Words of Wisdom From Leiomyosarcoma Patients and Survivors
Words of wisdom from Leiomyosarcoma (LMS) patients and survivors. Leiomyosarcoma patients and survivors share their experience and insights. Newly diagnosed with LMS? Call us for help navigating this new journey. Caregivers are encouraged to call us too! 1-866-912-2730
LMS Statistics by Vicki Strong
Ignore statistics! Statistics for rare diseases are skewed toward the negative because it takes many years to gather enough numbers to be mathematically sound. So statistics are based on results from 5-10 years ago. In just a few years, diagnostic imaging has improved, morcellation is being eradicated, and there are literally dozens of new treatment options from targeted radiation to new chemos to immunotherapy. And there is this: With LMS online groups like this, and websites like LMSdr.org, patients like YOU are knowledgeable, overall healthier and better equipped to be their own advocates.
This is Your New Job by Amy Regenstreif
Approach it that way!
- Organize your money
- Organize your health insurance
- Make up your mind to come out better than the day you were diagnosed
- Learn to ask for help
- Tell people exactly what you need
- Don’t feel guilty… it’s not your fault
- Get at least one consult from a sarcoma specialist and surgeon
- Always speak up, ask questions and get answers
Second Opinions by Sharon Anderson
Scanxiety by Facebook Member
“Scanxiety” describes the apprehension felt by people with cancer as they wait for their next scan.
- Take Ativan… why not?
- Plan B. Have your plan B ready in case plan A didn’t work. Knowing your next steps ahead of time will help you feel less powerless and be in control of the situation.
- Go to your happy place… literally and figuratively.
- Pretend you already got good results.
- Don’t tell other people about your upcoming scans… just when you distract yourself they will start bugging you for the results and making your anxiety worse. Tell people AFTER you have scans results.
- Meditate and calm your mind.
Insurance by Vicki Strong
No does not mean no!
Many if not most of us have had a recommended treatment or test or an insurance payment denied. Do not panic and do not assume no is an absolute no! You have every right to appeal, not just once but again, and again… If you do not have the energy, enlist the help of a wise friend or another cancer survivor to help. Engage your prescribing doctor, a patient care coordinator at the clinic or a hospital social worker by asking them to write a letter or make a call on your behalf.
Have a good cry if you need to in order to get through the initial frustration. Then, drop anything combative, confrontational and emotional; arm yourself with facts, logic, and confidence and go get ’em!
Hormone Receptor Tests by Lauren Rosie
Keep HOPE by Daryl Brown
Hope sees the invisible, feels the intangible and achieves the impossible.~~Anonymous
No matter how dire your diagnosis, keep HOPE in your heart. New breakthroughs are being made every year. Diagnosed with LMS in June 2011, my gyn onc kept saying over and over and over again: “This is grave, very very grave.” I turned around and started looking for a shovel to dig my grave. Many LMS patients have participated in cutting edge clinical trials that are now routine treatments for LMS patients. We are the vanguards, willing, with Hope in our hearts, to step into vast unknown territory with the strongest hopes that this will be the trial that will make a difference in our survival. Yondelis was the trial that gave me 20 months of stability. A miracle! My hopes now are on Doxorubicin and Olaratumab to give me more months of stability. Don’t give up! Let’s go arm and arm together, with Hope in our hearts that we will enjoy another glorious new spring — a renewal of life!
- 5.5 yrs uterine leiomyosarcoma
- 15 yrs endometrial cancer
- 16 yrs melanoma
- 25 yrs breast cancer
It Takes A Village by Susan Titus
Optimistically Cautious by Meg Thorburn
I much prefer the term “optimistically cautious”. Caution is imperative – but for our decision-making and actions, not our spirit. The decisions we make during our cancer journey are monumentally important. Even when we are exhausted, frightened and in pain, we must somehow pull ourselves together to make well-informed and non-emotional decisions. Hope should not influence our decisions – but it is what gives us the strength to work to make the best decisions. Caution (reason) is our guide; optimism (hope) is our light.
Beware the "Be Positive" Police by Sharon Anderson
Watch out for the “Be Positive” police. Nothing makes you more depressed than people telling you to “think positive.” First, you can’t just wish away your sadness and fear. It doesn’t work. Second, the positive police are typically people who can’t bare to empathize with your feelings so they tell you to just not have them. Huh? A true friend will hold space for you to feel what ever you feel, acknowledge it and listen. THEN maybe you can do some practical things to help yourself climb out of the hole. See our page on coping with Leiomyosarcoma. You do want get positive feelings back in your life again, but you have to learn how to best get there.
