As regular readers know, I was diagnosed with breast cancer this past May and had taken a sabbatical from posting during surgery recovery. As this particular cancer journey has progressed, I have become increasingly aware of how much misinformation and stereotypes there are regarding breast cancer and the significant role social media and the media in general plays in hyping up fear. I see the fear flicker across women’s faces when I tell them of my diagnosis or hear the actual gasps and condolences they offer me. The words “breast cancer” strikes terror in the hearts of many. When I inform someone of my cancer diagnosis, I find myself needing to immediately qualify it by adding that it was caught very early and my prognosis is “exceptional”.
“Cancer has a language problem–not just in the way we speak about it, as a war that drafts soldiers who never signed up for it, who do battle and win, or do battle and lose. There’s also the problem of the word itself. A 57-year-old woman with low-grade DCIS that will almost certainly never become invasive hears the same word as the 34-year-old woman who has metastatic malignancies that will kill her. That’s confusing to patients conditioned to treat every cancer diagnosis as an emergency, in a world that still reacts to cancer as though it’s the beginning of the end and in a culture where we don’t talk about death until we have to.” Siobhan O’Connor, Time Magazine
One factor that has contributed to this “cancer language problem” is the media saturation of stories of women with stage 3 and stage 4 breast cancer such as actress Shannon Doherty which leaves the impression that the typical breast cancer patient is in dire straits. During Breast Cancer Awareness Month, also known as “Pinktober”, the media highlights cancer patient stories, mostly focusing on the worst case scenarios. While I am not famous on the scale of a celebrity actress, my attorney claims I am a semi-public figure, and therefore I wanted to put my story out there as an example of the many tens of thousands of women who are diagnosed with breast cancer, get treatment, recover and move on with their lives leaving cancer behind them. There are many thousands more of us than the celebrity cancer victims.
The other significant factor in promoting this cancer language problem is the abundance of memes presented as fact that are, at best, well-intentioned misinformation, and at worst, purposely using fear as the catalyst for fundraising. More on this later.
So, are the Shannon Dohertys really the only face of breast cancer? I don’t think so. This year, an estimated 252,710 women in the United States will be diagnosed with invasive breast cancer, and an additional 63,410 women will be diagnosed with in situ breast cancer. If the cancer is located only in the breast (an early stage of cancer), the 5-year relative survival rate of people with breast cancer is 99%. Sixty-one percent (61%) of cases are diagnosed at this stage. That’s nearly 190,000 women who will hear the terrifying news that they have breast cancer yet their prognosis is outstanding. The truly amazing news is that overall breast cancer death rates have decreased 36% from 1989 to 2012, after slowly increasing (0.4% per year) since 1975 and continues to decrease by about 1% every year.
And what is powering the increase in survival rates? Mammography. A recent study by researchers from the University of Michigan explored the question of whether mammography makes a difference in survival rates. The researchers found that since mammography was introduced, there has been an overall 9% decrease in invasive breast cancer diagnoses . This decrease has been offset by an increase in diagnoses of DCIS (ductal carcinoma in situ), which isn’t invasive. This means mammograms are finding more breast cancers early, when they may be less complicated to treat. This conclusion was supported by a study conducted by a team of researchers at the Erasmus University Medical Center in the Netherlands who studied every breast cancer case registered in the country from 1999-2012 —nearly 174,000 cases. Before 2006, the breast cancer survival rate was 91 percent. After 2006, it was 96 percent, they reported in the British Medical Journal. Women survived longer after 2006 because the tumors were smaller when they were removed and less likely to have spread, they reported. “Diagnosis of breast cancer at an early tumor stage remains vital,” they concluded. Mammography has helped reduce breast cancer mortality in the U.S. by nearly 40% since 1990.
My final staging was pT1Mic meaning I had what is called a “microinvasion” of invasive breast cancer measuring half a millimeter amid a larger segment of Ductal Carcinoma In Situ (DCIS) cancer. If I had had pure DCIS, I would have been staged at Stage 0 but that tiny speck of invasive cancer put me “barely out of Stage 0” as my surgeon said. The detection of so small a cancer is due to 3D digital mammography and the fact that I have had an annual mammogram for years which formed a baseline image that made detecting the tiny difference easier. Actress Christina Applegate champions the cause of women getting annual mammograms after her own diagnosis of breast cancer which was also discovered at a very early stage during a routine mammogram.
