I Have Terminal Breast Cancer, but I'm Still Spending Thousands of Dollars Each Year on Costs My Insurance Won't Cover
One 35-year-old woman explains the real price tag of living with metastatic breast cancer.
On a recent trip to CVS, I bought Biotène mouthwash ($11) because I had been experiencing dry mouth as a result of my chemotherapy regimen. Prior to that I picked up a prescription gel to treat acne I developed from radiation ($15). Before that I had bought Amlactin lotion ($20) for hand-foot syndrome, stool softener ($13) for obvious reasons, and Pepto-Bismol ($5) for equal and opposite obvious reasons.
I also pay a $50 copay once a month, on average, to see my doctor. Because oncologists, surgeons, radiation oncologists, and their teams are all considered specialists, every visit with them is charged at the higher specialist rate, even though they are practically my primary-care providers.
I was diagnosed with breast cancer in 2012. I was 29 at the time, and there were big financial hurdles. Three years later the cancer metastasized, and now I live with the disease and undergo constant treatment. Now that this is my life, I spend thousands of dollars a year, every year, on having cancer.
A 2017 Duke University study found that cancer patients spent 11% of their household income on “expenses related to their treatments.” But what, exactly, are those expenses? Hopefully you have insurance; at a minimum, you’ll be responsible for your deductible, copays, and out-of-pocket maximum.
This baseline is usually thousands of dollars, which is a serious financial burden. If your treatment extends beyond one calendar year, you’ll pay it all over again. But it’s only a starting point. What most care providers fail to warn patients about are the hidden costs of cancer—all the other stuff we have to pay for in order to function and, ideally, thrive.
The real price of a treatment plan
After my diagnosis, I was given a treatment plan—a combination of surgery, chemotherapy, and radiation—and each treatment had (and has) its own hidden price tag. I was to undergo a bilateral mastectomy, which is typically a night in the hospital followed by weeks of recovery at home. At the time, I was living in Chicago, but I wanted a New York City hospital so that I would be close to family.
I took medical leave from work, rented a car, and moved in with my parents. (I’ve since moved permanently back to New York.) As expensive as this was, I was fortunate. Many women are forced to miss out on wages or leave work entirely, while spending money on lodging near their hospitals. After surgery, women like me purchase things to feel more comfortable, ranging from stool softeners (because painkillers cause constipation) to a mastectomy pillow. We also buy special bras and new clothing to suit our new bodies.
If you want to preserve fertility
For me, chemotherapy would follow surgery, but first came the question: Did I want to preserve my fertility? Chemo could permanently damage my eggs, so I had the option to harvest them pre-chemo and freeze them. While many insurance companies will cover part or all of IVF costs for women struggling to conceive, I was in a ridiculous predicament. Because I was not technically struggling to conceive at that moment, my insurance company denied me. Never mind that I would likely become infertile in the future and merit coverage only after it was too late.
The Livestrong Foundation, a nonprofit that provides support to people affected by cancer, has an incredible program to underwrite the costs of IVF drugs that saved me thousands of dollars. But I was still responsible for additional thousands of dollars for the actual egg retrieval process and storage. Add to this the transportation costs of going to the gynecologist’s office almost every day for two weeks to track egg growth—a small but pernicious expense.
My husband, who was in law school at the time, had some savings that we fell back on. We had just gotten married about a month earlier, and I remember feeling touched by his (literal) investment in our future; we were in this together.
Hiding or preventing hair loss
Chemo has proven to be the most expensive. In addition to having to buy so many palliative items like those listed above, cancer patients have to consider—and pay for—managing hair loss. Before I began any treatment, I knew I wanted to preserve my hair. This is done using a scalp cooling system, which freezes the blood vessels in the scalp during treatment so the drug can’t travel to the hair follicles, thereby saving them from falling out.
There are a few different systems, but they all cost about $2,000 or more. To date in the US, insurance coverage is not standard; scalp cooling doesn’t even have a medical code. At the time, $500 a month for cold caps was out of reach but I was desperate to do it. My parents, aunt, and family friends all stepped in to cover it.
Again, I was touched. Women who can’t afford scalp cooling or don’t want to suffer the process still need to feel comfortable. They purchase beanies, head wraps, scarves, and of course, wigs. Wigs, or “cranial prostheses” as they’re called by insurers, do have a medical code, and many insured patients can get one for free. However, my insurance company only covers synthetic wigs and only from one supplier, which all look pretty fake. A human hair wig costs about $5,000.
Chemo can also cause women to lose their eyebrows and eyelashes, a side effect that actually carries expenses. I bought eyebrow pencils and fake glasses, which serve double duty for framing your face if you’ve lost your brows and protecting your eyes from dust and debris if you’ve lost your lashes. Other patients I know have purchased brow gels and ice masks. My oncologist readily wrote me a prescription for Latisse, but I’m not sure when she did so that she realized it would cost me more than $100 to fill. (Insurance coverage of Latisse is unlikely.)
Doctor fees beyond copays
The CDC released a report in June of this year, which found that annual out-of-pocket medical spending for cancer survivors (defined as people who have ever been told by a doctor that they had cancer) was $1,000, compared to about $600 for non-cancer-survivors. This means that cancer survivors—not even necessarily anyone currently in treatment—spend $400 more per year just on health maintenance. This could include their doctor visits, transportation, drugstore purchases to treat chronic or lasting physiological conditions...the list goes on.
These days, I easily spend $1,000 per year just on copays and various small purchases. In fact, while working on this piece, I received a surprise $300 bill. I am beyond fortunate that my husband and I are now financially secure and these expenses don’t break us. But I often think about an alternate universe where I could donate that money to worthwhile causes.
The worst thing that can happen is that a patient doesn’t get what she needs because she’s concerned about cost. Even the lowest levels of health risk are not acceptable. There have been times when I’ve thought, Ugh, another $10, and almost didn’t buy what was prescribed for me. But going without something causes discomfort at a minimum, and that could be much more serious.
How to help a loved one defray costs
If you have cancer, I recommend asking for help to pay for the things you need. If you know someone with cancer, find small ways to support her financially, if you can. The generosities extended to me include gift cards to a meal-delivery service, friends taking me away for a weekend, and another letting me use her FedEx account number for cold cap shipping. Even a $10 CVS gift card removes a small burden and can make that day, that errand, less onerous. Cancer has a reputation for being expensive, and it is—just not exclusively in the ways you’d expect.
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