This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Fear, Bravery and HBOC

July 7, 2013

Screen Shot 2014-01-05 at 8.30.20 PMRecently the topics of BRCA and bravery have been in the news. Previvor Angelina Jolie made headlines when she announced that she carries a BRCA1 mutation and underwent prophylactic bilateral mastectomies. Singer Melissa Etheridge, a BRCA2 mutation carrier and a breast cancer survivor, labeled Jolie’s choice of BPM as “fearful” rather than “brave.” Personally, I don’t think that bravery and fear are mutually exclusive.

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Fear is a powerful motivator. It is an adaptive and natural reaction to threats to our lives and well-being that can lead us to make choices that improve our survival or quality-of-life. Fear of cancer may not be the only fear on which we base decisions. Fear comes in many varieties: fear of chemotherapy or radiation, fear of life-altering or image-altering surgeries, fear of leaving our children parentless, fear of passing on a mutation, fear of medical debt, fear of a recurrence, etc.  Each of these fears are valid and may impact our personal health care decisions. Fear does not make our actions any less brave and it doesn’t mean these decisions are rash or uninformed. Fear can be balanced with information, empowerment, action, and even competing fears.

Bravery evokes images of heroic people sacrificing their lives for others, but there are other examples of bravery. Like so many women in our community, Angelina Jolie cites concern for her children as a reason for being proactive with her medical care. Putting the needs of others above our own requires courage. Several members have expressed that they didn’t feel particularly brave in facing their cancer risk. Although I can relate to their feelings, I would argue that the HBOC community includes some of the bravest role models I have ever met.

Most of my life I have never felt that brave, and bravery was never a description that I ever used to define myself. I was bullied in school, and I didn’t stand up for myself. Instead I shrank from confrontation.

When I was first diagnosed with breast cancer, and later when it recurred at age 34, I was terrified. I thought the rest of my life would be short, and given my prognosis I was afraid my 2-year-old son would grow up without a mom, like I did. So I did what I felt was necessary to improve my chances of survival: I left my busy veterinary practice to move to Houston for treatment at MD Anderson, one of the top cancer centers. My husband called me brave as he dropped me off for my appointment for a second opinion. I may have appeared resolute, but inside I was trembling. He confessed later when he picked me up that he would have fainted from terror walking through the imposing doors of the cancer center.

While on sabbatical for treatment, many of my clients called or wrote to wish me well. They sent their prayers and good wishes, and many told me they thought I was brave. I didn’t feel I had earned any badges for valor. I was simply doing what my doctors recommended. From the time of my recurrence until I finished treatment, on any given day it was a struggle between getting up and facing the day or hiding under the covers paralyzed with fear. I didn’t feel brave, but hearing the word from others was like a shot of courage, a mantra that sustained me.

As members of the HBOC community, we face many difficult challenges and decisions. Courage comes in many forms. Whether it’s proceeding with genetic counseling and testing, telling relatives about the mutation in the family, going to a high-risk clinic for an MRI, facing cancer treatment, entering a clinical trial for an investigational drug, waiting for test results, receiving that first chemotherapy, undergoing the last fill, or sharing with the world in a very public manner about personal medical choices in order to raise awareness; every circumstance we face requires grit and determination. Even the recommendations for which we feel we have no reasonable alternative still require us to move forward, schedule the appointment, and show up. Why shouldn’t we accept the positive labels? We might not feel we have earned them, but maybe we can gain strength from them.

Life is hard enough. And for people with inherited cancer risk, it is even more so. It is already difficult to face the criticism and lack of understanding from uninformed people. It is even harder when criticism comes from public figures and receives wide media attention. Uniting our community through FORCE demonstrates how much lighter our burden can be when we share and support one another.

We shouldn’t be ashamed of our feelings. Bravery is not the absence of fear. Acknowledging our fears and adding them into the medical equation is a reasonable approach to decision making. You don’t have to feel brave to be brave. Sometimes courage means just putting one foot in front of the other to meet your destiny. Your example of fortitude may be the inspiration others need to continue their own journey in a positive direction.

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  1. Ann Little says:

    This expresses what so many in our community feel. Thank you for expressing it so eloquently.

  2. Sharon says:

    I too was jubilant about Angelina’s decision to share her BrCa story. I am also BrCa 1+. It brought the issue into the limelight. It still surprises me, 4 years after my surgery, how many people in the medical profession have not heard of the genetic cancers.

    Fear and Bravery. I also have thought a lot about this. When I had my PBM my friends called me “brave.” I did not feel brave. I made the decision because I was fearful of cancer.

