I Have the BRCA Mutations, But Unlike Angelina Jolie, I Can't Afford a Preventative Mastectomy

For now, all I can do is hang my hopes on the slim percentage that I won’t get breast cancer, knowing that if a tumor develops, it’s not like I can afford to treat that either.

May 14, 2013 at 1:00pm | Leave a comment

I’m lucky.

Due to a quirk of circumstance, I got free counseling and genetic testing for BRCA mutations, those little twists of genetics that make you more vulnerable to breast cancer. A 2001 study (conducted close to the time I got my testing) at the Lombardi Cancer Center noted that people could expect to pay around $2,000 for genetic testing and counseling.

Which worked out to around $8,000 spent for every mutation found.

I’m unlucky.

What they found in that testing wasn’t terribly surprising, given my family history: I have variant BRCA1 & 2, which means there’s a sleeper agent in my genes, increasing my risk of breast and ovarian cancer. I’m not particularly unique -- lots of people have these mutations, and genetic testing to seek them out is getting a lot more common as people take advantage of the technologies available to them.

The counseling itself isn’t terribly expensive, actually. A counselor goes over your family history (it helps to have a family tree with information about family cancers well-documented) with you to determine some potential risks, and to help you decide if testing is right for you. Testing, on the other hand, is quite expensive, as you can’t really cut corners on DNA sequencing and interpretation of the results.

Your followup appointment, where you discuss those results, is the one where your life can change dramatically. Maybe you didn’t inherit that family gene. Maybe you did, but your risks are comparatively low; maybe you should consider getting mammograms a bit earlier, although there’s some debate over whether early mammograms are as helpful as we think they are. Maybe you should take tamoxifen as a preventative.

Maybe you should get a preventative mastectomy.

It’s the nuclear approach. Radically reduce your risk of developing breast cancer by removing most of the tissue that could serve as a little tumor incubator. It’s also utterly grueling, requiring at least one surgery (and possibly more, if you want to conserve tissue and get a reconstruction, which most people do). Even then, your ovaries are little time bombs ticking away, so you might want to consider an oophrectomy too.

You will never breastfeed a baby. If you opt to remove your ovaries too, you’ll be plunged into early menopause, requiring supplementation with hormones. And, of course, you won’t be able to carry a pregnancy without the endocrine system to support it if your ovaries have left the building. If you’re, say, 23 and facing those choices, that’s a grim roll of the dice.

I would have opted for a preventative mastectomy, like a growing number of people with breasts are doing. Some doctors caution that there’s an overestimation of breast cancer risks going on out there, that some people are needlessly getting an intense surgery, but there are some of us out there who really are candidates, who have a very high risk of breast cancer and want to prevent it.

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Cut along the dotted line. Please. 

“Why haven’t you had those suckers cut off yet?” one of my doctor friends jokingly asks every time I see her.

“Suckers” is an apt name. I think of them like the suckers that cluster at the roots of trees, diverting nutrients, slowly sapping the will to live from the parent tree. The only thing you can do with suckers is prune them away, and keep an eye out in case they try to come back. I want to call them “pretumors,” except that has a specific medical meaning, and my breasts aren’t precancerous. Yet.

I can’t afford a preventative mastectomy, which is the only reason I’m Chesty McChesty today. The surgery is mind-bogglingly expensive, whether or not you choose reconstruction along with surgery -- and I wouldn’t choose reconstruction. In addition to surgeon’s fees, you’re facing hospital fees, the anesthesiologist’s expenses, and a myriad of other surgical costs pushing your total bill into the thousands.

When you’re uninsured, which I am, a preventative double mastectomy is often out of reach, assuming you could afford the genetic testing to tell you one might be a good idea in the first place. This isn’t like choosing between a trip to Hawaii and a new computer.

