Now Let Me Pray To Keep You From, The Perils That Will Surely Come
(Programming Note from Shannon: FINALLY getting a chance to post this. I’m sorry for the delay! The picture accompanying this article is absolutely inspiring. A friend of mine shared it with our previvor group on Facebook and I knew I needed it for BRCA World. Strength, perseverance, bravery…all that a mother should be).
(Goodness, I used to love Lauryn Hill’s “The Miseducation of Lauryn Hill.” It was my jam back in the day. “Zion” — the title of this article is a sampling of the lyrics — is one of the most beautiful songs about having a baby. For anyone in a “God, I am blessed to have this child” mood, check out the lyrics.)
As our knowledge of cancer grows, so does our vigilance. We are learning earlier and earlier about our risks. Those of us with long family histories of cancer, are aware from an early age of its potential to strike us. Many of us must make life-altering decisions in our twenties and thirties, when we are still learning to be adults. We are on the cusps of our careers; our families are young, if they have even formed yet; and we are just settling into our skin enough to catch glimpses of who we might become.
Breast surgery is usually the first decision made. For most, it is the easiest to agree to and protects from the most immediate threat. How to guard against ovarian cancer is a much more difficult choice. I know, for me, it is also the scariest. Although the risk of ovarian cancer, in carriers of the BRCA mutation, is lower than breast cancer, ovarian cancer is more difficult to detect. Dubbed, “the silent killer,” it is often not discovered until an advanced stage. It is one of the deadliest forms of cancer among women; and only 20% – 30% of women diagnosed with a late stage ovarian cancer, will be alive 5 years later. There are no good early detection tests. The blood test most commonly used, the CA125, is not very accurate. Many doctors (mine included) prefer not to use it at all, due to the unreliable results. The only true option to reduce our high risk, is a hysterectomy (removal of your uterus) or salpingo-oophorectomy (the removal of your fallopian tubes and ovaries).
For younger women, this means making decisions about your future family and children. It is recommended that these preventative surgeries be done by age 35 – 40 (two of my doctors recommended 35 y.o., but I know some women’s doctors have said 40, as well). With BRCA and HBOC, your baby clock starts ticking faster the moment you become aware of these decisions. Many women feel rushed. They need to not only figure out what they want their future family to look like, but plan when and how they want that family to come to fruition.
There are many considerations for those at high-risk of ovarian cancer. Eggs can be frozen. Children can be adopted. There is even embryo testing that can be done to determine whether you would pass on the BRCA mutation to your child. This is most often done during IVF, when doctors can develop embryos and implant only those that do not have the mutation.
This brings up a sensitive topic in our community. Do you have a moral obligation to avoid passing along the BRCA mutation? I don’t have an answer to this. I look at my son…his wide-eyed pleasure in the world. He was a preemie that could not breathe without assistance; he fought through seizures and a hole in his heart. Yet, he smiled constantly…from the very first day. With tubes in his nose, belly button, and mouth, he smiled. I can’t imagine him not being in this world, and I can’t imagine him having cancer. Does he carry my mutation? I have no idea. Would it have changed my decision to carry him? No. Perhaps that is selfish, but my choice to have him would be unchanged. By the time he is old enough to test, he will know about his risk. I will make sure of it. I am hopeful, though, that there will be a cure. That is why I preach so loudly about it. I need a cure for him, not myself.
Aside from all the choices we face, we must also recognize the risk. Breast and ovarian cancer are, sometimes, estrogen responsive. The influx of hormones during pregnancy can increase the risk of cancer in BRCA mutations (click here, here, and here for studies supporting this statement.) Furthermore, if you have had a cancer diagnosis, you are encouraged to wait, at least, 2 -3 years before becoming pregnant, as it can increase the risk of recurrence.
Having a BRCA mutation, or a strong family history of cancer, means you are faced with a million impossible decisions. Early in my life, I did not know if I wanted children of my own. I enjoyed living selfishly, with nothing to constrain me. I adored other people’s children, and had decided to be the super-cool aunt that was really involved in the lives of my nieces and nephews. As I grew older, my dreams changed, as they so often do. How are we supposed to make all these decisions so young? Our lives change; our desires change; but we are forced to decide the shape of our future. It’s unfair and impossible. It is the high cost of cancer.
Personally, I dream of having another baby. There are so many risks and decisions involved, my husband is not sure he wants to follow that road. I can close my eyes and imagine a time when these decisions are unnecessary. There will be a cure, casting all of our doubts and heartaches aside. This is why we fight. This is why we advocate and educate.