When breast cancer patients are misclassified by subtype, it can mean the best treatment options are delayed.
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Recently, a headline on curetoday.com grabbed my attention: Some Breast Cancer Patients May be Misclassified (http://www.curetoday.com/articles/some-breast-cancer-patients-may-be-misclassified-expert-explains
I immediately clicked the link and read the article through, and although there was medical terminology that made it hard for this patient to follow the story as well as an oncologist, I immediately grasped that this potential for misclassification involved the subtype of breast cancer I have (HER2+) and that the problem is that guidelines have recently been changed in such a way as to make it more difficult for the treating oncologist to say, without question, if the patient she’s seeing falls on the HER2+ side of the equation or the HER2- side.
The research discussed how the possible misclassification indicated that patients would be identified as HER2+ when in fact they are HER2-. This is important because HER2+ cancers have some relatively new and unique treatments that can be effective in treatment at any stage, including slowing the progression of metastatic breast cancer. These treatments would not be effective on HER2- patients.
That’s the backstory. My story is that the headline pulled me in because I was misclassified back in December 2014/January 2015. My initial hospital and the pathologist they’d used labeled me as HER2-/ER-/PR-. That triple negative was, for me, the worst possible result in a bad situation. At that time, new to the world of breast cancer and experiencing the rollercoaster of emotions that every new patient goes through, I had quickly learned that the drugs easily available for treatment were not as numerous for triple-negative breast cancer.
Fortunately, my husband and I both agreed that the hospital my insurance had linked me to was not the ideal place for cancer treatment. My insurance allowed me, on Jan. 1, 2015, to switch my general practitioner and, thus, get in to a different hospital and with a different set of oncologists.
Luck was further on my side when the oncologist I was assigned to turned out to be proactive. When a biopsy of lung tissue indicated that the classification should be HER2+, she had the original breast biopsy tissue retested. This time it came back unequivocally HER2+ as well.
That HER2+ added two drugs to my treatment protocol. The three-drug combo seemed to work on me and today I continue to receive those same two drugs that were added after the HER2+ classification. Am I alive today because someone caught that error? I think the answer to that is a definitive “yes.” Since I experienced all of this early in my treatment, it opened my eyes to the idea that doctors, even the most skilled, can make mistakes and that I needed to be aware of my treatment and know what was going on, and if I wasn’t capable of that then I needed someone else looking out for me. I don’t blame the first pathologist or the people working in that lab, but I am glad I was not treated there.
Sometimes people tell me this change in classification would have happened anyway, once the doctors at my old hospital had become more involved in my care. Maybe. Maybe not. Misclassification has real consequences for patients. It can mean you don’t receive a treatment more likely to be effective. It can also mean you receive a treatment that won’t help, adds unnecessary side effects, costs money, and puts the chance of getting the best treatment options far in the distance, maybe too far.
Despite having metastatic breast cancer, there are many times a day when I see how lucky I am. That CURE headline reminded me of one.