Patients Can Impact The Breast Cancer Patient Education Act
by Marianne Angelo
April 30, 2016
This piece was originally posted by Marianne Angelo on April 16, 2016. It is now being featured on the publication Cancer Communication Research, which is edited by Dr. Marleah Dean Kruzel.
As a breast cancer survivor and advocate for those considering reconstruction, the intention to write Sheila’s story wasn’t to frighten future patients from acting prophylactically as great results happen far and wide, but results like Sheila’s are preventable. Patients should have the option to know what they can expect for their own body so that they can make the right choice for both procedure and plastic surgeon. When stories like this surface, it’s a call to action and the patient community can impact surgical protocol for the better.
How can you tell if your plastic surgeon’s aesthetic is right for you?
What if architects only described what they were building with hand gestures? What if they only showed their clients photos of their previous buildings without showing models, site plans or elevation drawings? The client would have no idea what to expect.
It’s interesting to view the surgical protocol through another top ranking professional protocol’s lens. For plastic surgeons, proof of a visual aesthetic is portrayed in before and after photos of their patients. Proof of a visual aesthetic is paramount, even more so when it’s your body. But the question begs, what can patients expect for their own body when all they see are photos of other patients results? For patients who aren’t visual, how do they connect the dots?
Here’s why pictures of other patients results are not enough.
I met Sheila in one of the many private breast cancer forums on Facebook, where women discuss prophylactic measures and share their results with those on a similar path. When I saw her photos along with fragments of her story, my heart sank. I wanted to understand how she ended up with results like this and also wanted to see if I could help her.
Sheila did her due diligence. Pre-surgery, Sheila knew what she wanted: A skin sparing, non-nipple sparing Prophylactic Bilateral Mastectomy (PBM) and to have results much like the ones presented to her when she met with the plastic surgeon. She was in good health and confident about the surgical direction.
Sheila recalls “Both the surgeon and his nurse reinforced how much I would like having symmetrical breasts. They would be lifted and firmer.” She trusted in the plastic surgeon and that he did this procedure often. Sheila was aware that it wasn’t going to be a straight arrow to desired results. A few scars, tattoos, and implants so that she could avoid a hereditary cancer diagnosis, like the one that took her sister.
So what went wrong?
Her first surgery was 8 hours. Afterward, her plastic surgeon found her husband in the waiting room and told him the good news. “The surgery went very well and we were able to save the nipples!” The surgeon was excited but met with her husband’s confusion as he knew his wife wanted them removed for extra measure.
Her body was starting to reject the expanders. An infection started to form on her left breast and she headed back into surgery to have the expanders removed and the implants put in.
She remembers “When I woke from surgery I heard screaming and did not realize that it was coming from me! I felt a burning fire sensation down the center of my body.” She didn’t understand how this surgery could have been even more painful than the first.
At a follow-up meeting with her surgeon, he removed her gauze bandages to inspect the new breasts. Sheila caught her first glance and tears started rolling down her face as she tried to catch her breath.
The surgeon read her expression, “I’m disappointed that you’re disappointed.” Her husband at her side, holding her up as her legs went weak. The surgeon offered hopeful advice, “Give it some time, it’ll get better. Just try to wear a bra and push them together more.” As he was leaving the examination room he added, “You may also want to get some counseling. Perhaps your expectations might have been unrealistic.”
She never heard back from the plastic surgeon, which was just as well. Her disappointment led her to find a new plastic surgeon which she traveled 100 miles to meet. After the surgeon viewed her imaging and examined her body she explained “It looks as if the pectoral muscles were cut. This is why the implants are free floating as there’s no pocket.” She also suggested that her ribs were likely broken during the procedure. On top of everything, Sheila found out that her new insurance provider didn’t cover part of her surgeons fees as he was not on the new network and was stuck with a large out of pocket expense.
How could the system have worked better for Sheila?
Even though Sheila was presented with quality photos of the surgeon’s results for other patients, and was told what she could expect to look like, she did not come close to the results presented in the plastic surgeons examples. Perhaps if he told her that she could end up disfigured by going through with this surgery, she would have had the chance to walk away and find someone else.
Sheila’s Rule! is a petition to ask the Secretary of Health and Human Services to consider adding to the education campaign they are currently planning titled the Breast Cancer Patient Education Act, that plastic surgeons provide examples of projected results of what patients can expect for their own body so that results like Sheila’s can be averted.
The Breast Cancer Patient Education Act is to inform breast cancer patients of the availability and coverage of breast reconstruction and other available alternatives post-mastectomy. This Act can do more. Information is education and patients who participate in their care can leverage their results for the better. Please sign the petition that will make this possible.
