Monday, May 20, 2013

Not Everyone Supported Angelina's Message, Important Points From Someone Who Knows

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?


  1. Great post. I think the difference here is that Angelina has it deep in her history and blood.....with her mom having had both cancers and she herself carrying the gene, I think I would have done the same thing. In Erin's case, however, I'm not sure I would have. Like you said, you do what's best for you, either way, and that's the most "heroic" way to deal. I'm happy for Erin :) Great ending!

  2. The vast majority of women diagnosed are more like Erin than Angelina, these gene mutations are rare. For me, I feel Erin's decision (not that we have to choose) was almost more clear as she had this in her already. She had cancer. Heroic to me is choosing life, facing the fear/treatments/procedures head on and doing whatever it takes.

  3. Thank you so much, Erin, for sharing your story. I think your statement to "know our own bodies" is the most important, as each of us is so different, it's hard to predicts how our health will change over time.

    A big difference is when you know you have a genetic mutation, and for that I'm glad Angelina shared her story as well (even if some of the inclusions were odd). In my experience, many women are aware there may be some genetic links to cancer, but not nearly as many know about specific mutations in the BRCA genes that may lead to increased risk, or that it can be tested during a routine GYN visit. Just having awareness can lead to empowerment and more informed decisions.

    Thanks so much for sharing! :)

  4. And thank you Jessie. I too thought Erin's reminder to know your body struck such a chord. Awareness is good and whether to get tested for a mutation or requesting an ultrasound, we need to speak up and request what we need.

  5. Thank you Jen. I think "questioning the expert" is a great takeaway. And I love your mention of those insecurities we all feel. As an "expert" in some ways, I love when client's share conclusions I have no way of knowing "every time I eat this I feel _________" I know there's a difference between a food issue and a tumor but it all has to be collaborative. Angelina's announcement is great but I think the reminder that not all breast cancer is the same, that not all procedures are affordable, that some surgery isn't preventive but mandatory enrich our knowledge and views.

  6. what an amazing article -- i think it is so important that we need to reconsideration the ideologies behind holisitic health care as an alternative treatment in our current society -- holisitic health care is not always an option and at times can cause more harm than help. Erin's story is truly admirable. She displays such humble courage. Although I was touched by Angelina's public announcement it is women like Erin that genuinely inspire me -- Women who do not let an illness or a treatment or a surgery define them; yet, are able to become honest, open advocates.

  7. Thanks Jen. I love the term integrative medicine. Preventive measure are very important and there's a whole field of nutrition called nutrigenomics where what we do can activate or stifle certain genes. We can at times change the course of our health but not always. When we know of a medical intervention that can drastically improve our health or chance of survival, we need to jump on it. It's not one of the other, as Erin said nutrition isn't an "alternative" to surgery. Love "humble courage" because that's Erin and I'm so happy that came through. As someone mentioned, given what she does Angelina's disclosure was admirable but she isn't one of us. Erin is your friend or sister or coworker and for that reason I'm glad you and others could relate to her.

  8. Everyone's story is a bit different - sharing mine in the event anyone can benefit. My mom had breast cancer, but always thought it was due to polluted water when she lived near an industrial town for a few years (no family history). I had"forgotten" that my paternal aunt had died of ovarian cancer at 56 years old. I had a routine mammo (actually had been delinquent) and they found a tiny shadow, which they would have ignored but for the fact that it wasn't there in prior ones. They did a biopsy and found a spot of cancerous cells the size of a sesame seed. The doctors thought it was miraculous to have found it because it is the type of breast cancer that doesn't form a lump and it was so small that they lost it when they went the next step to do a hormone receptor test. My ob-gyn suggested I do the BRCA tests, so I did, but with no expectation that there would be an issue. So, surprise when it came back positive for BRCA 2. I did not give it two seconds thought and scheduled both double mastectomy and ovaries out immediately. I wanted to be able to tell my kids after surgery that the chances were really really high that "there was nothing to worry about after I did this". I still feel like the luckiest person in the world

  9. Thanks Jolie, I think though different again we see a test performed despite the MD expectation that they would find anything. And again, another brave decision on your part. I like your mention that you forgot your aunts history and that mammo was delinquent, all these things so many of us can relate to. My hope is this conversation leads women to think about their relatives/family history, making their doctor's appts for mammos/check ups/colonoscopies etc and making the decision they feel is right for them.

  10. I am truly inspired by Erin’s courage and strength. I have watched her during her journey overcome
    obstacles & face difficult decisions all done with such optimism and determination. She has taught me many
    life lessons and I am grateful to call Erin my friend. Thank you for sharing your story.

  11. Liz- you have a great friend in Erin. A part of me still wishes she didn't have to teach us lessons (after all she was phenomenal before cancer and treatment) but her grace and as you said determination can (and I hope with this post does) teach all of us. Thanks for reading/stopping by.

  12. Kudos to both Erin and Angelina for sharing their stories, and for you to bringing up this topic. I think the most important takeaway is to "listen to your gut" if you think something is not right. My mom (strongest and most resilient woman I know!) has gone through breast cancer twice, uterine cancer, & a (fortunately benign) brain tumor & is still going strong. Fortunately, all were caught early, because she knew "something wasn't right". I never once heard her complain about any of these diagnoses-she just moved forward with her treatments and carried on with her life, like there was no other alternative!