Saturday, May 21, 2016

MY BODY, MY BLOOD, MY DATA, MY CHOICE

By now, some of you may be aware that I was one of four patients named in a complaint against Myriad. A copy of the official complaint and a full explanation of Our Genes, Our Data is on the ACLU website. There is also a blog post on the ACLU site. Briefly, I simply wanted any and all data generated by Myriad from my BRCA test. I was afforded the opportunity to share the a personal statement during a call which included a number of representatives from the media.

 My co-complianants are Barbara Zeughauser and Ken Deutsch (cousins), and Runi Limary. I am honored to stand beside each of them to let everyone know.....


Sidebar: It is noteworthy that Myriad launched a new patient portal approximately 45 minutes after they emailed me the information they previously said I was not entitled to have, and it is also noteworthy that this information was sent to me only after the phone press conference was publicly announced by the ACLU who facilitated our requests. Myriad's response to the complaint is posted on their website.

These were my remarks and what follows at the end are links to some of what has been shared by various media outlets over the past 24 hours.

 The press statement

My name is AnneMarie Ciccarella.

I live in New York. Ten years ago, I was diagnosed with invasive breast cancer. Genetic testing was recommended by my doctors because my mom was in her 40's when she was diagnosed with invasive breast cancer. Testing was done by Myriad Genetics on my BRCA1 and BRCA2 genes. I was very concerned about my risk of developing other cancers. But more importantly, I wanted this information for the sake of my daughter and my sisters.

The test results were quite surprising and rather than providing me with answers, I was left with huge questions. Myriad reported that it found a variant of uncertain significance on my BRCA 1 gene and another variant of uncertain significance on my BRCA 2 gene. Basically, they identified the variants and provided me with four possible, and conflicting, scenarios.

My mom developed a second new breast cancer as I was finishing my own treatment and she too was tested by Myriad. She tested negative for both of the variants they found in my genes. Although Myriad has since reclassified both of my variants a few times, each time issuing a new test report, I still have no answers.

I began to volunteer as a patient advocate and I am very involved in cancer research. I was just honored to serve as an advocate mentor at the Annual American Association for Cancer Research Meeting last month where Vice President Biden spoke about the National Cancer Moonshot Initiative. I worked with a group of patient advocates to guide them through a presentation they would give on biomarkers. BRCA testing is considered a risk biomarker. Working beside some of the world’s brightest scientists, I have a much deeper understanding of cancer genetics and the need to pool all data so that scientists can look at the entire picture.

I asked for all of my genetic information from Myriad to learn as much as I could about my own body, but of equal or greater importance to me, I want to see that my data is included so that the research community has access to every bit of data that has been generated from my body. In February, I submitted a request to Myriad, seeking all of my genetic information, including any variants they may have identified but were not included in the report. After first informing me they had no record of my test at all, they then found the reports and sent me copies of what I was already given by my genetic doctor. In March, they informed me the rest of the genetic information I was seeking fell outside of what was covered by HIPAA.

Their response infuriated me. HIPAA is there for the protection of my privacy and Myriad should NOT be permitted to prevent me from accessing any and all information they obtained from my blood.

My body, my blood, my data, my choice how I wish to share that information.

They held their position, which was that they were only required to send me information they deemed to be clinically actionable or potentially clinically actionable. Until last night.

Yesterday, shortly after 5PM, I received an email notification from Myriad, the timing of which is oddly coincidental given our already scheduled conference. They stated that they wanted to voluntarily provide me with all variant information as I originally requested nearly three months ago.  The additional information I was provided showed there are actually 10 variants on BRCA1 and 5 variants on BRCA2. Myriad says these are not clinically actionable findings. There is a difference between clinically actionable and clinically significant. Words matter. Without going down a science rabbit hole, I’m struck by their choice of words, perhaps a bit concerned and may be reaching out to see if someone else can look at what I was sent to assure me these are not significant.

