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IF I HADN’T

IF I HADN’T

If I hadn’t had a mammogram, I wouldn’t have gotten a biopsy. I wouldn’t have known about DCIS called 0 stage. If I hadn’t had a lumpectomy to remove the DCIS, the radiologist wouldn’t have seen a second spot and marked it so the surgeon could find it and have it tested. I wouldn’t have learned about its more invasive stage 1. If I hadn’t had the lumpectomy because of the DCIS, my surgeon may not have referred me to a genetic counselor because of family history and I wouldn’t have learned that I was BRCH 2 positive. I wouldn’t have been able to make an informed decision about preventative ovary removal because I wouldn’t have known about the high risk of ovarian cancer. I wouldn’t have been able to decide the best course of action for another lumpectomy combined with radiation or a mastectomy. I wouldn’t have taken the time to educate myself about the outcomes because I wouldn’t have known about any of this. I wouldn’t have been able to tell my family on my deceased father’s side to get tested and they wouldn’t have found out that they were BRCH 2 positive. They wouldn’t have been able to tell their young sons and daughters.

It seems as if every time I read the news, I read about the changes to mammogram recommendations. I read that too many mammograms turn into false positives, too many mammograms create unnecessary anxiety in too many women, too many overzealous doctors finding stage 0 cancer needlessly perform lumpectomies that often never turn into anything. Maybe I was in a small percentage that would have otherwise fallen through the crack, but I would rather be a healthy 52 year old woman, mother, business owner, and friend addressing small pre cancer from a healthy place in my life then finding out later on that a mammogram would have found this small spot if the recommendations were less confusing.

Breast cancer caught as early as mine was because of a regular mammogram. Yes, there are likely thousands of stories of false positives or missed cancer. But the fact is that if I hadn’t had a mammogram because of the confusion of how many is too many and ever changing recommendations that make women confused about their risks, my little 0 stage cancer that turned into stage 1 may not have been found. My healthy life that I enjoy immensely could have turned out much different.

With all the articles from supposed experts continuing to question the validity of the frequency of mammograms, we need to slow down and remember some important questions.

Do you trust your doctor? Do you have history? Do you trust yourself? Any diagnosis requires your personal participation. Do you have Ashkenazi Jewish heritage because that combined with history puts you at a high-risk category for BRCH 2.

This experience has led me to a new outlook in the medical profession and deep trust in my doctor. Because she told me about genetic testing, my decision about my own healthcare led me to personal responsibility. I question everything and though I trust my care, I still keep in mind that doctors are “practicing” medicine and our healthcare system is based on a for profit model. Personal advocacy and trust are the two areas that must be in constant symmetry. My regular 6 month follow ups have turned out to be a necessary evil because I am always on eggshells waiting for results, but at the same time I have caught an early return of something that will likely require a mastectomy.

If your doctor tells you mammograms should be less frequent, trust yourself. Use your family history, your age, even if your breast cancer is on your father’s side, you may be at a higher risk as I was because of the genetic mutation that didn’t really get noticed because of the male line of cancer. It was because of a very knowledgeable RI doctor who pointed out the line and recommended a genetic test.

This proved very valuable and this makes me a more informed patient and, more importantly, an alive one.

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