Are my breast cancer and I on the wrong side of statistics, or just caught in the confusing and potentially devastating conflict between medical societies about when women should start breast-cancer screening?
One morning more than a year ago, it didn’t seem like either. As both of my kids cuddled in bed with my husband and me, I started the conversation I’d been dreading.
“Remember when I went to the doctor a few weeks ago?” I reminded my children. “Well, it turns out they found a bump in my boob. If it stays, it won’t be good for me. So we have to take it out.”
“What is it?” my 7-year-old son asked.
Because his grandfather had recently died, I was afraid to use the word “cancer.” But I also knew he was smart enough to figure it out. So I took a deep breath and continued, “Bumps like this are called cancer.”
His eyes got wide. “It’s not what Grandpa had,” I added quickly. “I have a different kind of cancer, and I’m going to be fine.”
At the time, I believed I was telling him the truth.
I had discovered the lump three weeks earlier during a random breast self-exam. I was 45 years old with a very low risk of breast cancer. The lump was so small I wasn’t even sure it warranted attention. But it also felt the kind of “different” I had been warned about when I was taught to do self-exams at age 16 — slightly harder and less likely to move around than the rest of my breast tissue .
In the spirit of due diligence, I went to my local breast care clinic to get the lump checked. I wasn’t concerned enough to bring my husband or a friend.
I met with a physician assistant. She began by doing a clinical breast exam, but couldn’t find the lump until I pointed it out to her. That led to an ultrasound, which led to a mammogram — my first — which led to a radiologist being concerned enough to perform a biopsy that afternoon.
Through it all, I remained calm. Due diligence, I kept thinking, that’s all this is. Never in my wildest dreams did I consider that I could actually have breast cancer.
But I could, and did, despite my kale salads, low-risk genes, and overall good health.
It started out as the curable kind, the kind where, after a grueling treatment regimen, you come out a “survivor.”
But to the surprise of my medical team, post-surgical scans revealed that my 3-centimeter tumor, which some of my doctors estimate had been developing for at least five years, had decided to kick up its heels and travel beyond its original location. This landed me in the far more terrifying and uncertain journey of metastatic breast cancer, otherwise known as stage 4 breast cancer. This is the incurable stage, the scary stage, the stage in which the odds of surviving beyond five years plummet.
I am the mother of two small children. Their well-being is intricately linked to my own. It is nothing short of devastating that I could very well die before they finish elementary school. Yet I am somehow learning to accept this fate.
I have learned that life is as much about showing up for each other’s suffering as it is celebrating each other’s accomplishments. I have learned that the robust health I enjoyed for 45 wonderful years was a privilege. I have accepted cancer as one of my great teachers, and I am finding my way down this unexpected path.
I have had a much harder time accepting that I was not screened for breast cancer before it was too late. Not because I couldn’t be bothered, was too anxious, or didn’t have health insurance, but because the guidelines for screening women in my age range are one hot mess of a controversy, and I fell through the cracks.
Two years before my diagnosis, when I was 43 years old, I asked my doctor if I should get a mammogram. I had a vague understanding that breast cancer screening protocols were in flux, but I wanted to be sure. My risk profile for the disease was very low. I was nursing my infant daughter, and I really did not want to stick my breasts in a vice grip (it’s not really that bad, but that’s how I was imagining it). My doctor told me that if I didn’t want a mammogram, I didn’t need to get one.
Her counsel was based on a set of widely used guidelines at the time that say having a mammogram is an “individual” decision for women under 50 at average risk for breast cancer. She had no reason to believe I was at risk, and I had no reason to believe I should question her judgement.
What I didn’t know, at the time, was that there are multiple and conflicting breast cancer screening guidelines for women between the ages of 40 to 49.
The confusion began in 2009 when the U.S. Preventive Services Task Force upended longstanding breast-cancer screening protocols by recommending that women with an average risk of the disease start having mammograms every other year at age 50, instead of at age 40. They cited concerns about false positives, anxiety, unnecessary treatment, and overdiagnosis. Their new guidelines were met with tremendous controversy and have not been universally adopted.
