offered a trial protocol. I was given over 13 different types of chemo and 6 months of radiation, over a 15-month period. I had 12 metastases to my lungs. I had just turned 18, graduated high school and was enrolled in college. I was admitted into the children’s clinic.
I was reminded how much worse it could be, watching babies and kids with a life threatening diseases. There is nothing more heartbreaking than seeing them with needles, bags of chemo, their trees (IV Pole) walking down the hallway. I wasn’t ready to be done with life. My attitude totally saved me. It takes a lot to go through this disease. You have to consider everybody around you, what they are experiencing and how they are handling it. Even when you are at your worse, sometimes you put on a poker face and smile. You are a hero in their mind. Whatever it takes to win, do it!
There are always going to be issues in your life from cancer. There is not a day I don’t think about it. I am always suspicious of bruises or knots. It’s been 25 yrs. and I still have issues from radiation. My advice is to keep a journal. Write everything down, that way you can reflect back to your experiences with a particular procedure or treatment. Ask questions to people that have gone through this. There are a lot of things doctors don’t tell you. They are busy trying to save your life and don’t think about all the issues you may have later. So ask somebody.
11 Year Thriver, Candace Berg
November 2014
Retinoblastoma & ULMS
In 2003 I went to the emergency room due to excruciating abdominal pain. An ultrasound showed a 10cm mass in my uterus. I had a complete hysterectomy, removing the tumor in one piece. Because of narrow margins I had pelvic radiation. In 2005 my CT showed a tumor in my lung. The surgeon had to remove the lower lobe of my left lung. During the past nine years I have had probably fifteen lung mets treated. Most of these have been ablated with either radiofrequency or microwave ablation. If these less invasive techniques weren’t possible, I had VATS surgery. I had a couple of very huge surgeries to remove the pancreas tumors and the tumor in my superior mesenteric vein. I utilized interventional radiology techniques of Y-90 and chemoembolization to control the liver research.
I tried doxorubicin in a clinical trial but it didn’t work. I currently have active disease in my lungs and liver. I hope to continue to treat my disease with modalities which balance tumor control with maintenance of my health and quality of life. I plan to continue to utilize complementary medicine as I have since my original diagnosis. If something won’t hurt me and maybe help, I’ll try it.
Dr. Kossovo gave us some advice years ago which I try to follow; Stay as healthy and strong as you can for as long as you can, so you can utilize treatment advances as they come along. The fear will always be there for me. I need to not let fear overwhelm me; and instead focus on people, activities and thoughts that fill me with gladness and appreciation for being alive.
In Remembrance: Candy Berg fought a long and valiant battle with LMS for 15 years. She passed away July 30th, 2018 at age 66, having exhausted all treatment options.
Her efforts to expand treatments for LMS patients by aggressively seeking out novel treatments and by her participation in multiple clinical trials helped to move science forward. She possessed intelligence, grace and compassion, and worked to help others suffering with the disease to make the best choices in their medical care. Candy remained positive and hopeful throughout her battle. I remain hopeful that a cure will be found.
Christopher Berg
Candy’s husband of 44 years and care partner
Freda Contreras, 14 Year Thriver
Kuwait
They are my family
Joining a support group is a sure way of getting the push needed to go on with the fight. This I understood when I searched on the Internet after that November 16, 2000 shocking diagnosis of LMS of the uterus. I found ACOR (Association of Cancer Online Resources) and it has become my lifeline. Through the years, I have befriended cyber buddies and were in constant communication, in private, with me.
When my LMS didn’t show up, year after year since diagnosis in 2000 till today, I slowly “disappeared” but have continued lurking on the support group.
Last Thursday, a few minutes after getting the report of my CT scan, I felt the inkling to reveal the report to the group. I told myself that after all, they are my family and deserve to know. And I also needed to share it to those who “have been there, done that” thing. I made my very first post after a gap of many years and consequently received responses.
Another list member has given me hope, “… as far as starting from scratch — think of this as just needing to ‘restart the machine,’ but with the benefit of already knowing how to drive it. 14 years ago, the medical knowledge for LMS was significantly more primitive than it is today. Additionally – today, you have both your own experience to draw strength from, plus a world-wide network of friends.”
Yes, she is right!
If you have survived leiomyosarcoma for 7 years or more – please share your story with us!