Where Are Breast Cancer Screenings for Young Women?

First, a disclaimer: I’ve never done regular breast self-exams. I tried it once, twice at most, in the late ’80s or early ’90s. I brought home a little how-to tag and hung it on my bathroom door for about three weeks before I threw it away. I figured I’m more likely to notice something in the shower. (And now that I’m on the cancer watch list for my remaining breast, I get four exams a year, courtesy of twice-yearly visits with my oncologist and family doctor. So I’m good in the exam department.)

The problem with breast self-exams is that by the time you can feel something, breast cancer has gotten a pretty big head start. And if you’re young, it’s even bigger. The American Cancer Society says breast self-exams don’t work as well for young women, since their breast cancer is likely to be dense and more able to hide tumors. They discuss the pros and cons of BSEs in their guidelines for early detection.

Some groups, such as the Feel Your Boobies Foundation, which is geared to young women (and some would argue, young men), advocate BSEs. I’m not sure I can fault them for that, for the simple reason that young women seem to have no screening alternatives. You can get a genetic test for BRCA and/or a mammogram if you have a family history. But, as the American Cancer Society says, only 5 to 10 percent of breast cancer cases are hereditary.

So where does this leave young women? They’re too young for mammograms. Another screening tool coming into wider play is the MRI, but they’re recommended only for women at high risk and therefore not indicated for young women without a family history. And they’re pricey, to boot. Mine cost $4,000.  

The only option young women seem to be left with is finding a lump and treating cancer that has progressed far enough to produce one. By that time, you’re talking heavy artillery like chemo.

I know this is what health experts call anecdotal, meaning it’s based on my own observations and not scientifically sound data, but I’ve never met a woman in her 30s who was diagnosed with stage 0 breast cancer. The only ones I’ve ever met are stage III or IV. It seems to be the women my age (55) and older who are stage 0 and stage 1. And we’re the ones getting mammograms and MRIs.

I think every woman should know what’s normal for her breasts, just as she should know her entire body, and report any changes to her doctor. But BSEs seem a bit too little, too late as a screening tool. I wish I had an answer, but all I have are questions. All I know is there seems to be nothing out there for young women. Please, someone tell me I’m wrong.


11 thoughts on “Where Are Breast Cancer Screenings for Young Women?

  1. Jackie – another alternative is ultrasound, along with mammogram and MRI, however all the medical professionals will tell you that none of these methods are infallible and should be considered jointly in any evaluation of a younger woman. Easier said than done, in our for-profit health insurance world.

    My case is pretty typical of the haphazard nature of screening tools. I found something in my breast that felt weird, not an obvious lump, just weird. Original doctor claimed not to feel anything. Ultrasound came back inconclusive. New doctor, and another ultrasound and still nothing, but then I was sent for mammogram which came back suspicious. Biopsy and MRI confirmed the diagnosis of Stage IIIA cancer. I understand there is a new technology coming out now called Thermography which may help younger women with dense breast tissue, but I’m not 100% sure of the facts so will say no more.

    However there’s still the issue that Doctors are looking for risk factors when young women present. I had absolutely none of the supposed risk-factors yet turned out to have it all including the BRCA gene mutation.

    So I think the gaps in knowledge are immense when it comes to younger women. We need more research at every step of the way and BSE is certainly no holy grail as a screening tool for young women. Is it better health education at school that teaches our young women AND men to know their ENTIRE bodies and advocate for their health, without the need for cute “boobies” campaigns? Is it more research for better screening methods? Better identification of risk factors? Access to genetic testing? How we deal with results of genetic testing?

    There’s still so much that we don’t know. I’m all for empowering young women, but young men too, in being more aware of their bodies, but to base entire fundraising campaigns around a methodology that is not scientifically proven, and in a way that is so sexualized, is to me a distraction from the very real issues of the gaps in research, particularly where younger women are concerned. These kinds of campaigns don’t encourage the general public to question or even realize these knowledge gaps exist in the first place.

    Let’s empower young women and men, to know their bodies and be their own advocates, but in a way that is consistent with scientific evidence and without the need for “boobies” innuendo. But let’s also not forget the research that is still so badly needed. Where are the next generation of breast cancer activists coming from? If all we do is sit back, and pretend we’re ok with the programs that are currently on offer, then how our young people going to learn that breast cancer is still a major problem? Especially for the 45,000 people or so every year who will die from this disease.

  2. Thanks, Anna, for sharing your experience and for mentioning what I left out in terms of screenings. It is just flat-out wrong that there is so little to help younger people with cancer. I just read something on how survival rates for young people with cancer have not changed in 30 years. That’s pitiful.

  3. Hi Jackie,
    I am so thankful to have found your website and book. I am a 31 year old woman who was recently diagnosed with DCIS in my right breast. I was diagnosed after my Gyno sent me for a mammo to double check a Fibroid Anoma in my left. The surgeons were shaking their heads as they read my file, asking themselves how I found the cancer. I chose a bilateral mastectomy with reconstruct and am recovering well. I am concerned about my younger sister and friends. I know early detection saved my life. I would love to hear more on this topic.

    • Thank you, Carrie! I am glad to hear you are doing well and glad your cancer was caught early. I will share what I can find on the topic and hope others reading this will too.

  4. It’s not just women young enough for the boobie messages either. I was 41 and all of the mammos missed what turned out to be an 8 cm tumor. Without knowing any better, I figured I was fine because the mammos were clear.

  5. Katie, that’s such a good point that mammograms aren’t magic either. I’ve heard from other women who had them miss something. Mine caught my cancer before it broke out of the milk ducts but it was my first digital mammogram. I had a nurse tell me they had a huge jump in catching stuff when they switched to digital. I wonder how long it was lurking in there, because I had an awful lot of it and was told it would likely become invasive.

    Our screening options just aren’t all that great, are they?

  6. There’s also the issue of dense breasts .
    Here is how the founder of http://www.areyoudense.org explains it:

    Dense tissue appears white on a mammogram and cancer appears white – thus there is no contrast to detect the cancer (It is like looking for a polar bear in a snowstorm). I asked my physician why wasn’t I informed that I have dense breast tissue and that mammograms are limited in detecting cancer in women with dense breast tissue? The response was “it is not the standard protocol.” So I went on a quest – for research – and found that there have been 7 major studies with over 42,000 women that demonstrate that by supplementing mammograms with ultrasounds increases detection from 48% to 97% for women with dense tissue. I also learned that women with dense tissue have a 5x greater risk of getting breast cancer. They have double jeopardy – a greater risk of having cancer AND are less likely to have cancer detected by mammography alone.

    • Yes, dense breast tissue is definitely also an issue and risk factor and I have it too. I didn’t have ultrasound but I had an MRI, which the American Cancer Society now recommends for women with dense breast tissue/family history other risk factors. MRIs are pricey; mine cost $4k. My oncologist said we’re at the point with MRIs now that we were with mammograms 20 years ago in terms of cost and frequency of use. Women should be very aware of insurance companies waiting periods. Mine enforced a 10 day waiting period. My oncologist’s office was on top of that; my initial, not wonderful oncology consult tried to rush me into an MRI in less than a week. I would have been hosed. Luckily I didn’t click with that first consult and voted with my feet. Thanks for the link and the comment.

  7. Amen–that’s the million dollar question!!!!!! I felt like there was nothing watching out for me when I found my two 2.5 cm tumors at age 37.5. And I was right–there is no effective screening method that’s widely available for young women. And since bc numbers are growing fastest among this group, I can’t believe there isn’t more focus on it. I say: Mammos at 40, but something that works for younger women and those with dense breasts now!!!!

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