You’re not out of the woods after surgery. First, drains will be placed in your chest and you’ll be effectively immobile, unable to move comfortably, let alone work. As the drains slowly do their work and remove excess fluid, they can be removed, one by one, but you’re still nowhere near returning to regular activity levels. If you’re opting for reconstruction, here’s where we start talking about inflating those implants.

Either way, you face weeks or possibly even months, depending on how you respond to surgery, of recovery. You slowly rebuild strength. You may be able to return to work part-time, and then eventually increase your hours. Imagine doing all that and dealing with chemo and radiation, like breast cancer patients do.

That’s what I’d like to avoid by getting a mastectomy.

The costs of recovery are often underestimated. It’s not just the not being able to work -- which, for freelancers like me, is a tremendous cost because we don’t have sick leave accrued, and many of us lack savings. It’s the cost of all the things you can’t do, the unpaid work you perform at home, like caregiving, cleaning, cooking.

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Not to mention the cost of a new wardrobe. You think this dress is gonna fit on a flat-chested version of me?

Laid up on your back with tubes sticking out of your chest, popping painkillers to deal with the intense misery that is surgical recovery, you can’t do the things your household might expect of you. You may need help shuffling to the bathroom; from key member of the household to someone in need of care, in a single surgery. Who’s going to fill that gap?

If you live alone, like I do, who’s going to cook? To clean? To change the litterboxes you can’t lift? Who will drive you to medical appointments because your chest pain is too intense to get behind the wheel? These are things you need to think about before you sign on the dotted line and fit that OR cap over your head, lie back on the gurney and wait for the Valium to kick in.

They tell me that the Affordable Care Act will fix all this, that I’ll be covered at last, but forgive me if I’m skeptical. ACA won’t cover everyone, and those of us who fall through the cracks will be left worse-off than before. We won’t just be uninsured, we’ll be paying fines for not having insurance.

I won’t qualify for low-income subsidies because I make too much -- fair enough, the line has to be drawn somewhere. Yet, I don’t make enough to afford insurance on my own, and insurance does not equal health care. Even if I bought insurance, I’d still be paying out of pocket for what that insurance didn’t cover.

Like, say, genetic testing and counseling, which may or may not be covered by insurance depending on family history and individual company policies. As for that costly surgery, no insurance company is chomping at the bit to pay for it, and patients will need to meet a very precise set of criteria to qualify.

Very few patients will have access to the Cadillac-level treatment enjoyed by the most wealthy and powerful in society, with detailed and extensive genetic counseling, treatment in a luxury breast care center (it’s public hospitals for the rest of us), thoughtful and individualized followup. Which isn’t to say that I’d be under the knife of a hack or a lazy surgical team, but that my treatment still wouldn’t even begin to approach that of someone paying with substantial private funds.

That’s an issue that becomes particularly acute for those who want reconstructions, because reconstructions need to be done with extreme care. We all know what a bad breast reconstruction looks like, and it’s not a pretty picture; breasts migrating across the chest wall, unequal inflation, breasts that don’t fit with the body type and size -- droopy, too high, too far out across the chest.

Good plastic surgery is expensive, and let me assure you that ACA isn’t going to cover gold medal breast reconstruction for people who opt for preventative mastectomies, even if it will pay for the breast surgery itself. Choosing reconstruction isn't a vanity, nor is it frivolous: some people need it as part of their healing process, and they should have a right to access the best available. 

This country has a strange lack of commitment to preventative care, preferring to allow medical conditions to fester, like cancers, until they explode and require expensive treatment.

For now, all I can do is hang my hopes on the slim percentage that I won’t get breast cancer, knowing that if a tumor develops, it’s not like I can afford to treat that either.

I’ve read descriptions of what it’s like to die of untreated breast cancer, tumors suppurating through the skin and eating into the chest wall, the stench of rot and death surrounding the patient, the metastases into the brain and bones, the increasing pain. I wonder how much of that I’d be able to tolerate before I decided it was time to punch my ticket on life and take my mutated genes with me.