How hard is it to tell the truth?

Not too long ago, a commercial for a local healthcare system in Western Pennsylvania caught my attention for the “statistic” it features at the very beginning.  The commercial is for the healthcare system’s 3D mammography services.

As soon as I read that “99 percent of women will survive breast cancer if detected early,” I shouted, “YOU’RE LYING.”  Unsurprisingly, the source of this so-called statistic is the Susan G. Komen foundation, though I have no doubt that Excela took the statistic out of context to suit its own purposes.  Excela Health wants to get as many women into the doors for its Walk in Wednesdays, and what better way than to keep perpetuating the myth that mammogram saves lives or early detection saves lives.  Who cares if it completely disregards facts, science or context, right?

Let me count the ways in which the commercial is as wrong as Donald Trump as president (seriously, dude is a clown).

1.) Those diagnosed with early stage breast cancer may go on to become metastatic, though the exact number is unknown. 

The Metastatic Breast Cancer Network estimates that 20 to 30 percent of those diagnosed with early stage breast cancer go on to become metastatic.  (Source)  We don’t know this statistic for certain because of this problem, as stated in Laurie Becklund’s op-ed “As I lay dying”:

I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them [emphasis mine].

 

How can any healthcare network make the assertion that 99 percent of women will survive if their breast cancer is diagnosed given the lack of information?  They can’t, and they should not.  It’s irresponsible for any health care provider to even give the impression that 99 percent of women will survive breast cancer if diagnosed early, especially without giving a time frame (context!).   Ms. Becklund died of metastatic breast cancer (source).

2.)  Excela Health is perpetuating the myth that mammograms save lives.   For years, there has been so much controversy regarding the effectiveness of mammograms.  Do they save lives, or have they contributed to the over-diagnosis of breast cancer?

Back in 2009,  the U.S. Preventative Services Task Force recommended that mammograms should begin at 50, instead of 50, and should occur every two years, instead of every year.

September 23, 2013 CBSNews.com article reported: 

A new study shows that women between the ages of 50 to 74 that get mammography screenings every two years may be at no more risk for advanced-stage breast cancer and at a lower risk for false positives, than those who get tested annually.

The results, which were published on March 18 in JAMA Internal Medicine, follow the 2009 recommendation by the U.S. Preventive Services Task Force that advocated for biennial mammography for women in this age group instead of the previous suggestion of getting screened every one to two years.

However, the study authors pointed out that the original recommendations only looked at age as a factor for influencing breast cancer risk. This new study factored in age, breast density and postmenopausal use of hormone therapy (HT).

According to a February 12, 2014 CBSNews.com item:

A controversial new study has found that annual mammograms may not help reduce breast cancer deaths and may increase the number of women unnecessarily getting treated for breast cancer.  The Canadian study tracked almost 90,000 women for 25 years, and found that having an annual mammogram between the ages of 40 to 59 did not lower the chance of dying from breast cancer more than having a physical examination.

The study, which was published in BMJ on Feb. 11, disconcertingly showed that 22 percent of invasive breast cancers were overdiagnosed by mammography, meaning the tumors would usually have been too small to cause symptoms or become life-threatening.

If different task forces and non-profit agencies cannot even come to the same conclusion regarding mammography, that speaks volumes.    Some might argue that, “Well, hey, the mortality rate is declining, so of course mammograms save lives?”  Well, are mammograms saving lives or is targeted therapies and better treatment contributing to this (source)?

3.) Without context, the 99 percent statistic is just misleading.

The American Cancer Society’s 2013-2014 Breast Cancer Facts & Figures (found here) states:

Based on the most recent data, relative survival rates [i.e., an estimate of the percentage of patients who will survive for a given period of time after a cancer diagnosis] for women diagnosed with breast cancer are: • 89% at 5 years after diagnosis • 83% after 10 years • 78% after 15 years

Relative survival rates should be interpreted with caution. First, they do not predict individual prognosis because many patient and tumor characteristics that influence breast cancer survival are not taken into account. Second, long-term survival rates are based on the experience of women treated many years ago and do not reflect the most recent improvements in early detection or treatment.