In 2015, the American Cancer Society changed its longstanding guidelines, recommending that women of average risk start having mammograms at 45, instead of 40.
The American College of Radiology, an organization of physicians on the front line of diagnosing cancer, among other things, has never wavered from its recommendation that women get their first mammogram at age 40.
This table says it all. There is almost no agreement between the seven major institutions that establish breast cancer screening protocols, especially for women in their 40s. Women and doctors depend on the recommendations these groups make. But which one should we use?
Each organization backs its recommendation with data. What I and many other women have trouble understanding is how essentially the same data generate such different recommendations.
In my case, early screening would almost certainly have detected my hormone-driven cancer early, before it was able to spread. My treatment would have been relatively straightforward (though no treatment for cancer is really “straightforward”). I would have been in the group of women with breast cancer in which the majority go on to live long and healthy lives, as opposed to being part of the group in which most do not.
But there are also stories of women who either do not benefit from early screening or who get put through treatment hell for cancers that never would have become life-threatening.
Who is on the wrong side of statistics?
Last year, in the United States alone, approximately 250,000 women were diagnosed with invasive breast cancer. Approximately 36,000 of them were between the ages of 40 and 49.
Smart, dedicated people are deeply engaged in this issue. But while they compare data sets, grapple with the statistical significance of lives like mine, and churn out conflicting guidelines, far too many women are left confused and misinformed about what is best for our health and long-term survival.
Leda Dederich is a mother, educator, and patient advocate.
I have been a mammography techologist for 30 years. When I began my career it wasn’t uncommon to have a couple patients per week with a palpable breast cancer the size of a golf ball. I’ve seen some that already had open wounds where the cancer had made its way to the skin surface. After years of teaching women about breast self exam and mammography screening guidelines, luckily it is very rare that I see patients at this stage of the disease. When the new guidelines were released, it was infuriating! We’ve worked so hard to educate women about early detection and the survival rate. I’ve never understood the argument about “anxiety for callbacks and unnecessary or benign biopsies”. I would say that most women that I see consider those results a blessing! As far as the frequency of screening and radiation dosage, why are we not debating the frequency and radiation dosage of dental x-rays which probably cost your insurance company just as much and use much more radiation than a mammogram, and…cavities usually won’t kill you!
I am a medical professional, now retired. Admitting what I am about to say is
anecdotal, it seems cancers of all lineages are striking lower age groups than ever before! In keeping with insurance companies efforts to dismiss this and to
continue telling physicians how to practice medicine, there definitely an effort to put-off screening tests as long as possible. The US has a history of ignoring prevention directives, and more currently favors drugs to cure, rather than to “prevent”. It is time to produce vaccines to prevent the emergence of cancers due to oncoviruses. The HERPES group, long known to be culprits in a good number of cancers, must be defeated! One of them in particular, Epstein-barr should be number one on the list. Sadly, the role of virus hardly ever makes mainstream news. Merck made the first anti-virus cancer vaccine (HPV] and has recently added 2 more strains to it from among the 40 or so “associated” with cancers. It has been said Merck only did this initially after a failed drug they made was pulled from the market, having caused several deaths. It is time to revisit anti-viral cancer vaccines. Drug companies need to make vaccines instead of charging billions to make drugs for “the cure”. We know what the “bottom line” is, don’t we?
My wife is among that group as well, having been diagnosed at age 43. She didn’t have a mammogram before that because I was aware of the newer recommendations and didn’the push her to do it. I am a family practice physician who has now decided that the best course of action is to err on the side of starting mammograms at age 40. If we had done that, we would have been saved a lot of grief.
That this unfortunate women developed stage 4 disease does NOT mean that the guideline was “wrong.” Every year some women in their 30’s develop stage 4 disease. Does that mean that the guidelines should be changed to recommend commencing mammographic screening at age 30? Of course not. Guidelines represent statistically derived recommendations for populations. Their validity can only be determined by population outcomes. Such factors as anxiety from unnecessary biopsies and overdiagnosis are very difficult to quantify. While it is confusing to patients, it is not surprising that different groups look at the same data and come to different conclusions. Adding to the confusion for patients (who must make individual choices) is the sad but unalterable fact that as this case illustrates, statistics do not apply to individuals but only to large groups.
