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.
Mammograms Matter
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.
Radiating Confidence
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).
Comments on this entry are closed.
And kudos to you for sharing.
My mother survived breast cancer and got involved with a couple of support groups.
As at one point it went into remission, they kept a careful eye on her in case it came back.
While she she has some not so fun problems from the chemo, she doesn’t have 100% feeling in her feet. There was an unusual side effect. She is no longer allergic to orange juice.
It does take a great deal of strength and hopefully other have as good of a support network as my mother did through her recovery.
Thank you, Miss Jeanne! I cannot agree more with everything you’ve said.
My mother was diagnosed with DCIS – had the lumpectomy and had a couple of lymph nodes removed, and radiation. Because she was a retired RN, she knew the value of annual mammograms and lovingly nagged at us to get it done annually. (Sadly, there are several women on her side of the family who had been diagnosed with Breast Cancer, so we are very, very careful to get our screenings done annually).
She was one of the few with recurring DCIS – it was always caught early and the lumpectomy was done on an outpatient basis. She referred the third recurrence as “an inconvenience” since she had been planning on a trip to Italy. She got both of them – the third lumpectomy and the trip – done and went on with her life. I truly believe her positive mental attitude played a part in all of this – she never let it get her down for long, and always came back swinging for the fence. She refused to let it define her, and considered her cancer as a chronic condition to be dealt with as needed rather than a death sentence. She also got the gamut of “well meaning” people and their advice based on pseudo science. They received a “thank you for your concern” with her patented raised eyebrow.
So, yes, ladies (and gentlemen) – get that screening done. I know it’s uncomfortable. I know the thoughts of “what if” that run through your minds. Make it a part of your life. I call mine “The Annual Mashing ‘O the Mamms” and treat myself to a lovely lunch afterwards.
Please, please – take Miss Jeanne’s advice.
What a fantastic idea — a lovely lunch afterwards should be just what the doctor ordered! And Miss Jeanne… Hear! Hear!
My mother passed away nearly 20 years ago from breast cancer. Nor do I wish to blame the victim, but she knew something was wrong, chose to be passive, and it overtook her. A girlfriend vigourously fought her disease and is now 10-years cancer-free.
I get regular mammograms and pap tests. No woman likes getting either but it must be done. I am seeing a lot of Facebook posters refuting mammograms (similar to the way some people oppose vaccinating their children). Information — the right information — is crucial. Thank you, Miss Jeanne, for spreading the good (read: right) news.
I was in high risk and at 35 my OB/GYN scheduled appointment about mammogram, aka “Smash-O-Gram” and I came ready to go get stuck in the machine. I didn’t have to change into gown which I thought odd. Instead he’s at his little exam desk and starts with a patented first sentence about I’m in a risk group and we needed to talk about a mammogram. “You mean you’re not doing it today?” was my comment. Total jaw dropping shock on his side. I apparently was the first patient he’d had in 20-odd years that he didn’t have to convince about this. Yes I knew I was high risk and I thought they were doing it today. With relief he closed the folder and scheduled it. I showed with a can of Pam and a Spatula, the nurses got a kick out of it. It is you are going to be handled and being clamped in is NO joy, and you are not going ANYWHERE. And they wanted the alt set of shots. So do it all again. … so far so good. As I got older it’s yearly and a lot of my friends, I have done the convince. They’ve never had one, and I’m an old pro and YES it’s not fun, YES it’s needed, and YES you get over it really fast. I line my bra with some cotton batting, and take some aspirin and I’m off-touch-limits for 2-3 days after. I’ve had a lot worse. IF you DON’T do it, you won’t know. Best to know. DO IT! I call them smash-o-grams and always will. Nice food isn’t as important as just doing. (I usually use it to get to have a guilt free long leisurely NAP afterwards)
Give’m H*** Miss Jeanne!
Ygraine, I am in awe that your mom had 3 lumpectomies and had such a great perspective. I haven’t walked that road yet of needing more than one biopsy or having more than one occurrence of BC so I love hearing of other women tackling these bumps in the road of life with such panache.
Jeanne–
Your advice is spot-on. What is with our culture that we have to be so gloom-and-doom and full of worthless “advice?”
My mother had breast cancer at about age 38. Radical mastectomies were the norm at that time. She survived with no re-occurrence. And, yes, I get a mamo every year.
