| A Jewish Girl's Guide to Genetic Testing (Part One) | |
| What’s so great about knowing you’ll get cancer? | |
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by Neille Ilel, February 8, 2007
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[This is the first in a four-part series published on Fridays.]
Later this month, my mother is going to have her breasts removed—not because she has cancer, but because she’s quite sure she’ll get it. It’s not the first time she’s had body parts removed. In fact, I’d had my mother pegged as straight-up insane since I was 12, when she underwent a total hysterectomy at age 35. It took me years to realize she’s not crazy. Or at least not that crazy. Finally, last year, we made The Deal: I told her I would get tested for the breast cancer gene if she would go into therapy.
When my mother first told me about the “cancer gene,” maybe five years ago, I didn’t believe her. I remember sitting on the phone with her in my Brooklyn kitchen, rolling my eyes, and probably smoking a cigarette. I’d been on the receiving end of too many articles about cancer prevention to take this to heart. But it turned out my mother wasn’t lying that day. And it also turned out that the feeling she had of being cursed, the feeling that made me think she was insane for so long, was right. Cancer is in her genes.
Breast Pirates: An ad in a Finnish women's magazineToday scientists have isolated mutations on several breast and ovarian cancer-causing genes, with more being discovered regularly. It’s now possible to get a test for the “breast cancer gene," or mutations in BRCA1 and BRCA2, named, creatively enough, after Breast Cancer 1 and 2. If a woman has this mutation, the probability she’ll develop ovarian or breast cancer skyrockets. The statistics vary, but if you have the gene you are far more likely to get cancer than to live a long life without it.
Part of me thinks it was better when we thought cancer was arbitrary. Sure, spending your life in a coal mine or smoking cigarettes was bound to make a person sick, but otherwise it was random and illogical—or at least unknowable. Like getting hit by a bus. But as genetics advances, it’s likely that we will soon know about lots of illnesses to which we’re predisposed. The medicine won’t necessarily keep up, though. And the thing with ovarian cancer is that by the time it’s detected—because ovaries are so small—it’s almost always too late. In any case, a predisposition is not a diagnosis. What’s so great about knowing? So that you can strategically plan when to have kids? And then plan which organs to remove when?
Scary Even With Good Lighting: A breast cancer cellWell before the human genome was decoded, my mother was convinced that it was only a matter of time before she got ovarian cancer and died. When she was 18, her mother, her grandmother and her aunt all died of ovarian cancer within three years. Ever since, she was absolutely sure that, like them, she would end up in a hospital, tubes coming out every which way, nauseated from chemotherapy.
I should have been more understanding, but I wasn’t. As a kid, I could only go on what I saw, and what I saw was a woman who spent a fair amount of time quite unhinged. Even before the surgery, my mother had a short fuse. She would routinely work herself into a rage over what seemed petty infractions: lost clothes, spilled drinks, a messy room. And “rage” is putting it lightly. She would get so angry, yell so much, that she’d nearly throw up and have to lie down. This was the paradox of my mother. Did she get so worked up that she made herself sick? Or was she sick to begin with and became angry because she couldn’t do anything about it? After the surgery, it only became worse. A couple of years ago, she managed to divert a plane full of people from New York to Las Vegas instead of Los Angeles when she had a panic attack during the flight.
I found her hypo-hypochondria both endlessly irritating and amusing. But it was only as I got older and began to pick apart my own childhood, that I started giving hers some attention. How could anyone watch three of the women they love most die of the same disease over the space of three years and not come out crazy?
Do You Really Want to Know?: "More likely than not, you're gonna get cancer"When she found out that the test was available, my mother jumped at the chance. If she tested positive, the numbers were terrifying. Women in the general population have a 13.2 percent chance of getting breast cancer. For a woman with the mutation, it’s between 36 and 85 percent. For ovarian cancer the odds jump from 1.7 percent to between 16 and 60 percent.
These statistics are also confusing. A 16 percent chance of developing ovarian cancer is entirely different from a 60 percent chance. “It depends on which study you’re looking at,” says Joyce Seldon, my mother’s genetic counselor, but she stressed that, 60 percent is more accurate. For developing breast cancer, the range—between 36 percent and 85 percent—is even more misleading, Seldon says—“More likely than not, you’re gonna get cancer.”
