CELEBRITY CANCER CLUB NEEDS A RULEBOOK

Evidence. At long last.

I have made no apologies for my distaste of celebrities dispensing of medical advice. Equally, I have been outspoken about the media and screaming headlines. And John Oliver, host of the HBO show, Last Week Tonight With John Oliver just did a hysterical segment on every aspect of science reporting, save for Al Roker, leaving the celebrity factor out of the equation. I've embedded the video at the end of this post for the non-clickers. This blog post has been half written for well over a week. Too bad it wasn't already online. I hate looking like I'm jumping on someone else's bandwagon.

So riddle me this about that. That being the media, the headlines and celebrity medical advice.

The primary purpose of the media and their messaging is sales. The goal is to drive traffic to purchase their papers and magazines, watch their ad sponsored shows, visit their websites. Sadly, this rule applies to the National Enquirer and to the so called trusted sources for medical information, which, if John Oliver is to be believed includes WebMD. 

Celebrities are followed by the paparazzi. The media or a form thereof.

Let's add the proverbial train wreck into this equation. Sprinkle it with sex sells and breasts do equal sex. Add a dash of sensationalization and sound bites and suddenly, we have every ingredient for a hot mess. A misleading, unreliable very hot mess.

And today, thanks to research from Ann Arbor, MI, we have a study. I learned about the study and the findings in Science Daily. I had to get my hands on the actual publication, (which, of course, was behind a paywall - separate issue) so I could be sure the findings were not being sensationalized, skewed or marginalized. I wanted to be sure that the findings most relevant and helpful to the patient population were included. 

I'm not concerned about what celebrities are saying and I'm not concerned with distribution, market share or internet hits. Quite simply, I'm concerned with the truth. It may not be sexy enough to simply present the truth but when we are making decisions that are life changing, it seems to me, they should be based upon the the best information available at the time we are making our decisions.

It also, reasonable persons might argue, is widely understood that medical decisions should NEVER be based upon the gibberish that is being sold by a celebrity telling half the story or making statements that sound a bit like snake oil. One might also argue that People magazine is for entertainment and yet, it seems whatever part of the story is being told, according to the study findings, certainly appears to drive medical decisions and trends observed in the study. Medical decision are indeed tied to the celebrity sofa, rather than the laboratory bench. Nails on a chalkboard. A bazillion nails on every chalkboard on the planet.

Let's break that down, shall we? You've been diagnosed with cancer. Since this blog is primarily about breast cancer and the study was about breast cancer, I'm sticking with breast cancer. Presumably, you have at least one doctor treating your disease. Likely, it's more than one but there is a doctor in the house. The doctor is the one you should be discussing your options with, based upon your set of circumstances.

Sadly, many women (again, not leaving out the men but it's female breasts that seem to drive the phenomenon noted) do not approach their doctor with a clean slate. It's already been scribbled on. Autographed by the likes of Guiliana Rancic, Suzanne Somers, Melissa Etheridge, Wanda Sykes, Sheryl Crow, Christina Applegate, and yes, even Joan Lunden. Through a rigorous process of combing major media outlets, removing duplicate information, using specific keywords, the researchers identified 17 celebrities to compare treatment choices and trends at the University of Michigan Comprehensive Cancer Center.

Among some of the things they found and are included in the publication:

• While 17 celebrities and their diagnosis date are mentioned, the authors were clear that some of the celebrities did not discuss their diagnosis or their treatment until years later. Only four of the 17 were known to have bilateral mastectomies, three of the surgery types were unknown, another three were single mastectomy surgeries. Lumpectomy was the largest group with seven celebrities having chosen that surgical option.
• During their analysis period, Joan Lunden was one of the unknowns. Thus, only 2 are considered to be unknown and breast conservation surgery is now at 8. Source: People Magazine.
• Prior to Joan Lunden in late 2014, the last noted breast conservation surgery was in 2007. Of the five in between, four were bilateral mastectomies, one was a unilateral mastectomy.
• In addition to analyzing the amount of information shared, the researchers incorporated and validated the tone of the media stories as either positive or negative using specific keywords.  Cancer, breast, mastectomy, lumpectomy, gene, mammogram to name a few. The charts map the frequency of the different words and the corresponding media tone for each word. The methodology used to determine good vs. evil is described in detail. It's cited and solid.
• Angelina Jolie's surgery is not included in the 17, nor are any of the stories that specifically discuss her, as she did not have cancer. The spike in the positive tone presented by the media of the word bilateral is higher than anywhere on the chart after Angelina's announcement. This spike was observed to be the result of mentions of other celebrities who chose bilateral mastectomies. In other words, the secondary stories spawned by Angelina Jolie's prophylactic surgery.
• Only the word chemotherapy spiked higher numbers and equally negative tone. The focus of this study was on surgical choices but they chart a large spike in media reporting of chemotherapy and radiation in highly negative tones in 2001. That would be the time Suzanne Somers began to position herself as a go to source for alternative therapies. (Complimentary and alternative mean different things in my world, and alternative means, sans scientific findings, which could be akin to snake oil, having the potential to do harm, must be examined closely) I'd surely be curious to see if there was a decrease in chemotherapy and/or radiation based upon that highly negative tone recorded over this period of time. 
• The investigators note that articles about celebrities that chose lumpectomy focus on the diagnosis rather than the treatment choice and the tone tends to be more negative.
• The positive tone and focus on the surgery over the disease where it involves bilateral mastectomies is cited and "highlights the different values that the scientific and media communities hold"
• The increase in bilateral mastectomies in women under age 40 at their center began in 2002 and continued to rise, with a spike in 2008. This surgical choice began to increase in women between the ages of 40 and 59 in 2008.
• In 2008, Christina Applegate was diagnosed with cancer and underwent a bilateral mastectomy. Most media reports only stated Christina Applegate had surgery for DCIS.
• Wanda Sykes also had DCIS and underwent a bilateral mastectomy because, as she announced on The Ellen Show, she now had "zero chance of having breast cancer." And that would be false, incorrect, wrong, misleading and yet, it's out there. Wanda Sykes, by the way, happens to be, quite possibly one of my top three favorite entertainers. There is a keyword in this bullet point. I'll give you a hint. It has nothing to do with medicine.
• The fact that Christina Applegate had a strong family history and a BRCA mutation is reported inconsistently according to the findings presented.
• Nothing about Wanda Sykes' genetics or family history was discussed. She simply stated, inaccurately, that she would be having mammograms or MRI's every three months "just to see what it is doing" which was easily interpreted as what would happen if she chose lumpectomy over bilateral mastectomy. When I listen to that statement, although not noted in the paper, I would imagine she was mixing up surveillance when deciding her options after the DCIS was found (removing or watchful waiting). Obviously, she opted for removal of the DCIS which is a second decision. Now we are at decision three: lumpectomy or mastectomy. Wanda chose mastectomy but the discussion of the 3 month watch and wait sounded like that's what she would have to do if she chose lumpectomy. Did I lose you? Read it slowly or email me. I'll be happy to explain or get on the phone. The DCIS debate rages on. Surveillance after DCIS is removed by any means is pretty well defined and as rooted in evidence based practices based upon what we know today. Tomorrow, someone may crack the case.

