PHOENIX -- It is a story that made national headlines: A Michigan woman who had a double mastectomy after being diagnosed with breast cancer only to find out after the surgery that she did not have cancer at all.
Nationwide about four in 100 cancer cases are misdiagnosed. That's a relatively low rate unless as Valley resident Beverly Knudson found out, you are one of the four.
"And I'm lucky. I'm lucky,” Knudson said. “I am one of the ones who got a second opinion and survived.”
Knudson knows the value of a second opinion. When she noticed a small lump in her neck, she went to the doctor.
"He said it is just a swollen lymph gland; it is nothing to worry about. Don't even give it a second thought," Knudson recalled.
Knudson did what he suggested -- went home and waited for the swelling to go down.
"At least my generation, we are programmed that you trust your doctor and you don't question them," she said.
But when the swelling was still there a month later her daughter did start asking questions
"She said 'I don't' like the lump in my mom's neck,'" Knudson remembers. Through a series of doctors and tests, everyone told Knudson not to worry, but her daughter still did. After months of assurances from different doctors, her daughter told a head and neck surgeon she wanted the lump removed.
"My daughter said, 'Look, this is my mom. I can't go buy another mom; she is the only one I am going to have. I have to know what it is.'"
What it was was cancer - non-Hodgkin lymphoma. Knudson said her doctors still were reluctant to treat it aggressively. The cancer spread.
Knudson believes the doctors felt they knew what was best and did not like being questioned. Angry and frustrated, she sought another opinion at Cancer Treatment Centers of America.
"Within four months I was in remission," she said.
How do mistakes like that happen? Dr. Maddapa Kundranda at CTCA says there are lots of factors.
"One of the things is every cancer is different," he said, explaining that it's not always obvious which cells might be cancerous.
New tests pick up small abnormalities that are hard to diagnosis. In many cases, if a doctor sees problems -- a lump, for example -- he orders an ultrasound and then a biopsy, which goes to a pathologist. "So the pathologist is looking at these cells and trying to figure out whether it is cancerous or not," Kundranda said.
It's not always clear-cut and much of the work is done by radiologists or pathologists who are not working directly with the doctor.
"Our medical system is completely fragmented," Kundranda said. "The pathologist is sitting looking at the slides, not having the whole clinical picture. You also have the radiologist looking at the images but not knowing the clinical background. And you also have medical oncologist or the treatment physician has got the report and goes by that."
Kundranda says that fragmentation can lead to mistakes.
He says to help avoid that at CTCA, they put everyone involved a patient's care, into one room.
“So you have almost a peer-to-peer review in the room and come to what we think is the best care and present that to the patient,” he said. But no matter where you go, Kundranda says, you need to be an advocate for yourself and ask questions -- lots of them.
“If the patient has any doubt in his or her mind, that something is amiss, I strongly recommend that he or she get a second opinion,” he said.
Beverly Knudson couldn't agree with more.
“If I hadn't gone to somebody else, I would have died, and my job as a mother and grandmother isn't done. And it would have been done," she said.
More and more facilities are looking at ways to build care teams, not just for cancer, but for other diseases, as well. Kundranda still stresses that patients should ask lots of questions.
Cancer Treatment Centers of America gave us this list of some key things patients should ask, no matter where they are treated.
- What types of diagnostic testing do you perform? An accurate diagnosis is critical because it is the basis upon which your treatment plan will be determined. For example, PET/CT scans help determine the precise location of cancer in the body to accurately plan treatment. Tumor molecular profiling identifies a tumor’s unique blueprint to choose targeted chemotherapy drugs. It’s important to have access to advanced diagnostic tests, as well as physicians who are experienced in performing them.
- What does my diagnostic testing tell me? The information you should receive from diagnostic tests includes: where the cancer originated, the size of the tumor, the stage of cancer and whether or not it has spread to the lymph nodes or other parts of the body.
- What treatment options are available? What do you recommend and why? Many types of cancer have a variety of treatment options available. Your doctor should be able to explain the potential benefits of each to help you understand your options, even if he or she doesn’t perform a specific treatment.
- What happens if a treatment approach doesn’t work for me? At any point, you should feel comfortable asking your doctor about the status of your treatment. When choosing a care team, you may want to consider doctors willing to try new therapies, depending on your response. Look for professionals who will tailor treatments to your specific diagnosis, and who are willing to pursue other options if your treatment isn’t progressing as expected.
- What are the side effects of treatment, and how often do your patients experience them? No two people will have the exact same response to cancer treatment, and side effects may vary depending on what type of treatment you choose. Ask your doctor what side effects you might experience, so that you can plan ahead and choose with all of the information you need.
- How will you help me manage side effects? Integrative therapies can help prevent or manage side effects, so you stay strong and avoid treatment interruptions. Some therapies that can support your wellness during cancer treatment include: nutrition therapy, naturopathic medicine, mind-body medicine, acupuncture, oncology rehabilitation, spiritual support and pain management. Ask your doctor if any of these are available at your hospital, and how they can be incorporated into your treatment plan.
- How many patients have you treated with my type and stage of cancer, and how successful have you been? Ask how much experience your doctor has treating your type and stage of cancer and whether he/she is a board-certified specialist. You may also want to ask about his/her facility’s treatment results so you can see how successful they have been in treating your cancer type.
- Who will be involved in my care, how often will they meet and who is my main point of contact? An integrated care team including a surgical, medical, and/or radiation oncologist; dietitian; naturopathic oncology provider; clinical nurse and medical advocate (often a nurse care manager) can ensure you get support for your entire well-being during treatment. If you don’t already have a team like this in place, talk to your doctor about assembling a multidisciplinary team.
- Where will all my treatments, appointments, tests, etc., take place? When looking for a treatment facility, consider the coordination and convenience of your treatment. Having appointments and procedures in one location can make treatment less stressful for you, and it may allow you to start treatment sooner.
- How will you help me balance my cancer care with the demands of my normal life? Your cancer treatment should adapt to your individual needs, and family and professional obligations. Talk to your doctor about your personal needs, so that all aspects of your life are considered when choosing a treatment plan.