BRCA is a Vengeful Mother F%78er

As I’ve mentioned before, I am BRCA2+ and my husband is BRCA1+. He inherited his gene mutation from his mother; her own mother died of breast cancer very young (I believe she was in her 50s). Now, his mother has been diagnosed with breast cancer for the third time, and this time it’s in her bones. We don’t have a lot of details (this is a side effect of being married to a man – he asks no questions so I get no details unless I call myself, and at this point I don’t want to bother her). She has an appointment at Dana-Farber on Tuesday and will learn more.

My husband is a mama’s boy in every sense of the phrase. He is understandably distraught (mopey is an understatement). And I am concerned about both of them and also her brother. I have never in my life witnessed a closer sibling relationship.

Cancer from a BRCA mutation is vengeful. It came to her once as DCIS, which she treated with radiation and a lumpectomy. So it came back worse more than ten years later, invasive, and she treated it with a mastectomy and chemo. With the chemo she not only lost her hair, but also lost all feeling in many of her fingers and toes (neuropathy), a side effect that’s thus far been permanent. Her mastectomy wasn’t as successful as she’d have liked – the implants caused her a lot of pain in the beginning, and she is still bothered by them sometimes.

So now the cancer is back again, not even two years later, metastasized to her bones and hopefully not to anywhere else (I think she’s had biopsies in her liver and kidneys though, and I know a few weeks ago she had a blocked bile duct, so I’m nervous that they will also discover it’s in her liver).

The BRCA mutation will not leave this woman alone. It’s bad enough to have lost her own mother so young, to have also witnessed her daughter go through breast cancer and treatment at age 30. Now, to have this a third time.

Vengeful mother fucker, BRCA gene. What did this poor woman ever do to you?

FORCE Responds to Melissa Etheridge in AARP Magazine

Here is FORCE’s response to the recent article in AARP magazine in which Melissa Etheridge makes some completely ridiculous statements about BRCA testing and “turning on and off” BRCA mutations:

Dear AARP Magazine Editors,
This letter is in response to your article on “Sheryl Crow and Melissa Etheridge Beat Cancer and Heartbreak” in the October/November issue of AARP magazine. In the accompanying graphic “How They Beat Cancer”, Melissa Etheridge is quoted as saying “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on and off. I turned my gene on with my very poor diet.” This statement reflects a misunderstanding of the role of the BRCA2 gene in cancer, and presents information that is dangerously misleading to your readers.
Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer. Individuals born with a change or mutation in one of these genes bear a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation not because the gene is “turned on” but because they lack a working copy of one of the genes involved in preventing cancer development.
Ms. Etheridge has disclosed that she has a mutation in the BRCA2 gene. “Turning the gene on” has nothing to with the increased cancer risk. While everyone benefits from a healthy diet and other positive lifestyle choices, Ms. Etheridge’s statement about turning BRCA2 on and off with diet is inaccurate and can lead to high-risk women drawing incorrect and dangerous conclusions about their ability to prevent cancer through diet alone, and may lead some women to blame themselves for a cancer they were genetically predisposed to developing.
Equally troubling is Ms. Etheridge’s suggestion discouraging women from pursuing genetic testing. The decision to undergo genetic testing is a personal one that is best made after consulting with a health care expert known as a genetic counselor. Genetic counselors educate people about their inherited risk for cancer and help them make informed medical decisions about their genetic testing and managing their cancer risk. Peer-reviewed medical research studies have shown that there are medical interventions that extend the life of BRCA mutation carriers. Genetic counseling and testing can save the life of a high-risk woman.
FORCE (Facing Our Risk of Cancer Empowered) is a national nonprofit dedicated to improving the lives of individuals and family facing hereditary breast and ovarian cancer. We encourage anyone who has
tested positive for BRCA1, BRCA2, or other gene mutation associated with increased cancer risk, as well as those who are concerned they might be at risk for hereditary cancer, to consult with a medical genetics specialist. Expert-reviewed information, including how to find a genetics expert in your area, is available on the FORCE website: http://www.facingourrisk.org.
Sincerely,
Sue Friedman, DVM
Founder and Executive Director
FORCE: Facing Our Risk of Cancer Empowered
Lisa Rezende, Ph.D.
Vice President/Education
FORCE: Facing Our Risk of Cancer Empowered
Monica Alvarado, MS, CGC
Genetics Services Regional Administrator Kaiser Permanente
Los Angeles, CA
Rachel F. Brem, MD
Director of Breast Imaging & Intervention
George Washington University Dept. of Radiology
Robert Burger, MD
Department of Surgical Oncology Director, Women’s Cancer Center Fox Chase Cancer Center
Susan Domchek, MD
Executive Director, Basser Research Center for BRCA Director, MacDonald Women’s Cancer Risk Evaluation Center Basser Professor in Oncology, University of Pennsylvania
Judy Garber, MD, MPH
Director, Cancer Risk and Prevention Program Dana-Farber Cancer Institute
Karen Hurley, PhD
Clinical Psychologist, Hereditary Cancer Risk

Another Celebrity Miss

Oh geez, here I’m about to go again.