How can you compare the anxiety from a negative biopsy to decreasing the chance of death?
I would also urge you to take a hard look at the data that’s being used to criticize screening. For example: Dr Gilbert Welch of Dartmouth published a series of papers in the New England Journal that has been the basis for many of the primary care recommendations around screening. Dr. Welch left Dartmouth last fall after they convicted him of academic fraud. However, the NEJM has not chosen to retract his papers.
Helen Sandven’s comments are very misleading. She asks “how can you compare the anxiety from a negative biopsy to decreasing mortality?” but the comment specifically mentioned the harms not only of anxiety (which is real) but of overdiagnosis — and harms from overdiagnosis include the many harms of breast cancer treatment, surgeries, chemo, radiation, which can yes themselves majorly diminish quality of life even if there are no unusual complications or side effects – which themselves can occasionally cause death.
As well she maligns Gilbert Welch. He was yes – and i have my questions about that – accused and found guilty of PLAGIARISM related to a key chart in an article he published – ONE ARTICLE. He left rather than admit guilt since he maintains he is not guilty. But in any case he was NOT convicted of “academic fraud” or of misrepresenting data, but you make it sound like he was.
There can be debate on the merits of mammograms but your comments are not fair in acknowledging the point of view of the other side. Meanwhile, as an almost 70 year old woman I would never ignore a breast cancer symptom but I understand both sides and am very very comfortable with declining screening mammography, and hope my friends and relatives do the same, although that is up to them.
Forgot to mention, my breast cancer was detected early by mammogram. Had I skipped it, I would have been stage 4! I consider myself one lucky woman.
(sorry about the typos in my previous post)
Carol,
I’d be very interested in the sources behind fat producing estrogen. If that is the case, my guess would be the fats are rancid seed oil fats, not saturated and certainly not strictly beef saturated fats. I’m not talking low carb where you get to use olive oils and the like. Im talking zero carb where the main source of food is beef. And that’s the problem with a lot of these “keto” studies on cancer. They’re using all kinds of fats. You can have a bottle of kraft ranch full of nastiness and still technically be keto. So I would still say to try a zero carb diet even for only a few months just to see.
Important information from Dr. Peter Gotzsche of Cochrane
https://www.youtube.com/watch?v=paCAc9p_GsQ&feature=youtu.be
https://www.amazon.com/Mammography-Screening-Truth-Lies-Controversy/dp/1846195853/ref=sr_1_fkmr1_2?ie=UTF8&qid=1539883322&sr=8-2-fkmr1&keywords=Peter%20gotzsche%20mammogram
Dr. Peter Gotzsche was expelled from The Cochrane Collaboration in September 2018. The primary reason wass that fellow Cochrane members thought he has been biased in his evaluation of data. This means that the Collaboration believed that he interpreted studies in a way that fit his preconceived opinions rather than honoring scientific method. This is the first time in 25 years The Cochrane Collaboration felt strongly enough about a member’s misconduct that they felt obligated to expel him.
Thank you for this info. I am a leukemia cancer survivor. I get screened regularly for everything but breasts. Now at 35, I think I need that too. Especially after what the tech above wrote.
Can you do me, a mom of 3 kids age 6 and under, a personal favor? As a former cancer survivor, I have researched my butt off trying to find the best way to eat to starve cancer. I truly believe that eating zero carb is the best chance. Fatty meat. No kale salads. Beef is the best kind but all kinds will work in a pinch. Please just research it for your kids sake.
Sources include zerocarbzen.com (guy on there healed stage 4 brain tumor), also many carnivore groups on Facebook now, myzerocarblife website by 12 plus year ZC’er Kelly Hogan. There are others too. Just do the research for yourself. Doctors will eyeroll and say no diet prevents cancer all while taking big pharmas money to endorse their pills. Do the research and come to a decision like I did. That’s all I ask. God bless. I hope and pray you survive this.
