You're Not Too Young to Think About Breast Cancer — 6% of Diagnoses Are Under 40
With every October comes the predictable onslaught of pink everything: bracelets, perfume, athleisure, tacky T-shirts, and even $1,750 pumps, all in the name of breast cancer awareness and fundraising. And while broadcasting our support of the one in eight women who will face breast cancer in their lifetimes and the 2,620 new cases of invasive breast cancer that are projected to be diagnosed in men this year is important, we've become inured to the narrative that breast cancer is a disease that only affects women in middle age and beyond. The reality is that six percent of breast cancer patients who were diagnosed in 2019 were under 40, and nearly 12,000 women younger than 40 were diagnosed with invasive breast cancer in 2019, according to the latest data from the American Cancer Society.
That reality is at odds with what we've been taught about breast cancer and what the CDC recommends: while most women are told to conduct breast self-exams from puberty, people don't need to even start talking with their doctor about getting mammograms until they are 40, and it's not until age 50 that you need to get them every two years. It's believed that you're more likely to have breast cancer if you have a close family history — in fact, breast cancer screening should begin at 25 only if you have the genetic mutation of the BRCA1 or BRCA2 genes, according to the Cleveland Clinic, or 10 years earlier than when the first affected relative in your family was diagnosed.
While all this may be true, it ignores the painful reality that more than 250,000 people living with breast cancer in the US today were diagnosed before age 40, according to Young Survival Coalition. A 2016 article in the Journal of Clinical Oncology found that women age 40 or younger were 30 percent more likely to die from breast cancer compared to women who were diagnosed between the ages of 51 to 60, and breast cancer is the leading cause of cancer-related deaths in women under 40. The incidence of metastatic breast cancer — cancer that has spread to other areas of the body (brain, liver, or bones, for example), resulting in a lower survival rate — is rising in that population. About 800 women younger than 40 are diagnosed with metastatic breast cancer each year compared to about 250 per year in 1976.
Who Is at Risk of Being Diagnosed With Breast Cancer?
"We do know that women under the age of 40 who are diagnosed with breast cancer are more likely to have a genetic predisposition," Elizabeth Comen, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center who specializes in breast cancer, told POPSUGAR. "But that being said, the vast majority of women that are diagnosed with breast cancer have no family history. And that includes women under the age of 40." In fact, only about five to 10 percent of breast cancer cases are thought to be hereditary, meaning they result directly from gene mutations passed on from a parent, according to the American Cancer Society, and about 15 percent of women with breast cancer have a family member with the disease.
"[Breast cancer] didn't run in my genes at all. No one in my family had breast cancer."
While there are certain risk factors that increase your likelihood of developing breast cancer, according to the CDC — getting your period before age 12; having dense breasts; a genetic mutation, such as the BRCA1 and BRCA2 genes; or a family history of breast or ovarian cancer — the sad reality is that for many women diagnosed with breast cancer under 40, they didn't have a family history at all.
"[Breast cancer] didn't run in my genes at all. No one in my family had breast cancer," Tyra Francis, 27, told POPSUGAR. Francis, who works as a substitute public school teacher and lives in New York City, was diagnosed when she was 23 despite not having a family history of the disease. She knew something was wrong when she noticed a bloody discharge from her nipple, which looked bruised. After a few days, she went to the emergency room, where she was told it didn't look serious, sent home with bacitracin ointment, and instructed to follow up with her primary-care physician.
When Francis went to her primary-care doctor, the doctor mentioned that it could be cancer and decided to run some tests. "It was a shock to me because it made no sense," Francis said. "[Cancer] didn't run in my family, it wasn't in my genes, and she asked me a couple of follow-up questions and everything was no." Francis's doctor referred her to a breast specialist who thought her swollen breast, which had started to change colors, could be infected. "The last thing she thought was cancer," in part because Francis was so young. As her symptoms got worse, her breast specialist decided to do a biopsy and diagnosed her with stage 1 ductal carcinoma; stage 1 means the tumor is smaller than two centimeters in diameter and the cancer has not spread beyond the breast.
Francis decided to get a second opinion. Her new oncologist ran some more tests and revealed the cancer was actually stage 3 inflammatory breast cancer, about a month after she first noticed the bloody discharge. Stage 3 means the cancer has spread beyond the immediate area of the tumor — all inflammatory breast cancers start as stage 3 since they involve the skin — but if the cancer spreads outside the breast to distant organs, it's considered stage 4. Even though her mammogram results came back negative, the only way to diagnose inflammatory breast cancer is through a biopsy.
