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Day After the Diagnosis

Miriam A. Knoll, M.D.

A cancer diagnosis can be paralyzing for patients. One oncologist shares her perspective, and offers pointers on how to navigate the oncology maze

Wednesday, November 23, 2016

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HELP WANTED When cancer is first discovered, it often requires immediate and decisive action, which can be difficult for someone who’s still grappling with the shock of the diagnosis itself. During this tumultuous pre-treatment stage — getting diagnosed, choosing a doctor, having a consultation, and factoring in second opinions — patients need a lot of support

W hen people ask what my physician specialty is, my response — “oncology” — is almost always followed by a question: “Don’t you find it sad treating cancer patients?”

Although there are certainly cases that get my tears flowing, I usually feel optimistic. The scientific community has made incredible strides against cancer in the past century. Over the span of my career, I’ve seen so many patients get better despite the odds against them. What’s more, instead of just hearing bad news, I can offer a solution, whether it’s curative treatment, palliative treatment, advice, or simply a listening ear.

Approximately 50 percent of cancer patients undergo radiation treatment at some point during their illness. This is where I, as a radiation oncologist, step in. Radiation therapy (also called radiotherapy) uses high energy X-rays to kill cancer cells. For some patients, I’m their only oncologist; in other situations, I’m part of a team of oncologists, including surgical oncologists (who remove tumors surgically) and medical oncologists (who treat cancer with chemotherapy — drugs that stop cancer cells from growing, or immunotherapy — drugs that harness the body’s immune system to help the body fight cancer).

The first time I meet patients for a consultation, my primary goal is to evaluate their health to determine if they are a good candidate for radiation — and, if so, what kind of radiation, how much, and for how long. My secondary goal, arguably just as important, is to support my patients and their families by letting them know what to expect and how to overcome some of the hurdles they’ll face. Navigating the healthcare system is difficult enough for a healthy person, let alone someone who has just been diagnosed with a terrible disease.

When cancer is first discovered, it often requires immediate and decisive action, which can be difficult for someone still grappling with the shock of the diagnosis itself. During this tumultuous pre-treatment stage — getting diagnosed, choosing a doctor, having a consultation, and factoring in second opinions — patients need a lot of hand-holding. So, whether you’re the patient or their loved one, here are a few pointers to make the process smoother.

Diagnosis


Many patients make privacy an absolute priority, and that’s completely understandable. Still, I try to impress on my patients how imperative it is to have a circle of support. Even the simple first steps of scheduling consultations with physicians can be overwhelming. I encourage patients to reach out to their family and friends for help, whether it’s driving them to appointments, staying with them during their treatments, or helping with tasks at home.

Enlisting help doesn’t mean you have to give up your privacy entirely — you don’t have to tell your friend everything that’s going on just because she’s giving you a ride to the hospital. You’d be surprised how little people may know about their relative’s diagnosis, even while sitting at the sick patient’s bedside. And that’s okay. People do truly want to help, so if you’re in the position to accept the assistance, do so.

Studies show that most patients do not absorb the information given by their doctor, especially when it’s related to cancer. So bring along an attentive relative or friend to every appointment

Many patients like to do research online to help them understand more about their newfound illness. As a social media authority — I serve on the American Society of Radiation Oncology’s Communications Committee and previously served as Social Media Ambassador for the Tisch Cancer Center at Mount Sinai Medical Center — I actively try to bridge the gap between doctors, “Dr. Google,” and patients.

Dr. Google is the way physicians refer to the medical opinion patients have already received prior to the first consultation, i.e., the opinion solicited by googling their disease and seeing what the internet “recommends.” In the past, doctors were dismissive of Dr. Google as most doctors only published in academic medical publications and journals. But, slowly, they’re beginning to realize that Dr. Google cannot be avoided and are therefore engaging in social media. What does this mean for someone with a newly-diagnosed cancer? It’s actually great news because it means there are more reliable resources available for patients than ever before. Ask your doctor which websites s/he recommends.

Researching information about a new diagnosis may help some people understand its scope. But if googling your cancer makes you anxious, don’t do it. Simply stay off the internet.

Choosing a Doctor


What makes a “Top Doctor”? That’s a great question: reputation is key, so ask around. If you know a doctor you trust (a relative, friend, or your primary-care doctor), ask them who they would recommend. Reach out to organizations that work with cancer patients. Ask around. No matter what you have heard about any individual, choose a doctor you’re comfortable with. There are usually many good doctors in the specialty you’re looking for, so go with one you really trust.

Coming from a family of doctors, I saw firsthand how many opinions there can be regarding any illness, whether a cold or a serious disease. My husband is an interventional radiologist, and when we got married during my first year of medical school, we jokingly agreed that we would adhere to simple, yet strict, guidelines when seeking medical care for ourselves or our children:

1. Find a good doctor.

2. Follow the doctor’s advice.

My husband and I knew that no matter what medical situation we found ourselves dealing with, we could always find other physicians to ask. We could do research ourselves as well. For example, even during a healthy pregnancy, many questions come up: “How much coffee is okay?” “Can I eat sushi?” And for our kids, we had questions such as, “Does our 9-month old need reflux medication because he keeps spitting up?” So instead of polling every physician in the family or in the hospital, we picked a single doctor and followed their instructions. We feel this is the optimal way to reduce the stress of addressing medical concerns.

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