Thank you so much for sharing this, Jeanne! I had breast cancer (invasive globular carcinoma) five years ago; should be pronounced in remission later this year or early next year. Can’t wait!
I too got a plethora of unsolicited and somewhat questionable advice when I was diagnosed. There is no history of breast cancer in my family to my knowledge, but then due to weird circumstances I can’t go back any further than my maternal grandmother, so who knows? I’ve always believed that stress contributed to it, but there’s no way to know. All I know or care about is that it was caught early (mammogram and sonogram–the mammogram didn’t show it but the ultrasound sure did), I went through the mastectomy and chemo, including an allergic reaction to Taxotere which resulted in second-degree burns on my hands and feet and the loss of all my fingernails and toenails, lost my sense of taste, lost 60 pounds (fortunately or unfortunately, it all came back), and managed to bounce back spectacularly. I’m currently finishing up reconstruction (that’s a long story).
My family and friends have been remarkably supportive through all of this, but never once did I let cancer define me. I have no plans to be a “victim” of anything if I can help it. And with apologies to well-meaning friends, I also have no plans to eat kale anytime soon. 🙂 Hang in there!
As the good friend of someone very recently diagnosed with DCIS, Thank You Thank You Thank You Admin for everything you said. She told me the same thing about forums, and I’m sure if not already happening, she can look forward to all the “experts” letting her know what kind of miracle cure is out there for her!
As someone with an autoimmune disease married to a person with Type I (juvenile) diabetes, I can concur that the amateur advisors are out there in full force for every disease. They can drive you crazy. I am currently looking for a way to get sonograms I can afford– my insurance only pays for mammograms, which tell my doctor nothing, because I have very dense breast tissue and the results are unreadable, the curse of being a very small-busted woman, I suppose. I also don’t like the radiation that comes with mammograms. Any time I can find a way to avoid it, I do.
I have seen in my own community many women who have survived breast cancer, and some men. It’s doable. However, I choose not to automatically assign “quack” status to every alternative method, though, since some of the ideas have actually been shown to be helpful. I understand that many alternative “cures” are pure scam, but I also personally know people who were killed, nearly killed or at least not helped at all by conventional cancer treatments, too, so I choose to take a careful, objective look at all options.
My husband chose radiation for his cancer, but now regrets it after enduring the side effects, some of which continue over a year later. Did radiation save his life? Maybe, but we’ll never know for sure. For now, he is eating an “anti-cancer” diet and taking turmeric every day. Will that help? Maybe, maybe not. His oncologist, however, approves of his diet and supplement. As my own doctor said, “Yeah, everyone knows now that turmeric helps your body fight cancer.” That doesn’t mean we need every well-meaning Joe in the street to come up and start touting which diet, which meds, which doctor and which supplements he should choose. We’ll make that decision ourselves, thank you.
Alternative medicine that works becomes medicine. If there is no credible clinical studies to substantiate the claims of alternative medicine, it is still quackery. And currently none of the popular alternative treatments for cancer have been shown to be effective. Cancer patients who choose alternative medicine are at greater risk of dying from cancer than those who receive conventional treatment. https://sciencebasedmedicine.org/alternative-medicine-kills-cancer-patients/
I’m fine with complementary medicine which does not replace surgery, chemo and radiation but comes along side of conventional medicine as a supplement. However the alternative medicine crowd is anti-doctor, anti-science and fosters fear and distrust.
That’s why I take a careful look at all options. People shouting “cure” and “don’t trust your doctor” tend to turn me off. I also have to note, however, that in my own family’s experience, some oncologists were quite hostile to even just complimentary medicine, such as increasing helpful supplements or choosing a diet high in helpful foods, and dismissed it all as foolishness. That mistrust of methods goes both ways at times.
My mother had breast cancer, my uncle had kidney cancer, my husband had prostate cancer, I’ve had skin cancer, a cousin had leukemia, my sister-in-law had bone cancer, my niece had uterine cancer and a dear friend had brain cancer. We absolutely look at the studies and we research claims, which includes digging out the facts about conventional medicine’s claims of success as well as others’. None of us yet has opted for coffee enemas or mountains of pills.