"When I found out, my heart literally dropped," she said. "I didn't know what to do; I didn't know how to wrap my head around it. I just felt like my world was crashing down." She had recently started a new job that she ended up having to quit because she was missing days of work. Her doctors urged her to act fast, so she ended up undergoing chemotherapy, during which she had a horrible allergic reaction; her veins turned black, she broke out in hives, and she couldn't breathe. Francis was ready to give up treatment, but with the encouragement of her friends and family, she decided to keep going. She had a double mastectomy — although the cancer was only in one breast, there was a five percent chance it could return in the other breast — immediate reconstructive surgery, and radiation.
Three years after her diagnosis, Francis is cancer-free. She's the youngest of three siblings, so her immediate family, including her mom, need to get screened for cancer now, too. Francis still has to see her radiation oncologist and breast specialist and get regular screenings, and her goal is to finish her master's degree and pursue a career in mental health counseling. "I know that I'm going to come across people who have been diagnosed with breast cancer, or who are going through any type of diagnosis in life, and I want to be able to motivate them and give them words of encouragement to keep them pushing and allowing them to know that everything is going to be OK," she said. "Don't let anything break you; it can either make you or break you."
Francis's resilience is inspiring, and it's a common thread I noticed in the women I talked to for this article. Although Francis was diagnosed at stage 3, it's not uncommon for women under 40 to be diagnosed with metastatic breast cancer — or stage 4 — where the cancer has spread to other parts of your body: lymph nodes, liver, brain, or bones, for example. Doctors may not immediately think a patient has breast cancer if they are younger than 40 since it's so rare, like in Francis's case, and the cancer may go undiagnosed and progress to later stages.
What It's Like to Live With Metastatic Breast Cancer
Morgan Mitchell, now 31, who is a senior account executive at an advertising technology firm, was diagnosed with breast cancer in 2017 when she was 28. She had dense breast tissue, so she had always known that a self-exam wasn't sufficient. "Ever since I was maybe 10 or 12 when I would go to the doctor, she would tell me, 'You have really dense breast tissue. If you dig around, you're going to think that you're sick and you're not,'" Mitchell told POPSUGAR. She instead relied on the breast exams her doctor would conduct every year during an annual visit. However, during a trip to Yosemite with her now-husband, Bob O'Dell, Mitchell noticed a walnut-size lump in her left breast one morning. It alarmed her, but she decided to enjoy the day hiking and scenery; in fact, O'Dell proposed to her that day. They were excited and celebrated their engagement, but Mitchell, still concerned about the lump, scheduled an appointment with a specialist she could see as soon as she returned to New York City.
After an initial exam, doctors told Mitchell the lump could be cancer, so they conducted more rigorous testing: a mammogram, sonogram, and more in-depth core biopsies. They found that not only did she have cancer, but it had also spread to her lymph nodes. It's protocol that once cancer is found in lymph nodes, the patient is ordered to get a PET scan. After this scan, Mitchell was diagnosed with stage 4 — the breast cancer had metastasized to her liver. "That week felt like a year in itself," she said, noting that the speed with which she was tested and diagnosed is rare for breast cancer patients since she had a close friend who worked in healthcare. For some, it can take weeks or longer.
Like Francis, Mitchell didn't know of a family history of breast cancer. However, after she was diagnosed, her immediate family did genetic testing, and they found out her dad has the BRCA gene. In fact, she learned of a great aunt on her dad's side who died from breast cancer before menopause. As far as other risk factors, Mitchell was active and ate a healthy diet; she ran the New York City Marathon three weeks before she got her diagnosis.
Lauren Hufnal, who is an agency development director at Microsoft, had a similar experience. She was diagnosed in 2013 at age 38. She noticed a lump in her breast when she was breastfeeding her son (he is her first and only child), and doctors initially dismissed it as a clogged milk duct — not uncommon with breastfeeding. After six months with no improvement in symptoms, Hufnal saw a breast specialist and got a number of tests done, including a mammogram, sonogram, and biopsy. She was initially diagnosed at stage 2, which means the cancer is growing but still contained in the breast or only extended to nearby lymph nodes. But after a second opinion at another hospital, she got a proper diagnosis: stage 4. The cancer had spread to her bones.
