Tuesday, May 14, 2013

When celebrities get cancer

In case you've been living under a rock, you probably know that Good Morning America new anchor Robin Roberts was diagnosed with aggressive breast cancer 5 years ago.  While the good news is that she was treated and recovered from her cancer, the bad news is that she recently had a recurrence of cancer, called myelodysplastic syndrome, most likely a result of some of the breast cancer treatment.

I picked up Parade Magazine recently and started reading about  Roberts' "dream team" of "handpicked medical experts." Steam started coming out of my ears.

When the average person gets cancer, she don't have the ability to "handpick" her doctors. She doesn't have a ton of choice. She goes to the place where she gets her medical care, and hopefully she is close to a city where she can get decent medical care, and hopefully she has good insurance, and she gets what she gets.

When I was diagnosed with breast cancer, no one every asked me which doctor I wanted. The doctors were chosen for me. No one asked me what I wanted for treatment: I was so freaked out that I was willing to do whatever they said.

Today's revelation that actor Angelina Jolie has the BRCA1 gene and had a double-mastectomy in order to prevent herself from getting breast cancer in the future is a similar situation. Yes, women receive this test, and yes, sometimes they are counseled to have their breasts removed to prevent a future occurrence of breast cancer. But her experience seems far more pleasant and easy than the average woman's experience.

When I was going through breast cancer treatment, it was recommended to me that I have genetic testing. Because my mom had breast cancer at around the same age as me, there was a possibility that we had a genetic form of breast cancer.

The test itself is simple enough: it's just a tube of blood. But the results can have repercussions across your family.  If I was positive for BRCA 1 or 2, there was a possibility that my son, and my brother's sons and daughter, could also be affected. I found this possibility very scary.

And the options, if I had the gene, were bleak: either get a prophylactic double mastectomy, or increased surveillance.

In the end, I didn't have the breast cancer gene, so I didn't have to make that difficult choice. But I could have.

Jolie did have the gene, and she made the choice to have the surgery. In her editorial, she talks in glowing terms about the Pink Lotus Breast Center. This is how their website describes the care they offer:
At the Pink Lotus Breast Center, women enjoy the unique experience of holistic care linked seamlessly to the latest screening and diagnostic technologies, including state-of-the-art surgery. We believe that creating a haven of serenity promotes wellness. Knowing that our distinctive amenities and patient services promote the highest quality care allows our patients to relax and trust those treating them.

Once having visited a Pink Lotus Breast Center, our patients quickly feel a part of our family. Each takes home a renewed sense of hope, an understanding of her diagnosis, and a realization of our ultimate purpose: to save lives.
What makes us so different from the rest? Here are some of the top reasons: Family-owned, Family-funded, Predominantly female-run, No red tape, No committees, Freedom to make decisions that put the best interests of the patients first, No hospital, Non-profit partnership giving back to those in need, Technology-driven, Breast fellowship trained surgeons, Compassionate staff, Committed to improving on a daily basis. (italics mine)
Sounds almost too good to be true, doesn't it? A haven of security? Distinctive amenities? No red tape and no committees?

While Pink Lotus says on its website that it does take insurance, I am willing to bet my left breast (kidding!) on the fact that Jolie didn't receive the standard care that is paid for by insurance, but paid for extra special super deluxe care instead, since money is no object for her.  This is not the typical care that women receive.

Here is how she described her experience:
...I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.
Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.
Contrast this with the stories of more typical women on Breastcancer.org's discussion boards.  There is quite the discussion going on today about Jolie, both pro and con.  Many women on the boards were supportive of Jolie's decision, but felt that she minimized the double-mastectomy and reconstruction experience. One member commented: "She's not going to talk about clogged drains, incisions opening up, the squareness of the expanders, the scabs, or the scars (which are no doubt not truly 'small')."

I have no beef with Roberts or Jolie being public with their cancer experiences. This is a good thing. I do wish they would stop pretending that their celebrity status doesn't impact their medical treatment, because this is a flat out lie. Their celebrity definitely impacts their care, and most of us would not have the access to our choice of specialists, specialized or new treatments, and specialized care that they do. This is simply reality.

I wish both of them good health. I just wish that they would be honest with us, and with themselves, about the special kind of treatment they receive because of their celebrity status. Regular folks simply do not have the same experience.