My double mastectomy, and the test most women can't afford

ESSAY - It’s a time honored tradition in American life when an A-List actor shares his/ her 'cause celebre,' that we sit up and take notice...

Luther Vandross was outed as gay after his death.

It’s a time honored tradition in American life when an A-List actor shares his or her “cause celebre,” that we sit up and take notice. The morning of May 14, 2013  proved no different.  I think the earth stopped rotating for a bit as one by one we learned about Angelina Jolie’s prophylactic double mastectomy.

As she explained in her New York Times’ Op-Ed, “My Medical Choice,” her mother passed away from ovarian cancer, and she chose to take drastic steps to reduce her chance of becoming ill. It may not have been an easy decision, but it was an informed one.

She was able to ask and pay for a $3,000 one-of-a kind genetic test. What her doctors were looking for is whether she tested positive for the BRCA1 gene. It’s been determined that women who have it may have a higher risk of developing breast or ovarian cancer down the road. It’s not a guarantee, just a guide. Ms. Jolie said that in reviewing all the information about her and her family history, she felt removing all her breast tissue would increase her odds of having a healthy life with her partner and children.

theGrio: The breast cancer genetic test folks are talking about

This is all well and good, but here’s where it gets complicated: It’s unlikely everyone will be able to access and take the test. Not every woman can afford it as an out-of-pocket expense, or have the type of insurance that will cover it. In most cases, a patient must fall into a “high-risk” category in order for insurance to pick up part or all of the tab. There are so many people living in the less traveled parts of this country that have never heard about BRCA1, let alone have the resources to find where to get tested and how to pay for it. With these factors in mind, it seems a good portion of our population will be left behind.

The ‘glass of water in the middle of the desert’

So I find myself  once again at odds with the New York Times for  devoting so much ink letting women know about a test 99 percent of them can’t afford. It’s the proverbial glass of water in the middle of the desert: It’s there right  in front of you, but you can’t drink from it.

I’m equally taken aback by the Times’ editorial judgment. Its editors finally chose to educate us women about the benefits of costly but preventative care because the lights went on for a certain Academy Award-winning actress. But three weeks prior, the same paper peddled their widely-circulated Sunday Magazine with a cover piece splashed in hot pink letters,  “Our Feel Good War on Breast Cancer.” Peggy Orenstein, its author, who is also a breast cancer survivor, wanted to expose the downside of early and regular mammography — a practice which is covered by insurance companies under the Affordable Care Act. In addition to the irresponsibility riddled in Orenstein’s article is the reckless accompanying  art work that shows countless photos of rabid Pink Ribbon advocates looking desperate, crazy, ridiculous, and yes, in some shots, cartoon-like. (My response to Ornstein’s article is here.)

If we can’t get on the same page as a country about whether a woman should mammogram and when; if women can’t even be their own best advocates for best practices, how are we supposed to make sure everyone can get a hold of an esoteric blood test that’s designed to track down a potential genetic mutation?

My double mastectomy

Genetic testing wasn’t anything I was familiar with until I was diagnosed. It was explained I needed to get it done in order  to determine whether I needed a single or double mastectomy. Multiple spots of Stage 1 DCIS (Ductal Carcinoma In Situ) were detected in the right breast, but my left was pristine. If the test came back negative, which it did, the choice was mine to keep or lose the second breast. But if the test came back positive, it would have been medically required to remove both. The genetic test also made clear whether I could keep my ovaries. But even in these dire circumstances, my insurance company didn’t cover the cost, and I had to carry the expense.

I opted for a double mastectomy. I’m not a naïve person, but I never thought  there would be a day I’d wake up from sound sleep one afternoon in mid-May without my beautiful DD breasts. I miss living and breathing inside of them in a way I can’t even express. I miss occupying space with them. I have yet to read an honest piece of literature or journalism that attempts to explain what that loss looks, feels or tastes like, but if you’re really sitting with me, you can maybe hear what it sounds like.

Because no one talks about what a mastectomy really is, most people don’t realize it’s not just your actual breast that’s removed, it’s all of your breast tissue which extends as high as your clavicle and around under your arm. Most nipples can’t be saved, or aren’t worth the risk of keeping. They can be reconstructed, though they don’t have any nerve endings or sensations like before.

And while surgeons have become more skilled and muscle isn’t stripped away like in the old days, if you look closely at a woman post-mastectomy, you can see with a careful eye a slight concave on either side of her breast bone. The cleavage line is different. It’s lower. The recovery time is slow depending on the type of reconstruction one chooses. Most importantly, reconstructive surgery is a process. I don’t know anyone who has it all completed in one shot, and not because of vanity. It’s a road rebuilding the human body that requires a level of patience and a suspension of disbelief you can’t imagine.

Unlike Ms. Jolie, I didn’t look like something in a science fiction movie. I looked wartorn. I woke up with my mind forever pacified by the weight in my chest from the implants. That probably saved me from disappearing forever. But nothing prepared me for that moment that I opened the insurance claim and saw my silicone implants are actually prosthetic devices. It suddenly became very clear and heartbreaking everything I had lost, and I learned quickly it didn’t really matter why.

When everyone refuses to be honest about what a mastectomy is, women are often left alone in front of their mirrors with multiple scars trying to find their way forward — not just out in the world, but in their private bedrooms.

I thank Ms. Jolie for cracking the door open a bit more for me. I appreciate her joining the discussion and raising awareness about an under-covered piece of the breast cancer puzzle.

I’m glad she acknowledged the prohibitive cost of genetic testing, and I hope going forward she and her partner devote some of their celebrity to raise funds that help women gain access to better healthcare. I know Ms. Jolie’s activism overseas has been nothing short of successful. Maybe her brush with this will enable her to see how many Americans are in pain and truly disadvantaged. Like I told a friend of mine recently, war zones are kinda everywhere these days.

Tara L. Meltzer is a cable news producer. Follow her on Twitter at @tmeltzmsnbc.