A difference of experiences
I had a wonderful and very candid conversation with my cousin the other day. After reading my blog she started comparing how different we are in terms of our motivations for reducing our risks. I have been extremely proactive and she has been, for lack of a better word, a little more complacent. In her own words, she said she felt like she was just trying to ignore the fact that she was also high-risk (and possibly a BRCA1 carrier) altogether as some sort of a defense mechanism.
She made several points about our motivations that I would like to share with you:
My mother: who needs more motivation than that?
As I have mentioned before, my mother was diagnosed with stage III ovarian cancer at 37 and succumbed to the disease in 1996 at age 39. There was a lot of discrepancy as to whether the cancer actually started in the ovaries, the peritoneal or, as many researchers I have talked to in the last couple of years have said, the fallopian tubes. My mothers first diagnosis was peritoneal, however, many women were misdiagnosed in the 1990’s with peritoneal when it was actually in the fallopian tubes and half the reports say peritoneal and the other half say ovarian. It is also important to note that only about 4% of BRCA+ women actually have peritoneal so we will just go with ovarian cancer starting in the fallopian tubes.
At that time of her diagnosis and throughout her treatment we had so many unanswered question. Why my mother? Why so young? She was so healthy. I was only 10 when she was diagnosed and while, even at that age I knew things were terribly wrong, my family including my mother, decided to pretend like she would be okay.
I remember being in dance class and having my father run in the classroom on multiple occasions, give me that “you’re mom is really sick” look, and we would rush to the hospital. There were too many of those close calls to count and when she did take her last breath, we were all there to hold her hand and tell her that we loved her.
I have seen death. I have looked it straight in the face. I have seen the woman who gave birth to me go through years of treatment and have her whole body deteriorate as a result. The gene that I carry could potentially do the same thing to me and put my husband and future children and grand children through the same thing.
If that isn’t motivation, I don’t know what else is.
My cousin did not experience the same thing that I did. She has heard horrific stories of her own mothers past with breast cancer and she saw brief glimpses of my mothers decline over time but it is not the same thing as looking at cancer straight in the face and living it…and as a result wanting to do everything in your power from the history repeating itself in future generations.
The fact of the matter here, on how our motivations drives us, scares me for so many reasons. I saw my mother take her last breath of air and I know exactly what cancer can do to a person and to their family. What I fear is, I will take care of myself and prevent myself from having cancer but god forbid I pass this gene along to my children, they won’t have the same motivations that I have because they didn’t go through it. They didn’t live it, just like my cousin.
This is why pre-genetic determination (PGD) is something that is so appealing to me for when I decide to have children. While some people do not believe in it because it is a form of genetic engineering, physicians do have the ability to do PGD, meaning that they would only implant non-BRCA+ eggs through in vitro fertilization (IVF). That way I would never have to worry about passing this gene to my children and whether or not they would chose to take the precautions that I am taking. I have the motivation because of my mother and if I prevent myself from ever reaching that point then there is no way to tell if my own children (and future generations) would have the same fire in their belly that allows them to take the right and necessary precautions. It is pretty amazing to me that I could potentially reduce all of the breast and ovarian cancer risk in my family to that of the normal population. We will have to wait and see what the future brings but there are so many possibilities.