I am recalling the address VP Biden gave to close the American Association for Cancer Research meeting. Two things he stressed most? Sharing of data and “Never forget, Patients First.” I’m glad that they eventually provided me with further information.  That’s a great step forward.  But from the letter I received, it is unclear and quite ambiguous if Myriad will honor future requests from other patients. Based upon their own statement that they are voluntarily providing me with my own records, I can’t help but jump into advocate mode. When we advocate, we do so for the betterment of all. Yes, this is about me, my data and my ability to share it wherever I see fit. But it’s hard to separate my personal self from my advocate self. What was done for me, I expect will be done for any other patient who seeks their full record.  I call on Myriad to guarantee that it will provide every patient with access to their full genetic record upon request.

I will be filing a complaint today with three other patients in order to ensure that every patient can access his or her own genetic information. If HIPAA guarantees our rights to access our medical records, I can’t think of a more sensitive, or more important part of our record and we should have every right to obtain these records.

Thank you for your time.

--------

The call concluded at about 1:30PM. I ran out for my Thursday mental health afternoon which is a staple in my life. Each and every Thursday afternoon, I am committed to a private yoga session followed by meditation and talk therapy. I have a routine and it generally gets me home just in time to have dinner, which most Thursdays is something I pick up on my way home.

I certainly didn't expect THIS to happen. But it did. Three of us spoke on the call. Sandra Park, the attorney from the ACLU opened up the conversation. I spoke next and the last speaker was Rachel Liao who tweeted out the first article about the complaint.
And my friend, Corrie Painter, indeed a true friend to the entire metastatic breast cancer community, sent this to me in response to the tweet from Rachel


And then this with a link to yet another story....
There were messages from so many people on twitter, Facebook, text messages and phone calls. I can't thank you enough for your supportive and kind words. I really didn't expect this to be quite such a big deal but, it absolutely is a big deal for every one of us.

Although a representative from Myriad claims in Science Magazine that "this is much ado about nothing," I might beg to differ. In the complaint, specifically regarding my BRCA1 variant, Myriad reclassified it from its original status of "we don't know" to "we think it's nothing" to "it's nothing" which means anyone whose test reveals this particular variant will not be told of the variant since it's now considered harmless. If they ask for the full data set including variants considered to be "harmless," that variant will be on the list, presuming the request is honored.

As an empowered patient and an advocate, I am not comfortable having someone else, not Myriad and not any other lab, decide what may or may not be of importance. Show me. Tell me what your experts believe but do not exclude me from the equation entirely. I fight this ~because I said so attitude~ at every other point in my medical care. I would not accept that answer from any clinician. Having information that I specifically asked for, generated by the lab and then not shared with me, leaves me with an incomplete picture. Of myself.

Is there anyone among us that is missing this point? Because that really is the point. I asked to have something analyzed. I asked to see the findings. I want that biomarker information, all of it, since that information may be a key factor in guiding treatment choices. Don't show me a puzzle and tell me those pieces on the side, part of my puzzle, don't matter. Don't tell me they don't fit when in fact, maybe they don't fit in the here and now, but perhaps they might, as science evolves. Or Not.

Is benign information going to confuse patients as some have suggested? I suppose it could, but, if the only way to put that information into a much larger database to be examined by more eyes and analyzed by more brains, is to have patients ask for their results so their data can be included for the science community, then we should have the option of doing that. Or not.

We should have the choice to ask and the right to expect that our request will be accommodated in a timely manner. And yes, we must understand all of the possibilities should our information, once in a public repository be tied back to us personally. Yes, we should have the option of saying, "Not me. That's private and shall forever remain so," as any individual decides to take their information and lock it in a vault only to be seen by those the person deems worthy. To each their own.

I'm not 5 years old. I don't need to be treated like a child. I'm not asking a question to prove a point. I'm asking a question because I just want an answer. I'm an adult. I don't need to be spoon fed because I'm not capable of understanding the hows and the whys. As an adult, I'm smart enough to know what I do not know and that I must rely on those who are experts to guide me. Yes, I'm passionate about this stuff and I'm determined to rely on my ability to ask questions.

