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“Why Did This Happen to Me?”

“Why Did This Happen to Me?”

Don S. Dizon, MD, FACP

@drdonsdizon
Apr 09, 2015 11:18 AM

That question is perhaps the most common one raised by patients facing a diagnosis of cancer for the first time. There are so many campaigns about how to “avoid” cancer: no white sugar, no chemicals, all-plant diets, regular exercise, don’t smoke, don’t drink. I can see how one can get the impression that if one does all of it, cancer will never touch him or her. Yet, every once in a while, someone comes to my office who drives home the message that all most people can do—and all most clinicians can advise—is risk reduction, not prevention. Such was the case with Laurie*.

Laurie was in her early fifties, the mom of twin girls. She had prided herself on being a health nut—aerobic exercise in the morning, yoga in the evening. She did not eat red meat and didn’t drink alcohol. Her family adopted an organic diet; she even grew her own vegetables. She was proud of her reputation as the “healthiest mom on the block.” She had told me that others in her little town often sought her counsel about how to get healthier.

Then, she found a mass in her breast. At first, she couldn’t believe it, thinking it must have been a blocked duct. However, it grew with time, and eventually, a mass appeared under her axilla.

By the time she was diagnosed she had a 5cm breast mass and at least two sonographically suspicious nodes. A biopsy confirmed triple-negative breast cancer. She was devastated. Even more, she just couldn’t understand how this happened to her.

“I’ve done everything right—my cholesterol is perfect!” She exclaimed. “I’ve never been sick and neither have my kids. How did I get cancer?!”

I started to answer, but she went on. “Do you think I’ve been exposed to a toxin? Something in the water? Can we check my body for poisons?”

It was clear she was anguished—I got the feeling that she wanted to know more than how this happened—she had to know why this happened. I suspected this was being driven by a desire for a clearer sense of what she did “wrong” to get cancer. Yet, her questions also made me wonder if she needed to know because she wanted to be able to answer the inevitable question of others: “What happened?”

While I am a proponent of healthy lifestyles, cancer screening, and moderation, in general, I have seen how our conversations about risk reduction and cancer prevention can be very distressing to those already diagnosed. “Mammography saves lives,” “one-third of cancers are preventable”—these are messages that resonate and are likely true for populations. But, at the individual level, and for the newly diagnosed patient, they are just not that helpful. So, as I sat there talking with her, seeing her look of worry and concern, I wanted to make sure one point was clear— She did nothing wrong. She did not cause this cancer.

“Living well, being healthy, is and will continue to be so important for you,” I explained. “And I mean, beyond cancer. Think of your heart, for example. Heart disease is still the number one killer in women, after all. For women with cancer,” I continued, “staying active can keep you from getting tired during treatments, minimize the negative impact from medical treatment, and help you recover from surgery.” I went on and reviewed the data about how being healthy is associated with improved survival after a cancer diagnosis.

“I don’t know why you got cancer. We know that most are sporadic, and sadly, healthy people do get cancer,” I continued. “I have had many patients who have healthy lifestyles low in meat and high in green vegetables, some who had kids young and breastfed—all factors that are associated with a lowered risk of breast cancer. I don’t know why they got it, and I don’t know why you did either. If I knew that, I’d win the Nobel Prize. We just cannot explain why cancer happens to any one individual absent of a genetic risk.”

As we concluded our visit and made plans to begin neoadjuvant chemotherapy, I had hoped she was satisfied with my answers and that in some way, I helped alleviate her distress. But as she walked out, she appeared to still be in the shock of the initial diagnosis and fixated on the question, “why?”

Patients like Laurie reinforce my belief that in our quest to deliver messages on healthy lifestyles, we have made risk reduction and early detection synonymous constructs, which they are not. None of us can guarantee cancer prevention for any one individual patient, short of prophylactic surgeries in the context of a high risk of cancer (for example, women with a BRCA mutation in whom oophorectomy and mastectomy are options). I think we need to be more consistent and clear that the steps we take today can lower our chances of getting cancer not prevent it. I think framing issues like this would have helped Laurie and others like her. Cancer is a hard enough diagnosis to hear, and blaming one’s self for it is certainly something we should help our patients avoid.

*Name and details changed to protect patient identity.

Comments

Nathan A. Pennell, MD, PhD

Apr, 10 2015 8:53 AM

Great story as always Don. It is interesting to hear that even patients like the one you describe feel guilt and self-blame over developing cancer. For my lung cancer population, aside from the occasional never-smoker I never hear the question "Why me?". And I wish they would ask that because every patient needs to know that this isn't their fault and that carrying guilt greatly increases the already unimaginable burden they carry in fighting their disease. The general media message that living well and practicing prevention can prevent YOUR cancer has the ugly flip side that when it happens anyway you must have done something wrong, and we need to ensure people know that simply isn't true.

