Research is evolving and it is evolving at warp speed for some. For others, not so much. There was an infographic from the recent ASCO (American Society of Clinical Oncologists) meeting touting those five year survival rates. Just as an aside, that is a statistic I happen to abhor. A show of hands please.... Who among us is a five year survivor living with metastatic breast cancer. Off the top of my head, I can come up with 20 names in a millisecond. I am not one of those 20, but my mom is and so are many of my friends, quite a few of whom succumbed to this wretched disease in a very short period of time.
However, this particular infographic was telling and chilling. It can be found on Phrma.org, the Pharmaceutical Research and Manufacturers of America. The Value of Cancer Medicines may have fallen under the radar but something jumped off the page when I glanced at just one section of the image.
With apologies for not obtaining proper permission for cutting out this piece of the image to include here, something is really wrong with this picture. Or maybe, it's the way the statistics are being read and interpreted. Anyone who knows me, knows how I have a problem with the presentation of statistics. Anything can be skewed to punctuate a point. I'm choosing to highlight something that gets lost in the pink hype. I'm not being militant. It gets me no where fast. I am pointing out, for the umpteenth time, we have made little or no progress with breast cancer in the only area that matters. DEATH.
I have been saying that breast cancer is NOT the great success story it's so often hyped to be; it's just the one that's been best marketed. This is a sobering reminder of how far we've come in 40 years. Yes, 40 years. I would hardly call a gain, that in simple math, equals one half of one percent per year. I certainly do not see this as a dramatic increase in survival. It's actually abysmal.
And now to the headline. Joan Lunden is the latest celebrity to join this club. I'm not going to steal any of the quips or lines I read anywhere else but let's just say that Good Morning America seems to be suffering from the Breast Cancer version of the SNL early death syndrome.
I've seen people criticize the use of the war metaphors. Frankly, although not my cup of tea, I respect everyone's right to do cancer their way. And there is no right way to do cancer. There is only the way that works for each of us. I have little patience for sitting in judgement over choice of words. Ditto, cancer is a gift. Not for me, but for someone else, maybe. Again, none of my business to criticize.
My rub? And I've said this before. Tell the whole story or don't say anything. Get ahead of the tabloids and TMZ. Yes. Announce there has been a diagnosis because yes, it will come out, likely sooner rather than later. Control the information.
"I've been diagnosed with breast cancer." or "I am being treated for breast cancer."
Perfectly fine.
Also fine and something that is a source of (seeking the right word... thank you chemobrain) solidarity (it's not the word but it's the best I can find thanks the the word drop):
"In the beginning you almost feel like, 'What did I do wrong?' "
On an interview sofa, stick to the feelings, the emotions and leave the science behind the diagnosis out of the conversation. Realize, too, that many of those watching do not have anywhere near the ability to access the same level of care. Understand that your message is being discussed openly by countless people thanks to the wonder of twitter, Facebook and many other social media channels.
The caveat? If you are going to share the diagnosis, share it fully. Please don't choose words like aggressive in the same conversation when explaining the mammography showed nothing but the sonogram found the tumor. To me, I read lobular breast cancer which is hard to see on a mammography and the word aggressive means high grade, late stage.
I'm left with questions and when I understand the underpinnings of this disease to whatever small degree I've learned via my advocacy, I can't help but follow my human nature. Speculation. The science geek in me is speculating which makes me, too, a guilty gawker. I would have loved to see this turned into a real teaching moment. Talk about dense breast tissue. Talk about the limitations, in some cases, of mammography.
The amount of misinformation being bantered about regarding breast cancer is staggering. Early detection. Better imaging. And yet, absolutely no progress in stopping death. At least none to really speak of..... The truth isn't tied in a neat pink bow. The truth is messy and underneath that pink ribbon, it's quite ugly, too. We have to do something to stop our sisters (and our brothers) from dying of a disease that has had more money thrown at it from more sources than (speculation again) almost any, if not all, other diseases.
This is not a bash on Joan Lunden in any way shape or form. It's more of a commentary on our society. I feel that those in the public eye, those whose words and images come into our homes DO have a responsibility when sharing information about a disease diagnosis. The information should be accurate and complete or it should not contain any medical details at all.
I do wish Joan Lunden the very best as she pursues whatever course of treatment she determines is best for her. Every diagnosis saddens me. And every death is like a dagger to the heart.
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My first thought when I heard her news: Please, please, please don't make us suffer through another Guilianna Rancic-style cancer "experience" in which the most prominent headline is the size of the implants she and her husband are picking out for her "new boobs.' Totally agree with you that celebs who join the cancer club have a duty to either be accurate or keep the deets to themselves.
ReplyDeleteNancy!!!
