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Thursday, February 04, 2010

A plan is in the works...


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.

10 comments:

Anonymous said...

I continue to pray for Lisa. What a difficult time for and her family. You are a blessing in her life. May God bring all of you peace in your heart and heal her for the sake of her family.God Bless all. Sincerely, Theresa Lammers

Andrea said...

Continuing to storm the heavens on Lisa's behalf,
andrea

Joyful said...

The Lord continually brings Lisa to my mind. Praying for you all. God specializes in things thought impossible. When other's are saying 'can't', God says 'can'.

Trusting you in His hands,
Hugs,
Joy

Anonymous said...

praying..praying...praying for a wonderful lady! Paul

Faye said...

Continuing to pray on Lisa"s behalf..May God Bless You All:)

Moshelle said...

Thank you Tracy for this detailed update. It anwsers many of the questions I have from afar and gives me more specific direction on how to pray. I am praying for you all!

Bernie said...

It is comforting to know Lisa has such a beautiful family who is supporting and praying for her through this trial.....continued prayer for Lisa going up always.
.......:-) Hugs

Marsha said...

Earnestly praying for Lisa to be seen quickly and for a full recovery.

amy s said...

Tracy, I want to thank you for your knowledge on this and for your fight for Lisa! I pray that you and your father-in-law are successful with the ins. co. and pray that the fire to fight that is in you stays strong. I am thankful for you!

Denise said...

Prayers are going up.