I haven’t previously attend the #BRCA chat on Twitter.  It’s at 9pm on Thursdays and that is just too late for this mama (usually that’s the time I’m falling asleep while watching Project Runway).  But last night I could not resist since I knew, from the BRCA Commons Facebook Group, there was a chance that Melissa Etheridge might show up.  Now, I don’t really follow what ME has to say about BRCA the same way I obsessively follow Angelina Jolie.  I’m doing a research project on AJ, so I kind of have to be following what she says and what’s said about her.  To be honest, I heard what ME said about AJ after her prophylactic surgery (that her choice was “not brave” and in fact “fearful) and basically I stopped listening after that.  So I’m not incredibly informed about her views about BRCA.  It doesn’t seem like they have evolved much since then. My cousin just told me that in a very recent AARP article, ME said that her breast cancer “was of my own doing, and I take responsibility, ” and, “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on or off. I turned my gene on with my very poor diet.”

Of course, those participating in the #BRCA chat don’t take this type of comment lightly, although they treated her with so much restraint and respect when she deserved such a smack down for that bullshit – BRAVO community!  I’m proud of us.

My suspicion is that the common response to these comments is that ME is simply misinformed. We know (from science) that genes are not turned on and off.  Our community is concerned that ME is spreading this misinformation.  I’m guessing that another common response is that ME’s comments are insulting.   She insinuates that those of us who have been diagnosed with cancer are at fault!  I ate french fries and missed a few days at the gym, therefore I gave myself cancer.  I deserved it.  Wow – thanks ME.  Because I didn’t feel badly enough.  I know the main response to ME is that she is using her celebratory platform in the worst way – she could be doing so much good for the BRCA+ community and instead she is misleading people.

One response that I don’t really see has to do with guilt.  Guilt is a major reality in the life of a previvor; we feel it in a lot of ways.  We feel guilty that someone else had to suffer or even die from cancer so that we could learn that there is a mutation in our family.  We feel guilty that family and friends have to take care of us while we recover from surgeries.   We feel guilty that we might have passed a mutation down to our own children before we knew of the mutation (my father feels this guilt every day, regardless of how often I tell him that he shouldn’t).  I know I feel a lot of guilt – I got pregnant and had my child even knowing of my BRCA2 mutation and my husband’s BRCA1 mutation.  But at least I know one thing for sure:  I got DCIS because of my genes – I had a 50% chance of getting that gene mutation, and I just got unlucky.  It had nothing to do with what I ate, nothing to do with how I treated my body.  I also have Rheumatoid Arthritis, and I’ve asked my rheumatologist that question too – did I do this to myself?  Nope.  Just part of your physiology.  Could’ve been a virus, could be genetic.  No one knows.  But it is not my fault.  And it is not ME’s fault either.

What’s the major take away here?  I hope Melissa Etheridge has a good therapist because that guilt she must carry – thinking she gave herself cancer; it was her “own doing” – that must be an unbearable weight.  I am so glad that the previvor community knows better than to listen to her crap – the last thing we need to be doing is blaming ourselves for losing the 50/50 chance.

More importantly, I remembered that I love communicating with the #BRCA community.  I will definitely be making the chat a more regular part of my schedule.  It’s such a great community of wise, generous, humorous, and insightful people, and it’s worth the time to talk to them – even if I have to DVR Project Runway.

Thanks to Andrea Downing of BraveBosom, here’s the transcript of last night’s #BRCA chat with Melissa Etheridge.

69,000 Wasted Opportunities

I seem to keep coming back to this, or maybe it keeps coming back to me?

In May 2013, when Angelina Jolie published “My Medical Choice” in the New York Times in which she revealed that she had had a preventative double mastectomy due to her BRCA+ status, the world was shocked.  Tons of previvors, among others, responded to Jolie’s article with support, thrilled that a celebrity name would finally bring some real awareness to genetic testing, BRCA, and previvor issues.  I was a little less thrilled; you can read here if you like, but the gist is that I felt that Jolie had missed a chance to let potential BRCA+ patients know about the resources that are available to them.  She didn’t mention genetic counseling, she didn’t mention FORCE  – the only organization that exists to support people with HBOC or BRCA mutations.  Later, I admitted that my response was emotional and reactionary.

