What I Wish I Knew: Don’t be afraid, speak up

Hey, you! Yes, I’m talking to you, the person behind the screen who is just like me. How do I know you’re like me? At one point or another you felt scared, confused, and alone in your situation. You were diagnosed with cancer, or something else. You felt pushed aside and made to feel stupid, or like you got less-than-good care.

In 2013 I had my annual mammogram. I was 41 years old and had been having mammograms since I was about 37, because my paternal grandmother died of breast cancer. My gynecologist, who is Ashekanzi Jewish like me, had me start mammograms at a younger age because of the risk. [Editor’s Note: People of Ashkenazi Jewish ancestry are more likely than are people of other backgrounds to carry BRCA gene mutations that raise the risk of developing breast cancer.]

At that 2013 mammogram, they found calcifications. I was told I needed a biopsy.

On February 13th, a biopsy was performed. FINALLY, on February 18th, I called the radiologist and asked him if he had the results. He asked me if had someone there with me, and I said, “Yes, my husband is here with me.” I knew right then it was breast cancer. The radiologist said, “You are not going to die from this breast cancer.”  That was a relief to hear, but I wasn’t exactly convinced.

I had a lumpectomy. But this first breast surgeon never sent me for a breast MRI. You are reading this right, no MRI. He also told me I didn’t need genetic testing, insisting I didn’t meet the requirements or have a strong enough family history to warrant testing. I’m 100 percent, full-blooded Ashkenazi Jewish. My grandmother died of breast cancer. I went to him with breast cancer, and he didn’t think I met the requirements for genetic testing?!

Thank G-D for my gynecologist, who insisted I test. I went against the surgeon’s advice and had genetic testing. The genetic counselor, and the medical team on staff, were absolutely mortified that this breast surgeon never sent me for an MRI.

The genetic test results showed I have a BRCA2 mutation. I initially had the lumpectomy because I didn’t know I was BRCA2. I went for not only a second opinion, but also a third, to find out whether I should have chemo and a mastectomy. The breast surgeon who did the lumpectomy had insisted that I NOT have a mastectomy. He told me that “women’s breasts are really special,” and that I shouldn’t have a mastectomy unless I got cancer again – Oh, ok! So I should wait for cancer No.2! Fantastic idea!

Thank G-D I never followed that surgeon’s advice or went back to him after the lumpectomy. I found myself a new team at Memorial Sloan Kettering, where. I had a mastectomy with expanders put in. The expanders were horrible, and I had them in for 6 months. I had two revisions, as well, because I had some issues with my right foob, and had both ovaries removed in an oophorectomy, to help with my cancer risk. Overall, I’m pretty happy with the girls. My plastic surgeon did a great job on my reconstruction.

One thing that I learned from this entire messy experience: advocate for yourself. Don’t be afraid to speak up. Tell your doctor what you want. If he or she doesn’t listen to you, go and get yourself a new team who will. If you want to be flat, be flat. If you want reconstruction, get reconstruction. It’s your body, your choice. Make sure it’s your decision and no one else's.

Irina Brook is a patient advocate on a mission to support people with BRCA mutations and educate the public on the power of genetic testing to inform their healthcare decisions.