Melanie Adrian is a dynamic young PhD. and an assistant professor in Carlton University’s Department of Law and Legal Studies in Ottawa. In April, 2011, she received a diagnosis she was not expecting.
“I was diagnosed with breast cancer, and I was told I needed a mastectomy. I’m in my 30’s and this just wasn’t part of the vision I had for the rest of my life! I wanted to find alternatives, so I went to various surgeons at the Breast Health Centre in Ottawa. They all told me the same thing: You have to have your breast removed. I said, ‘That’s not an option. Let’s think outside the box. What else is available?’ And they said that their main goal was disease control, not aesthetics. But I knew that there had to be a way I could have both.
“I wasn’t happy with their response, so I started doing research on my own. I’m very lucky that I have a great network of friends and family, and I sent out an email to get connected with some people. Within forty-eight hours I had an appointment with the head of plastic surgery at Cedars Sinai Hospital in Los Angeles, Dr. Joel Aronowitz. I sent him my medical reports and we followed up with a telephone conversation and he was extraordinary. He said ‘Why don’t you have a skin-sparing mastectomy?’ And I said, ‘What is that?’
“I talked with him, and he gave me the language as well as the idea of alternative surgical treatments for breast cancer: within twenty-four hours of contacting my friends, I had the terms Skin-sparing and Nipple-preserving Mastectomy. This type of surgery is basically a newer technique that preserves the non-cancerous skin and if possible the nipple and areola. In many cases, the surgeon makes an incision under the areola from 3 o’clock to 9 o’clock, then cuts out all of the cancerous tissue followed by a lymph node dissection – which is a standard secondary procedure to see if the cancer has spread to any other place. The lymph node dissection is typically done by a secondary incision on the side under the arm, but in this surgery there’s no secondary incision: it’s all done through the incision under the areola.
“I learned later that some of the doctors I spoke to in Ottawa knew about these advanced techniques – but didn’t tell me about them because there was no-one in Ottawa able to perform them. I also learned that over 10 years ago they’d spoken about making these options available in the region, but the idea was dropped because no one was pushing for it.
“I wanted this surgery for sure – but I really hoped to find it in Canada. So I sent out a more comprehensive email again, asking if anyone knew of anyone in Canada doing it, though I already had a surgery booked with Dr. Aronowitz.
“I ended up finding this absolutely fantastic team of surgeons in Hamilton who are dedicated to breast health in cancer patients. This is a team working only in breast health, period – both surgeons and plastic surgeons. And they’re overwhelmed, they’ve got so many people! And yet they still took me on.
“I met with them within a week; had my surgery within two weeks; and walked out not feeling like I’d lost anything. So that’s what it COULD be.”
As pleased as Melanie was with her surgery, she was also completely unsatisfied that other women in her district or elsewhere might continue to be denied this option. She began a campaign to reformulate how health care providers in her area treat women with breast cancer, and like the good anthropologist she is, began by interviewing the people involved.
“It depended then who I was talking to. Talking to the surgeons here, they said things like ‘Yes, we know about this procedure but we don’t do that here.’ When I said ‘Why not?’ they told me that the procedure is too new. I couldn’t comprehend that – this procedure has been done for fifteen years. In fact, we have fifteen-year longitudinal studies on women – the big studies with significant amounts of women – which show that the recurrence rate of cancer for radical mastectomy and skin-saving nipple-preserving mastectomy is exactly the same.” The question that Melanie then had for the clinicians and administrators in the Ottawa hospital system: At what stage do we accept something that’s new? Is it twenty years, forty years? The speed of change in medicine is fast. When do we change?
“Here we have a procedure that’s not yet standard and we have a lot of older surgeons not doing it. But the NCCN [the National Comprehensive Cancer Network], the major cancer organization that sets out guidelines for surgery in the cancer field, has accepted it and written guidelines on how to conduct it safely, and our provincial government has agreed it’s safe. What more do we need, to consider this procedure safe for people in the Ottawa area?” The answers being given to these questions are currently far from satisfactory.
