Disclaimer: I am all about everyone expressing their own opinions, but I am literally about to lose it with all this insensitive, negative and uninformed bullshit. If you’re going to write an article or post a news story, get your facts straight! Don’t use offensive terms or language – learn the culture into which you’re intruding. In this case, the BRCA culture is very welcoming and inclusive – but we’re also very strong supporters of our members, so using terms like “mastectomy trend” (*ahem*NancyShute*ahem*) or “elective” surgery (*cough*”Dr.” Oz*cough*) are inappropriate and not tolerated.
Hulk Smash: So far I’ve lost my temper twice: once at Nancy Shute from NPR and once at “Doctor” Oz. Those “letters” are below, for your viewing pleasure….
Progress: My letter to Shute was (hopefully) delivered by a friend I know who works at NPR. She may have been unable to deliver it, though, so I’m going to post it here and tweet the hell out of it, because her article made me angry – like, hulked out angry. As for Oz, I sicked my Grandmother on him – she’s ruthless, and he should probably fear for his sanity…
Enemy #1: Nancy Shute at NPR
After reading your article, “Angelina Jolie and the Rise of Preventative Mastectomies,” I have to say that I was appalled at the approach that you took in acting as if a prophylactic mastectomy is an unnecessary action, or an overreaction to a presumed risk. As a BRCA2+ “Mutant” myself, I find phrases like “medical trend” and “mastectomy trend” to be offensive, and I believe that your article is misleading and downplays both the risk and the uncertainty that medical professionals can’t quantify surrounding these hereditary cancers. No one can know their own personal risk based on genetic markers (at this point in time), but the markers do give us a better idea whether we are predisposed to hereditary cancers. Of the 9 girls that I know (all under the age of 35) who opted to forgo the preventative surgeries and increase surveillance, 6 have already developed breast cancer. This is not a joke – and I believe your article discourages women to be self-aware and proactive in a time where it is most necessary.
By the time I was 29 years old, I had been receiving quarterly surveillance testing (mammograms, ultrasounds, MRIs, needle biopsies, pap smears, colposcopies, etc.) for breast and ovarian cancer for almost 4 years. One day last year, after a particularly frantic radiologist shook my shoulders and told me “not to ignore” a particular abnormality seen on the ultrasound (and to have a surgical biopsy right away!), I began to question my ability to endure the constant “will they find it this time, or next time?” routine. My family is absolutely riddled with cancer – no doctor ever said to me, “IF you get cancer”, but plenty said “WHEN you get cancer”. So, after multiple inconclusively abnormal biopsies, unending procedures, quite a bit of pain (although nothing like the pain I was to experience later), I finally gave in to the pressure by doctors to have a preventative mastectomy. I had dreams that I would first breastfeed my future babies, wear a beautiful wedding dress, and look attractive for my partner at the start of our life together, but I had to give those notions up in a frenzy of chaos because I was assure that if I didn’t have the surgery, I would simply not be around for my future children and my partner.
With the frenzy of both positive and negative responses to her op-ed, I hope Angelina Jolie was not frightened, and that she will continue to advocate for awareness, affordability and prevention. The negative press was very hard to swallow, having gone through these agonizing procedures myself, and there were many phrases about which I was absolutely appalled – “mastectomy trend” being one of them. Another, when Dr. Oz referred to the mastectomy as an “elective” surgery yesterday, infuriated me beyond comprehension – the only aspect about it that was “elective” was the date of the surgery. Referring to these preventative procedures as “trends” or “elections” diminishes their importance and de-legitimizes their medical necessity in the eyes of the public. You comment that many women do not have difficulty getting insurance to cover prophylactic surgeries, and I can explain that by telling you that these surgeries are not deemed “elective” – they are registered as “medically necessary”, because they are.
The doctor, Todd Tuttle, that is referenced in your article speaks abstractly (and incorrectly, according to the many that I have read) about his opinions on the necessity of removing the second “healthy” breast when the other is affected. I was simply baffled to read his discouraging estimation, since it is a well-known fact in the breast cancer community that if you have cancer in one breast, the chances of getting cancer in the second breast are much higher:
Women successfully treated for early-stage breast cancer have a higher-than-average risk of a new breast cancer developing in the same or opposite breast. These women also are at risk of the original cancer coming back (recurrence). (BreastCancer.org)
In my family, reoccurrence is a death sentence – those that were diagnosed, treated and “cured” in one breast inevitably had a reoccurrence in the other breast, which was always caught late (because they thought they were “cured”), and metastasized quickly. I’ve also lost and uncle and a cousin to “unknown cancer” (which metastasized quickly) because they were under the impression that men aren’t affected by these types of cancer. Two additional cousins have been diagnosed and treated for breast cancer at an early age, and they opted for bilateral mastectomies – not to be trendy, and not because they were “unnecessarily afraid”, but because they know, as I know, that there’s no escaping this disease if you give it even the smallest chance of survival.
Angelina Jolie is a human being. She watched her mother die a painful death, just as I watched my Aunt, a nun in the order of the Mission Helpers of the Sacred Heart, and the most beautiful soul to walk this earth, die a painful death. Cancer is ugly. Cancer is messy. Cancer is unpredictable and full of surprises that medical professionals struggle to keep up with – it is not a textbook science. By sharing her experience, Ms. Jolie was simply trying to raise awareness of hereditary possibility and by doing this, she may save only one life, or she may save thousands – but she will save lives. Advocacy is the next step in this battle, and I hope, as do my fellow HBOC (Hereditary Breast and Ovarian Cancer) advocates, that she will join our fight against gene patenting and treatment costs. Everyone deserves to learn from past medical tragedy and give themselves the best chance of survival – sometimes, doctors don’t know everything.
Emily T. Holden
Enemy #2: Dr. Mehmet Oz
By Dr. Mehmet Oz
Due to a genetic mutation that puts people at higher risk for breast and ovarian cancers, Angelina Jolie recently revealed that she received a double mastectomy, which removes her breast tissue. This elective surgery effectively lowers her likelihood of breast cancer substantially. She made a courageous decision to benefit her overall health and I applaud that. I urge all of you to show your support in the comments section. Or, leave her a message on “You Feel” here: http://bit.ly/SiVpSy
You know what I feel? I feel sick and tired of “doctors” like you using the phrase”elective surgery” – I didn’t “elect” to have preventative surgery, I was told “you have this, or you get cancer”. The only thing that was presented to me as an “election” was the date of the surgery. Stop making this sound like it’s a choice – it’s the worst decision you can possibly imagine! Giving up your ability to look good for your partner, the ability to breast feed your future children or any hope of looking normal in a wedding dress – it’s not a choice, it’s what she did (and I did) to survive. Anyone who thinks that it’s an “elective” surgery can go speak with my insurance company – they can reassure you that they don’t cover elective procedures, and they covered mine, without hesitation, because it was deemed “medically necessary”. I’d love for someone to show me the woman who would “elect” to have this agonizingly painful painful surgery and reconstruction process…
Want to know what it really looks like? www.upagianthill.com – I might not look like Angelina, but at least I tell it like it is.
To be continued … I guarantee that there will be more.