After going through chemotherapy, Hufnal had a relapse in 2019 and had a partial mastectomy. And like Mitchell and Francis, she had no family history of breast cancer. "No cancer in my family whatsoever," she told POPSUGAR. "I did all the genetic testing postdiagnosis; no BRCA2, no nothing." Hufnal also lived an active, healthy lifestyle. "[Cancer] wasn't even on my radar," she said. "I was like, 'I'm totally healthy. I eat kale salads every day.'"
Since she has estrogen-positive, HER2-positive metastatic breast cancer, Mitchell's treatments are different from someone who is diagnosed at an earlier stage. Unlike stages 1-3, there is no cure for stage 4 breast cancer; Mitchell and Hufnal will be getting treatments for the rest of their lives. Mitchell is treated with KADCYLA every three weeks, which is a targeted chemo infusion to treat the HER2 mutation in her liver. She also gets a monthly hormonal injection and has doctor appointments every three weeks. Hufnal, who has estrogen- and progesterone-positive breast cancer, is on a maintenance mode of treatment that consists of multiple daily oral medication, monthly bone cancer injection, monthly hormonal injection, and ongoing blood work and scans. She said she will be on this course of treatment for as long as it keeps working. According to the American Cancer Society, the five-year survival rate after diagnosis for people who have breast cancer that spreads to other parts of the body is 27 percent.
"With metastatic breast cancer, my oncology team urged me to think of my treatment in this analogy: you want each chapter, or treatment type, to be very long," Mitchell said. "Breast cancer is no longer the death sentence it used to be. I am very fortunate to have some receptors in my cancer be positive so we can target them."
"When you're walking around [with] stage four, you just look totally normal . . . we're technically not survivors; we're thrivers."
"The goals of stage 4 are to extend survival, if possible, and palliate symptoms that might arise from the cancer growing, and provide the best quality of life," explained Paula Klein, MD, medical breast oncologist at Mount Sinai Health System, who is Mitchell's oncologist. For Mitchell and Hufnal, that means having a team of doctors who will support them and make them feel cared for for the long haul. "You're going to be with these people for forever," Hufnal said. "So you've got to like them. You've got to have a good team in place."
One important decision young people who are diagnosed with breast cancer have to make is how they want to proceed with possible fertility treatments in the hopes of having kids down the road, whether that's because their estrogen production needs to be shut down or their ovaries removed to treat estrogen-positive cancer, or how their treatments will affect their fertility and delay their ability to conceive. "Premenopausal women diagnosed with breast cancer should have a discussion about fertility . . . and be offered a referral to a fertility specialist," Dr. Klein explained. This could mean freezing your eggs, if you're single, or freezing an embryo with your partner.
Dr. Comen added that there are lots of tools and techniques to help patients who want to explore fertility — "I've had lots of babies in my practice," she said — but the key is not to delay. When Mitchell was diagnosed, she was told she had about a two-week window to go through with fertility before she began her cancer treatment plan. This entailed getting a dose of Letrozole to keep her estrogen production at bay since she had estrogen-positive cancer, but to maintain a level where she could go through with an egg retrieval. After two weeks of fertility treatments, Mitchell got her eggs retrieved — not many since her estrogen levels were so low, but a few — and started her cancer treatments that same day with a hormone therapy to rid her body of estrogen. Although Mitchell won't be able to carry an embryo, the hope is to have a gestational carrier carry a baby for her and her husband.
What people might misunderstand about metastatic patients, Mitchell and Hufnal both emphasized, is that you can't necessarily physically see that someone is going through cancer treatment. For earlier stages, when chemotherapy and radiation are administered, people may lose their hair or eyelashes. They may have a course of treatment for a few years and eventually be cancer-free.
"When you're walking around [with] stage four, you just look totally normal," Hufnal said. "It's not that I want people to handle me with kid gloves, but I think that people just don't realize that we're still going through it and we'll never be like, 'OK, totally fine. On to the next phase of my life.'" She added that even the distinction with the language around those living with metastatic is different from other cancer patients who may have been diagnosed at earlier stages and be cancer-free. "We're technically not survivors; we're thrivers," Hufnal explained, adding that she's not offended if someone messes up the terminology ("it's just semantics," she said).
Especially if you don't "look" sick, Mitchell said part of helping people understand what it's like to live with breast cancer is to be honest. "Your bosses, your coworkers, everybody in your life does not know what you're going through, and so helping them help you is probably one of the biggest things I'd recommend," she said. "I need to do a better job, for example, of being like, 'I need to slow down.'"