In particular, I'd like to have the option to question what others may think of the all of the pieces. Interestingly, one of the two variants in my original report, the variant that will no longer be included in the reports of anyone going forward because it is "harmless," yes, that very same variant on my BRCA1 gene is in the ClinVar database. Its status, according to ClinVar, still indicates conflicting interpretations of pathogenicity. In other words, although Myriad "declassified" this variant, others are not so sure. This, my friends, is what we call a second opinion in patient language, and THIS my friends, is just one of the many reasons why I wanted my entire record. I could go all science geek here and ask about how much is known about the potential interaction of two or three or more variants in combination within the same individual but I would be well above my pay grade. That could easily be a moronic remark if looked at by a scientist who has a full understanding of this while I only have a slightly above average, lay perspective grasp on the whole thing.

Is this much ado about nothing as has been suggested? I'm inclined to disagree. That differing opinion on my BRCA1 variant is something. It seems the classification of this particular variant appears to be inconclusive at this particular moment in time, and since this also happens to be in my body, it's not nothing to me until all of the evidence is in. That very same spokesperson for Myriad states that they have previously provided these so called "polymorphism" data (the "harmless" variants identified) to the rare patient who asks. I might like to point out that I was one such "rare patient" who did ask and and my request was also refused until it was announced that I would be lodging a complaint with the Office of Civil Rights for Health and Human Services. He continued that remark by stating that they will certainly do so now, IF required under HIPAA.

To those who feel the complaint should have been dropped because four of us were provided with the information we requested, hours before the scheduled filing, it is that pesky word IF that is troubling to me and that IF is at the center of why I chose to move forward with the complaint.

As someone who has been fully immersed in my own care, has participated in joint decision making based upon all of the evidence based information available at the time of my decision, am I not also a partner in "ownership" of the data produced from my blood sample? As someone who has never walked out of an appointment without a written copy of test results in my hand, whether I could understand them or not, should I not have a complete copy of the data produced from a genetic test. What is the difference between an imaging test that states, Liver: unremarkable, Spleen: unremarkable, Kidney: unchanged from previously noted findings and XYZ variant: benign, ABC variant: benign, LMN variant: appears benign. In my mind, as the information gatherer and keeper of my medical records, there is no difference.

Let's remember, this is a request for the findings gleaned from something submitted by me, voluntarily, from my body and not as part of a clinical trial, but to guide personal treatment decisions. In that regard, the purpose of my choice to proceed with testing was crystal clear. In my very simple and under complicated mind, the results, and their availability should also be clear. If I submitted any sort of sample to perform the test, the findings should be shared with me, without hesitation.

I am of the opinion it is that simple and frankly, it's insulting to read that this is nothing more than an orchestrated political stunt on the part of the ACLU which was allegedly said by a Myriad spokesperson in one of the articles that was written. I'm not the type to be part of an orchestra. When I seek information, it is because I am a patient partner, I am a citizen scientist, I wish to advance research and participate in whatever way possible to move this needle a helluva lot quicker than what I've seen over the past forty years. Lives are counting on it and anyone or anything that is standing in the way of progress, frankly, has to step out of my way.

July 27, 2006.

I sat in a gown waiting for my breast surgeon. It was a post op check. A surgical biopsy was done ten days prior, after less invasive tests kept returning inconclusive results. My mother, a breast cancer patient 20 years earlier realized I would be getting bad news. We both knew. She held me in her arms as she tried, unsuccessfully, to hide her tears from me. I could not stop sobbing. "Is this the legacy I am leaving to you and your sisters?" And the tears spilled from her eyes.

January 4, 2013.

My mom was in the gown and I was alone in the waiting room as she was having a biopsy performed after being treated for a primary cancer in each breast. The first in 1987 and the second 2007. At 6:35PM, I turned to social media. My mom's cancer metastasized. And the tears spilled from my eyes.

My personal actions in this complaint, while multi pronged, are borne of a desire to do everything I can for my daughter. I don't want to replay either of those scenes. If I am to wrap my daughter in my arms to console her because yes, life can be sad, if tears must spill as they most certainly will, I would prefer neither of us be in a hospital gown.

