the beneficiary of miracles

This is a story about being a Jew.

This is a story about loss.

This is a story about living in a time of miracles.


One in 40 Ashkenazi Jews has a mutation on either the BRCA1 or BRCA2 gene. These genes, when they work the way they should, help suppress tumor growth. A mutation in the gene increases the risk of certain cancers, especially breast and ovarian cancers. 

I am the one in 40. I have the BRCA2 mutation.

BRCA1 breast cancers are more difficult to treat and more likely to reoccur than other breast cancers. The lifetime risk of breast cancer for a woman with the BRCA1 mutation is as much as 65%, which compares to 12% for those without a BRCA mutation, according to cancer.gov. The same site says 45% of women with the BRCA2 mutation will develop breast cancer by age 70. 

I can’t quite wrap my head around these lifetime risk numbers. Is cancer.gov telling me I have roughly a 1 in 2 chance of developing breast cancer? The information sheet that I received with my DNA test results says this mutation may confer a risk as high as 84% by age 70. What the heck does “may confer” mean and why is the stated risk so much higher? 


I spoke this October with a genetic counselor about my risks and options as someone with the BRCA2 mutation. 

There are several reliable diagnostic tools to help detect breast cancer early. The standard of care for a woman my age and situation is to increase monitoring. The counselor suggested I add in a MRI once a year to image my breasts and check for cancer. MRIs do better at detecting cancer than mammograms when breasts are dense. As we get older, our breasts become less dense, and women at higher than average risk of breast cancer no longer need the MRI, just the mammograms. 


I’ve been getting my mammos grammed since I was in my late 20s. This is where I talk about loss.

When my older sister was in her late 20s, she found a breast cancer. Despite a mastectomy, the cancer recurred and then spread. She died ten days before her 31st birthday.

This is why I have been checking my breasts every year, and this is why I decided to test my DNA for the BRCA mutation. My father also died of cancer. My mother has had several cancers. Both my parents’ mothers died of cancer. Though I live a healthy lifestyle, I’ve kind of always thought it was simply a matter of time before my genetics caught up with me.

The other risk I discussed with the genetic counselor is the risk of ovarian cancer. In the general population, 1.4% will develop ovarian cancer. For those of us with BRCA2 mutation, that risk is 11 - 17%. The information sheet I received with my genetic test results put my lifetime risk of ovarian cancer as high as 27%.

It seems as if there’s a far greater chance of not developing this cancer than there is a chance of developing it. That’s also an optimistic way to view my situation, and if there were reliable ways to detect ovarian cancer, I’d do with my ovaries what I’m doing with my breasts: I’d let them be and check up on them real often.

 

I’d been pretty optimistic that I wouldn’t have the BRCA gene mutation. I swished, spit, and sent it off and forgot about it. I wasn’t a tiny bit worried. My optimism, pessimism, or realism, it turns out, do not affect my reality.  My risk of having the mutation was 1 in 40. It doesn’t matter that there were more chances I wouldn’t have the mutation than chances that I would. This is where probability meets reality. There is a 100% chance I have the mutation because, well, I have it. So I can play the numbers and say that I’m more likely not to develop this cancer than I am likely to develop it. But I’m not much of a gambler.

The problem with ovarian cancer is that it’s a nasty, foul, deceitful SOB of a cancer. Unlike with breast cancer, there are not any reliable diagnostic tools, which means it’s most often found when it’s stage IV and already has spread to other organs. It’s difficult to treat. It’s deadly. 

Ovarian cancer, as far as researchers know, is not affected by lifestyle or at least not much. Eating right and exercising regularly will ward off many diseases — including the ones, such as diabetes or even breast cancer, for which I may have a genetic predisposition based on family history. But my healthy living won’t make a difference in whether or not I develop ovarian cancer.

To speak with the genetic counselor, my husband and I had to go to the UNM Cancer Center. Driving to a cancer center is sobering. Once there, I had to check in and receive an orange hospital band, as if I were a patient. In the waiting area, we saw a woman younger than I am, and we wondered why she was there. I wondered if others saw me and wondered why I was there.

The genetic counselor was both clear and emphatic: the best way to deal with the risk of ovarian cancer is to remove the ovaries and fallopian tubes (the tubes in some cases might be the origin of the cancer).

I asked if I should wait to have the surgery until I was in menopause. I said maybe it would be better this February or March. She looked straight at me and said: don’t wait. 

It took me 24 hours to choose to have the surgery, a prophylactic bilateral salpingo oophorectomy. I think my decision in part was made by how sure she was, this counselor who’s seen so much ovarian cancer and the women it has affected. My decision came from my gut, from my fear. My decision came from love, my love for my family.


On December 22, I’ll return to the cancer center to undergo the 45 minute outpatient surgery. This is where I talk about miracles.

It’s a miracle that scientists can now read our genes, tell us where we came from, and point out the problems we might encounter - and our children and children’s children, too. 

It’s a miracle that doctors can insert a tiny camera through my belly button and into my abdomen, and this tiny camera allows my doctor to look around so she can then remove my organs through two other tiny incisions. It’s the miracle of life. 

I feel nothing but lucky. I am healthy, with support from friends and family, and a job that offers medical insurance. Knowing how much greater risk the BRCA1 mutation confers, I feel lucky to be BRCA2. 


I plan on getting a tiny bit whiny about surgery and about the weeks after surgery in which I’m not supposed to exercise aside from walking. Let’s not confuse my feeling scared and sorry for myself with feeling unlucky. I know how blessed I am. I know I’m the beneficiary of miracles.