April’s Story – Be Your Own Advocate

A photo of me from July 2007, just before my diagnosis.

I never heard the phrase ‘Be Your Own Advocate’ until I was sitting in an oncologist’s office lamenting the fact that I had almost walked away from a life-saving breast surgery.

On March 31st 2007, I was in the shower, getting ready to go out to celebrate my best friend’s birthday, when I found a lump in my breast. I would like to be able to tell you that I was doing my monthly self breast exam, but I wasn’t. I was 27 years old and had never done one before. I found the lump completely by accident. It made me a little nervous, but I put it in the same category as heart burn, and certainly didn’t take it seriously.

About a week later, I mentioned it to my mom in passing, and she suggested I get it checked out. My mom is the last person to ever tell anyone to see a doctor, so I took the advice to heart and booked an appt with my PCP. My doctor felt my lump and told me it was most likely nothing – a benign fibroadenoma, common in women my age. I left the office feeling relieved.

I got a letter in the mail a couple of weeks later containing an appt for a breast ultrasound. This surprised me as it wasn’t mentioned at my appt with my PCP. So, I put it on my calendar and felt a little less relieved. When I had the ultrasound, the technicians were rude to me. They couldn’t find my lump, and it was obvious that they thought I was a hypochondriac. They continuously told me to lay still while I tried to point out the lump to them. One of them was rolling her eyes and sighing a lot and I left the ultrasound feeling like an idiot. Why did a 27-year old with no family history of breast cancer need a breast ultrasound? I was mad that I had even gone to the appt.

A few weeks after that, having forgotten about the unpleasant ultrasound, I got another letter in the mail containing an appt with a breast surgeon. Again I thought this was strange, so I called the office. They said that although my ultrasound looked normal, it was standard procedure to meet with a surgeon. So, I decided to keep the appt. By the time I saw the surgeon it was mid-May. She told me that the lump was likely a benign fibroadenoma and that we had 3 options. The first option would be to do nothing and I could come back in a year to see if there were changes. The second option would be to have a needle biopsy. The third option would be to remove the lump. It was up to me.

I thought long and hard about this. I didn’t feel comfortable having this hanging over my head and didn’t want to go back each year to check the lump. The thought of a needle biopsy freaked me out as well. Surgery looked like the best option, especially since this surgeon told me she would also be willing to remove a small piece of extra breast tissue that I had always had right under my armpit. I thought of it as a 2 for 1 special and so I decided on surgery. Since it was May, and surgery would prevent me from lying in the sun at the beach all summer, I scheduled the surgery for Sept. 6.

The surgery went fine and afterward the surgeon told me she would call with the results of the biopsy in a week or so. I barely thought of it again until the phone rang at 3:15 pm on Friday Sept 14, 2007. It was my surgeon and I will never forget her words. ‘The lump that we removed from your breast was cancer.’

That day obviously changed my life. From there I changed doctors and went to Mass General Hospital for additional surgeries, chemo and radiation. I received excellent care there. It was in my radiation oncologist’s office about a month after my diagnosis that I was asking him if he too would have given me the option of doing nothing about my cancer that I was given before. He told me certainly not, but also that I had to be my own advocate with my doctors and that this would be a very important part of my care from here on out. It was great advice.

From this experience I have learned to always trust my instincts. I have learned to demand the very best in my health care. I learned that I can’t leave my care completely in my doctors’ hands and that I need to be involved in the decisions about my treatment. If I don’t understand something my doctor says, I always ask. It was a long journey, but I am definitely now my own advocate.

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