Don S. Dizon, MD, FACP

Apr, 11 2015 7:39 AM

Hi Nate: Excellent point. Some of us are so specialized within oncology I have to remind myself that my own experiences reflect the population I am helping. I assume that all patients impacted by cancer have the same question, but at least for my own patients, it is one that they ask quite often. I remember reading about guilt and cancer and examples in thoracic oncology where patients with newly diagnosed lung cancer would be asked, "how long have you smoked?" Not even- did you smoke. These assumptions go far beyond oncology and are present in our society. Perhaps we can set about a new public health message to go alongside the messaging about risk reduction and prevention- Cancer is Never Any One's Fault. D

Patricia Stoop

Apr, 11 2015 2:42 PM

I am living with metastatic cancer and recently an ad started rolling in Canada stating that 30% of breast cancers are preventable. It really hit me hard. Then I found out it's based on a popluation study so it doesn't necessarily relate to individuals. However it's laden with guilt for those already with cancer.  I agree wholeheartedly that along with any initiatives that advocate prevention there be a statement that "it's never anyone's FAULT" when they get cancer.  At my biopsy I recall the radiologist telling me to avoid the internet. Best advice ever.  "It's just a crap shoot and you got a bad roll. Don't blame yourself." Of course so much info provided to me after that seemed to scream "its all your fault!" Especially information in the complementary/alternative cancer treatment world. I would be reading a book on healthy diet for cancer with tears running down my face. My husband would take it away and throw it out. His advice - just be reasonably healthy - you know what to do. Eat well, sleep well and exercise. It's very difficult to get through and past the "why?" 4 years later and I'm still processing it.  Patricia , B.SC.OT

Don S. Dizon, MD, FACP

Apr, 11 2015 5:15 PM

Dear Patricia; Thank you SO much for your voice in this conversation and I hope others read your words. Even after cancer, there is so much about "preventing" recurrence. Even there, nothing prevents recurrence. All we can do is risk reduction. Your husband sounds really wise and I agree with him- Healthy Living is important - for health, beyond cancer and moderation is key. Eat well, sleep well, and exercise. Sounds just like what my mom would've said to me so long ago- come to think of it, she did! Best advice I ever received. Best to you too. D

Janet Freeman-Daily, MS, Eng

Apr, 11 2015 2:00 AM

Thank you, Dr. Dizon, for voicing the anguish faced by so many cancer patients.  Epidemiology uses correlation to suggest steps that may reduce our risk of cancer, but no matter what we do or how we live, we cannot prevent all cancers.  As we age, our cells acquire random DNA errors, and some of these can cause cancer.  It's rare that anyone can PROVE what caused a specific individual's cancer to happen at the cellular level.  Yet the word "prevention" implies that we cancer patients should have done something more to stay healthy--it blames the patient for getting cancer.  Prevention language is especially problematic for lung cancer patients, who are frequently asked (even by total strangers) if we smoked.  How many people realize that lung cancer in never smokers is the sixth leading cause of cancer deaths?

All any human can do is reduce our risk of cancer.  I would love to see the term "cancer prevention" disappear. We cancer patients don't need the added burden of guilt implied by "prevention" language.

Don S. Dizon, MD, FACP

Apr, 11 2015 7:45 AM

Dear Janet, thank you for your perspective on this too! I just commented to Nate Pennell the same stories I have heard- as you ahve experienced. I think Prevention has a place in population health, but agree- the term is less useful when sitting in front of any one person who wants to avoid cancer. There, a more nuanced approach is necessary: ways to reduce risk is more relevant and I daresay, even truer, than you "can prevent cancer by..." The issue is faced by our patients every day, as you and my own patient I talk about illustrate. Best for you always... and see you on twitter! D

Alene Nitzky, Ph.D., RN, OCN

Apr, 11 2015 9:55 AM

This response is not unusual, trying to figure out what could have prevented the cancer is just the beginning of processing the shock, and we need to remember that this patient will continue through a process of grief and whatever degree of understanding and acceptance that they can reach. When this patient walked out still focused on trying to figure out how she could have controlled the situation, it would be helpful to refer her to someone who could educate her further, at a time when she is ready to listen and absorb information. Patients will not remember or absorb all the details at first, they need an advocate with them, or to be referred to a source of support. If survivorship care is to start at diagnosis, then we need to provide a referral immediately. I am an independent health coach and I specialize in working with people with cancer. My biggest challenge and frustration is with oncologists and physicians who won't give me the time of day to listen to how I can help their patients. "Too busy" is not an acceptable excuse. Why did we go into medicine if we are not there to optimize outcomes for our patients and to soften the blow in any way we can when they receive such a life-altering diagnosis? If doctors are too busy getting to the next appointment to care for their patients' psychosocial needs, then they need to make time to make themselves aware of resources for their patients. Or designate staff to do so. And the big "Cancer centers" are not always doing a great job of navigation, support, or education either... My point is, oncologists need to think about ways they can alleviate distress on day 1. Thank you for listening.

