Thursday, February 04, 2010
From: Tracy Smith, Lisa's sister-in-law
My sister in law has been diagnosed with Soft Tissue Sarcoma. There are many types of soft tissue sarcoma. They each call for a different type of treatment plan.
Lisa's sarcoma is a highly dense mass which means it is aggressive and fast growing. As of last week it was 2-3cm. If it is under 5cm when treatment begins we have a *better* prognosis. I'll stop right now to say I hope Lisa doesn't read the rest of this. I told her this morning I thought she should stop reading anything on the Internet . Not because it's not dependable information but because there is so much information out there and she has so little information from her doctors. Sarcoma is an ugly beast. The prognosis is never great but it ranges from not great to freaking terrible. Not knowing what her complete diagnosis is has been making me (and everyone else) crazy.
Unfortunately, her doctor isn't able to give her a more specific diagnosis. Without a more specific diagnosis Lisa cannot begin an effective treatment plan. He is, by all accounts, a wonderful man and a wonderful doctor but he simply isn't equipped. This is why Lisa needs to get to MD Anderson. Everything I read about sarcoma says the same thing: in order to properly diagnose and treat sarcoma you need a complete diagnosis and you need to go to a sarcoma specialist.
Dr. Murray F. Brennan who is the Chairman of the Department of Surgery at Memorial Sloan Kettering Cancer Center (the #2 treatment facility for sarcoma behind MDA) had this to say regarding a soft tissue sarcoma treatment plan: "Often all histologies (all types) of sarcoma are treated as if they all behaved the same. They do not." He also notes that the important factors in determining a patient's prognosis include: location, size, grade (fast or slow growing) and whether or not it's spread.
Her doctor at Scott and White can tell her *some* information about the location (breast, which presents some complications due to the rarity of it showing up in this part of the body and its proximity to lymph nodes), size (2-3cm as of 12 days ago which is "good" except for that was 12 days ago) and grade (aggressive and fast growing hence the concern about the days that are ticking by without a proper diagnosis and treatment plan in place). However, there are concerns that it may also being showing up in her lungs and liver. For us to know for sure, a specialist needs to read her latest MRI to determine if this is the case.
IF it has spread the treatment plan will be completely different. Scott and White Health Plan(her insurance provider) wants to move forward with an incomplete treatment plan. This isn't acceptable. Because of the rareness and complexity of soft tissue sarcoma, starting a surgical treatment plan before determining the complete diagnosis can be life threatening. The research indicates that seeing the right type of specialist is the NUMBER ONE factor supporting patient survival without recurring cancer. Sarcoma is highly recurring.
Lisa's husband, Andy, has compiled information from every leading cancer and sarcoma-specific institution and everything points to Lisa needing to be seen at MD Anderson. I'll be posting that as soon as I can.
We are so fortunate to live in a city where we have the best medical care available in the world. My sister-in-law needs access to that care. Her life literally depends on it.... which is where I break down and cry. Again.
I know everyone always says that God doesn't give you more than you can handle and with Lisa's strength and determination and the support and around-the-clock work by her amazing husband (it must be genetic) they are going to get through this.
And their faith is going to be stronger.
And they are going to teach the rest of us what it means to truly have faith.
And I'm looking forward to that lesson.
Because more often than not I'm finding myself sobbing at the computer and wondering why?!
In that vein, to combat the times when we are feeling helpless and frustrated, we're formulating a plan of action to best assist Lisa in getting into MD Anderson with insurance coverage ASAP. She's decided to be seen as a pay-patient for the initial diagnosis. It's a big chunk of change just to get in the door but, as we've all been telling each other, it will be worth every last penny to get a full diagnosis and a comprehensive treatment plan.
As for the next step, please stay tuned! We're heading to Conroe tonight to work with Cris (Lisa and my father-in-law) on a comprehensive, logical, aggressive approach for getting the results we need for Lisa. We expect to post the next step (WHICH INVOLVES YOU!) tomorrow morning around 9am.
at 5:29 PM