Get it Right: Becoming Your Own Best Advocate

BY: RACHEL MARTIN

In 2018 I found a lump. I followed the advice of all the literature – I didn’t panic or assume the worst. I knew there were many reasons it could have crept up on me, and many reasons it could disappear. Unfortunately, that isn’t the way my story went. The next 8 months of my life became my ‘cancer treatment journey’, and though being diagnosed with cancer isn’t something you plan for, I never could have imagined the kinds of difficult choices that were ahead. I’ve often heard that it’s important to be your own advocate, especially in regards to your health, but it’s hard to picture what that looks like until you’re faced with it.

I self-assessed and found the lump myself (which is how most breast cancers are detected), so when I met with my doctor, armed with all the research I had done and my concerns, I was shocked that he denied my request to examine my breasts. At 30 years old, I was too young – period. At this moment I knew exactly what advocating for myself needed to look like. I repeated myself, asked if a nurse could come check me if he was too busy, I even offered to wait. Once he got the sense that I wasn’t going anywhere, he reluctantly checked the lump and knew immediately by touch that I needed further tests. A few weeks later when I sat in his office getting the news that I had a tumor in my breast, and a tumor in my lymph nodes, he apologized. He said that because of how aggressive my cancer was, had I taken his advice and come back in a few more months, the prognosis would have been very different. There is a good chance I saved my own life. 

Since the cancer had already spread and the pathology looked nasty, I was told there wasn’t a lot of time to act. Often a lumpectomy is the first step, but my medical team explained that chemotherapy needed to happen, like, yesterday. They wanted me to start in under two weeks and because of my age, they wanted me to speak with a fertility specialist. To give myself the best chance possible of having children in the future, I needed to freeze my eggs. This is where things started to get complicated… 

The fertility specialist needed more time. He wanted me to give him a month, so I could get hormone injections, go through my cycle, and so they could extract as many viable eggs as possible. He encouraged me not to let the oncologist pressure me to rush, and that this was a major decision I could regret. Neither doctor was wrong, but I had to l make the decisions with myself and my life as the priority. For me, as confusing and heartbreaking as it was, this choice felt clear. In the words of my life-partner, ‘what good will your frozen eggs be if you aren’t here.’ I turned down the specialist’s recommendations and got to work preparing myself for chemotherapy.

Fast forward four months: As my chemotherapy was wrapping up, my tumors had shrunk and my body had handled the treatments like a champ. Now it was time to start discussing surgery options. My situation is a little unusual – both my parents had cancer, I have the BRCA-2 genetic mutation, I am also triple negative and I also had concerning progesterone levels. This basically all means that cancer is something that I’m going to have be conscious of for the rest of my life. My surgeon recommended a double mastectomy, leave nothing behind, and take the ovaries out right away. I was completely shocked and unprepared for those words. Somehow it felt like getting my diagnosis all over again. 

I had every combination of choices in the world – take one breast or two? Leave the nipples or take them? Reconstruct, or not? Right away, or delay? Where would the tissue come from for reconstruction? What other body parts would be impacted? When would the ovaries be taken out? How many lymph nodes did I want them to take? There was a lot to consider and not a lot of time to make those decisions. I felt pressured and confused. After some deliberation, I asked for another surgeon. Being in Canada and having the amazing, free healthcare system that we have, I felt ungrateful and selfish requesting someone else, but it was the best decision I ever made. Finding the right person who understood me, who helped me understand the data, research, and the consequences of my decisions, made a terrible situation manageable. I am grateful for her every single day of my life.  

I recently saw an interview with SPANX creator, Sara Blakely where she was sharing marriage advice that her father had given her. He had told her, ‘marriage will be the biggest, easiest decision you ever make,’ and that really struck me. For each of these massive choices that I had to make, when I got quiet, focused on myself, and really accepted what I wanted in life, the decisions became pretty easy to make. When I used to think of the word advocating, I thought of standing up against something or someone bad. What I now know is that everyone is advocating for their beliefs, for what they understand, and what they know, all of the time. Each of my doctors was advocating for health, through the lens of their training and experience, and what I realized was that advocating for yourself is so important, because only you can. Only you can know what the right choices are for your life. No matter who else is weighing in, you are the one who lives with your choices, so what is really important is making sure that you know yourself and accept yourself so that you can confidently make the final call. 

Connect with Rachel:

@rayraymartin 

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