If demanding to be involved in treatment decisions is considered defiant, I'll be defiantly alive.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
Let's get this straight. I have stage 4 breast cancer. I know what that means. The cancer has spread beyond my breast and it is incurable. I know it can roar back at any time. And I know that the cancer will eventually kill me.
Here's the other thing we need to get straight. I know I'm in for a long haul. I know that the cancer learns the treatments I’m given, and I’ll need to switch treatments again and again. I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer. I know all the bad news. And the bad news that I don't know, I don't want to know.
But here’s the real deal, I want to live. I want to color my hair purple, or any other shade I please. I want to focus on days I’m not crippled by exhaustion. I want to be able to enjoy walking around the city, while I can. I want to travel to Toledo or London or Austin or even Bermuda. Yeah, Bermuda. I want to sit in my garden, read a good mystery, and not think about cancer.
I want to live, and I will do anything I can in order to stay alive.
This brings me to the latest in breast cancer news. In July, the Wall Street Journal (WSJ) published an article with the headline Defying Doctors: More Women With Breast Cancer Choose Double Mastectomies
. Articles about mastectomies are not uncommon. In fact, these articles seemed to have proliferated after Angelia Jolie chose to have a prophylactic double mastectomy after testing positive for the BRCA
gene mutation. But what struck me about this headline was the use of the word "defying.” The impression left by the use of this word? Doctors are the parents, and their patients are their defiant children. Who do patients think they are? Adults? Independent decision makers? How dare they?
Certainly, when I asked my oncologist about a mastectomy, she worked hard to dissuade me. I am part of a small group diagnosed with stage 4 breast cancer from the start (most breast cancer patients are diagnosed at an earlier stage, although 30 percent of all diagnosed with breast cancer will eventually move on to stage 4). My oncologist was worried that if I had the surgery, and an infection flared, I would not be able to receive possibly-needed systemic chemo. She questioned why I wanted such a radical procedure, telling me that, at this point, the focus was to keep the cancer at bay elsewhere in my body. She stressed that the likelihood of another primary cancer appearing in my breasts was very low.
All valid points. All reasonably stated. But my reply to her final point was fast and adamant.
"Even if it's rare, if another primary developed in my breasts, that would piss me off."
That gave my oncologist pause. In the end, though I trust my oncologist’s extensive knowledge, the decision was ultimately mine to make.
And this respect of the patient as decision maker is apparently part of the trend in mastectomies. Deanna Attai, president of the American Society of Breast Surgeons, noted in the above WSJ article, “We are no longer practicing medicine in a paternalistic fashion, and at the end of the day, it is the patient’s decision. Attai continued by saying that since medicine can’t guarantee cancer won’t develop in the healthy breast, she is obligated to defer to the patient’s wishes. In the same WSJ piece, Clifford Huddis from Memorial Sloan Kettering Cancer Center observed, "The patriarchal allegation has moved 180 degrees. It used to be, ‘How dare you say my breast isn’t important and make me lose a breast to mastectomy?’ Now, decades later, the allegation is, ‘Why do you care so much? It is my breast.'" And he is right. It is my breast. And it is my life.
Certainly, I have my emotional reasons for choosing a bilateral mastectomy at stage 4. But ultimately, I made the decision based on reviewing the medical literature. That’s right. I reviewed the medical literature, thanks to PubMed.gov
and other authoritative medical sources.
In my review of the literature, I found a 2008 study published in the Annals of Surgery, Surgery Improves Survival in Stage IV Breast Cancer
that indicated, “Surgery was associated with better survival outcome, even after controlling important variables such as age, race, ER and PR expression, number of metastatic sites, and presence of visceral metastases." Of the 242 patients observed and followed in this study, 188 had had a mastectomy, and they tended to do better overall.
The 2008 study goes on to state, "From a basic biology point of view, a number of studies have shown that some tumors, including breast carcinoma, can induce an immunosuppressive state in the host. By reducing the primary tumor burden in stage IV breast cancer patients, it can be hypothesized that the immune response may at least partially recover and allow the body to assist in controlling metastatic cells."
But then in 2013, at the San Antonio Breast Cancer Symposium, another study
, this one from India, was announced showing that patients who received no surgical intervention had no worse survival than those who underwent mastectomy. The release of this study seemed to come out of the 2013 Breast Cancer Symposium as a final decision. It was proven definitively. There was no reason to perform mastectomies on stage 4 breast cancer patients except for palliative reasons. Yet this was just one study, and it had the exact opposite findings from the 2008 study. Which study was correct? How are patients to decide? Typically, the goal of scientific research is to replicate findings multiple times in order to validate results, arming medical doctors with clear, evidence-based guidelines for treatment decisions. How could just a few studies on the effect of mastectomies on stage 4 breast cancer patients be the final word? There needs to be further study.
But more research of mastectomies in metastatic breast cancer patients is unlikely to happen. Metastatic breast cancer-focused research made up only 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. And the little metastatic research that is funded is very basic
This means that metastatic breast cancer patients often become a clinical trial of one, the findings not aggregated, not published to the world. Oncologists treating metastatic breast cancer patients do the best they can with comparatively small amounts of research data in this field. Treatment can become a bit of a guessing game, oncologists doing what they can to keep patients alive and living relatively well.
So how was I to make such a grave medical decision for myself, considering the limited resources available? In reviewing the results of the 2008 study, I brought together this study’s results with the findings of other studies regarding tumor load and single metastases. Just like my oncologist, I worked with the information I had, and decided that decreasing the possible tumor load in my body might give me a better shot. A shot at living longer. And that is my goal, to live longer.
I made an adult decision based on available research data in metastatic breast cancer, and based on the fact that I was disease stable and in relative good health. I requested a bilateral mastectomy. I knew it would be tough surgery, but my life is worth it. I feel like saying that with pointed pauses.
My ... life ... is ... worth ... it.
Luckily, I had chosen an oncologist who respected my choice. After hesitation, and once my cancer was clearly stable, in August 2012 she agreed to sign off on the surgery. I am grateful for her respect and her extensive medical skills.
Dr. Bernie Siegel, the author of Love, Medicine and Miracles, observed in his work with cancer patients that a group he calls the "Exceptional Patient" had the highest survival rate of all the patients he treated. The Exceptional Patients insisted on being part of treatment decisions, and were perceived as noisy and demanding. Another way to refer to these traits? Defiant.
If the medical community views my choice of a bilateral mastectomy at stage 4 as defiant, so be it. I will continue to choose medical teams who work with me and respect that treatment decisions are ultimately mine to make. I will continue to respect my medical team’s expertise — I did choose them for their skill, after all. I will continue to be demanding about my care. And I will make lots of noise. Call that defiant. Call that difficult. I call that defiantly alive.