But it turns out I might have been sort of right about Jolie’s missed opportunity.  Yesterday in BRCA Commons (a Facebook Group for previvors), there was a lot of conversation about this article posted by one of the group members (I won’t reveal details of the conversation since the group is private).  The link goes only to the abstract of the article, but the abstract identifies the main points – by the day after Jolie’s announcement in the NYT, the National Cancer Institute’s fact sheet on Preventative Mastectomy received  69,225 hits – a 795-fold increase over the previous day (the article concludes that this proves there is direct correlation between celebrity disclosure and online information seeking behavior – do I even need to comment on what a ridiculous use of research dollars that was?).  Jolie used the phrase “preventative double mastectomy” in her NYT piece, and the NYT provided a link from her article to the NCI fact sheet.  Thus, it makes sense that so many people clicked on the fact sheet – the NYT directed them there.

Also linked from Jolie’s article: when she writes of her 65 percent risk of ovarian cancer, the words “65 percent” are linked to the Standford Genetics Program, as well as a direct link to the Pink Lotus Breast Center where Jolie had her surgery.  I can only assume that Stanford paid to be have their program linked from the article since I see no reason why this specific genetics program (among who-knows-how-many-others) would have received this “luck.” But I digress.

The missed opportunity comes then, I suppose, not from Jolie herself, but from the NYT.  At any point in her article when she mentions her risks or her surgery, the NYT could have linked to a variety of pages from FORCE that offer  information by HBOC and BRCA specialists – not just cancer specialists like the NCI, but those specifically in the know about BRCA.  Then, 69,225 people would probably have a much better and more nuanced understanding of the importance of genetic testing and the relevance of BRCA to their particular lives; for all we know, most of those people went to that NCI Fact Sheet and found it such a turn-off (because it is not welcoming in any way, like FORCE is, and is instead so black and white and full of medical terminology) that they did not seek any further information about BRCA.

Like I said above, the abstract of the article about the correlation concludes, “Celebrity disclosures can dramatically influence online information-seeking behaviors.”  And while I think that is so ridiculously obvious that I can’t believe it was even funded, I’m quite interested in the second part of their conclusion, “Efforts to capitalize on these disclosures to ensure easy access to accurate information are warranted.”  Yes – capitalize.  Stanford Genetics seems to have; Pink Lotus might have.  But certainly, I wish our previvor community had been able to – and I don’t mean financially.  I wish we had had the opportunity to say, hey NYT – we are here.  Link to our blogs, link to our discussion boards, link to our mothership – FORCE – because we want to help those 69,225 people.  And even though no one wants to be a part of this, we want to welcome them to our community.

Whine Me a BRCA+ River

There has been a lot of talk (research published has spurred some conversation in Facebook groups that I belong to) about whether BRCA2+ women should be screened for pancreatic cancer.  Up until recently, it was thought that BRCA2+ women should worry about breasts and ovaries, while BRCA2+ men should worry about prostate and pancreatic cancers (among others).  My father’s brother, who was BRCA2+ like my father and like me, died from pancreatic cancer five years ago – he wasn’t yet 60 years old.  A friend of mine from my FORCE group has had a lot of family die from pancreatic cancer.  She and I have talked about these research developments a lot – well, not so much talked, just sort of mumbled, “are you gonna get checked” and then whined in reply, “I don’t want to get checked.”

I confess I’m the one whining in that “conversation.”  Why?  Because 2013 was my year – that was my year to get this all done.  I had the mastectomy, the hysterectomy and BSO, and the breast revision.  I started in January and finished in December.  See there – I said “finished.”  Because I don’t want to do this anymore.  This past January – the 2014 January, I was supposed to see my breast surgeon for an exam.  I’m supposed to do that every year.  But I didn’t because I am finished.  And yes, the part of me with a brain knows how stupid that is, but the part of me that felt the exhaustive weight of impending cancer for 30some years feels like I deserve a year off.  I deserve this year – 2014 – to not have to be examined.

And even though I did have a check by my gynecologist and a pelvic ultrasound in June (this was because I was having actual pain, which turned out to be nothing – as in – it’s pretty weird to get an ultrasound and see nothing, emptiness, zippo, in a space where you not only once could see organs, but also once saw your baby) I am determined to make it through the rest of this year – 65 more days – without being scanned or tested or evaluated for something BRCA related.

As it turns out though, I’ll be back at it full force in 2015.  I’ll get to have that breast exam for sure.  And I’ll get to look into a cardiologist to start monitoring my heart.  Not only do I have heart risks because of my RA, but I learned at our FORCE meeting on Saturday that because I had my ovaries removed at such a young age, my heart disease risk is particularly high due to surgical menopause.  And lest I forget, I’ll be getting that pancreas checked, with a big ole dose of whine included.