Wednesday, May 15, 2013

Angelina Jolie and Me: A Preemptive Strike at Breast Cancer

When Angelina Jolie recently disclosed that she had had a prophylactic bilateral mastectomy, my first thought was, “good for her”. She, like me, watched her mother die of BRCA-1 breast cancer when she was in her 50’s. Jolie and her mother and my daughter and I also share membership in the BRCA-1 breast cancer club. Contrary to common thought, all breast cancers are not of the same magnitude. While many women have been diagnosed with breast cancer and gone on to live fruitful lives, for those of us with the faulty BRCA-1 gene it’s not quite that simple. We have a strong propensity for breast cancer (up to 87%) and ovarian cancer (50%). It’s also fast growing and aggressive. To make matters worse, triple negative (for hormone receptivity) BRCA-1 takes many common and highly successful treatment options – such as Tamoxifin –off the table. That happens to be the case with my daughter and me.

Our own family history presents a disconcerting outlook. As far back as we know, every woman on my maternal side has carried the BRCA-1 gene and paid with her life at a young age. My great-grandmother died in her 40’s and my grandmother was 42 when she died, two weeks after diagnosis. My mother died at 58 – after a 5 year long struggle with ovarian, then breast, then liver, bone and finally brain cancer – all due to the BRCA-1 gene. My diagnosis came 7 years ago – when I was 48, while our daughter was diagnosed when she was 28 and 20 weeks pregnant.

This unbroken line of victims, and the deaths of women preceding us, gives us a unique perspective. We can’t say, “what if I become a victim of breast cancer?”. Unfortunately, we’ve been there, lived that. Our loved ones died young and we, ourselves, have traveled a difficult path. When our daughter found out about her cancer, she had to go to great lengths to find a doctor who was willing for her to maintain her pregnancy and still treat her. The answer came when she found the doctors at MD Anderson Cancer Center in Houston, TX. They had been successfully treating cancer in pregnant women for 20 years – with no harmful side effects to any of the babies.

With MD Anderson's protocol and local doctors’ cooperation, she gave birth to a healthy baby girl on Thanksgiving Day of 2009 – after having undergone chemo while pregnant. In an effort to help other women – our daughter has extensively shared her story. She has also won the Life Award for her persistence at maintaining her pregnancy. Likewise, Jolie has come forward and I find it laudable that a public personality is willing to be so transparent about something so personal – all in an effort to help other women.  Among cancer patients this sense of purpose appears to be very strong. Perhaps the drive to help others, by relaying our own experiences, gives back a little of the power that cancer steals from us.

Unfortunately, some rumblings and judgmental comments have been aimed at Jolie (and me) for taking what must seem like an unreasonably drastic step. Contrary to this rash judgment, what she has done is a great service to others who may find themselves equally challenged some day. When the prognosis is so dire and the options are so few, it must be understood that it is morally acceptable to take preemptive steps to preserve health – especially for a mother of young children. That some find it repugnant that she willingly sacrificed her breasts in an effort to save her life, is disappointing to me. After all, her breasts are not a vital organ. Removing them has not affected her fertility. So if she takes this step in an effort to live, it would be charitable to respect that decision.

Likewise, my daughter and I both chose bilateral mastectomy instead of only removing the tumorous breast. In fact, our story presented an even more difficult decision. At the insistent recommendation of my mother’s team of oncological specialists, I had a prophylactic oopharectomy when I was 31. Although this step ended any hope of the large family we had hoped for, the risk from cancer was simply too great to ignore. After all, I was a wife and the mother of three young children who needed me healthy and alive. When our daughter was diagnosed at such a young age, while pregnant, the wisdom of my decision was revealed. Again, at the persistent advice of her oncologists, she too, underwent a prophylactic oopharectomy.

As a result of stories like the ones told by Jolie, my daughter and me there have been blunt statements that no one should take such a drastic step – that it’s a sinful choice. We should trust in God, not medicine. If that were the only reasonable conclusion, why would we subject ourselves to chemotherapy? After all, this acceptable treatment/preventative measure kills cells in our bodies and causes long-lasting or permanent side effects. Yet, in the quest for preserving life, chemo is universally accepted as ethical. So why not remove breasts or ovaries that will almost certainly become cancerous and kill us? After all, double effect comes into play – the goal is not to end fertility. The single goal is to make a difficult, albeit necessary, decision for survival. Loss of fertility is the unintended consequence of that decision. According to the good and holy priests I have consulted and moral, pro-life experts this preventive measure is a licit course of action.

The struggle with cancer is a lifetime challenge. Even with years of good reports, the reality is that it can always recur. With the BRCA-1 gene, there remains 40% chance that even chemotherapy will not be an effective deterrent to mortality. You’re never in the ‘safe’ zone. But contrary to other comments, I don't fear death, I made my peace with this world as a part of the acceptance process when I was first diagnosed  Yet I also know that, if it is the Will of God, I will do whatever is in my power to remain here on this earth with my loved ones.

Two survivors!
So if you've never walked this road, please be kind by refraining from belittling the decisions of those of us who have. A more charitable approach would be to say a little prayer. Thank the Lord that you haven’t been forced to walk this difficult path. And ask Him to keep us healthy for as long as He wills it. Pray that our efforts to help others by sharing the painful reality in our lives does a service for them. We, in turn, will do our best to live our lives honoring Him. I, for one, know there is a purpose to my life - I have a God-given mission to share the pro-life message and the Gospel with as many people as possible. It is my firm belief that giving up on life is not an acceptable option when God has given us such unimaginable advances in the field of ethical medicine. Although the rest of my life will be lived with a unique awareness not shared by those who have not traveled this road; I have found a peace that can only come with a close relationship to God and a focus on His Will for the rest of my earthly life.

NOTE: there has been much confusion and misinformation about this life or death issue since I wrote this post. Therefore, I found it necessary to offer more resources for an accurate picture to emerge. Find the update here.