This week marks the 28th Annual Economics of Diagnostic Imaging: National Symposium in Arlington, Virginia. Thousands of radiologists are meeting to learn about the latest developments in the field. The insights that come out of this conference are important to Ageology physicians because radiologists usually participate in the process of a cancer diagnosis; and unfortunately, that’s a diagnosis that is handed down to a third of women and half of men in their lifetimes.
At some point in your life, it’s possible you might have to have a difficult conversation with a radiologist – maybe you’re not the one being affected, but it could be your wife, husband, aunt, father or best friend. Having this annual conference in the news has encouraged us to remind our patients about the best ways to navigate difficult diagnoses.
Fear, anger, grief, a sense of helplessness, anxiety and guilt are natural companions to any serious diagnosis. If loved ones, friends and co-workers find out about this new challenge, they are likely to suffer many of the same concerns and feelings. Many people decide to keep new diagnoses secret or to reveal only part of the truth in an effort to make it easier on others.
In this age of the Internet, some people share widely about their experiences of being diagnosed with and fighting a serious illness. These folks create blogs to tell their stories, or click to their Facebook pages for no-holds-barred sharing. Others wish to be more private about their diagnosis, choosing to maintain a sense of normalcy in at least some parts of their lives. They may tell close family members and no one else. Or they may only want to keep a diagnosis a secret at work, so as to not threaten the livelihood that may be crucial to their ability to fund their own treatment and the ongoing needs of their families.
No doubt, in a time when things can feel completely out of control, it’s good to be able to control something…and who you tell, and how much you tell them, is one area in which you get to make the decisions. Still, most experts agree that telling everyone important to you about your diagnosis is the best way to go.
It may be tempting to hide a tough diagnosis from children, but most experts agree that children will pick up on something being amiss, and trust can be lost. Most patients I’ve talked to about this who decided to keep a life-threatening illness secret from their child or children say that they regret it. The conversation is tough, but kids do better knowing the truth, and they appreciate being able to help and support the ill person.
When it comes to a cancer diagnosis, multiple studies show that more support means better quality of life and functional status, and fewer symptoms for people with this disease. (A review of 24 studies found that online support groups are helpful too—as long as they are moderated by a health professional.) Anxiety over a diagnosis doesn’t go away with social support, but it definitely helps reduce its impact. One interesting study found that the dreaded “chemo brain” women often experience may actually be due to anxiety. A few ingenious researchers gathered a group of newly diagnosed women and checked their cognitive function before they began treatment, and found that their function declined substantially before they got their first dose of chemo.
If the time comes when you do receive some news about a difficult diagnosis, the first thing to do is to listen, ask questions, and fully feel and express whatever it is that you are feeling. If you know ahead of time that this could happen, enlist a loved one or trusted friend to attend the appointment with you, and have him or her bring a voice recorder or note pad. In those initial moments of distress, it’s possible you won’t remember much.
If the diagnosis is for cancer, for example, find out:
- The name, size and location of the cancer
- Whether it is slow-growing or aggressive
- Treatment options
- What side effects can be expected from each treatment
- Success rate of the treatments
Always bring someone to your appointments to help you keep details straight. Get a second opinion if that feels right to you.
As soon as you have a handle on the details of the diagnosis and the way treatment is likely to go, you can begin telling others outside of your closest friends and family—those you might have leaned on to support you through the process of being diagnosed. Who you tell and how much you share is a highly personal thing. It’s cultural, too—in some cultures, a person with a disease might be rejected by others due to outmoded beliefs about how the disease can affect others; in others, a strong sense of linked community makes everyone around the ill person a part of the fight.
As you share your news, know that you have every right to be specific about the kind of support you most desire—and that this might change over time. People will want to help. Keep a list of things you would like help with near the phone or computer so you can make clear requests when people offer support.
Some friends or family members feel most helpful when they do research to try to help you find a cure for your disease. These folks may inundate you with Web links, book titles and suggestions to see this or that doctor or alternative medical practitioner. Empower yourself to say “no thanks!” to those individuals if they start to get on your nerves, but do remember that they are only trying to help!
You might want someone to cook meals for your family, or help with housework or childcare when you are tired from treatments. Maybe you just want someone to come over and watch a movie with you and rub your feet when you are feeling lousy.
A tough diagnosis can sometimes end up being, in some ways, a gift—a wake-up call not only to take better care of yourself, but to make sure that in all your relationships, you take every opportunity to be loving, appreciative and grateful. Those you don’t share with are deprived of a chance to more deeply appreciate you and the connection they have with you —something that, unfortunately, we don’t often do until we remember that all of this is temporary.
Photo credit: UTC Clinic