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.

Second Opinions by Sharon Anderson

When a doctor tells you there’s nothing more they can do, they are right. That doesn’t mean another doctor won’t have some other treatments for you. Get second and even third opinions from sarcoma specialists at major sarcoma centers. Ask the surgeon directly if they can operate, not your oncologist. Talk to interventional radiologists about all their methods to get rid of LMS tumors. Look for clinical trials. Ask for suggestions on our Facebook group. Don’t rely on just one doctor to know all possible treatment options.

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!

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!

Daryl Brown

5.5 yrs uterine leiomyosarcoma
15 yrs endometrial cancer
16 yrs melanoma
25 yrs breast cancer

Optimistically Cautious by Meg Thorburn 

During our LMS journey, we are often advised to be “cautiously optimistic”.  But why be cautious about our optimism?  It is hope that keeps us going, and we need to keep our hope at 100% – whether it is hope that we will survive the cancer, hope that we will live long enough to help our children reach adulthood, or simply hope that we can be at peace when we pass.

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.