Here we have a gov’t that says to get a mammogram every two years and the national cancer agency that says to do it every year. They constantly argue about it. In fact, there are lots of calls to quit routine screening of women altogether, that the mammograms don’t improve survival rate much if at all. That is all due to the controversy about why breast cancer survival rates have been increasing; the general consensus seems to be that it’s mainly due to finding lumps so small and non-invasive that, in the past, would not have been found or treated and would not have led to mortality. Now that we do find and treat them they become part of the statistic, watering down the mortality numbers automatically. I still do get my Squish-‘n-Scream, just not yearly.
I know about twice as many women who’ve had non-recurrent breast cancer as women who have died from breast cancer, so my reality is that it is quite a deadly disease a lot of the time. I also know many women who have/had lung cancer but I don’t feel as threatened by that, since I’ve never been a smoker. I think it’s the randomness of breast cancer that can be so upsetting.
The screening mammogram isn’t too bad but I can’t tolerate the diagnostic one, so if I had to have one of those every year then it might affect my actually going for testing. The ultrasound is lovely, though, all dim lights and quiet, with warm gel and soothing touch. It’s too bad it’s not the diagnostic gold standard!
Among the women I know with higher stages of breast cancer, they more often chose mastectomies vs. lumpectomies, even when neither showed a better outcome than the other. I think it was because they were given the choice, whereas for much smaller/less invasive tumours the only choice offered may have been lumpectomy. The women who had the mastectomies were thrilled to see their breasts gone, and most of us around them have expressed minor pangs of jealousy at the thought of finally being free of large breasts. Those who had the mastectomies say it’s the best choice, ever, to have both breasts removed. I know that’s what I’ve said for a very long time – if the screening ever found a lump I would push long and hard to get both breasts removed. It would be such a relief. So, perhaps that is what drives most of the statistics behind women freely choosing mastectomy vs. lumpectomy?
And there is very little public knowledge of breast cancer rates among men. Men are never admonished to check their own breasts or to take those lumps seriously. They may not get breast cancer as often as women but I’ve been told, by health professionals, that when they do it’s far more likely to be deadly, since they have so little breast tissue for the cancer to spread in before it metastasizes elsewhere in the body.
Thank you, Miss Jeanne, for this blog post and the info in it. It helps a lot to have level heads wading into the topic, to provide some counter to the hysteria that is so prevalent online and in the media.
In my 58 years and countless thousands of women I’ve known, I only know of three who died of breast cancer. One was 45 years ago when mammography did not exist. There is a considerable number of female friends who had breast cancer and are still alive years later so I’ve learned to ask whether women are having mammograms and whether they chose to treat their cancer with non-conventional methods, both of which factor into survival rates. One of the three who died refused surgery, chemo and radiation to treat her cancer preferring to use supplements and diet alone as her treatment. She died within 2 years of diagnosis.
The women I knew who died from breast cancer did fight it tooth and nail. It just was their bad luck to not be successful in the treatment. I don’t know if mammograms were a regular screening tool for some of them but I do know they were commonly available at least 20 years ago, so I am assuming some of the women did go for regular screening. They weren’t focussing on alternative treatments until the doctors gave them no other hope. Of course, those non-medical treatments did absolutely nothing for them.
Dee, please be aware that non-smokers get lung cancer too, although much, much less than smokers do. My cousin’s wife just died of lung cancer. Neither of them smoked, ever, and smoking was never allowed in their home. She didn’t grow up in a smoker’s home. She did not work outside the home, so a smoky office is not the cause, either. They were stumped when she was diagnosed, but her doctor said it’s not unheard of for non-smokers to get lung cancer.
JD – I know that non-smokers get lung cancer too, but in those cases it can be easy to find the connection regardless. I have never smoked but, as I’m in my 50s, I spent my childhood and early adulthood surrounded by cigarette smoke. It was unavoidable. I would not be surprised if I got lung cancer due to that exposure. But breast cancer, other than those with clear genetic risks, seems to be so random, that’s why it inspires such fear. There isn’t a lot one can do to prevent it developing in the first place.
About 12 percent of women in the general population will develop breast cancer sometime during their lives. By contrast, according to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by age 70 years. So while their risk is higher, having a BRCA gene mutation is not a slam dunk surety of getting cancer.
And research has conclusively shown that one can radically reduce the risk of breast cancer with moderate exercise 4-5 times a week.
