When it comes to medical choices it’s impossible to know how we’ll react until we’re face to face with a diagnosis. I learned this first hand when my father was sick. When an infection found its way into a stent the doctor said (surgeons can be so eloquent) “it’s his life or his leg.” To complicate matters further, we had to make this decision for him. He was unconscious. We choose life (life!) but felt there was a good chance that when my handsome, somewhat vain dad woke up he’d feel differently. When he came to and was informed of his amputation he looked at the surgeon and instantly said “thank you doctor for saving my life.”
Last week, Angelina Jolie shared with the world, via The New York Times, that she had made her own harrowing medical decision. Having lost her mother to ovarian cancer and testing positive for a mutated BRCA1 gene she underwent a preventive double mastectomy. She was heralded a hero by many people; however, I received an email from someone who saw things differently. This someone, my friend Erin, has faced her own bleak medical news. I'm so grateful she was open to this Q/A.
Are you comfortable sharing a bit about you, your story?
Sure, last spring I noticed a lump in my breast. I mentioned it to my doctor at my ob-gyn visit. She brushed it off because of my age and lack of family history saying it was likely a cyst. I was told to let her know if it got bigger. Waiting was my one mistake. In August I called her back to say I had no idea if it was growing but it was still there and I wanted an ultrasound. I should have demanded an ultrasound to begin with to confirm or reject her assumption of a cyst.
I went for an ultrasound and what I thought would be peace of mind. I waited. I was told I needed a mammogram. I waited. I was told I needed a needle biopsy because the mass was “suspicious”. I was scared but more annoyed that they would do all three tests to confirm it was a cyst. The doctor told me that he would call with the results in 2 days. On August 14, 2012, at the age of 29, I was diagnosed with breast cancer. I couldn’t breathe. My boyfriend, at the time, raced home and my parents and sisters came over. I cried and cried for a day or two and then began to focus on finding the best doctors and putting a plan together.
Were you presented with a choice to have surgery or was it strongly recommended?
I was told to have a unilateral as things had spread to my lymph nodes and it was strongly recommended that I have a bilateral. When I asked my surgeon “If your daughter was sitting in my chair, what would you suggest?” She said bilateral. I felt like I was strong enough to go through this only once (anyone is – you go into survival mode). Even though tests showed that I do not have any genetic mutations I had a bilateral mastectomy in mid September, 8 chemo treatments from October to January, reconstructive surgery in February and 25 radiation treatments starting in March. I finished April 16!
You reached out with objections to Angelina's Op Ed Piece, can you share your thoughts? Were there any things you agreed with or related to?
I struggled with her references to “Pink Lotus Breast Center” it made it feel like a PR blitz versus a personal message. And the statement “I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery.” I’m all for a paraben-free life but the insinuation that you can always skirt genetics (or breast cancer) with “alternatives” is irresponsible because of her influence. Maybe Suzanne Sommers wrote the article for her.
What I wished that she included is that cancer can happen to ANYONE even if you don’t have the faulty gene (most women with breast cancer do not). While it’s important to know your history/risk, it’s absolutely critical to know your body. Women usually start mammograms at 40. Cancer can happen before 40, regardless of family history or genetics. I am proof.
There were other things I related to. I loved “On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.” She is the epitome of femininity and so for her to be so confident, after surgery, means a lot to women like me.
Is the recovery as easy peasy as she mentioned? She also didn't have treatment so many women do/did. It wasn’t easy; you can’t use your arms for 6 weeks (think about getting up in the morning without using your arms to help). But the emotional issues that come along with the surgery were equally difficult. Things moved so quickly – diagnosis to surgery was less than a month.
What good do you think can come out of this conversation? I know it's not the same but I believe we need to talk about our bodies when they are healthy or not. Whether it's heart disease, constipation/colonoscopies/hormones or surgery, do you agree? The conversation is so important because it removes the stigma for women (and men!). Most things, when caught early, are treatable.
I know you've made some lifestyle and nutrition changes. What, from your experience, do women need to know?I became obsessive over what I was putting in and on my body (it was the one piece of control I had).
- I switched over all of my cosmetics, shampoo, body wash, deodorant to paraben-free, SLS-free all thanks to guidance from you and trial and error.
- I eat organic in my house and look for restaurants with organic options.
- I don’t eat anything burnt because of the carcinogens.
- I limit my soy intake to edamame once in a blue moon.
- I juice – during my treatments we had juicing parties with friends. We’d get a ton of fruits and veggies and vote on whose combo was best. I will never forget those nights because they were filled with laughter and I was completely distracted.
I don’t sweat the small stuff. I thought I didn’t before but now I really don’t. When I was first diagnosed, I looked completely normal but was going through the worst days of my life. You really have no idea what people are going through.
I knew Erin was beautiful, kind and smart before any of this. She was the person who traveled hours to watch my boys, so that I could attend my sister’s best friend’s funeral (she had colon cancer). I never knew she was so strong; she says anyone would be but that’s not true. I put on my game face when I saw Erin but wept in the middle of Yellowstone Park when her sister first emailed me the news. I am so grateful that both Erin and Angelina's choices and strength will keep them alive and healthy. We must get the medical information but also know our own bodies and in the meantime make all those lifestyle changes before getting diagnosed.
Personally, I found the Brad Pitt inclusion the oddest part of Angelina's article. But that “then boyfriend” Erin mentioned? He’s her “now” fiancé. Let’s see if she beats Angelina to the altar.
What did you think of Angelina's announcement and decision? Had you thought about the BRCA 1 or 2 genes before? Is there any doctor's appointment or lifestyle changes can you make today? Or where can you sweat the small stuff less?