If indeed, I come to be accused by association of orchestrating anything, I can assure you, this is what I seek to orchestrate: A different story for the next generation and for all of the generations that follow. By seeking and sharing whatever I can in the hopes that I am contributing to a change that is long overdue.



Here is a list of some of the stories that were shared with me since Thursday for anyone who might be interested. Some may require a free account in order to read them. Most don't.

http://www.nature.com/news/myriad-genetics-embroiled-in-breast-cancer-data-fight-again-1.19953

http://www.politico.com/tipsheets/morning-ehealth/2016/05/aclu-accuses-myriad-of-data-hoarding-dod-cerner-project-marching-on-congressional-doing-214414

https://www.genomeweb.com/molecular-diagnostics/patients-file-hipaa-complaint-against-myriad-genetics-withholding-variant-data

https://www.statnews.com/2016/05/19/myriad-genetics-hipaa-access/

http://www.sciencemag.org/news/2016/05/after-prominent-gene-testing-firm-declined-give-patients-their-complete-data-aclu-filed

http://abcnews.go.com/Health/biotech-company-patients-face-off-gain-access-genetic/story?id=39228231

http://www.ajmc.com/focus-of-the-week/0516/aclu-complaint-against-myriad-genetics-suggests-broader-campaign-to-compel-data-sharing

http://www.streetinsider.com/Corporate+News/Myriad+Genetics+(MYGN)+Addresses+HIPAA+Complaint%3B+Believes+it+Acted+Appropriately/11655784.html

http://healthitsecurity.com/news/patients-allege-genetics-company-violated-hipaa-regulations

https://www.geneticliteracyproject.org/2016/05/20/aclu-files-complaint-company-withheld-genetic-information-consumers/

http://sonoranweeklyreview.com/myriad-genetics-says-four-patients-file-complaint-against-company-to-hipaa-believe-complaint-lacks-merit-nasdaqmygn/

http://www.alternet.org/personal-health/biotech-company-wants-power-deny-patients-access-their-own-genetic-information

These two are the same stories from Reuters, but they were in publications for the UK and Asia.

http://uk.reuters.com/article/us-myriad-genetics-regulations-complaint-idUKKCN0YA308

http://www.channelnewsasia.com/news/health/myriad-hit-with-complaint/2801496.html

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Friday, May 13, 2016

HELPFUL IS ...... BEING HELPFUL



Recently, too recently, I had someone very close to me make the statement that I no longer have cancer. Based upon so many things that seem to be happening all over the place, I am either like the person in that song or somehow there are chalkboards every way I turn.

Clowns to the left of me, jokers to the right here I am, stuck in the middle with YOU (and yes, that would be all of you because I know you get it).

OR

I get that bone chilling feeling from the base of my skull all the way to my toes that occurs when something grates on my nerves like nails on a chalkboard.

In a very old post on this blog, I may have made a sarcastic reference to this phenomenon of "you're done" and if indeed it made print, despite my brain challenges, I recall thinking,
What? The minute the last chemo needle is yanked, it's over? SERIOUSLY??? You must be kidding me, AND you really should step away, particularly if there is a sharp knife within reach. Or better, an IV line with some poison to infuse.

I want to say, jokes aside, but this really isn't a joke. It's more along the lines of, "You're an epic asshole." But I don't say that either. I'm diplomatic but I'm tired of explaining. Yesterday, as I finished my last follow up appointments for this year, I shared a brilliant article from The Guardian, Why Cancer Isn't Over After You're "Cured" and it drove home plenty of excellent points.

Here's the thing. Everything in life is about perspective. Yes, I realize that someone will always be in a worse situation than I am in and others will be in far better situations. However, simply because someone else is worse off, must I minimize my own feelings? And if that's the case, I'd really like someone to give me a reasonable, logical explanation and one that is not detrimental to my mental well-being.

This tyranny of hope thinking (those are not my words and have been used by many) is wrong to thrust upon another. Even if you believe you are being helpful, as I do think most are not ill-intentioned, we need some ground rules. I offer, as a starting point the following.

Helpful is listening to someone when they are having a moment. Or several. Even spanning many days.

