For those out there who don’t know, when it comes to cancer research dollars Lung Cancer is grossly underfunded. I wont go into all the stats or post a bar chart (see Google for those) on how it compares to other cancers. Long story short, the funding to patient ratio for LC is hardly worth mentioning. That said, our community of patients, caregivers and advocates is second to none. After all of our appointments on Thursday we had a plan in place for Jeff that we felt pretty comfortable with. I did put a call into our doctor at Dana-Farber Thursday afternoon to run it by him. Friday morning he called me back. I explained to him what the latest scans show and what our plan of attack is. To my surprise he does not agree with the course of action. He said, “it’s unconventional.” What the? Now, Jeff and I love our oncologist at D-F. However, I was shocked to hear him even mutter the word “unconventional.” He said standard of care would either be WBR (whole brain radiation) or to switch treatments entirely. By the time I hung up the phone I didn’t know what to do. We had two very different opinions and to my surprise, our local doctors were taking the less conventional approach. I was so bewildered I thought about calling Aidan and Noah to ask them if 10/17 was opposite day or something!
With just a few business days until Jeff’s first scheduled treatment I suddenly felt a lot of pressure to get another opinion on the matter. By that time, I had received several messages via the blog, Facebook and email about what other patients and caregivers’ loved ones had done in similar situations. All really good information, and more ammunition to help us make a decision now and to help guide us in the future. At this point I knew I needed to speak with one more trusted professional to discuss the scans and vet out the options. Who could get me in touch with someone quickly? Arash of course! Before I knew it, I was on a conference call with him and Danielle Hicks from the Bonnie J Addario Lung Cancer Foundation. Danielle knew just who to talk to, Dr. Camidge, an ALK expert out of Denver. Dr. Camidge however, was at an event in Australia, but it was worth a shot. Danielle reached out to him and by Saturday morning my phone was ringing. My Caller ID flashed a California number. Yes! I knew it was her. Danielle apologized for calling me on a Saturday. (Danielle, if you’re reading this, you can call me anytime!) She let me know that Dr. Camidge supported our decision to use SRS. I hung up the phone and was finally able to relax.
In about a 24 hour timeframe friends and acquaintances from around the world (literally) came together to provide Jeff and I support in the form of medical opinions, advocacy, personal experiences, and plain old love. With a community like this I have a feeling those bar graphs that I didn’t share with you are going to change dramatically in the very near future.
Ahhhhh so sweet.
I’m also a LC survivor, ROS1. I totally agree. I’ve always felt that there is such a great community of very educated, helpful and caring people, all willing to offer experience and advice. I’ve met so many wonderful people throughout this journey.
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