Delving into the online stories of women with metastatic breast cancer, I found too many instances of a lack of annual mammograms prior to their diagnosis of metastatic cancer. Shannon Doherty did not have any breast cancer screening tests for the four years prior to her diagnosis. Digging further, I found a few authors of popular breast cancer blogs whose cancer was metastatic who had also not availed themselves of annual mammograms. This may sound like victim blaming but, for me, I have nothing but sad pity for their plight. My cousin’s best friend died of metastatic breast cancer one month after diagnosis after spending years refusing to have a mammogram. Even for women 50+, skipping a mammogram every other year could miss up to 30% of cancers. The absence of breast cancer screenings due to it being an inconvenience, or that it hurts, or fear of finding cancer or a belief that mammograms are unnecessary are all personal life choices women have made but I wonder to what extent regret factors in when those choices backfire. It’s pointless, and indeed cruel, to cast blame on past decisions that cannot be changed in the here and now. There are women who still receive a diagnosis of advanced stage breast cancer despite doing everything right and having had an annual mammogram because breast cancer is a capricious disease. The reality is that an annual mammogram is a tool that is far more likely to detect cancer at an early stage and it’s sad when women decline the opportunity to use a tool that could prevent a lot of heart ache, fear and pain. GET A MAMMOGRAM, LADIES!
Dr. Google Is Probably Not Your Friend
The most difficult aspect of receiving an initial diagnosis of breast cancer is the waiting for all the pieces of the puzzle to fall into place so that you know exactly what kind of cancer you have, what the staging is and what treatment options are. For a data junkie like me, this waiting was excruciating. I wanted information NOW and sometimes looked to Dr. Google for answers. The problem with Dr. Google is that the stories of other victims are not *my* story and it was too tempting to borrow trouble, and in some cases, borrowing grief, from other people’s experiences. I think that is the danger of media stories of actresses fighting for their lives, i.e. the temptation is strong to think their story will be your cancer story. Julia-Louis Dreyfus’ recent press release announcing her diagnosis of breast cancer frustrates me because she declined to reveal the severity of the cancer and as expected, the media reported it with all the drama it could muster about her “battle against cancer” thus promoting fear. But Dreyfus’ cancer story may not be your cancer story.
Online forums populated by breast cancer victims could have the potential to be helpful but I found them to be unproductive in large part because of the self-selecting nature of those who frequently post. One long time poster in a popular breast cancer web site community forum made the observation several years ago that the people most likely to post to the forums are 1.) Newly diagnosed people who are rather hyped up and poorly informed; 2) People with emotional issues related to being diagnosed with cancer ; 3) Trolls who fake breast cancer and whose stories on the forum terrify women; and 4.) A few “angels”, i.e. people who are credible, post constructively. It took time to discern who the “angels” were amidst the chaos of emotions and factual inaccuracies people reported and I only found three people I could trust. And yes, there are evil trolls who thrill at spreading terror in a forum by fabricating the worst possible case. Googling “breast cancer scam” reveals that this is a not uncommon fraud women have done to financially exploit the compassionate.
In fact, no one I personally knew in real life with breast cancer had ever read an online forum nor ever posted to an online forum about their breast cancer. I searched but I could never find a blog dedicated to having a stage 0 or stage 1 cancer diagnosis. The reality is that many tens of thousands of women are diagnosed with an early stage of breast cancer, get treatment that is rather typical and uneventful, and come through it just fine to then move on with their lives not looking backward and having never told their tales online. Patients like me do not invest considerable time writing a dedicated blog week after week, for years, about their experiences with cancer.