I concur with practically all of your advice. I think it’s wonderful that you’re doing well. I do recommend breastcancer.org, however, as a reputable site from which to get info. My oncologist recommended it to me and it was started by a radiation oncologist. There are different sections for newbies, those waiting for diagnosis, those in treatment, and those who are done with treatment.
Survivor since 2003 – HR+, Her2neu +, Stage 2B. Participated in the herceptin trial for early BC which had fabulous results. Unfortunately know a lady who passed due to BC not because she was negligent or anything, but because she was triple negative (typical hormone suppression drugs don’t help these folks, nor does herceptin).
The forums I refer to in the post are from breastcancer.org. The sub forum, “DCIS plus HER2-positive Microinvasion” is a hot mess of misinformation largely due to how many women are posting in that forum whose cancer is NOT DCIS with a HER2+ microinvasion. Either they do not understand their diagnosis or they are posting to a forum that is not applicable to their type of cancer simply to have yet another venue to talk about their cancer. There are far too many posts telling of chemo, metastases, Herceptin use, and it’s only when you scrutinize their diagnosis data that you find their invasive cancer is 1 cm, 3 cm, 1.5 cm…none of which is classified as “microinvasive. Their story is NOT the story of the women who have DCIS with a true microinvasion of HER2+ invasive cancer. When you finally wade through all the posts from women who do not have a microinvasion to find the few who truly do, you realize that their story is one of hope, good news and exceptional prognoses. But I wonder how many women reading that forum are diligent in weeding out the wrong stories and are, instead, influenced to be fearful about aspects of treatment when there is no need to be.
Regarding triple positive cancer, the forums, in general, present information on it as if it is a very bad cancer when, in reality, the triple negative ones is the most threatening precisely as you stated, limited treatment options. One of my doctors told me she had patients who would give their right arm to have my triple positive cancer….a far different perspective than one finds on the forums.
And it was the breastcancer.org forums that had a few trolls who faked their disease, posted in ways that caused terror.
I just caution people to be careful in forums, use your critical thinking skills to discern well.
Wow! That was a thoughtful, informative, down-to-earth perspective on breast cancer which was a joy to read. I am very happy for your steady recovery and I am sure your attitude (naturally, coupled with doctor’s orders) acted as a great booster. You have reminded me it’s high time i scheduled my mammography, so your words have indeed had (at least) one very positive impact!
Thank you.
A wonderful post you did there. I had my annual mammogram this past spring. My first time with one of the newer 3D machines. I felt it was less pressure on the breast and the pictures it produces are so vivid! Our local news stations do a great job of getting the word out this time of year about getting your mammogram. They have also made a point this year of mentioning that men can get breast cancer as well!
My maternal grandmother was diagnosed with breast cancer back in the 1950s, when there were few treatment options. Thankfully, her doctor found the cancer early and she lived for close to 30 years post treatment. The best advice Jeanne gave is to NOT panic over everything you read online. Do your research, and bring any issues or questions to your doctors!
Thank you for sharing. I have been wondering how you are doing. Please know that your readers do care about you.
Thank you for this post, and congratulations on your successful cancer journey!
I have a couple of quick things to add about mammograms. I’m 41 (too young for screening) and a couple of months ago I found a lump in my breast, so I went to my GP to ask about it. Apparently there is quite a long list of non-serious things that a boob lump could be, which I found rather comforting! Because of how the lump was ‘behaving’ though it was determined that I should have a mammogram just to be on the safe side, so off I went. I am very well endowed and I expected it to hurt because I’d been told it did. But – it really didn’t! Honestly it was (for me at least) much more physically comfortable than a smear. And my results were clear. So I would like to echo you and encourage women to have mammograms where possible; it’s not a huge deal, but these tests save lives.
This was amazing and informative. Thank you so much for sharing your story.
Thanks for the info and best wishes for a speedy and full recovery!
Thank you for posting this. My mother is almost the exact same place (barely pushed into Stage 1, waiting to hear her treatment options), and both of us are listening to her doctors and ONLY her doctors. It is a frightening, helpless feeling to see my mother endure what she has so far, but she’s certain her care is top-rate.
May you and she both be well and provide me with advice for years to come.
