A Perfect Storm In The DCIS Sea of Uncertainty: Kellergate
– Edmund Burke
Note: 2 points repeatedly made in the Keller posts are not just inaccurate; they are dangerously wrong.
- Although Lisa has stage IV, incurable breast cancer, she is not dying. Her condition can be treated but not cured. A woman in her 40s with three children at home, she has pursued medical care that both extends her life and improves its quality. Many women do the same and live for years with metastatic breast cancer as demonstrated by the long participation of members of our CLUB-METS-BC online community, all women with stage IV BC, who live a rich life while dealing with this terrible disease. A 22% 5-year survival rate is not equivalent to an immediate or even certain death sentence.
- Palliative care is not JUST terminal care, nor hospice care. In the last few years we have witnessed a significant push to include palliative care, a form of treatment that strives to match care to patient goals, relieve pain, and improve quality of life for people with advanced chronic or life-threatening illnesses, as standard of care, regardless of prognosis, for cancer patients suffering from often debilitating pain.
Much has been said about Kellergate, the tone-deaf, unethical, vitriolic opinion pieces of Emma Keller and her husband, both attacking Lisa Boncheck Adams for being too public about her life with metastatic breast cancer (“Should there be boundaries in this kind of experience? Is there such a thing as TMI?”). The startling false assumptions (see note below), the unusual level of violence of the Keller reactions to Lisa’s regular stream of consciousness, and their strange and continuous insistence that Lisa is dying made me look for an underlying and undeclared cause.
One aspect has been almost lost, or at least has become irrelevant in the continuing brouhaha about social media. Both Lisa Adams and Emma Keller were originally diagnosed with Ductal Carcinoma In Situ (DCIS). DCIS is a non-invasive form of breast cancer, whose diagnosis is almost exclusively from mammograms.
The DCIS Sea of Uncertaintly
In the world of cancer, the efforts to achieve early detection have made clear-cut, black and white risk assessments a fantasy. While a few specific sub-types of cancer can be properly diagnosed with a minimum number of bio-markers, in most cancers, we are increasingly faced with the reality of a big gray zone—a broad spectrum of pathologic findings between normal tissue and invasive cancer and of genetic tests that can initially help but may become irrelevant as tumors keep on mutating. DCIS is the poster child for the resulting Sea of Uncertainty.
Some lesions will progress to cancer, others will not. Some women with DCIS will develop cancer elsewhere in their breasts, whereas others will not. (Some women will develop distant recurrences while most won’t). And no one is sure what the chances are for any given individual.
Although no one is sure what the probability of progression is, studies of DCIS that were missed at biopsy and the autopsy reservoir suggest that the lifetime risk of progression must be considerably less than 50%.
In 2014 uncertainty will still reign supreme for more than 57,000 American women diagnosed in the gray zone of non-invasive DCIS. Virtually all of them will get some surgery due to the uncertainty.
As the 2006 article said
“It’s time to figure out whether they really need surgery or whether all they really need is repeat mammography (or magnetic resonance imaging)”. In other words, should they be treated for breast cancer or should they just be treated as individuals with a clearly elevated risk for an invasive form of the disease? “Because the prognosis for women who are treated for early-stage breast cancer is so good, it’s reasonable to test a strategy of active surveillance for DCIS”.
It is, therefore, not surprising that, among women with DCIS, having to adapt to life in this gray zone can easily leads to anxiety. To add to the complexity, while in a sea of uncertainty, we all need an anchor.”
Like many other aspects of human behavior, psychologists say anchoring is just one way the brain makes sense of the world. We assume the information we are given is at least somewhat accurate, and therefore use that as an anchor around which to evaluate new information or make informed guesses. Like other subtle biases, anchors influence people at an unconscious level.
DCIS has a generally favorable overall prognosis, with
- a systemic recurrence rate of approximately 1%,
- a local recurrence rate after mastectomy of 1%, and
- a local recurrence rate after breast-conserving treatment of less than 10%.
Studies have suggested that women with DCIS may overestimate their risk of disease recurrence. One such study showed that for women interviewed at enrollment:
- 54% perceived at least a moderate risk for DCIS recurrence in the next 5 years,
- 68% perceived at least a moderate risk for DCIS recurrence in their lifetime;
- 39% perceived at least a moderate risk for invasive cancer in the next 5 years,
- 53% perceived at least a moderate risk for invasive cancer in their lifetime; and
- 28% perceived at least a moderate likelihood of DCIS spreading to other places in their body.
At 18 months after enrollment, perceived risks had not statistically significantly changed from those at enrollment, although anxiety has leveled off. Nonetheless,
Anxiety at enrollment was the factor that was most consistently and strongly associated with overestimation of future breast cancer–related risks, of invasive breast cancer within 5 years, and of invasive breast cancer during lifetime.
All of this fits what I remember following my wife’s diagnosis with DCIS 18 years ago and the following harrowing experience, trying to make sense of the “cancer” diagnosis and of the various possible treatments. The initial period where you have to understand enough about a scary and unknown disease, followed by the decision period where you have to build your psychological strength and feel OK with the hard decision you are going to make. And then the deep anxiety & the never-ending questions you experience post treatment
- Was it the right decision?
- Could or should we have done this differently?
- Will it recur?