What to Say or Not to Say to LMS Patients by Facebook Members
- You can handle this… you are strong
- Everything’s going to be fine
- Don’t give up
- Think positive
- Try to live your life to the fullest
- Were you stressed, angry or depressed before you got cancer?
- Did you smoke?
- There’s a reason for everything
- You’re not given anything you can’t handle
- Cancer is a gift
- I bet you really appreciate things in your life more now
- I know this (juice, cleanse, tea, supplements or diet) that you have to try
- You don’t look sick!
- You look great! (when you clearly don’t.)
- I have a friend I know who died of…
- You are cured… you’ll never have to worry about this again
- I stayed up all night crying, I’m so worried
- I know how you feel
- Just be grateful you don’t have….
- Is there anything you have always wanted to do that you still have time for?
- How long do you have?
- Can I help you organize your bills, walk the dog or do the dishes for you
- This really sucks. You don’t deserve this.
- I’m sorry this is happening to you
- I can’t even imagine how you feel
- How are you really feeling?
- Don’t worry about returning my call, email, etc. if you’re not up to it
- I’m sending you my love
- I’ll pray for you
- What can I do to help?
- What is your treatment plan?
- Can I give you a big hug?
- You can call me when you are scared, angry or depressed
- You can call me when you want to take a break and not talk about cancer too
- Is today a good day or a bad day?
- I can only tell you what happened to me, but It’s up to you to make a decision
- Find out the facts and whatever decision you make, is right for you
- What are the latest advancements in this cancer’s treatment? Would you like me to research this?
- Or don’t say anything… just listen and acknowledge what they are feeling
For Caregivers - Please READ with CARE!
This is a passionate article by Steven Thrasher in the Guardian. It is a must read for both patients and loved ones.
Leiomyosarcoma Survivor Stories
When I was diagnosed with uterine leiomyosarcoma (uLMS) in January of 2002, the outlook for my survival was very grim. There was very little research on LMS. Now 19 years later, I can honestly say that we are so better off, thanks to the LMS patients and loved ones’...
DONATE HEREHello fellow survivors! My name is Susan Hampton and I'm a Leiomyosarcoma survivor and thriver for 18 years. One Saturday in early August 2001, I woke and ran my hands down the tops of my thighs. I had a lot on my mind as I was due to leave for China within...
By Joanie Mulvey December 1, 2020 When confronted with LMS, it is easy to think “OMG... I’m going to die".... and become so scared and depressed. Yet, I recommend framing things to yourself in a different way. We can be grateful that our cancer was found and...
A Trail Blazer for LMS Patients After receiving her ULMS diagnosis in 2009, Estelle Bar Ness set out to learn all she could about LMS. By educating her doctors and advocating for herself, she gained access to treatments that had never been used in her country—and...
Hope Lives! Barb Soyka is getting ready to celebrate the 10th anniversary of her diagnosis with stage IV retroperitoneal LMS! In 2010, Barb learned that she had a football-sized tumor encapsulating her left kidney. She was initially misdiagnosed by no less than...
Kathy’s LMS journey: learning hope, compassion and new normals Kathy Breit’s cancer story is a difficult one, but the current chapter is full of happiness and hope. Kathy’s LMS odyssey began in 2012, when she was 58 years old. While showering, she discovered a...
“Life can be even better after cancer” by Vicki Behrens 2/20/20 Jennifer Kelley is a true cancer thriver! She has survived breast cancer for 11 years, melanoma for 10 years, LMS for more than 8 years, and uterine adenosarcoma for 2 years, and she is currently NED....
Benign fibroids? YEAH, RIGHT! Debie Gurkin lives in Belleville, Michigan and was diagnosed at age 49 with uLMS. That was over nine years ago. The original diagnosis was benign fibroids, and to that Debie says ,”Yeah, right!” So what happened? Debie’s journey...
Oct 28, 2019 Janesville, Wisconsin I was given two months to live, thirteen years ago. It was Sept 2006. Two years prior, I started having symptoms but was misdiagnosed. I have no regrets about that misdiagnosis because I truly believe my story would...
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...