Don S. Dizon, MD, FACP

Apr, 11 2015 10:39 AM

Hi Alene- Thank you for posting and highlighting the need to manage psychosocial distress. I think too often there is a sense that the shock with fade and one gets "used to" or accustomed to being a patient with cancer. I was at a conference where a woman with a prior history of ovarian cancer stood up and told us, "I had to learn to be a patient with cancer." It dawned on me that no one comes in to a cancer diagnosis with any education on what that means and how it's treated. As an oncologist I spent four years in medical school, three years in residency, and two years in a medical oncology fellowship learning it. Yet, with this one woman's comment, I realized how much my own patients did not know- especially around the time of first diagnosis. Beyond distress, I am interested in the whole idea of helping people learn to "do" cancer, from the time of diagnosis. In addition, though, you highlight another big area of need- survivorship care from the start of diagnosis. It's so entirely relevant, and the distress with the initial diagnosis is as great as the distress that follows the completion of treatment and the time of metastatic disease's diagnosis too. We need to work together- with patients and other advocates- to bring better cancer care to all, across the disease spectrum. D

James Randolph Hillard, MD

Apr, 11 2015 4:59 PM

In one sense, I do know "why me."  I was infected with helicobacter pylori.  I had an aunt who died of stomach cancer.  If I had been tested and treated for H. pylori twenty years ago when she was diagnosed, I would not have gotten stomach cancer (intestinal type adenocarcinoma of the pylorus).  I know that nothing in medicine is 100%  certain (I am a doctor, as well as a patient), but my cancer's having been caused by Helicobacter infection is pretty close to being certain.  Of course, I have felt angry at my doctors for never having tested me and at myself for never having known about, and demanded, testing.  My missions in life are now to: 1) raise awareness of H. pylori and stomach cancer both among doctors and among the general population, and 2) to increase screening and eradication of H. pylori, at least in high risk groups.  Sublimation and altruism, supposedly among the healthiest coping mechanisms. 

But still, all that does not exactly address the question of "Why ME?"  My father lived to be 90.  My mother is alive and well at 91.  I had always assumed that dismal prognosis illnesses were something that lurked somewhere in the infinite furture;  not now, not for ME.  The unpredictability of life and the inevitability of death:  I would, of course, have gotten the answers right on a multiple choice test.  But still.......

Just to keep getting stuff done every day, you cannot keep in mind all the time how unpredictable, and inevitable, life is.  (Perhaps Buddhist monks can do that, but I doubt that even devout Buddhist laypeople can.)  Doing everything to insure your health, may make you feel less vulnerable.  It is the most natural thing in the world to look for somebody to blame when something bad happens to you.  (In America, it seems like the most natural thing in the world to look for somebody to sue when something bad happens to you.)  If you cannot find somebody else to blame, it is natural to blame yourself.  But obsessive blaming of yourself cannot lead anywhere good.

If we were priests or ministers rather than doctors, we might remind patients that God "maketh His sun to rise on the evil and the good, and sendeth rain on the just and the unjust."  But we are doctors, all we can do is to know that our patients will initially, inevitably, blame themselves and/or others.  We can empathize with these feelings, while emphasizing that illnesses are fundamentally just manifestations of how the body works and are fundamentally nobody's fault.  I agree with everything that Dr. Dizon describes having done with his patient.  A quotation sometimes attributed to Sigmund Freud (although I am doubtful about the attribution) states that "We [as doctors] can do precious little [in helping patients deal with the fundamental questions of life], but what little we can do is precious."

Don S. Dizon, MD, FACP

Apr, 11 2015 5:21 PM

Dear Dr. Hillard: A wonderful post on its own right. Thank you so much for your comments. It's amazing how much we are learning about cancer every day. Life is certainly unpredictable and it might be human nature to find someone else to blame, and not able to do that, to deal with self imposed blame. However, as Nicki B. Durlester (@NickiDurlester) said on Twitter: ...no guarantee for anyone, even those who make preemptive surgical strikes. Self flagellation is pointless." My best, DSD

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