February 26, 2010

Sometimes you have to take matters into your own hands

I received an email yesterday from a stranger that was trying to inform us about different treatment options for Asher. While i was reading the letter I realized how common his story is. To better understand what i'm talking about i'm copying a part of this email:

Madame or Sir:

I had a low grade extraskeletal myxoid chondrosarcoma (“EMC”) in my thoracic vertebrae removed in July 2008. My radiation oncologist in Dallas told me that these tumors were very resistant to regular photon radiation and said he couldn’t help me. However, after doing my own research, I found out about great things they are doing with proton radiation. With proton radiation, the doctors can use a significantly higher dose to the target area and, thus, kill more of the cancer. I went to MD Anderson in Houston for a second opinion, expecting them to suggest proton radiation. MD Anderson, however, had no experience treating EMC with proton radiation and did not suggest it.

Another source referred me to Massachusetts General Hospital (“MGH”) in Boston. MGH has many years of experience treating all types of soft tissue chondrosarcomas in the brain and spine – especially in children. I underwent proton radiation at MGH from March 2009 through May 2009 and am cancer free to date. If your doctors have already told you about proton radiation, I apologize for repeating it.
The person also submitted his doctors info (which i will not disclose here), gave me their phone number in case i had more questions and wanted to talk to him/her.
Why am I copying this? I want you to understand that if YOU or anyone you know ever gets diagnosed with a disease such as cancer, please don't just sit back and listen what you are being told. Do your research, get a 2nd opinion, take matters into your own hands. The email mirrors many many stories that i've heard from patients undergoing proton therapy right now. Most (probably 75%) were never told by their doctor that proton therapy was an option, they found out thru friends, their own research or from strangers.
The email also reminded me what an awesome doctor Asher has. His oncologist immediately told us of the option to do Proton Therapy, we've always completely trusted her (still do), she is honest, she doesn't sugar coat anything, she is informed and she has the best interest of Asher in mind.We are so grateful to have Dr. McKnall. Healthcare is a business, and more than once I've been told that some doctors (fortunately not ours) just want to keep the business in their area or just because they are not informed or don't think some type of treatment could help, they don't bother to inform you of the option. You have the right to hear ALL options...that's all.

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