As if getting a breast cancer diagnosis weren’t terrifying enough, one thing that doesn’t get spoken about nearly as much as it should is the fact that treatment is incredibly expensive, often causing a financial burden for women affected by the disease. While this can certainly apply to any cancer or illness, it’s estimated that 300,000 U.S. women will be diagnosed with breast cancer in 2017. Plus, breast cancer carries the unique burden of breast reconstruction after mastectomy which, although a crucial part of emotional recovery for many women, is often an extremely costly procedure.

It’s hard to pinpoint exactly how much breast cancer treatment costs on average because there are so many variables to factor in: age, cancer stage, type of cancer, and insurance coverage. But the fact remains that “financial toxicity” due to breast cancer treatment is certainly more common than it should be. That’s why we talked to survivors, physicians, and those involved with cancer nonprofits to find out the real financial impact of a breast cancer diagnosis.

Breast Cancer’s Staggering Cost

A 2017 study published in Breast Cancer Research and Treatment found that the medical costs per year for a woman under age 45 with breast cancer were $97,486 more than for a woman in the same age group without breast cancer. For women ages 45 to 64, the extra cost was $75,737 more compared to women without breast cancer. The women in the study had insurance, so they weren’t paying all of this money out-of-pocket. But as anyone with insurance knows, there are often costs that go along with treatment, like deductibles, co-pays, out-of-network specialists, and procedures that are only covered at 70 or 80 percent of their full cost. When it comes to cancer specifically, experimental treatments, third opinions, out-of-region experts, and referrals for tests and doctor visits without the proper insurance coding are also likely not covered.

A recent survey conducted by Pink Fund, a nonprofit that provides financial assistance to patients undergoing breast cancer treatment, found that 64 percent of the breast cancer survivors they surveyed paid up to $5,000 out-of-pocket for treatment; 21 percent paid between $5,000 and $10,000; and 16 percent paid more than $10,000. Considering that more than half of Americans have less than $1,000 in their savings accounts, even those in the lowest out-of-pocket category are potentially subject to financial hardship because of their diagnosis.

So where are they getting the money to pay for treatment? Pink Fund’s survey found that 26 percent put their out-of-pocket expenses on a credit card, 47 percent took money out of their retirement accounts, 46 percent reduced spending on essentials like food and clothing, and 23 percent increased their work hours during treatment for extra money. Seriously. These women worked more during their treatment to pay for it.

How Cost Affects Treatment

Ready for a shocker? Nearly three-quarters of women in the survey considered skipping part of their treatment because of money, and 41 percent of women reported that they actually didn’t follow their treatment protocols exactly because of the cost. Some of the women took less of their medication than they were supposed to, some skipped out on recommended tests and procedures, and others never even filled a prescription. While data isn’t available on how these cost-saving measures affected women’s treatment, no one should need to go against their doctor’s prescribed treatment plan because of money.

It Doesn’t End with Treatment

In fact, some argue that it’s what happens after treatment that poses the biggest risk to women’s finances. Once the cancer-fighting part of treatment is over, many survivors need to make difficult choices about breast reconstruction surgery. “The cost factor has a big impact on a woman’s decision to get (or not get) reconstruction,” says Morgan Hare, founder and board member of AiRS Foundation, a nonprofit that assists women in paying for breast reconstruction surgery when they can’t afford it. “Even though she might have insurance, a woman might not have the funds to cover the co-pay, or she may not have any insurance at all. Many of the women who apply to us for a grant are at the poverty level and can’t meet the co-pay.” That’s because according to Hare, the price of reconstructive surgery ranges from $10,000 to upwards of $150,000, depending on the type of reconstruction. Even if you’re paying just a portion of that in co-pay, it can get extremely expensive.

Why is this such a big deal? Well, research has shown time and again that “breast reconstruction is a big part of feeling healed and whole again after breast cancer surgery,” notes Alexes Hazen, M.D., director of the NYU Aesthetic Center and AiRS Foundation board member. That makes it an incredibly difficult choice to decide not to have the surgery for financial reasons—although there are plenty of legit reasons for not wanting to have reconstructive surgery after a mastectomy.

It also can’t be ignored that there’s a mental health component to recovering from breast cancer. “Breast cancer took an immense toll on my mental health,” says Jennifer Bolstad, who was 32 when she was diagnosed with breast cancer in 2008. “Fortunately, my oncologist recognized this and paired me up with a psychiatrist who has a specialization in PTSD from acute illness. While she was the perfect therapist for me, she was not in my insurance plan network, so we negotiated an hourly rate that was more than my co-pay would have been, but much, much less than what she normally charges,” she says. “It ended up being an essential part of my recovery, but for years it was a financial burden both for me and for my practitioner.” To help her recover from the financial impact of breast cancer, Bolstad received a grant from The Samfund, an organization that supports young adult cancer survivors as they recover financially from cancer treatment.

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