"That's the hard part," she continued. "You want the opportunity to excel at work, because to be quite candid, you have better perspective. You probably will fight harder than anybody else because you're currently battling something else, which I think is why [Hufnal] and I do excel at work."
Hufnal and Mitchell both said that while living with metastatic breast cancer is indeed stressful, they want to be treated like normal people. Sometimes that means being honest with your friends and letting them know you just want an opportunity to hang out and not think about cancer. "Can we go to brunch and can I hear about your sh*tty date you went on last night?" Mitchell said. "Because I don't want to talk about me."
I told Mitchell that as someone who has been friends with her for more than eight years — she was one of the first friends I made when I moved to New York City — I want her to know that I am always thinking about her, care about her, and want to check in and see how she's doing. But I also don't want every time we talk or hang out to be talking about cancer; I want to be a distraction and treat her like any other of my friends. "We're human, too," Mitchell said. "We want to b*tch about normal things, too, and not just talk about cancer." She added that she doesn't want to "feel like an old sick person," so having that sense of normalcy is key.
Hufnal said she had friends who would be hesitant to bring up what was going on in their lives. "Eventually, something would come up, and I was like, 'Oh my god, why didn't you tell me?' They said, 'Well, I didn't want to worry you,' or 'What you're going through is so much more serious,' and I was like, 'Oh my gosh, I'm still here for you.'"
Because Mitchell, Hufnal, and Francis fall into the rare category of cancer patients diagnosed younger than 40, Hufnal said it was hard after she was first diagnosed when she'd attend meetups of cancer patients and was often not only the youngest but also one of the only people with stage 4. One of the biggest things that helped them was finding other people they could relate to who were battling cancer in similar stages of their lives. All three are members of 5 Under 40, a nonprofit organization that provides funded medical, wellness, beauty, and educational services to women who have been diagnosed with breast cancer under the age of 40 or who have the BRCA gene mutation.
How 5 Under 40 Is Helping Breast Cancer Patients Thrive
Breast cancer survivor Jennifer Finkelstein founded 5 Under 40 in 2011. She was diagnosed with stage 2 breast cancer in 2005 at age 32, just weeks before her wedding. The organization was born out of a need to connect with other young breast cancer patients and get accurate, targeted information and resources for those who are diagnosed so young. Luckily, she was marrying a doctor and is the daughter of a world-renowned gastroenterologist, so she was able to get connected with oncologists and specialists, but she still felt alone since most breast cancer patients are older.
She was eventually introduced to another young woman who had also been diagnosed at age 32. "She literally held me by the hand and told me everything to expect," Finkelstein said. "We both were stage 2. We had the same doctors. In the weeks leading up to meeting her, I had never known anyone who had been on the other side, let alone anyone young." After her diagnosis, Finkelstein realized there was a need for other young women who are diagnosed with breast cancer to connect with each other and get information, tools, and services to manage their diagnosis.
In 2012, 5 Under 40 received 501(c)(3) status, and in 2013, it began extending funded medical, beauty, and wellness services to women in the New York and New Jersey areas. Finkelstein knew the alarming statistic that one in eight women will face breast cancer in their lifetime, and the name came after Finkelstein saw a Chinese acupuncturist after her diagnosis who taught her that five elements — wood, fire, Earth, metal, and water — show how our internal organs, systems, and structures are categorized and connected. Eight times five is 40; "it was a 'boom' moment," she said of naming the organization. Five is also a common theme in 5 Under 40's services.
"Research is later; 5 Under 40 is now."
"The organization has identified five issues that make breast cancer under 40 a significant emotional and physical challenge," she explained. "Looking at managing career growth, dating, fertility, financial hardships, and this harrowing sense of isolation, which is really what I suffered from." They help young women navigate the nuances of what it means to live with such a life-altering diagnosis, such as how to navigate their career and what to tell their employers and how to fill out health insurance claims and paperwork.
5 Under 40 funds each patient for one year — for metastatic patients like Mitchell, it's for a lifetime — and Finkelstein said each patient individually receives "thousands of dollars" in funding. And while the organization doesn't offer its members medical advice, it has a medical advisory board consisting of top experts specializing in reproduction, endocrinology, genetics, oncology, and breast surgery. They help patients get mental health counseling, get fitted for and purchase human-hair wigs if they've lost their hair, get set up with a medical tattoo artist, and utilize wellness services including personal training sessions and nutritional counseling — and those are just a few of the dozens of services 5 Under 40 provides. While many other breast cancer charities are focused on research, which Finkelstein notes is important, "we serve real women in real time," she said. "I will never knock research . . . this is different. Research is later; 5 Under 40 is now." In addition to all the funded services, 5 Under 40 hosts meetups so young women can connect with each other and have a sense of community.
