Tag: BRCA

TV Invaded My Escape Plan

My secret to getting away from Pinktober madness is music, of course. The Rock and Roll Hall of Fame nominations come out each October and I’m usually able to use those as a nice distraction. This year, there is the added bonus of the “Foo Fighters Sonic Highways” documentary series on HBO. I thank my lucky stars for Dave Grohl.

The series (and creator) was featured on Sunday’s “60 Minutes”, a show I generally do not watch. While waiting for the Grohl-interviewed-by-Cooper segment, I endured a piece about genetically manipulating embryos, in order to have a baby that does not have any faulty, disease-causing genes.

I’m not going to go into the “playing god” aspect, I’ll leave that to internet comments: “if your mother had done that, you would not have been born” arguments that rage around this topic. Not having ever desired kids, I’m a bit dim on this subject. But the woman featured in the segment decided to take this path after getting breast cancer at age 29, and yes she has the BRCA mutation. Of course that gene is one she sought to eradicate. The interviewer asked her if her goal was, “breast cancer ends with me” and the woman said “yes”.

Look, I understand that BRCA is a big issue in breast cancer discussions. But it is possible to get breast cancer without being BRCA positive—I’m one such patient. In fact, from my rather weak grasp of breast cancer science, it is my understanding that BRCA is not present in most breast cancer patients. So how can this woman be so certain that she has eliminated the chances of her progeny ever getting breast cancer? Not sure breast cancer has ended with her for her descendants.

Perhaps I am wrong to be annoyed, to think that this is irresponsible journalism? Generally, I do not watch these types of magazine TV shows. While I gather that something like “60 Minutes” is a bit more reputable than the morning entertainment & lies shows, I still do not think they are a reliable source of medical info. Sadly, most of the public think things like “60 Minutes” are perfectly reliable. Did the show spread more misinformation (I am vaguely aware there was a false reporting or something scandal with them earlier this year)?

I am so tired of these sort of “winning the fight against breast cancer, kicked cancer’s ass” type of statements: breast cancer ends with me. Do we really have as much control as we’d like to think?

Argh—I just wanted to watch something about one of my favorite bands, about a cool project that has kept me entertained, educated, and distracted this Pink season. Can I not get one moment’s respite from breast cancer bullshit?

From the book Five Lesson I Didn’t Learn from Breast Cancer by Shelley Lewis

From the fourth from the last paragraph in the chapter called “Pink Isn’t Black or White”:

 “Women of Ashkenazi Jewish descent have a higher risk (of having BRCA mutations), and because scientists have isolated the part of the gene that needs to be tested on those women…their cost of being tested is much less”

 This is only one place I’ve seen this, but anytime there is a way to save money, it is worth a look, in my opinion. Make sure you research/ask about this cost issue if you are Ashkenazi Jewish; pink advertising, when using fear of cancer to herd women into testing and such, is generally less than honest. In other words, I don’t think better pricing will ever be offered, you gotta ask. Negotiate, like buying a car, and expect better service, since it’s your body, not a car. And even if insurance is covering the cost, you’re paying in to them as well.

 Funny how cancer made me realize maintaining my body was really just all about the benjamins.

 

Thanks For The Inspiring Comments!

I’ve received a few inspiring comments on recent posts. In the event that other readers have not commented, don’t read comments, and have some similar thoughts, I thought I’d better put a quick post up about a couple of things.

I was sent a couple of links to stories about Ms. Rose, the Miss America contestant who is getting the bilateral mastectomy. I did not, and probably will not investigate her case too much. I simply heard her story and passing and let it inspire me to continue my reflections on the decisions I made in my personal experiences. Ms. Rose is not the first minor celebrity to do this (did we not just witness something similar with Sharon Osbourne—I’m fuzzy on her medical facts; I am more interested in the human nature aspect; as in her actions and the media reported reaction), and I doubt she is the last. However, for those paying more attention, the two measly articles I read implied Ms. Rose did not have the BRCA gene, which is impossible, everyone has the gene, the key is in the mutation. I urge everyone to get facts about this from reputable resources. It is possible the articles were engaging in a kind of verbal shorthand, much in the way that retail or movie theater employees ask us for donations to support breast or childhood cancer. Who the hell “supports cancer?” What they really mean is to support research or the fight against cancer, but we as a society get lazy and cut out a few words. Hey I worked in retail for about 20 years; I know how tiresome it gets to ask, for the millionth time in a day, for more money from a customer…while they give you money. It sucks. But now as a person with an up close and personal knowledge of cancer, it annoys me. I would never “support cancer”, and I think it is important to be clear and use proper language when talking about cancer.

Speaking of being clear—I am worried that some might think I am not grateful for how lucky I am in my cancer outcomes. Believe me or not, I am. I know it could’ve been worse, I have personal experience with friends of “worse”, but I do not feel the need to use their stories to quantify my gratitude, it is too private to me and to them. I hope readers can be ok with that.

I will have a little more about gratitude and how it relates to my views in future posts.

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