Sometimes metastatic cancer can feel like standing 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 am now battling with our insurance to get the first line of treatment the test recommended – Gemzar and Carboplatin – covered.
But as I was approaching my next scan, I felt a little lost at sea (to keep to my anology). 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 a few weeks ago with a fellow metastatic breast cancer survivor, Kristi, who was chatting about her wonderful doctor (Dr. Shapiro, director of the breast cancer center 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 Dr. Shapiro said.
So yesterday, 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. Dr. Shapiro 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. Huge sigh of relief! 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.
So the lesson here? It’s worth it to get a second, third … even fourth opinon! 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.
This entry was posted on Wednesday, November 14th, 2012 at 12:01 PM and is filed under , , , , , . You can follow any responses to this entry through the feed.
You can , or from your own site.