Cancer

My Cancer Experience

In April 2015, I was diagnosed with Stage 2B non-small cell lung cancer, adenocarcinomaKRAS mutation (these are also called oncogenes or driver mutations or driver genes).

My experience with lung cancer began the same as many other LC patients, with a nagging, lingering dry cough. From December 2014 to March of 2015, I had what seemed like a continuous upper respiratory infection. Typical for me during the winter, it cleared up,  recurred and cleared up again.

Along with the usual prescribed steroids and antibiotics, my primary care physician recommended a chest x-ray. I postponed the x-ray thinking the infection would run its course like it always had before. I’ve been prone to colds and respiratory infections all my life and I had no reason to think this was any different.

By the end of March I had had enough with the nagging cough. On a Friday in late March 2015,  I went in for a chest x-ray on my own instead of calling my doctor because her office is closed on Friday.

As I sat in the waiting room of the radiology clinic while the tech prepared a CD of my x-ray, my phone rang.  I was surprised to see on the caller ID it was my doctor.   She was in the office doing paperwork and had received a call from the radiologist after he read my x-ray. She asked me to stop by her office right away.

I knew the minute she came into the exam room there was something wrong.   She explained the radiologist’s finding that a spot appeared on the x-ray.  “Could be BOOP. Let’s not get ahead of ourselves.”  I knew better.

Referral to a pulmonologist resulted in a CT scan that confirmed the presence of a 5-cm mass in the upper right lobe of my lung. A subsequent PET scan confirmed uptake activity suggesting cancer.

Fortunately, I live about two hours away from Houston and MD Anderson Cancer Center (see also US News and World Report).  Within the week, I had an appointment at the Suspicion of Cancer Clinic (I know. I laugh, too. I picture lots of people in trench coats and Sherlock Holmes hats).  This led to a whirlwind of consultations, scans and tests. Much of it is still a blur.

In April 2015,  I received the phone call that would push me off a cliff and land me in another world, never to return to my old one.

My tumor was large (5 to 7 cm) but localized (no lymph node involvement).  Because of the size of the tumor, it was staged at 2b. It was first thought I had some lymph node involvement, hence the “b,” but, further testing proved negative.

Long story short, surgery was not recommended. Instead, I received IMRT radiation therapy and chemotherapy (carboplatin and paclitaxel) on a clinical trial:  six weeks of radiation (5 days per week), daily doses of a study drug (trametinib) interspersed with three chemo sessions to support the radiation;  then three full-strength chemo sessions post-radiation.

I completed treatment on September 24, 2015.  The first PET/CT scan post-treatment showed a marked reduction in the tumor.  Subsequent scans showed no evidence of disease (NED).  I had PET/CT scans every 3 months for two years and have just graduated to every 4 months.

Two and a half years out from treatment I’m still NED.

Like everyone else I know who has been through treatment for lung cancer, or any cancer, there were some bumps along the road.  Pneumonitis, fatigue, rashes, minor infections, chemobrain, just to name a few, not to mention the psychological and emotional toll it takes on you.  I won’t go into the gory details because every patient and every cancer is different.  What I experienced, someone else may not.

Do you have any advice for someone newly diagnosed with lung cancer?

Yes, just one piece.  If at all possible, find a comprehensive cancer center near you.  Even if you have to travel, choose the CCC over your local cancer center.    I often return a blank look at people who say, “Oh, I don’t want to drive that far.  It’s too much trouble.”  Okay then.

CCC’s are research institutions supported by the National Cancer Institute.  The doctors at CCC’s specialize in your type of cancer versus a local or regional or for-profit center.   CCC’s offer the latest in treatment and research and a wider range of patient services and support. It’s your life. You want the best science has to offer.

Just a few of my favorite resources

  • National Cancer Institute is the federal government’s principal agency for cancer research and training.
  • MD Anderson Cancer Center – consistently rated the #1 cancer center in the world.  As bad as I hate Texas, I’m so fortunate to be able to access MD Anderson.
  • American Cancer Society – tremendous resource for not only cancer info, but patient support such as travel and lodging.  I lived in Houston for 6 weeks during the radiation phase of my treatment.  ACS partners with hotel chains to  provide free and deeply discounted hotel stays.
  • Bonnie Addario Lung Cancer Foundation – can’t say enough about this organization (and its founder Bonnie Addario – what a force!) and all they do to empower and educate patients, especially those who don’t have access to comprehensive cancer centers.  Their mission is to offer patients without access to CCC’s the same level of treatment.

Updated March 2018