Next Steps

The EmBen rollercoaster has not shut down.  When we last left off, we had just received the mind-blowing news that Emily’s PET scan revealed no cancerous activity in the lymph nodes or pleural lining, and little if any in the tumor site, and her doctor was pushing for an “outside the box” consultation for surgery.

The course of treatment most patients and doctors opt for is maintenance chemo every three weeks to delay reoccurrence, and many have been successful in living cancer-free for up to several years. Eventually, however, cancer can become resistant to maintenance chemo, and while this is currently Emily’s treatment method, she wants to be more aggressive.  Her goal is to be NED (No Evidence of Disease) for life.

Emily’s case is unique in that she is young and healthy (less than 1% of lung cancer patients are under 30), and she has shown remarkable progress with little complication.  Her cancer was staged level IV because it was in the lung’s pleural lining.  It now appears to be gone from there though, and has not shown up anywhere outside of the right lung.  For this reason, Emily’s oncologist, thinking outside the box, believes Emily can be treated as a stage III patient.

While surgeons in Japan are operating on advanced lung cancer, it is anything but routine in the U.S.  Emily and Miles have found their guy though – the Chief of Thoracic Surgery at Mt. Sinai Hospital in New York City.  Dr. Raja Flores has been a consultant to Emily for the past six months.  He has fully supported her treatment to date, and believes this is her window of opportunity for surgery.  The extent of the surgery will not be known until she is on the operating table.  Dr. Flores intends to remove anything that looks suspicious, and while he cannot guarantee the cancer will not return, he wants to give this 28-year old the best shot at a full life.  This means he may remove her entire lung – we won’t know until after the surgery.

Emily’s reaction?  She went straight to the mall and bought a new winter coat for New York.

Next up is a Brain MRI and Pulmonary Function Test today (January 22nd).

Preliminary planning is for a February surgery, followed by four weeks of rest, then six weeks of daily radiation in NYC.  Emily and Miles will then return to LA and resume maintenance chemo to be absolutely certain they eliminate every last cancer cell.

LOOKING FOR: A two bedroom living space in NYC or vicinity from early February through early/mid March, within 30 minutes of the Upper East Side with no stairs.  Does anyone have a lead?

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.

EmTay, Miles, and EmBen on their daily four mile power walk around the Brentwood Country Club (unofficially known as the Lung Loop) in preparation for surgery.

10 thoughts on “Next Steps

  1. We made this kind of choice for Daniel. The oncologists at Stanford said that even with aggressive chemo Daniel’s life span would likely be less than three years. The surgery that he had in Washington, D.C. was controversial and the recovery was a bear but two and a half years later he has an essentially normal life and “no evidence of disease”. If you have picked you surgeon carefully, as I know you have, this is a brave and life affirming choice. I wish you all the best. Our prayers are with you every day.

    Love, Chris, Ted, Max and Daniel

  2. Can you give me dates for NYC and I’ll put a feeler out to all my friends there to try and find you a sublet!

    Xo Azar

    Sent from my iPhone

  3. Emily’s reaction was to get a winter coat for New York. I love that so much. This cancer never touched that heart that’s for sure.

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