March 20, 2018

The power of second — even third, fourth — opinions

Being metastatic sometimes feels like your'e on melting ice.

Being metastatic sometimes feels like you’re on melting ice.

Being an informed, proactive patient isn’t easy. Sometimes I wish I could just compliantly nod my head and forget about it all. But I know that’s not an option … not if I want to save my life. Having metastatic cancer sometimes feels like being on a melting ice float. You have to constantly be on the lookout for the next hopping-off point.

I’ve been at such a point lately. For the past several years, I’ve been seeing a prominent breast cancer oncologist at a cancer center a couple of hours from where I live. I’d go to him at scan time to get his opinion, then my local oncologist would implement the recommended treatment. It worked well for a while until I felt like the consulting oncologist was writing me off and not offering any new solutions. I decided not to see him anymore and began researching other options, such as the chemo sensitivity test by Rational Therapeutics. From the test, I found a therapy that worked, Cytoxan, and began battling with our insurance to get the first line of treatment the test recommended – Gemzar and Carboplatin – covered. After months of this I exhausted all my options and it wasn’t covered.

AsI was approaching my next scan, I felt a little lost at sea (to keep to my analogy). I felt I needed more direction. As luck (or in my opinion, God) would have it, I was sitting at a table at a Pink Ribbon Girls event with a fellow metastatic breast cancer survivor, Kristi, who was chatting about her wonderful doctor at The Ohio State University James Cancer Center. I had been praying for Kristi when her health condition was in jeopardy, and there she sat completely healthy and vibrant. She and her husband offered to help me get in to see her doctor.

On Monday, the day before my visit at OSU, I had an appointment with my local oncologist to go over my scans. As usual, I picked up my scans myself before the appointment (I hate to wait and feel I’m better prepared when I see them first) and was very disheartened to see that I had progression.  He recommended switching treatments, but agreed to wait what the doctor said.

So we drove 1 1/2 hours to our appointment. We waited a long time (over three hours!), during which I was asked twice to go over my medical history. I was told I had a “long and complex history.” I was feeling a little post-traumatic stress, going over all my treatments and surgeries. It kind of brings everything to the surface and makes me realize just what a hard road this has been. But it needed to be done — an occupational hazard of going for another opinion.

When the doctor finally came in, I knew it was worth the wait. The oncologist was very thorough and knowledgeable. He and his Fellow carefully looked through my current and previous scan and determined the progression was so small; it could have been attributed to a margin of error. Scans, it appears, are not an exact science and can be read differently depending on the radiologist. He recommended I stay on my current treatment and wait until the next scan. He also had recommendations on treatments down the road, including Affinitor, which is used to reverse resistance to aromatase inhibitors. There are even some clinical trials in which I can possibly participate. We decided to continue to see the doctor when decision time rolls around.

Since that time, I’ve had progression and now I’m on Affinitor and awaiting another scan. I am praying for a good outcome, but I feel good knowing I have a doctor who is thorough and knowledgable.So the lesson here? It’s worth it to get a second, third … even fourth opinion! When your life depends on it, you need to seek out the best doctors. I will never give up my search for finding the best therapies to keep this cancer in check. My dream is to get rid of it altogether, but if that doesn’t happen, I’ll settle for hopping to the next ice float until I find solid land.

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