The same Facts & Figures document also states that five-year relative survival is also lower among women diagnosed with breast cancer before the age of 40 (yay…. me).   “This may be due to tumors diagnosed at younger ages being more aggressive and/or less responsive to treatment.”  You can’t make a blanket statement about a disease that is so complex.  Cancer doesn’t work that way, and breast cancer certainly does not work that way.  Breast cancer is not just one disease – it’s many.

4.) How dare anyone, especially a healthcare system provider, imply, insinuate or just outright state that those with metastatic disease weren’t proactive in their health or didn’t do all that they can to prevent a metastatic breast cancer diagnosis.   

An estimated 6% to 10% are diagnosed stage IV as their initial diagnosis (source).  What does that mean?  The remaining percentage were diagnosed with breast cancer (stage 0 through III) at some point prior to a metastatic recurrence.  Believe me, they were getting routine screenings (such as mammograms, MRIs and/or PET scans) from their oncologists or other healthcare provider.   After their initial diagnosis, those with estrogen (ER) + breast cancer take some form of hormone suppression medication (such as Tamoxifen, Arimidex and Zoladex).

Lisa B. Adams, who died in March 2015 from metastatic breast cancer, did absolutely everything to reduce her risk of a breast cancer recurrence after she was diagnosed with stage II breast cancer in December 2006.  She wrote on her website she had the following done: double mastectomy, chemotherapy (4 rounds of Adriamycin and Cytoxan two weeks apart followed by 4 rounds of Taxol two weeks apart), Zoladex injections to combat her ER+, PR+ breast cancer and later had a salpingo-oophorectomy (removal of my Fallopian tubes and ovaries) in December 2008.   She received a metastatic breast cancer diagnosis in 2012.

She caught it early!  She.  Caught.  It.  Early.   Many women (and men, of course) caught their breast cancer early, and later died of the disease, and that number is not 1 percent.

Just because someone has been diagnosed with stage IV breast cancer, it certainly does not mean that they did not do everything to prevent such a diagnosis.  Some tumors are more aggressive than others, and can be fast-growing.  Inflammatory breast cancer does not present with a lump.  It is quite possible to have a clean mammogram and then three months later, have a later stage breast cancer diagnosis.  To say otherwise, is downright offensive to those with stage IV breast cancer.

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Excela Health isn’t alone in this ever-present pink-washing cycle, perpetuating myth after myth.  However, given that they are an actual healthcare system, then they should be held to a higher standard.  I would love to think that the hospital I’m going to for my healthcare isn’t producing commercials with such garbage like this.  Breast cancer is horrible enough without adding myths and falsehoods on top of it.  How hard is it to tell the truth?

 

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Ignorance is not Bliss

Look at this gem I came across Facebook awhile ago courtesy of Live Love Fruit, and I came the closest I have ever to that elusive rage stroke.  (It’ll happen, my friends.  It.  Will.  Happen.)

Natural Cancer Treatments

One of the many infuriating things about this graphic, disguised as health advice, is the fact that cancer isn’t just one disease.  My breast cancer isn’t the same as the skin cancer that my dad had a handful of years ago.  Hell, my breast cancer isn’t even like my friend N’s breast cancer (estrogen positive versus Her-2 positive).  When these healthy living proselytizers start sticking their heads into serious, life and death, topics they know nothing about, that’s when my blood pressure wants to reach meteoric heights.

(Also, if you learn to love, you’ll prevent cancer?  Seriously, what the actual fuck?  So if you’re shooting figurative rainbows out your eyes and pooping bouquet of roses, you’ll  prevent cancer?  Oi.  The stupid is strong with this one.)

Cancer, according to the National Cancer Institute, is defined as: “a term used for abnormal cells divide without control and are able to invade other tissues.  Cancer cells can be spread to other parts of the body through the blood and lymph systems.  Cancer is not just one disease but many diseases. There are more than 100 different types of cancer. Most cancers are named for the organ or type of cell in which they start – for example, cancer that begins in the colon is called colon cancer; cancer that begins in melanocytes of the skin is called melanoma.”