DeleteBeing absent has made me realize how many people I miss. You said in four lines what it took me several paragraphs to put together..... 100% agree!!
She probably said it's an aggressive cancer because that's what she was told. It takes time to get up to speed on all the new words and phrases that are being rapidly introduced into ones lexicon when one is diagnosed with cancer.
ReplyDeleteI don't think her cancer is lobular, by the way. I had almost exactly the same experience she did [with the mammogram], and I was HER2 positive. (Of course, my core needle biopsy came back negative. Twice.) What I was told after the path report came back was exactly what Joan Linden reported: "aggressive, chemotherapy...." Had I not demanded a copy of the path report, I might have been in the dark a whole lot longer.
But I'll tell you something: when your PCP gives you an encouraging look and tells you how hopeful it all is, only to have her face fall when you announce "HER2," and your onc tells you, with a pitying look, that because of Herceptin, she can now save half again as many women as she could in the past (when most of us died, regardless of stage at diagnosis), it's hard to think beyond "aggressive."
Maybe Joan Linden isn't HER2+, but whatever she is, it was "aggressive" that stuck in her mind. She must be terrified.
Still, this kind of disclosure ought to be made with complete and accurate facts or not at all.
Too many of us hang on to the words of celebrities. Some of us have a working knowledge to read between the lines. I try to step outside of myself and think about those who go for their mammograms every year and then are terrified by a celebrity announcement of an aggressive cancer despite faithful screening. I'm with you, Rhonda: complete and accurate or not at all.
DeleteI find it hard to agree with you with my new NED diagnosis. After five years 7 chemos, a liver resection, ablation, c-diff, sepsis, herceptin....and finally Perjeta and SBRT putting me NED, I do think progress is being made. There are new ones with the same abilities for ER cancers but we need to do more for Triple Neg.
ReplyDeleteAs you know, statistics are old. In ten years, we may find that women have a much more hopeful outcome.
Every cancer is called aggressive by their "owner." Even Stage 0.
My guess is she's HER2+ but who knows? You are right, she should be open but you know how women have no clue what their cancer is? Being a newswoman doesn't mean she's any smarter.
I wish her well. I am one of the women who is five years with mets. I hope she does't go the pink route.
HI NED!!!
DeleteYOU have inspired me. I need to see more Ann's -- I know your whole story and I know that you clawed your way to the land of NED and I am so thankful, so grateful, just so g'damn happy that you responded to everything that was thrown your way. There were times during the course of your treatment, I was terrified for you (even as you were joking your way through the whole thing). Yes, you inspire me. Anyway who does not know Ann's story and happens to be reading this, I highly suggest a trip to her blog. Ann knew she was dying. Having been alongside her (virtually by reading her blog and via a few FB messages) as treatments changed and all that other stuff, seeing her write NED a few days ago gave me hope. (Sorry, Ann.. I know you're not the one I should be getting all sappy with..... you're more of a snarky gal). As for the pink thing, it's Good Morning America. It's marketing and they've got the pink thing cornered with their triumvirate. My money is on the pink wagon, sadly, but definitely...
xoxox
Hi AnneMarie,
ReplyDeleteGreat post and so very true. Too many celebrities are not telling it as it is. I wish, really do wish, that celebrities could just be themselves and share how frightening and the truth about how they are feeling. They would help so many people feel they were not alone in their emotions. I watched a couple episodes of the Guiliana Rancic crapola, and we certainly need less of that and more honesty among celebrities.
Excellent post, AM. I think it's fair to say most of us didn't learn (or fully understand) the dirty secrets of BC until we were diagnosed, and even then, the false narratives persist throughout much of the medical community. I guess for once I'd like to see someone challenge the status quo and use their platform to paint a more realistic picture of what BC is -- and what it is not. The "fauxwareness" has to stop.
ReplyDeleteGreat post AnneMarie! I have learned so much from you and other truth-telling bloggers and BC activists. I am more careful in what I say and I listen more astutely to what others say about BC. I try not to perpetuate or contribute to the multitude of misinformation, confusion, and even false messages that surround BC. The truth takes courage and can be uncomfortable, but it is the only way we can hope to make any progress. Sure--celebrities need to be mindful of what they say, but we each individually also need to be mindful of what we tune into. Thanks!
ReplyDeleteOne thing about being a celebrity is that whatever famous people do every day, it goes out to televisions right across the country.
ReplyDeleteIncredible post thus genuine. An excessive number of big names are not letting it know as it may be. I wish, truly do wish, that famous people could simply act naturally and share how terrifying and reality about how they are feeling. They would help such a variety of individuals feel they were not the only one in their feelings. I watched a few scenes of the Guiliana Rancic crapola, and we unquestionably require less of that and more genuineness among big names..
ReplyDelete