I’m sorry, but I had to stop reading this halfway through when it became clear you weren’t going to give balanced information. Ultimately mammograms are controversial for a reason. They lead to an awful lot of false positives, expose women to additional radiation, increase anxiety, and can result in invasive testing that’s ultimately unnecessary. They can detect cancer early, as you’ve seen. But honestly, they’re not saving that many lives. Yes, cancer survival rates went up when they came onto the scene. But they also increased the rates of diagnosis in cancers that would have been found later during a manual exam and successfully treated. They also result in women being diagnosed with a cancer that is so slow growing a woman would have been dead from old age before it was ever found. This is just an example of people skewing data to fit their agenda.
I’m a firm believer in vaccines. I’m all for antibiotics when warranted (actually got my flu shot this week ago and I’m on antibiotics now for an infection). Preventative medicine is a great thing that definitely saves lives, but that doesn’t mean some of it isn’t superfluous. If I were to have a suspicious lump found, I’d go straight for a biopsy and save myself the stress and hassle of something that’s not going to change the result of the biopsy that will be ordered next. I mean, you had cancer found at stage 0 so of course it’s treatable. But would this cancer have grown, spread, and ultimately killed you before detection in a manual self exam? Obviously I don’t want you (or anyone) dead. But self exams are a woman’s best weapon against breast cancer, not mammograms. But as with anything, we should be advocating for people to discuss what the best options for preventative medicine with their doctors. If breast cancer runs in your family than a mammogram might be a good choice. But for someone like me with absolutely no family history (on either side) it’s going to be a waste. Skin checks on the other hand are a bigger deal! But that doesn’t mean everyone I meet should be directed to a dermatologist.
Too bad you did not read further down the article because the research data stated in the post on rates of recurrence/metastatic risk is definitive and conclusive. The larger the tumor size, the greater the odds that the cancer has spread to distant body parts. The earlier the stage of cancer, the better your survival is. You are repeating a meme based on outdated data. By the time a cancer tumor can be manually felt, the odds are incredibly high that it has already spread to the regional lymph nodes or worse.
What you are referring to is the detection of cancer at the in situ stage/stage 0 and, yes, 80% of all biopsies done in cases of suspected ductal carcinoma in situ turn out to not be cancer. But 20% are and the only way it can caught at this early stage is to do that biopsy. And yes, it is true that some DCIS is so slow growing that the patient could likely die of other causes but the way that type of DCIS is diagnosed is through an oncotype test or a DNA test called a Mammaprint, both of which needs a tissue sample obtained through a biopsy. And the way they target the biopsy needle is via a mammagram. You cannot know the treatment options for your type of cancer until there is a mammagram and biopsy. What you appear to be advocating is that women dispense with a mammagram altogether and instead have a blind faith hoping that if they do get cancer, it’s not an aggressive type. For women who do have an aggressive subtype of DCIS, the mammagram and biopsy will be a life saver. For those who do not, they have the peace of mind that came at the expense of having a mammagram and biopsy. If I had not had a mammagram, my aggressive subtype of DCIS would not have been diagnosed until it was large enough to be felt by my fingers thus putting me in far greater risk of metastases and undoubtedly needing chemo. No thanks, I’ll take the “hardship” of having an annual mammagram and biopsy any day.
Among the women also being treated for breast cancer that I encountered at the medical center, I had the lowest stage of cancer. The others were staged at stages 2 and 3 with metastases to the lymph nodes in the arm pits and neck. Trust me when I say that they looked upon me with envy, wishing their cancer was like mine. I began to not reveal my staging when asked because seeing the desperate longing in their eyes was heartbreaking.
Just read some of the blogs of women with metastatic stage 4 breast cancer who admit to not having had any mammagrams prior to their diagnosis. Everyone of them has written their regret or wish to turn back the clock.
I was diagnosed with breast cancer at 29. I remember being furiously angry in the middle of chemo (was stage 1 but I was young so it was recommended) when I saw a the gorgeous celebrity spokesperson for the local breast cancer society on TV talking about breast cancer awareness month. And there I was going through it with one breast and no hair.
Also, I’m normally someone who needs to know everything there is to know about the current situation. When I had the cancer I became the proverbial ostrich with my head in the sand. Everything I read online was scary, so I decided not to read it. I made friends with some other women who were having treatment at the same time as me. Some of them died but most did not.