When I see graphics like this one, my first thought: what cancer are we talking about, ye ole wise Internet oncologists?  Hmm, are we talking about carcinomas, sarcomas, leukemia, lymphoma and myeloma, or central nervous system cancers?  Tell me, lady who juices and who believes Dr. Mercola is the best thing to happen to the Internet since cat videos, what cancer are you talking about?  While we are at it, please show me all your diplomas from all the medical schools you attended.

I did a quick search for natural treatments to see just how effective they are.  Here’s an abstract for a study entitled: “Alternative Therapy Used as Primary Treatment for Breast Cancer Negatively Impacts Outcomes.”  Another study: “Effect of complementary and alternative medicine on the survival and health-related quality of life among terminally ill cancer patients: a prospective cohort study.”  There are more studies out there, and this should go without saying for anyone diagnosed with cancer: discuss health plans with your team of doctors and for the love of pete, don’t take advice from people on the Internet.

I am not against alternative treatments in general.  Not at all.  I am against alternative treatments being used in place of  the standard and tried-and-true treatments.  I have heard and read that yoga, acupuncture, things of that nature, have helped loads in dealing with symptoms from treatment.  I wholeheartedly believe those who are sick and want to try different ways to lessen their pain should try to find whatever works, and I hope you are successful.

The other main issue I take with the above graphic is the use of  “prevention.”  You can’t prevent cancer.  You know what you can do, though?  You can  reduce your risk of certain cancers.  When these Internet oncologists (who, I presume, received their Internet degree after successfully completing the course: “I read one article, and now I’m an expert”) throw around the word prevent, they perpetuate the false notion that if you just follow the Healthy Living Rules, you’ll never be sick.

A very gifted blogger, Stacey, explained exactly why the distinction of “prevention vs. risk reduction vs. screening” needs to be made in this fantastic CoffeeMommy blog post:

Why is the terminology distinction important? Three reason bubble to the top for me:

Continued Diligence: Individuals must remain diligent in personal and professional screening even when they “do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.

Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.

Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

 

Actors who are in the best shapes of their lives are diagnosed with cancer and die.  Athletes get cancer.  Never-Smokers get lung cancer and die.  Vegetarians also get cancer.    Oftentimes biology and/or environmental factors are too big of obstacles for a healthy lifestyle to shield you from anything bad, and you can get sick.  You cannot prevent cancer.  You can reduce your risk.   I am sorry to burst any bubble, but bad things can happen to good people, including healthy people.

Oftentimes you see these graphics, like the one above, being shared and posted by those who have never had cancer or faced any medical hardship (as a result of that, they seem to think they have the human body all figured out).  Frankly, I think it’s irresponsible and downright dangerous to be advocating for a “natural cancer treatment” when it’s not YOUR life at stake.  People have said to me, “Man, I don’t know if I could do chemo if I had cancer.  That just seems really drastic, all that poison.”

santana

My response: “Oh yeah, total poison.  Nothing good or easy about it, but man, when the doctor told me I had breast cancer, I couldn’t get hooked up to that IV quick enough.”  Let’s make a deal, internet oncologists.  If YOU come down with cancer, then you should try the natural cancer treatments, and report on how that worked out for you.  In the meantime, I’m going to listen to those in the medical field who actually do know what they are talking about.

You also see a lot of this line of thinking in social media land after you have become a sickie:

To the folks who subscribe to this paranoid Big Brother attitude, I applaud you for the privilege of not ever having been sick and needing medicine to actually stay alive or to function.  I’m not exaggerating either – needing real medicine, and not some essential oil or some fruit that people in South America supposedly do instead of chemo, to stay alive.  It must be nice.  If it wasn’t for big Pharma, I’d either have advanced disease or I’d be dead.  Who knows?  I wouldn’t be living a No Evidence of Disease life right now, and I certainly wouldn’t have run a half marathon not even a month ago.  If this makes me a so-called Big Pharma pawn or whatever it is that these theorists think I am, so be it.  I know I’ll rest easy tonight.