So what to do? I have a few suggestions which I have already outlined in a couple of the links to older posts I've written which are at the end of this post.

To the celebrities:

• Do NOT position yourself as an expert.
• Insist that your interviewer allows you to tell the whole story, "I have been diagnosed with Stage 2 Triple Negative Breast Cancer. I have no family history. I've chosen to have (insert surgical decision here). I don't know about chemotherapy and radiation yet. Breast cancer is a complicated disease and until we get the answers from the surgery, I don't know about what comes next but I'll be sure to let you know." Full Disclosure. Or....
• None at all. "I have been diagnosed with (insert any cancer type) and I would request privacy as I undergo treatment for the disease." Some rag or TMZ will get their hands on the info. Get in front of it.
• Do not speculate as to the reasons why you developed cancer. No, it was not the sugar in your diet, Joan. And NO, Melissa, stress did not "activate" your BRCA mutated gene and mess up your pH causing your cancer.
• Do not discuss how easy it was for you to sail through chemo if you have access to a well of resources to help you. Most don't and subsequently, most feel like they are failures for not being able to keep up with you when your entourage is a reason, quite possibly the sole reason, you sailed through anything. 

To the media:

• If you have a celebrity on the sofa, don't ask leading questions to sensationalize the diagnosis. Ditto print. Leave the drama out of it. Tell people to go watch Season whatever, Episode whichever of Grey's Anatomy for their entertainment. Cancer isn't entertainment.
• If you will be doing an interview that is going to be what I like to call a "self violation of every HIPAA right," have an expert there to clear up any statements that may not be clear to a lay audience. Hell, it doesn't even have to be a doctor. A trained, knowledgeable advocate would know how to make sure the information was at least accurate. A smart advocate would know when to say, "I don't know that answer but that is something women should be asking their doctors." Yes, I'm offering my services.
• If the celebrity asked for privacy, respect it. I can tell you, it doesn't matter if you are the Queen of the Universe or the queen of your own small piece of the planet, or a pawn on someone else's chess board, hearing the words, "You have cancer," is terrifying. Having a photographer staking out entrances to hospitals to snap a picture of someone going in for any type of surgery is just wrong on every.single.level.
• Consider this long and hard. I have long felt that a real patient that has an understanding of both the science and the community who is interested in that science should be part of the editorial team. Yes, I'm offering my services yet again.

To my fellow patients:

• Ignore all celebrity advice. Every single bit of it. Play their music. Laugh at their jokes. Use them to find a place for mom. Take their fashion advice (although I wouldn't, definitely not a fan of the mean girls). Celebrities entertain.
• Use the internet wisely. It's not meant to be the internet pine box. There are too many places to mention but start at the hospital sites if you are looking for information.
• Check the community sites if you are seeking support or information from other patients. Using #bcsm hashtag on twitter is self-policed by both patients and doctors alike. If twitter is your place, that's a good jumping point.
• Think a headline is misleading or a story is being half told, Gary Schwitzer is your man. Health News Review has been around ten years.
• Researchers provide evidence to guide treatment.
• Clinicians care for you. Choose doctors you are comfortable with.
• Ask questions.
• Make sure you understand the answers to those questions. (That one is huge)
• Ultimately, despite what the evidence says, the decision is yours.
• Do not allow yourself to be bullied by a doctor or influenced by a celebrity.
• Discuss your options. Carefully consider every angle. Talk to people who have experienced every option on the table. Several people if possible.
• Make the decision that is right for you.

At the end of the day, there is no right way to do cancer, there is only the way the works for you. Period. The End.

To the researchers, Michael S. Sabel, MD, FACS and Sonya Dal Cin, PhD:

• Thank you for the research. It validates what many of us, particularly in the breast cancer community have been shouting about for quite some time.
• Thank you for responding to my email to clarify a specific question I had.
• That is how we like to collaborate in the patient world and your rapid response tells me that you value us, the patient population and for that, I am grateful.

Some of my prior rants are here:

Everyone's favorite Hormone Queen

Same Hormone Queen, Having Smokin' Hot Sex

Shameless Misleading Headlines
Melissa Etheridge Plays The Blame Game
Guilana Rancic, Jeans and HSN

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