Hi Ashley: In order for diet to be effective in suppressing cancer recurrence, one needs to know what the cancer “likes”. I am a breast cancer survivor (so far). My tumor likes entrogen, for example, so I take a drug that suppresses estrogen production. I am menopausal but some estrogen is produced. Also FAT produces estrogen. The low carb diet would be effective in losing weignt. In heneral, lower carb diets are easier because weight loss is fairly rapid and the goal is to keep total daily carbs below 30 grams. Occasionally, a treat like a cookie, or piece of cake won’t matter. Some Ovarian cancers have an affinity for estrogen as well.
When calculating carbs in aythi g, the fiber content can be subtracted from the carb value.
I am a Mammography Technologist. Let everyone you know that we as technologist still believe 35 is the best age for your baseline mammogram. Then regular mammograms 40 and beyond. Just check with your insurance company to see that they pay for a mammogram at 35.
To the people who believe that mammograms are dangerous and not needed they need to educate themselved on why Mammograms are needed. Usually if you can feel the cancer you have gone pass the stage of early detection. I believe the new guidelines have signed death warrants for many younge women. The saying early detection is just that simple. The technology today is so far advanced than before. 3D mammography is saving more women and men. I am still amazed at all the women who haven’t had a mammogram or annual mammograms. This technology was built to save lives. Everyone complains that the compresssion hurts. Yes it’s uncomfortable but it only takes about 7 minutes to finish 4 images. 7 minutes to save your life. We breast feed children. That was more painful to me but you do it because it gives your child a better start for a healthy life. Some woman do it for 3 days. Some do it for 24 months. A mammogram compression part of the exam lasts about 4 mins the other 3 is used up during positioning of your breasts. Please take the time to save your own lives everyone. Early detection is a life saved!!!!
Thanks for sharing a powerful message that has gotten lost in the confusion of disparate guidelines. You do NOT have to have family history to be at risk, AND the greatest number of lives saved comes when screening starts at age 40. Over 75% of women diagnosed with the disease have no high risk factors. Screening based on history alone is NOT the answer.
Thank you again for sharing your story – it may be the push that gets another to go get screened. My heartfelt wishes for strength, resiliency and peace as you battle your cancer.
Hindsight is 20/20, but I think you really don’t know whether having a mammogram would have been better for you or not. You don’t really know when the tumor started. You really aren’t sure if an earlier diagnosis a) would have occurred at all; or b) would have benefitted you if it did. It might have. It also might not have.
And even if perhaps (and it is only perhaps) in your case it may have been better if you had been screened earlier, screening also creates false positives and over-diagnoses where people are treated that don’t benefit. There are real and actual harms involved with everyone’s getting screening mammograms.
I personally and very comfortably choose not to get screening mammograms.
The important moral of your story is that once you did feel a lump, you didn’t ignore anything and hurried to investigate. Definitely any symptom should be taken seriously, including little-known symptoms like “peau d’orange.” That’s something we can agree on; but intelligent people can totally differ on whether screening programs are a good idea, especially at your age.
About 30 years ago the wife of a colleague found a small lump in her breast. I don’t know what sort of workup she had but she was told that because she was thirty and Asian (Japanese) it probably wasn’t cancer. She persisted in getting a mammogram and it was positive. She had surgery and was on antiestrogen therapy. She survived. During my practice in Cambodia over the past 15 years I saw two women aged 39 with advanced breast cancer and a friend of mine in Indonesia died at 47 of it. Screening was not available for them and because of cultural factors they didn’t seek treatment in time. As a Family Practitioner I always advised my patients to do self examination and we had instructional materials for them in the office. One thing people should realize: Screening tests are done on healthy asymptomatic patients; once a patient has symptoms the test becomes a diagnostic test. There is controversy about screening mammograms being done on asymptomatic, healthy patients. There should be no controversy about doing a mammogram, regardless of age or ethnic background or parity who comes in with a lump or has one detected on physical exam.