Forums are a self selecting population of patients who seek out this medium to express themselves, often presenting the worst cases that are not typical. There were several times I’d get frightened by something I read in a forum, ask one of my oncology team doctors about it only to be told, “In 20 years of practice I’ve never seen that/only saw it once. And stop reading those forums, Jeanne!”. One particular example was breast cancer radiation therapy threads on forums wherein posters described all kinds of problems they had from radiation. You’d think, reading the threads, that nearly all women undergoing radiation therapy have these heinous problems but the reality was much different. None of my acquaintances who had breast cancer reported those problems and my own experience was rather mundane and easy despite my anxiety that had been fueled by reading too many breast cancer forum posts. In a study published online in CANCER, a peer-reviewed journal of the American Cancer Society, most patients agreed that their initial negative impressions about radiation were unfounded. The study revealed that 93 percent of breast conservation patients and 81 percent of mastectomy patients agreed with the statement “If future patients knew the real truth about radiation therapy, they would be less scared about treatment.”
Because my breast cancer had not moved into the lymph nodes, I did not need chemotherapy but I did choose to undergo adjuvant radiation therapy that has been documented with numerous science-based research to reduce the risk of recurrence by 50%. Body position while going through breast cancer radiation treatment matters. Nearly all women undergo breast radiation therapy lying on their back. I was offered the opportunity to do radiation lying on my stomach in a prone position. Recent studies show that this new approach reduces the amount of lung and heart tissue affected by radiation therapy by 90 percent and I eagerly choose to do radiation in that prone position. I had the expected “sunburn”, parts of my skin peeled like a sunburn but I had no fatigue and no issues with lungs. Those horror stories of bad radiation were not my cancer story nor, it seems, for the majority of patients.
Are 30% Of All Breast Cancer Patients Destined To Die?
The most damaging piece of misinformation that I routinely saw bandied about on blogs, forums, news articles and even a few research articles was the alleged data fact that “30 -40% of women with breast cancer have a recurrence which typically leads to death”. Most metastatic breast cancer support groups use this statistic, often repeatedly stated in their videos, to lobby for increasing research funding into metastatic breast cancer.
The problem? There is no science-based evidence of this statistic being true.
Blogger Ann Silberman, who has Stage 4 metastatic breast cancer, spent 7 months researching the origin of the “30% metastatic recurrence rate” meme. Her conclusion was that there was no citation nor study which substantiated the statistic. You can read her detailed research HERE. Nick Mulcahy, in an August 2015 article titled “The Mystery of a Common Breast Cancer Statistic” for Medscape.com, concurred with Ann Silberman stating, “A commonly cited breast cancer statistic — that 30% of all early-stage breast cancers will progress, despite treatment, to deadly metastatic disease — appears to have no strong contemporary evidence to back it up.”
I don’t think it helps our cause as advocates for women with metastatic cancer to repeat misinformation. I also think that certain groups (K*ough*omen) deliberately misuse statistics for their own purposes, stats that were never meant to be used the way they are and which are now misunderstood by everybody. Ann Silberman
I can’t begin to tell you how much anxiety this statistic caused me when I first encountered it. My very sweet, compassionate and exceptionally experienced radiation oncologist shot that one down quickly and then proceeded to tell me a story. “I fell asleep the other night watching a PBS show about singing baboons (it was actually gibbons, Dr. J) in a jungle in Pakistan. I think you need to watch more singing monkeys than reading stuff online.” In other words, get on with your life, Jeanne, it’s going to be OK. And Dr. J was right, the rate of recurrence in 10 years is between 2 to 15 % depending on tumor size and what subtype (hormone receptor status and HER2) the cancer is, according to recent research. My cancer was triple positive, i.e. estrogen and progesterone receptor positive and HER2+, which the data shows having a 2.2% recurrence rate in 5 years which is the time interval during which most recurrences are most likely to happen. But also because my tumor was so tiny, my risk of it metastasizing was “vanishing miniscule” according to three of my oncology doctors. An extensive study of 10,000 women that was recently published in early 2017 indicated that women older than 50 years who are diagnosed with DCIS (stage 0) are more likely to be alive 10 years after their diagnosis than women in the general population. Another study of over 100,000 women diagnosed with DCIS had a low rate of breast cancer death (3.3%) at 20 years among women in the study.