We opted for a lumpectomy and radiation, which turned out to be already much harder on the patient than what health care professionals had made us understand, as always seems the case. In other words, we opted for the least invasive treatment available at the time.
Emma Keller DCIS
My cancer lasted 40 days. The relief … I can’t describe.
“after an abnormal mammogram reading, an “ultra-cautiousness” led to a second mammogram, two biopsies, and a bilateral mastectomy and reconstruction, all of that in 42 days!
Months after that “brutal surgery“, in late 2012, she wrote another column “Why gamble with breast cancer?“, already telling us of her greatly exaggerated assessment of the risk of DCIS becoming invasive cancer, which, IMO, can only be associated with both an undeclared, personal great fear of recurrence and a clear case of anchoring bias:
It was a brutal ordeal, full of complications and setbacks. Almost nine months later I’m still recovering. Before my surgery my American doctors gave me as much time as I needed, and as many explanations as I asked for, but they still didn’t give me the full picture. I was never told about fluid buildup, or weird lumps, or infections – all of which I suffered. They never described the enormity of the scars or how devastating the whole experience could be. They didn’t talk about months of overwhelming fatigue. Instead, they painted a rosy picture of a brand new set of beautiful breasts that would be cancer-free for ever.
It’s the “cancer-free” that fills me with comfort now. I knew the statistics at the time. I knew that 50% of DCIS (ducal carcinoma in situ or non-invasive cancer of the milk ducts) didn’t grow, or grew so slowly that the chances of it killing a patient were minimal.
But 50% of it does grow, it does become invasive. Do you want to play those odds? I didn’t.
That last sentence is a follow-up of what she wrote in early 2012, to validate what many would consider an heroic treatment for an early stage cancer:
I had literally a few non-invasive atypical cells in one breast. It was what my radiologist described as “breast threatening, not life threatening”. Of such cases, 50% never grow into anything; and when it does, it grows so slowly that, in the UK, women over 70 years old are advised not to seek treatment for it.
For women in the US, there are two ways of treating DCIS: lumpectomy with radiation, if the cells are in one spot; mastectomy if they are present in more than one quadrant. My cells were scattered all over the place. I had no choice. Mastectomy was presented as my only option.
So, four weeks after the diagnosis, I was on an operating table in Mount Sinai Hospital in New York, undergoing a 12-hour surgery that involved three attending surgeons (one oncologist, two plastic) working simultaneously on my body, as they removed all my breast tissue (surgeon 1) and then, with an incision that runs from hip to hip, took out my stomach fat (surgeon 2) and placed it where my breasts had previously been (surgeon 3). The operation is risky enough – the veins and arteries from my stomach had to be reconnected to those in my breasts so that the flesh would live – that I was required to spend two days in the ICU.
Five days after surgery, I was pronounced completely cured. I didn’t need chemotherapy or radiation. I will never have to have another mammogram, ultrasound or biopsy. My cancer doctor was done with me. I haven’t seen her since she came to my room to give me the all clear.
My cancer lasted 40 days. The relief … I can’t describe.
My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable. I wish both had been less. But given my options, I am comfortable with my choice.
I wish there had been another option, though. I wish there was a way of eliminating these cells without taking out so much of my body. I wonder how long it’ll be till that option exists?
The stage is set pretty clearly. Emma Keller’s narrative is clear: “I had DCIS and it’s now gone. I accepted to get brutal, deeply traumatic treatment at a very high cost, both personal and financial, so that I could say “I had cancer!”.
Putting all of this together, it has been hard for me to forget one of the DCIS Sea of Uncertainty researchers conclusion: patients’ grossly inaccurate perceptions were consistently associated with greater anxiety.
And what happens when a sister in arms, Lisa Boncheck Adams, a powerful writer and a person who digs human psychology and science, erupts many times daily on the Internet, all about the effect of a metastatic recurrence following an initial DCIS diagnosis? Her tweetstream reminds us all constantly of the deep doubts that are the new normal for all those who have navigated in the Sea of Uncertainty. Was the brutal ordeal really worth it, if there is still a risk of recurrence? Did I make the right choice? How can I live everyday with these constant reminders?
Cancer and its treatment can result in a wide range of physical and psychological problems that do not recede with time. Some of these problems emerge during or after cancer treatment and persist in a chronic, long-term manner. Other problems may not appear until months or even years later. Regardless of when they present, long-term and late effects of cancer can have a negative effect on cancer survivors’ quality of life. Particularly when there is chronic denial of these negative effects by the patient.
In conclusion, should we consider social media exposure as a new risk factor for people who suffer from deep, undeclared anxiety resulting from the Sea of Uncertainty associated with early diagnosis? The irrational, violent and mean reaction of Emma Keller has made me think this should be an area of interest for researchers. Bill Keller, plain bully, doesn’t even deserve this excuse.
- Anyone interested or worried by the fear of recurrence should download the excellent American Cancer Society “Living With Uncertainty: The Fear of Cancer Recurrence“
- Much work has been done to create validated scales to assess the fear of recurrence of cancer patients. Have a look at “The Concerns About Recurrence Scale (CARS): a systematic measure of women’s fears about the possibility of breast cancer recurrence“, “The cancer worry scale: detecting fear of recurrence in breast cancer survivors“, [Spanish version of the Cancer Worry Scale (CWS). Cross cultural adaptation and validity and reliability analysis] and “Fear of Cancer Recurrence Inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence”