Paying for Mastectomy/Reconstruction: Good Luck if You’re Uninsured

If I had a nickel for every time someone mentions health-care reform, I’d be doing better than Warren Buffett or Bill Gates. And nickels are what I’d like to focus on right now. Anyone who has been following this issue at all knows that people are being driven into bankruptcy if they develop medical conditions such as breast cancer and are unlucky enough not to have health insurance. I’d like to offer my two cents (I know, the money metaphors are just flowing today) on how that can happen by giving you a feel for what some of this costs.

My experience is limited to surgery since neither radiation nor chemotherapy was part of my treatment plan. I had a total of five surgical procedures for my ductal carcinoma in situ: two lumpectomies, one coupled with a wire localization procedure; a simple mastectomy combined with sentinel node biopsy and first-stage reconstruction, second-stage reconstruction coupled with augmenting and lifting the other breast to provide symmetry, and nipple reconstruction.

Grand total for these procedures, which does not include dozens of consultations, follow-up office visits and lab work not directly tied to each surgery, was just under $83,000 (in 2008).

I’m one of the lucky ones. Both my husband and I are employed and have health insurance. I met our family deductible quickly and it was smooth sailing from there. I hate to think of what would have happened if we did not have that access. We would have been taking out a second mortgage, which isn’t an option if you already have one, or don’t own a house.

I can’t help wondering what this cost scenario would look like if the health insurance landscape was different. What if health insurers could no longer cherry pick clients by denying people with pre-existing conditions? We know that hospitals have to factor the costs of treating uninsured and lower-compensation Medicare patients into what they charge the rest of us. What if there were fewer uninsured out there? What if doctors didn’t have to practice medicine with one eye on what insurance will accept and another on what they might get sued over? We keep talking about health-care reform and I would argue we need to be framing it in terms of insurance reform and tort reform. The health care I received was stellar and doesn’t need reform.

Surely someone has done or is doing studies on what these costs would look like if doctors and hospitals didn’t carry these burdens. The thing that has always resonated the most with me in this discussion was when President Obama said he remembers his mom fighting with insurance companies as she was dying of cancer. If only we could trust either political party to be looking at it from this angle instead of trying to score points at the other’s expense. Let’s just hope that whichever side “wins,” it’s not a Pyrrhic victory.

Love vs. Cancer: It’s No Contest

Love is all we have, the only way that each can help the other. Euripides

My job is in PR/media relations, so I surf a lot of social media and PR news. As I was surfing and sifting news items last week, something caught my eye from the Fox Chase Cancer Center in Philadelphia. They’ve launched a new campaign called “Love vs. Cancer,” which I think is nothing short of awesome.

Their premise is to reject all the “fight” and “battle” metaphors we’re all so fond of using. Instead, they made a conscious decision to focus on love, the one thing we all have in common when we’re facing cancer.

I still think there’s a place for those fighting words. My friend Pam is facing down a reoccurrence of stage 4 breast cancer and “battle” is still the best way I can think of to describe it. There’s no question she’s in the fight of her life, and she is a warrior. I also used the warrior metaphor to describe the young women in The Scar Project when I blogged about them in November. I said they wear their scars like badges of honor, and they do.

But the folks at the Fox Chase Cancer Center are definitely on to something. Their Web site says that wherever cancer takes us, love abides and offers us strength and hope. They also say they can’t promise that love will defeat cancer, and I agree. But it’s equally true that cancer can never defeat love. Nothing is more powerful than love, and nothing will endure longer–not cancer, or death, or time.

What Should You Look For in a Cancer Support Group?

Let me begin with a disclosure.  I have not attended a breast cancer support group so I can’t offer an opinion regarding their value. 

But I think it’s an important topic, so I asked two women who know what they’re talking about. Stephanie Koraleski is a psychologist with the behavioral health program at the Methodist Estabrook Cancer Center in Omaha, Neb. Kristi Perrotto is a certified clinical social worker and cancer coordinator with the Saint Elizabeth Regional Medical Center Cancer Institute in Lincoln, Neb.

Stephanie said the first thing you need to know is that support groups vary widely. Anyone can put on a pot of coffee, gather in someone’s  living room and call themselves a support group–and there’s nothing wrong with that. The key is to know what you want from a group. Medical facilities typically have groups with professional facilitators. Some of them just feature conversation; others have more formal programs and may invite speakers.

Each type of group has its pros and cons. “The downside of a support group is if it’s not professionally facilitated, it can become very personality-driven,” Stephanie said. (Sounds like a book club I attended years ago.)

If you don’t want to share or hear personal stories, you may prefer a group that has structured programs and speakers. “Some people don’t want to hear sad or scary things. If the one time you go to a group is the day someone found out her cancer came back, it could be very scary if you’ve just been diagnosed,” Stephanie said.

You also want to get a feel for the group’s dynamic. “I usually suggest that people not commit to anything until they’ve attended three or four meetings,” Stephanie said. Since all members won’t show up every time,one visit may not give you an accurate picture.

Whatever form they take, support groups offer a chance to make friends and ease fears. “Support groups can be an awesome way to feel grounded during a time of despondency,” Kristi said. “Talking to others who are going through a similar experience can reassure you that your thoughts and feelings aren’t so abnormal.”

Stephanie agreed. “No one can support you like someone who’s been there.”

Have you taken part in a cancer support group? What was it like?

Cold Breast, Warm Heart

When it’s your turn to get breast cancer, you become kind of a student of the topic. As soon as I was diagnosed with ductal carcinoma in situ (DCIS), I headed online  and bought a stack of books so I could research of all these new terms like DCIS and comedo and cribriform (types of cells that constitute DCIS). Once I realized I’d be getting my breast reconstructed I started studying how reconstruction works as well. I had to work my way up to that particular brand of research; in those days, I was still squeamish about medical details.

The one thing I didn’t see mention of in any of the books or online resources I checked out is that after you’ve had reconstructive surgery with an implant, your breast may feel cool to the touch. Which makes sense when you think about it; the implant (mine is silicone) isn’t going to heat as quickly as living tissue. 

So I thought I would share this as one of those little details you’re not likely to hear about. Is it a bad thing? No, just something to be aware of. It took me awhile to even notice the change.  It’s something I certainly never would have thought to ask–“Oh, by the way, is it going to feel cold?” It wouldn’t have been a deal breaker in any case. Tissue replacement was never an option for me because I wanted to limit surgeries to one area of my body and I was completely comfortable with the idea of implants. Still am.

I’m curious to hear about anyone else’s discoveries along these lines. What’s a small (or big) detail that you never heard about before you got there? What surprised you on your journey?