So what’s happening now? “Administratively, one of the problems I see is that most surgeons are General surgeons. Unless you are highly specialized, you’re a General surgeon so you’re not trained with the depth of knowledge one has to have to do breast surgery nowadays. Breasts used to be thought of as easy because they don’t involve the interior body cavity. Yet right now New Orleans is doing advanced micro-surgeries for breast care, so that you’re just losing the areas – with good margins, of course – that are affected by the cancer. So you’ve got all these developments, and we’re still removing breasts here! We’re not recognizing that the General surgical model doesn’t work anymore. The surgeons in the Breast Centre have other specialties – hand, colon, whatever. The breast is in need of being a sub-specialization.”
Melanie has given a great deal of thought to the need for this choice.
“When we’re thinking about the increase of breast cancer patients, and within that, the increase of young people with cancer, we’ve got to think very clearly about the types of options that we provide them. In these newer surgeries, after the surgeon comes in and removes the cancer, they are followed by the plastic surgeon who inserts an implant. When you wake up from your surgery, you walk out of the hospital with breasts. You never have the feeling, as the patient, that you’ve just lost something. The feeling you have is that you have really great breasts when you come out: twenty-year-old breasts, in fact!”
Determined, after her talks with surgeons Melanie moved up the administrative chain.
“I took it to the head of the hospital, and had a meeting with her. It went well. I told her about my own story, told her that this was a big problem considering the demand for this surgery, and that we need to do something about it – the level of breast health in our area was not sufficient. She said that she understands the concerns and that she would help us to make this surgery one of the priorities for the next surgical hire in the fall of 2012. She also said they’re opening a new breast cancer centre so they would make that the object there as well.
“The important piece of this is that, upon diagnosis, most women are referred to a surgeon first: they are the ones who should be giving women all of the options available not just in Ottawa, but more generally. Because if the surgeons aren’t giving the options, women aren’t hearing about them, and not every woman has the time or inclination to do the amount of research I did. That means that in my area, we’re still at a stage where the information about these surgeries is not sufficient.
“We’re now working hard to make these choices happen. Meanwhile, the surgeons have all this power. So the only thing left for me to do is to put myself on as many patient boards as possible.”
But even that’s not enough, Melanie feels.
“Also I want to do some work outside of that. I want to make a very short film and make it viral on the internet. I want to get EVERYBODY to watch this short film, so people everywhere, but also here in Ottawa, know what’s happening and are aware that this surgery exists, and know they have options to a radical mastectomy.
“If we had a truly people-centred model of health care, it would have reduced my stress levels so enormously. If they had told me from the beginning here at home, ‘You know, there’s a procedure we think you might be interested in. You’re a young woman. Here’s what you can do: you can also have a skin-sparing nipple-sparing mastectomy. But we’ll refer you to Toronto or Hamilton, and see if you want to think about this more.’
“That would’ve been the best way to deal with my breast health: to say, ‘I don’t do this, my colleagues don’t do this, but let me put you in touch with someone who does.’ But that didn’t happen. They were so concerned about cancer control based on knowledge from ten to fifteen years ago, that their vision of cancer control didn’t reconcile with anything but the radical mastectomy. They’re ten to fifteen years behind. And I wonder: Who holds them accountable?
“I was talking to someone high up at the hospital who said, ‘We can’t force these surgeons to talk about surgeries they don’t perform,’ and I said, ‘Excuse me, your responsibility is not to the surgeons but to the patients – to make sure the patients coming in and out of this hospital get the best treatment possible. And if that means revoking a surgeon’s privileges because they are not giving patients the best information possible, that’s what you have to do.’
“A lot of women are still getting the message that this procedure is more dangerous, though when performed in the right circumstances, it isn’t. But this surgery isn’t for everybody. Depending where their cancer is, it may not be possible to spare the nipple – for instance if the cancer’s really near the milk duct. So what I’m advocating for is informed consent. We don’t have informed consent right now. It’s quite problematic.”
Fortunately, Melanie Adrian is not one to give up. Thanks to her efforts, informed consent for all breast cancer patients is now coming a whole lot closer.
You can reach Melanie at email@example.com .