I guess what I’m saying is everyone experiences it differently. There is no right or wrong way to have cancer. Well actually, the right way is the way that works for you. Forget the rest.
I hope you are recovering well Jeanne
I’ve had 3 primary cancers in the past 8 years and yet breast cancer is the one with the most “baggage”,i.e. media coverage, purposeful exploitation of misinformation to fear monger and raise money, contentious disagreements on treatment options, rude people who have never had cancer yet think they are entitled to tell me how to treat mine. So much baggage.
And the irony is that, of the three cancers I’ve had, breast cancer is the least dangerous with the best prognosis but you’d never think that if one believes the scary media stories and online baggage.
All right, you have convinced me, i’ll go get one. I love your straight forward, no drama advice. Thank you.
Excellent post! (I’m the cousin whose best friend died of breast cancer after refusing to get mammograms). Her “excuses” were that the mammograms were too uncomfortable and that there was no history of cancer in her family. I have to admit I was sketchy about doing mine annually until proof slapped me right in the face. In the five years since she passed, two of my five mammograms have come up as “suspicious” and have required additional examination. Thankfully the first one revealed a small mass that was not cancerous and the second was done only because the level of calcium had increased a certain percentage. What I found interesting was that when the doctor came to talk to me about the elevated calcium, he basically was leaving it up to me as to whether or not I would have the biopsy. I interrupted him and said “sign me up – let’s do it now.”
Since I’m already rambling – my first experience in needing an additional examination was one of fear, anticipation and obsessing. I got the call as I was pulling into work, having just been at the appointment. I said that I’d be right back (foolishly thinking that they would do the ultrasound right then). I was told that I needed to get with my Doctor, who would write another script, and then to call the schedulers to make my appointment. My Doctor immediately provided the necessary paperwork but, when I called to make the appointment, I was told the earliest one was THREE WEEKS away! I had to sit there wondering if I would be that person who would end up saying “I never thought I would get breast cancer.” After everything was over and done with I contacted the imaging place, which is part of our Hospital, and told them that they needed to “fix” this (short version). That women waiting for follow-ups needed to be seen as soon as possible. I’m happy to report that the second time I needed a follow-up, I was immediately directed to their new “mammogram nursing representative”, who spoke with me, told me what was going to happen, and set up my appointment for the next day!
All that being said, to echo my cousin, Jeanne, GET YOUR MAMMOGRAMS!
I know this is a late comment, but this has bugged me for a while. I had what I thought was a bad canker sore show up 2 years ago that turned out to be Stage IV oral cancer. It’s been rough – upper right maxtillectomy, chemo, radiation, and now reconstruction. However, trust me when I say I do not take it for granted how fortunate I’ve been to have had a dentist who knew the warning signs, and to have access to top notch insurance, health care, family, friends, and an understanding employer.
What I find difficult is how defensive I get when disclosing my diagnosis. When others ask how I’m doing, or if I need to disclose I had oral cancer (for example, to a health care professional), I always immediately feel like I’m required to say “no, I’m not, and never have been, a smoker or around second hand smoke.” I’ve never seen other cancers get upturned eyebrows, but there’s something about oral cancer that seems to come with the assumption I deserved it for some bad life choices or behavior. Who knows – maybe it IS karma, but if so, that’s between God/Universe/Fate and myself.
Am I being weird or too sensitive about this?
My biggest pet peeve with alternative medicine is the core belief that you caused your cancer due to bad life choices, often bad diet, and that you can cure yourself with good life choices like a change in diet. The evil of this perspective shows itself when a person has a recurrence of the cancer or dies of cancer because then the person’s commitment to the treatment quackery is questioned and often concluded to be not 100% compliant. The victim blaming is considerable. It’s a heavy burden to place on people.
I had not visited your site in a while and I’m catching on. THANK YOU FOR THIS POST! I had breast cancer 9 years ago and, knock on wood, I am fine today. There is so much disinformation and frankly, I did not feel like I was part of the “group”. I was young, it was agressive but non-invasive and non-hormone related (sorry if this is not the proper English terminology, it’s my second language), no family history. I didn’t fit into any of the “categories” represented in the media. I was not “dramatic” enough. Further, breast cancer awareness is of course very important but I feel at times that it has become more of a business. It’s sad and worrying.