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Entry 3: Resources for Women Under 40 Seeking Breast Exams

I taped this week's vlog entry more than month ago. I filmed the tag promising to post links for young women seeking easier access to mammograms.

I feel like I have failed.

I have reached out to many organizations (Susan G. Komen, StupidCancer, and The American Cancer Society to name a few.) Mostly these organizations weren’t able to help me, because free or low-cost mammograms for women under 40 are simply not available.

But, I have found some resources to check out, and ways to help women like me buck the system a little.

First of all, let’s note that there are two reasons to get mammograms:

1) A Routine Screening

The American Cancer Society recommends all women over 40 get routine mammograms. There is no indication that routine screenings for women under 40 are particularly effective in finding breast cancer. One reason is that cancer may look the same as healthy breast tissue in young women with dense breasts on mammograms. Many doctors feel that ultrasounds are a more effective diagnostic test for young women.

If you have a strong history of breast cancer in your family and/or have been diagnosed as BRCA1/BRCA2, annual or even bi-annual mammograms or ultrasounds, could be beneficial to you.

2) A Diagnostic Test

When I began looking for a mammogram, it wasn’t because I of my family history, it was because I had an actual lump in my breast. I was seeking the test to determine what the lump was. In young women, health care providers don’t immediately jump to breast cancer: cysts or fibroadenomas (both benign) are much more common. BUT, while most breast masses are benign, the word most indicates, not all. As I know all too well.

So, now we know the difference, how do we get access?

Routine Screenings

The legitimacy of routine mammograms for women of any age have recently come into question. A vast 25 year study showed the death rate among women receiving annual mammograms versus those receiving annual Clinical Breast Exams (CBE) were identical, as the New York Times recently wrote.

As a woman over 18 or 21, you should be having an annual exam with a gynecologist. Make sure that exam always includes a CBE. They take five minutes, so make sure your healthcare provider provides one. If you are uninsured, note that Planned Parenthood will provide this service.

Anecdotally, I should share that my gynecologist performed a CBE four months before I discovered a lump the size of a golf ball in my left breast. I don’t believe my doctor missed anything, I believe at that time it was too small to feel. Breast cancer in young women can grow fast.

Regarding The Affordable Health Care Act (which always comes up when we talk about free health care services): yes—it does cover mammograms. However, the regulations vary from state to state and no state offers regular screenings to women under 40 (some states provide baselines to women between 35 and 40). See more here.

Fear not! If you have a family history and want annual mammograms, there are ways to attain them...It’s just not super easy. A great resource I found (and is cross-referenced with the National Cancer Institute above) was the Center for Disease Control (CDC).

Through the CDC there is a National Breast and Cervical Cancer Early Detection Program (NBCCEDP—longest, most forgettable acronym ever). After visiting their home page, you can click on “Find a Screening Provider” then click on your state. It will offer you a link to a state-funded cancer detection program.

The New York State Program only offers free-screenings to women over forty, but notes that women under that age who have been designated “high-risk” by a NYS Medical Provider can also receive scans.

I looked at a few other states: Wisconsin offers only women between 45 & 64. Illinois didn’t list age requirements on their home page or in their FAQ’s.

I really loved the CDC page because it also provided links to cancer statistics in your state and on the New York State page addressed a lot of questions about “what next?” Like, if it turns out I do have cancer, how will I afford my care?

Another resource I found was through the American Cancer Society (ACS). I love the American Cancer Society. They have a million awesome programs for patients, they give money to research, offer financial assistance and their phone operators are really knowledgeable and friendly.

Through their website (which is fast, and can be a little tricky to navigate…don’t be afraid to call them directly if you’re struggling to find your way), they have a similar map program to that which the CDC provides. Right here.

When I put in my zip code in NYC, I found no resources. However, when I put in the zip code where I grew up in Wisconsin, I found three centers in my area that provided free or low-cost mammograms.

None of these pages indicate that they offer ultrasounds: only mammograms.

However, if you already have a palpable lump, it is likely a mammogram would confirm cancer.

Which brings us to:

Diagnostic Screenings

I did not use state provided services to attain my diagnostic mammogram. I suspect the resources listed by the CDC specifically would be difficult to navigate and/or receive immediate attention through. This is ENTIRELY conjecture, maybe I’m wrong. I just know how other government institutions work (we’ve all been to the DMV), so it’s just a hunch.

If you feel a lump in your breast and want a diagnosis my personal, non-doctor, all-Jacey recommendation is this:

Find the top five hospitals in your area for breast oncology. I tell you to choose the best for the breast scan because if you establish a relationship with a hospital and it turns out you have cancer it is likely you will stay there for treatment, especially if they are able to help you financially. So, begin with the best.

Call all of them, and ask what kind of services they offer in terms of free or low-cost breast imaging. They will probably tell you they have some day each month where they give routine exams to women over 40. Tell them your story. Ask for their help. Be honest. Be direct. Be calm… even if you’re scared. Someone is going to help you, and figure out a way to give you a scan.

Do not give up. Do not second-guess yourself. Being your own advocate is the first lesson you learn on this journey. Maybe you have a cyst. Maybe you have an overactive imagination. Maybe you have cancer. Let a doctor decide.

If you continue to hit roadblocks, think outside the box. As an actor, I received great help from The Actor’s Fund. Do you belong to a union or other organization that might be able to provide health resources? Do you have friends who are doctors who might be able to advise you?

If that fails you, reach out to some of the organizations I have mentioned: The American Cancer Society, The Susan G. Komen Foundation, Livestrong, CancerCares, StupidCancer, or the Young Survivor’s Coalition.

I wish I could tell you that all or any of these organizations has a quick link to breast cancer screenings for women under 40, but alas, they do not. However, I have spoken and/or e-mailed with people from all of these organizations since my diagnosis, and they have been helpful. If somehow you have run across my vlog and are in the same situation I was in… If you are running out of options, shoot me an e-mail. Seriously. Sometimes just having someone help you navigate is what you need. That’s why I was so lucky to find The Navigator at the end of my search for a mammogram.

More on her next week. Stay Tuned!

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