There are cancer victims who do have a 30%+ rate of recurrence but they have an aggressive and rare type of cancer known as Inflammatory Breast Cancer or were diagnosed at Stage 3B. Remember, 61% of all women diagnosed each year with breast cancer are diagnosed with an early stage cancer and their prognosis will be “excellent”. Even more women are diagnosed with Stage 2 and early stage 3 and still their prognosis is good. The scary numbers of “30-40% recurrence leading to death” is not their cancer story.
Whether reading a forum, or a news article, or some social media thread, you should always ascertain what the cancer victim’s “story” is, i.e. what stage, tumor size, and type of cancer it is, and what treatments they had. It’s fairly easy to get scared reading these stories until you realize that their cancer is far more advanced/larger/spread to lymph nodes or organs than yours or that they opted to not treat their cancer with conventional medicine whereas you did.
Taking My Lumps And Leaving It
One thing I was completely unprepared for was the strong advocacy of some women for total mastectomy as opposed to a breast conserving lumpectomy which I believe is largely fueled by the news media presenting stories of celebrities opting for radical mastectomies as if this was the only option or the belief that removing the breast completely eliminates all potential for breast cancer. My oncology surgeon’s recommendation of a lumpectomy is based on 15 years of conclusive research data that the survival rates for total mastectomy versus lumpectomy with adjuvant radiation therapy were identical. There is no survival advantage to a radical mastectomy for my type of cancer. I did not expect to have to defend my decision to follow my surgeon’s experienced opinion for what was best for me but it appears I am not the only person to have experienced this peer pressure. One should presume that a woman has counseled with her surgeon as to the options and then made a well-informed choice of treatment for herself rather than presuming she’s ignorant and you need to be the one who enlightens her.
It’s Science-Based Medicine All The Way For the Win
This past May, just weeks before I would be diagnosed with breast cancer, I published a blog post entitled “Etiquette of Cancer: Keep Your Quack Cures To Yourself” in which I detailed the ridiculous and offensive pressure I had received during a prior experience with cancer to cure it with unproven, even dangerous remedies. Hoo, boy, breast cancer brought out the worst of these people. I was advised to eat nano colloidal silver to cure my cancer; to not trust my doctors at all; that my cancer was due to my body being acidic and therefore I needed to eat alkaline foods; and the worst were the people who believed my cancer was caused by a bad diet and therefore I could cure it with diet alone. The latter strongly emphasizes that “you caused your cancer, you can cure it”. There is an alarming and disheartening trend to convince breast cancer patients to NOT have surgery but to cure it with any number of utterly quack remedies. I got sent URLs to videos of women claiming to have cured their breast cancer with coffee enemas, rubbing urine on their breasts, drinking 6 veggie smoothies a day and consuming a mini mountain of supplements daily. Umm, no, thanks. Given that recent studies document that cancer patients who choose alternative medicine are 50% more likely to die from their cancer than those who chose conventional treatment, I consider the promotion of unproven treatments on people in a vulnerable state to be deceptive and evil. Mind your own business and don’t offer any opinions or suggestions about treatment unless we ask you for them.
One author of a blog dedicated to her battle against metastatic breast cancer died of the disease. That alone can cause the anxiety levels in me to shoot up…that is until I went searching for the details of her cancer and how she treated it. To do so requires looking at the “About” link or searching through very early blog posts. I found that this late author has chosen to treat her high grade, aggressive breast cancer with alternative medicine. Her cancer story is definitely not my cancer story at all.
So, the purpose of this post was to, hopefully, to change the “cancer language problem”, mitigate some of the misinformation and stereotypes about breast cancer and to give people hope that a diagnosis of breast cancer, especially caught early, is not an automatic death sentence. If you are one of the tens of thousands of women diagnosed with an early stage of breast cancer (as defined as being limited to your breast) each year, you are in the majority (at least 61%) of women diagnosed and your prognosis for a good, long life is very good. The celebrity cancer stories are not your cancer story.
Get an annual mammogram.
Hire the best doctors you can find (I love mine!)
Trust your oncology team of doctors if you do get cancer.
Be careful how much you read online and engage your critical thinking skills if something online scares you.
Wearing pink is optional (I don’t).