The Princess and the Cancer Pea

Once upon a time there was a princess in Boise, ID. We know she is a princess because she has so many advantages. She works for a Fortune 50 company that provides excellent health care and whose culture encourages strong support of employees as they go through hard times. She owns a nice house in the foothills that is way bigger than she needs and is great for parties – and since she works from home she feels she can justify the extra space. She has wonderful, extremely supportive friends around the world who will do (have done!) just about anything for her. She gets to speak her mind freely and does often freely share her opinions. She has shoes and bicycles and rafts and coats and boots and clothes and friends for just about any specific activity she likes to do. And when she wants to go on an adventure or buy something nice she just does it. She lives in a city often ranked top 10 for outdoor activities and adventures and can walk or ride into the foothills or along the Boise River a very short distance from her house. The princess is writing this blog on her patio as she looks out on her gorgeous, tree-covered hillside of a backyard. This princess lives a wonderful, charmed life.

So what could go wrong in this perfect, Camelot world?

That little cancer pea…. And thank goodness it was only pea size when they found it! Because this princess has great health care she didn’t hesitate to ask for an MRI and go to the High Risk Breast Clinic after the initial two sets of mammograms plus an ultrasound said that the shadow on the first mammogram wasn’t really anything to worry about. Because the princess knew her insurance would cover just about any reasonable health care advised by a doctor she asked for the expensive genetic testing and spent three hours at the High Risk Breast Clinic talking to a genetic counselor, a surgeon, and an oncologist about her lifetime risk of breast cancer and how her mom’s two breast cancers (the 2nd one was terminal) affected the princess’s own risk. They told her to lose 10 pounds, exercise more, get screened twice a year, and take Tamoxifen. The princess not only lives in a country that can offer the best health care in the world if you can afford it, she is also lucky enough to have a job that gives her the insurance that means she can get that excellent care when she needs it. Because of that high quality of care and her great health care insurance the princess had breast cancer surgery and she is now cured. She won’t even have much scarring and her breast doesn’t really look any different than it did before. How great is that?!

Because of that great health care plan, when the surgeon suggested that maybe another ultrasound was needed and maybe they should just go ahead and do a biopsy guided by that ultrasound she didn’t hesitate – she had no fear of the testing costs or any difficult decisions based on whether she could afford any suggested future care. And that may have saved her life. At the very least it made the whole cancer thing less scary. If the princess had no insurance or had insurance that was more costly or she couldn’t afford even minor copays and deductibles like so many people in this country they might not have found the cancer until next year’s mammogram. Statistically the tumor might have doubled in size twice in the next year – from .9cm to 3-4cm. It might have gone from totally non-aggressive and incapable of spreading to other parts of her body to something that was about to or already had escaped into her lymph nodes or blood stream. She might have not just breast cancer but also bone cancer or something else hard to cure and painful. But this princess had great health care and she is cured and that is wonderful for her!

But for many in this country, with the type of insurance so many people in the United States have (or don’t have), they might never have had the 2nd mammogram and biopsy this year and might not have their next mammogram on the advised schedule. So that tumor might have doubled in size again and again and again…. Once you are considered high risk (and the princess was given an estimated 36% lifetime risk of breast cancer – almost triple the norm) you are often put on a schedule to have an MRI then six months later a mammogram then six months later an MRI – rinse and repeat. After her cancer diagnosis this is now a forever-more schedule for the rest of her life unless she decides to have a preventative double mastectomy. But not all insurance will cover that screening MRI. It’s expensive and some insurance carriers will refuse to cover it, especially if you’re only borderline high risk or had a mastectomy (the princess had a lumpectomy). The princess heard that some high risk women save up so they can get an MRI every 3-4 years, paying totally out of their own pocket, and they just can’t afford to get the once a year MRI that their doctor recommends.

While the Affordable Care Act (ACA aka ObamaCare) takes great strides forward because it requires that a screening/preventative mammogram be covered by your insurance for free, it doesn’t require subsequent follow-up care such as a 2nd mammogram in the same year to be free. In her case the princess had to pay several hundred dollars for the 2nd mammogram/first ultrasound and doesn’t yet know the total costs for the second ultrasound, ultrasound-guided biopsy, nurse navigator, surgery, pathology reports, radiation, and follow-up care. But since her maximum out of pocket for any given year is small she has probably already paid every health care expense she will have to pay this year. And how wonderful is that? But how many people in this country have that luxury?

The Affordable Care Act also means that the princess is guaranteed that her past breast cancer won’t keep her from getting health insurance if she changes jobs in the future. Pre-existing conditions can no longer be used as an excuse for insurance companies to avoid covering the people who may need the insurance the most. There are also state and national laws that prevent health insurance companies and employers from using the results of genetic testing to discriminate against the princess and other Americans in health insurance and employment decisions – but they don’t prevent life insurance discrimination.

For most people health care insurance in general will be cheaper and more comprehensive with the new health care exchanges ObamaCare has created. In some states that really care about their inhabitants Medicaid expansion also covers and subsidizes even more people. So if you don’t have insurance or need better insurance now is the time to do your research and get covered! If you still can’t afford breast cancer screenings and treatment go to your local Planned Parenthood clinic for help. They provide funding for screenings and health care of all kinds for men, women, and children. As a proud board member of Planned Parenthood Votes Northwest I encourage you to support women and women’s health care (and men’s too!) by supporting Planned Parenthood!

The princess wants you to think long and hard about your health, your health care, your friends, and your insurance. Fight like a girl at all times! Think about all the wonderful things ObamaCare is doing and will continue to do to improve the overall health of Americans. Make your mammogram appointments and keep them! Encourage your friends to do the same. Get to know your own breasts, how they look and feel at various times of the month, and tell your doctor if anything changes. Think about what your own health and life are worth and be willing to pay for care when needed. Speak up and ask lots of questions – challenge health care providers and insurance companies if needed. Be supportive of your friends and ask them for help when you need it. Don’t fall for pink-washed products and research any charities before you donate to them. Take charge of your life so you too can have a wonderful, charmed life like the princess!

Read more about the princess on http://www.caringbridge.org/visit/cindygross and http://befriendingdragons.com. She also tweets as CindyGross and SQLCindy.