Helpful is not trying to understand that which you can never understand, even if you have the same exact illness and are in similar circumstances. Are there backstories that you may not know? Expect that there are backstories. Perhaps there's a kid dealing with a mental illness or a mother whose very same disease metastasized after too many years or maybe there has been a betrayal, the worst possible betrayal, repeatedly, by the very person who should have your back and was really never there at all? Could even be all of those things, at the same time, in the same person. Yes. If that string of thoughts brought a question to your mind, the answer is yes.

Helpful is not reminding someone It Could Be Worse which is a subtle, or not so subtle way of thrusting a negative opinion on feelings they may already have guilt for feeling.

The list goes on and on and if you wish to add your own feelings, feel free to use the comments. I don't need to go any further with that. I think the point is clear enough.

I live with something known as cPTSD. Likely, many of us live with this in one form or another. Like most conditions, ailments, illnesses, disorders, diseases; it's a spectrum. Oddly enough, the best place I've found to explain the phenomenon is a site known as Out of the Fog. I'm still In The Fog so yes, it's a little bit funny (cue Elton, sorry for the ear worm). It's worth checking out.

When you don't know what you are talking about, shut up or take the time to learn so you can truly be supportive. Don't tell a cancer patient, especially not a breast cancer patient, "You're cured." Do not EVER say, "You don't have cancer anymore." Or, act quasi-surprised and query, "You still have cancer?" I have notes in a journal. I shared them with an online support group and I just found them. They are from 2007. My oncologist told me in our last regular appointment post chemo, "I will never say you are cured because we just can't know."

Each time my reality is minimized, the scabs I'm trying to heal are ripped right off. I've learned to live with my reality and process what I must to move forward. As long as that's the reality, there will be moments. The key is to acknowledge the feelings or the thoughts. Process them and let them go to the best of your ability and in the time frame that works for you.

 Do I hold on to those thoughts? Absolutely not. I live each day, facing challenges, rejoicing in milestones, appreciating the simple moments, watching a beautiful sunset, being mesmerized by the roaring waves of an angry sea, laughing with people I know and love and also with some (shout out to AACR crowd) I've only spent moments with, anticipating special events, spending ordinary moments with my family, loving deeply, crying tears of sorrow and tears of joy.

Do I have those thoughts? Positively yes. I don't live with those thoughts every day despite the fact that I am entrenched in the world of cancer advocacy. I have those thoughts when I'm facing my yearly check ups, when I'm sitting in the chair for a blood draw, when four different doctors poke and palpate every conceivable lymph node, and yes, sometimes a random thing will trigger a thought when least expected and those are the worst. They creep up and you don't see it coming. But when that happens, I am gentle with myself. I do not beat myself up. I accept that we are, each of us, in this moment, a conglomeration of every past moment and whatever we experienced in those moments. The good, the bad, and the ugly. Cancer is a pretty big ugly.

As an afterthought, for those who presume that advocating is form of not letting go of the disease, you would be entirely wrong on every level. Advocacy, despite the pain that happens with every death, every set-back, is not depressing. There's a difference between sadness and depression. Being sad is life. Show me the person who is living a perfect and happy life, every day of their life, and I will show you a liar. We all have something. Some people are hell bent on hiding every blemish. I have limited patience for those who would claim perfection. Choosing happiness and acceptance in the face of adversity, that's perfection. Having the option to pursue a passion is perfection personified.

Those who choose any form of advocacy are following a passion. Advocating is the exact opposite of holding on to something that is a sonic boom in the scheme of life changing events. Advocating does not make me Cancer Girl, it makes me someone who is determined to leave just one person with more hope today than they had yesterday. Advocating is acknowledging those in far worse situations and making sure they know that I have their backs. And selfishly, advocating is a way of taking back control over that which I had no control over, so that I can dispense with the worrisome thoughts. For those who have suggested I am cloaking myself in a cancer blanket, just stop.

If this post is making you squirm, even just a bit, now might be a good time to look at the reflection in the mirror. Unfortunately, those who should be squirming more than just a bit, will never see these words.

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Tuesday, May 10, 2016

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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