As of publication of this article, 5 Under 40 now serves 605 funded recipients. As soon as 5 Under 40 gets a referral, whether that's from a teaching institute, word of mouth, or the contact form on its website, the operations manager refers the person to the peer match team for a vetting appointment. They ask patients to fill out a short application and get a sign-off from their doctor.
Since we are in the midst of the COVID-19 pandemic, large gatherings aren't a possibility. However, 5 Under 40 is still extending virtual services to members, such as mental health sessions, nutritional counseling, breathwork, yoga classes, and makeup tutorials. It is also hosting virtual meetups, which Finkelstein said women from all over the US age 18-39 are welcome to join. If you're not a member, DM 5 Under 40 on Instagram (@5Under40) for more information. On Oct. 28, it is hosting a virtual metastatic meetup with one of its mental health experts, and on Oct. 29, it's hosting a virtual panel titled "Dealing With Uncertainty, Breast Cancer Thrivers Advice," moderated by Mitchell and featuring a panel of prominent survivors and thrivers, including Hufnal.
Finkelstein said the organization is aiming to resume in-person meetups in Q3 of 2021. In the meantime, while adhering to COVID-19 safety protocols such as wearing a mask and social distancing, 5 Under 40 has been able to facilitate in-person services to a few women over the last few months including getting fitted for wigs and accompanying them to get 3D nipple tattoos.
What to Know If You've Been Diagnosed With Breast Cancer
Although getting diagnosed with breast cancer under the age of 40 is relatively rare, it is still a possibility. And while there are certain risk factors for breast cancer, sometimes a diagnosis is inevitable, even if you live a healthy lifestyle and don't have a family history of cancer.
If fertility is something you're concerned about, Dr. Comen advises patients to have that conversation with their doctor as soon as possible, especially since some doctors might rush patients to treatment without first discussing fertility. And while 5 Under 40 is a unique organization providing fully funded medical, wellness, beauty, and educational services for breast cancer patients, there are other organizations that host meetups and retreats, like Breasties and other local services you can find through cancer.org. If you don't live near a big city, there are online resources available.
All the patients I spoke to said it's important to advocate for your own health and stay in tune with your body, especially if you feel like something is wrong — sometimes a second or third opinion is necessary. To mitigate your risk, it's important to know your family history on both sides and request a mammogram if you fall into the at-risk category. Dr. Comen also emphasized that breast self-exams are important, and starting at age 20, you should do them once a month around your period. It will help you get familiar with what your breasts look and feel like so you can notice any changes; she suggests showing your ob-gyn how you do your self-exam to make sure you're doing it properly, which entails feeling under your armpit and all the way up to your clavicle.
Dr. Comen also wants patients to understand if they are diagnosed with breast cancer at a young age, they are not alone and have allies in the medical community. "We see you, we hear you, we feel for you, we bleed for you, and we want desperately to improve the treatment options and the screening techniques for you," she said, adding that there's a lot more research being done in younger people for finding new treatments and better detection techniques. "We're sensitive to the lifestyle issues and quality of life issues that may arise over time, whether it be fertility, sex life, body image, relationships, all of that goes into how we care for breast cancer patients."
"Cancer does not define who you are. Don't ever think that it's a stop sign in your life and it's going to hinder you forever."
If you do get diagnosed with breast cancer, even stage 4, Hufnal wants people to know that even though "it sucks," you can still live a normal life. "I don't feel like I'm the same person I was before; I definitely am more tired, I'm definitely more worried," she said. "I was always an anxious person, so [I'm] a touch more worried. But I can still do everything that I want to do. I can still go play tennis. I still can have full-time job, which I'm successful in. I can still travel. This is not the path you want, but I think there are still things you can do and accomplish and live."
Francis also wants breast cancer patients to know that a diagnosis does not have to derail the rest of your life. "For the ones who do get diagnosed, I want them to know that cancer does not define who you are," she said. "Don't ever think that it's a stop sign in your life and it's going to hinder you forever."
Editor's Note: At POPSUGAR, we recognize that people of many genders and identities have breasts and ovaries, not just those who are women. For this particular story, the experts we talked to and research we cited generally referred to people with breasts and ovaries as women.