Saturday, November 5, 2011

The "Cancer" Conversation

The "cancer conversation" can be a focal point of stress for me, personally. It is not that I don't or won't converse. When specific, non-judgmental inquiry is initiated I do not have any qualms about answering. The open-ended "how are you feeling"? Or the blatant, expectation for me to "dish" - I can feel my emotional protective wall envelope me. Not because I am protecting myself from the inquiring person, but because I am protecting myself, from myself.  More so when family "expects" me to be the one to initiate the discussion. I also, selfishly, (and I do use that description quite a bit when trying to express how I am dealing with my chronic illness. Not because I am being self-deprecating, but because cancer is a "selfish" state of being) squirm at the thought of having to deal with the inquiring persons reactions.

Then there is the discomfort of the unknown. When presented with the open-ended query of: "how are you feeling [or doing]"; I am not sure just how much the inquisitor really wants to know. We live in a society where the perfunctory start to every conversation, whether it be with the SB Barrista, a client, an adversary, or a BFF, starts with "how are you"
In short, its complicated
The below synopsis, of a study conducted by The University of Texas' study on cancer communication, delves into the complexity of this "conversation."

Reprinted from "Navigating Cancer" - October 12, 2011

Some people choose to discuss their health concerns with those who are closest to them. Others prefer professional counselors, support group members, other survivors, or acquaintances made through the Internet. Not everyone finds the connection they need from the same source, and the depth of the conversation will vary as well.

Communication about an illness was the focus of a study conducted at The University of Texas which provided interesting results. Researchers specifically looked at patients asserting control over how they chose to discuss their illness, or chose not to discuss it. The overall findings suggest when patients assert control over communication it helps to overcome feelings of helplessness. In this way patients can determine an aspect of how they want to face the challenges of their diagnosis.
Erin Donovan-Kicken, assistant professor of communication, led the research to examine the strategies people with cancer use to communicate with family, friends, and colleagues. Donovan-Kicken and her team interviewed cancer survivors on how they approached the topic of their diagnosis with various audiences. The team gathered data regarding the advice patients received, the challenges they faced, and the recommendations they would make when talking about a disease. The participants were also asked to evaluate existing patient literature and how they managed information about their illness.

The study results indicate that asserting control over communication is an important factor for patients coping with the stress of cancer. Yet despite best efforts to control that communication, patients can’t control other people’s reaction. Patients will benefit from setting boundaries with family and friends when they need space to be ill or feel emotional in private. They should be allowed to focus on themselves without needing to support others, and to avoid people who are overly solicitous. Choosing not to engage in social discussions about an illness can prove to be an empowering decision for some patients.

Ultimately Donovan-Kicken’s research defined the difference between asking –
“Are you opening up to people?” and
“Do you have people you can talk to if you want to open up?”

The distinction is note-worthy for oncologists and survivor advocacy groups who counsel and provide support to patients. Patient literature could also be refined to emphasize what is meaningful about communication from patients’ perspectives. It could include suggestions on how to manage or withhold from personal health discussions, and establish boundaries allowing patients to experience their illness in a way that best suits them.


  1. Oh, this is a topic near and dear (well, perhaps not so dear!) to me.

    I am one of "those" people that hyper-selects with whom I discuss my BC. And because I have been like this from the get-go of diagnosis, people do *not* tend to ask me many questions. At. All.

    Even though I am still going through reconstruction and have at least 2 more surgeries ahead of me.

    Sometimes, though, it seems painfully inappropriate or uncaring when people very close to me never ask, ever, how I am doing or feeling.
    I read people well enough to know when they are afraid to say something or, worse, don't really care to know, and so I keep quiet with those folks. And I let it out in my blog or with my BC sistahs or my husband or only my closest friends and family.

    Thanks for writing about a topic that all us BC patients can relate to and have experienced to one degree or another! ;-)


  2. Renn ~ so glad to hear from you. This is a topic that is becoming more acute as I travel further down this rabbit hole. I know that I am not done with this topic for consideration, so stay tuned in. :-}}

  3. Thank you TC for these insights into communication about your illness. For friends and family members who care about you and want to be supportive, it is so helpful to know how we can best do so.

    To Renn I would say that it is difficult for your supporters to know how and what to ask, afraid perhaps to be too intrusive, or on the other hand, not caring enough. Direct input from you would help them communicate with you in the way that supports you best.

  4. TC, Oh this is one of those topics that can really get me going too! It's really really hard to know what "proper cancer communication is. Some people ask how you're doing, but clearly don't really want to know. Some people don't ask for various reasons. Some people want to know bits and pieces. I have members in my own family that never ask anything. Well, you get the drift. I wrote a post on this topic once about sharing the cancer details. Here's the link if you're interested. Thanks for writing this post. This topic gets me going every time!

  5. Okay, so as someone who cares about a friend/relative exactly what ARE we supposed to say? You look good is also open to interpretation, as is how are things going, what's up, and the famous what's going on. I'd think it's more WHO is asking than what is being asked, wouldn't you?

    1. Hi Anonymous! For me...yes, and no. Sometimes and maybe. I can only speak on my own experiences. When a parent, BFF, my adult children, or even my spouse initiate a conversation with: "Hi (Mom / TC / wife) How are you doing today / these days?" I truly do not know how to answer. It is hard to know just how much information they really want at that moment. Or how much I feel that I am prepared to share at that moment. Really sharing "how your are doing", involves trust and responsibility. "Trust" is how open and vulnerable I willing to expose myself to a person at a given time. "Responsibility" is how much I am willing and able to take on as a result of the reaction of the person, by my sharing. The latter can be a heavy burden. And, as I already shared, I am pretty selfish when it comes to my chronic situation. I suppose a good opener for a "cancer conversation would be: "How are you feeling these days, I really want to know."

      Thank you for sharing your thoughts! ~ TC