There may come a day when,in response to the question “what kind of cancer do you have,” the answer may not come back “breast” or “lung” but “BRCA” or “KRAS.”This personalized medicine and genetic profiling science is very, very real, and patients need to be aware of their role. I learned recently that it’s important to take part early, even when you want “cancer” to be the very last thing you’re going to hear.
My husband was diagnosed with advanced pancreatic cancer in October and chemotherapy has been going well, all things considered. The tumors have reduced by 50 percent. But when his most recent scan showed a one percent change in the wrong direction, we decided to get ahead, to help determine what the next line of treatment would be. The best option was tumor profiling, provided through the Pancreatic Cancer Action Network (PanCAN). The only catch: they told us there may not be enough tissue in the core sample from the initial biopsy.
“Well, I’m not doing another biopsy,” he told me. And I panicked. I considered yelling at him: “Yes you will!” But then, I’m not wrecked with fatigue and nausea. I’m not facing down a shortened life span, I have not experienced the weird, uncomfortable, somewhat painful biopsy process. So I held my tongue. If only I could have turned back the clock. It was back in October that we should have been sure to get enough biopsy. We were deep in that hope/denial fog after he’d received an ultrasound that showed the likelihood of cancer, the likelihood that it had spread to his liver.
During the two weeks between the ultrasound findings and the liver biopsy, we did a lot of research – most of it in the search for false positives (it was a possibility the ultrasound was showing benign liver lesions, for example, so we prayed for that). Nowhere did we read about the importance of getting ample tissue sample for future genetic testing. We didn’t imagine we might need another biopsy down the road, and that we might not feel like getting one, which could mean tying our hands in terms of subsequent treatment options when time would be of the essence.The excellent core sample is just now becoming part of the conversation. Medical device companies are beginning to market new products for obtaining better core samples, for example, because they know how important personalized medicine will be to treatment decision-making.
Doctors and interventional radiologists are aware of the need for better samples sizes, because their pathologists are telling them.But there’s a long way to go. A recent Precision Medicine Initiative trial of the National Cancer Institute (part of the Obama administration’s war against cancer) had to face a $30M pause, delayed for at least six months. The reason? Of the thousands of trial recruits, 10 to 20 percent did not have sufficient core samples for DNA testing. It can only help for the patient to ask.
Simple enough to phrase: “With this biopsy, can we be sure there’s enough tissue sample to be profiled down the road?” You do have a role. For that first biopsy, you should hope to God it’s not cancer, but in case it is, make sure that you get everything you need.We got the call recently from PanCAN – thankfully they had enough core sample to do the profiling. Now I don’t have to bully a man who has already had cancer bully him enough.
By Jen Bannan for the Healthy Moms Magazine
Jen Bannan is a business writer, publicist and author of the short story collection Inventing Victor (Carnegie Mellon Press, 2013). Her work can be found at The Millions, Kenyon Review Online, Los Angeles Review of Books, the Chicago Quarterly Review and more. She and her husband have a daughter, 15 and two boys, 12 and 5.