And in this case, getting cancer doesn’t mean becoming sick at 65. Women who have the mutation are afflicted at a much younger age. They’re the ones whose stories are so hard to believe: the woman diagnosed with ovarian cancer at 45 who dies six months later. The woman who has several rounds of chemo and a mastectomy after a breast cancer diagnosis at 41. The woman who doesn’t get to see her kids grow up.
My mom’s test results? Positive. She had a mutation on BRCA1. Even though I refused to take any of her cancer talk seriously, I knew this wasn’t good news. Still, I couldn’t help thinking that at least she didn’t remove her uterus for nothing. I didn’t really understand the magnitude of this news. Because she had the mutation, there was a 50 percent chance I had it, too. Did I really want to find out?
Next: What would you do if cancer killed off all of your female relatives?
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Want more information? Have more information you want to share with the Jewcy world? Come on over to Jewcy's genetic testing wiki to see a list of pertinent links, and add your own.
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Neille Ilel is a reporter, writer and user interface specialist in Los Angeles, California. She is currently deisgning and blogging at Yahoo! Her work has appeared in the Los Angeles Times, New York Press, Reason magazine, on public radio More... |
Anonymous
intermarriage
My moms side of the family is Swedish and my Dads is Russian Jew. There was never cancer in my Moms side of the family until my Mom got Breast cancer in 2001; soon after one of my uncles got stomach cancer...............since my family had no past history of cancer (moms or dads) and the cancers they now have are not related (and not from smoking or alcohol consumption which both have little or no history) I believe that pushing for intermarriage to cure the "possibility" of getting cancer 100% ridiculous! I can give you two good reasons for my belief' A. Jews already have a very mixed gene pool (Jews from Eastern Europe due to rape and some Intermarriage also have a significant portion of gentile in us{hence the lighter skin tone and eye color in many} and there are Jews from India,Iran,Yemen, Eithiopia etc. who have modified genetic [yet still Jewish] genes to add to our already large pool). B. Intermarriage always causes alot of confusion and introspection in the children. This is caused from the natural need to belong, and from exterior sources such as racism and even peoples need to classify others into this and that. In other words your choices have a profound affect on your children....and being a child of intermarriage I can attest to the fact that we have a much tougher time in life than children with firmer background. It sounds to me like your enthusiasm for intermarriage may have to do more with your personal choices than with the actual need to find a suitable mate genetically.
binary
Jewish diseases = inbreeding
Too much Jewish inbreeding leads to all of these uniquely Jewish deseases.
B.BarNavi
The cure for Tay-Sachs
Converts, Ashkenazic-Sephardic intermarriage, and yes, even non-Jews marrying into the Jewish population can introduce genes that "dilute" the recessive alleles responsible for such "Jewish diseases".
And Anon, I believe those were the same arguments against miscegenation in the Good Ol' Days... Because an interracial/interethnic/interreligious couples may potentially produce a child that may or may not feel alienated under one or both sides, the couple shouldn't marry in the first place. It's a tired argument, and I will have none of it.
Also, as the product of an intermarriage between a Jewish father and a non-Jewish mother, I don't see how tougher (or less tough) or "less-backgrounded" the lives of people like you are than children of Jewish mothers and non-Jewish fathers, or even children of two Jews. There are innumerable cases of two Jews with just about zero Jewish background marrying and leaving no background to their children. Just check out the baal teshuva phenomenon. It's less the nature of the marriage itself that has a significant impact on the life of a Jewish child than the efforts that the parents make in giving the child a Jewish education.
(Help me out here, Becca!)
getzkj
Nothing Wrong with Intermarriage
Being the new guy, I don't know how anyone will feel about this post. But look at it this way, Anonymous, and B.BarNavi, you both are products of Intermarriages, my child will be one two. (I however do not know what to call myself because my father's parents celebrated Jewish Culture, but he did not.) It is who you are. My wife and I have already decided to celebrate both types of holidays and teach our children the meaning of each one. When the child is old enough, let him/her make the choice. It was only a few years ago that I found out my family's history, and I am more proud of who I am now then before. Since we are talking about Intermarriage, have you seen the lasest studies? There are even Books on the Subject!
That is all I have
PS Please read my blog and tell me what you think.
NNoach Pheldmann
Dont tumors have rights too?
Dont tumors have rights too? After all, they are human too! WE should negotiate with cancers, not stamp them out with chemotherapy which causes collateral damage. Im sure if we engage with cancer in a reasonable discussion, we can find a relevant middle ground in which the cancer and patient can coexist. Our current therapies for cancer do little more than stir up the cancer and create new cancers