    “Brave” people, such as firemen, policemen, life guards and all the rest of us, do not necessarily do anything to be brave. A fireman runs into a fire because that is what he needs to do.

    I have recently begun to understand that being brave does not mean “courage.” It means doing what needs to be done. The word “brave” is a judgement made after the decision.

    I do not want to undermine the bravery of our men and women in service. I do want to point out that we are all brave, when we are doing what needs to be done.

  3. crunchster says:

    As you state so eloquently, fear can be a motivator or it can result in paralysis and denial. I believe that bravery comes from the ability to make choices and act even under fearful circumstances. Often the difference between an act of bravery and an act of foolhardiness lies in an understanding of possible outcomes and consequences. That is why proper information is so very crucial. Those who characterize the choices we make as rash rarely have taken the time to educate themselves about the likelihood of those fearful possibilities.

    • Alyse Katz says:

      I could not have said this better myself!!! My daughter is facing all these decisions, having tested for BRCA 1.. She has even taken a further step, Having her embryos tested for the BRCA gene, It is a personal and difficult as well as controversial decision.. I am sure many would argue against her decision, but I am so proud of her, She has decided to try and end BRCA in our family now and avoid the terror of knowing as I do that I passed this mutation on to my child..
      I thought I would share this, so young women are aware this is being done.

      • What powerful knowledge we have and through [in the case of BRCA] the very good aspect of science that we can make powerful decisions about the quality of our lives. Your daughter is so very fortunate to have the choice.

  4. Linee says:

    That was so perfectly said. Thank you for saying it so eloquently.

  5. ellynd says:

    Beautiful blog post.

  6. Anyone who thinks that bravery happens in the absence of fear is crazy. In order to be brave, one must make a decision despite feeling fear, and feeling it deeply. Everyone who has ever been labelled “brave” by the outside is quaking and terrified inside.

    “Brave” is the word used by those who have not faced down the dragon to describe those who have … but what do those who haven’t faced it down know of the dragon? I cannot fathom Etheridge even thinking she had any business commenting on someone else’s to me quite rational decision, particular since she knows well what Jolie opted to avoid.

    To me — NOT a cancer survivor but with two such people in my family — Jolie would either get it done now or get it done alongside chemo and radiation, and after years of barfing in terror after every damn mammogram. Bravery, fearfulness, whatever — to me, it’s common sense, like getting your leaky roof patched now before it collapses in the middle of your bedroom.

  7. Hardye Moel says:

    Beautifully stated. Thank you.

  8. Anonymous says:

    You have spoken so well. Thank you.

  9. Anonymous says:

    Thank you for putting into words how I feel. I am thankful to be a previvor. Betty

  10. vivianprieto says:

    Reblogged this on Vivian Prieto and commented:
    I have inherited cancer risk on both sides. Particularly from my mom who had breast cancer at a young age. Great article.

  11. segmation says:

    Thanks for sharing this beautiful blog!

  12. mixeralex says:

    Reblogged this on 32,768 Hz and commented:
    My Girlfriend has BC

  13. vnp1210 says:

    This is a wonderful post. As a young physician, I saw Jolie’s decision to be very brave and was disappointed by all of the criticism she received for it from the general public. Most of what the public knows about breast cancer is connected to a pink ribbon and walks to raise money for research. While these accomplish a great deal, there is so much that is unknown about the threat of hereditary breast and ovarian cancer. Jolie’s role in spreading awareness about it is actually a blessing in disguise. I wrote about this as well, here:

    Thank you for sharing your story. As you said, bravery comes in many forms, for many different hopes and stemming from different fears. Bravery is doing something difficult so that it may benefit others. Your post is honest and I feel many women will find comfort in it.

  14. What a wonderful testament.I have been blessed in many ways…one is the fact there is almost no cancer in my family. However, I have been directly affected by it with other loved ones who have lost their battles as well as a very dear friend going through it right now. Fortunately her prognosis is very good even with the single Mastectomy she is currently healing from.
    I find such encouragement from stories like this and I plan to share this with her.
    I pray there is a cure found soon and less women AND men have to endure this horrible disease….Thank you for sharing! 🙂

  15. ebandorg says:

    You are right. Bravery is not the absence of fear.

  16. This is beautifully written and so, so true. Bravery and fear are not mutually exclusive. Thank you for sharing.

  17. […] treatment initiatives that support long-term health for women with the BRCA mutation, and offers thoughtful analyses of media coverage of BRCA issues and […]

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