My mother-in-law was recently diagnosed with cancer. What steps should patients like her take to make sure they get the best care?
When my mom called to tell me about her lung cancer diagnosis in 2017, my brain struggled to keep up with what my ears were hearing. Phrases came in isolated fragments: “shadow on a chest X-ray,” “doctor says I need a biopsy” and “malignant.” Suddenly, I was cast in the cancer drama, playing an unfamiliar role: Rather than oncologist calmly providing information, contextualizing a diagnosis and developing a treatment plan, I was the son of a patient, trying to get answers.
Over the next few days, after the shock had passed, I helped my mom devise a plan. Here’s what we came up with and what I advise my own patients to do, including getting a second opinion from a pathologist, who examines the body’s tissues to distinguish normal from abnormal.
Advertisem*nt
Many patients skip this step, but mistakes happen. In a study my colleagues and I conducted through the National Institutes of Health, which involved more than 900 patients with suspected myelodysplastic syndromes, a bone marrow cancer, pathologists with expertise in this condition disagreed with the diagnosis given by pathologists who weren’t experts in the diagnosis 20 percent of the time.
Even more troubling, 7 percent of patients who received the wrong diagnosis also received the wrong treatment for their cancer.
That is why it is just as important to seek a second opinion from a pathologist, to confirm the diagnosis, as it is from an oncologist to verify the best treatment plan.
1
Get a formal diagnosis
Return to menu
Most people learn of a possible cancer diagnosis from someone who doesn’t specialize in cancer. Perhaps a primary care physician raised alarm over a breast lump or a blood test showed an elevated prostate-specific antigen, or PSA. In my mom’s case, a chest X-ray to evaluate a cough revealed a mass.
But we can’t say for sure that an abnormality is cancer until a biopsy confirms that cancerous cells are present. Try to stay calm until you get a formal diagnosis through additional testing. It’s possible that lump is not cancer: In one study, patients with swollen lymph nodes and suspected cancer were referred by their primary care providers to surgeons for a biopsy. Only 17 percent were diagnosed with cancer.
2
Find out how urgent it is
Return to menu
What if the biopsy does show cancer? It is normal to experience a range of emotions, such as fear, anxiety, sadness, anger or even guilt. I sure did when I learned of my mom’s diagnosis. But before assuming the worst, seek advice from an expert about the seriousness of the cancer. Expect to undergo additional testing, such as radiologic scans or even another biopsy, to determine the cancer’s “stage,” or how much it has spread.
Advertisem*nt
I specialize in caring for people with leukemia and have some patients whom I rush to the hospital to start therapy: A study I conducted with several colleagues showed that the quicker we treat that type of acute leukemia, particularly in younger adults, the longer people live. On the flip side, I have followed other patients with cancer diagnoses, such as some slow-growing, chronic leukemias, for over a decade without any treatment.
In my mom’s case, the biopsy did show lung cancer.
3
Choose online sources carefully
Return to menu
It is okay to do some online research before meeting with an oncologist, but try not to go down too many rabbit holes. The internet is prone to erroneous health information, with one study finding some sites had very low accuracy for information about pancreatic cancer, and another concluding that only 67 percent of cancer information shared on social media was accurate. Nonprofit (such as established patient advocacy groups), government and academic websites tended to be the most reliable sources.
Advertisem*nt
4
Take notes at your appointment
Return to menu
When meeting with an oncologist, come with a list of questions to keep the conversation focused on what’s important to you. Bring a family member or friend along to take notes and help you recollect what was said. It can be a lot to remember: When recall for information about treatment and side effects was assessed in 69 older adults with cancer, respondents were correct in only 23 percent of open-ended questions, such as when to contact a doctor or nurse, or recommendations about eating and drinking.
I accompanied my mom, who was 74, to her oncologist appointment and took notes on my computer. Many of my patients and their children use their phones.
5
Consult another oncologist
Return to menu
Time may be of the essence, and appointments may be difficult to get quickly. So try to be flexible about whom you’re willing to see for a second opinion, where you can see them (some cancer centers like mine have multiple sites), and what time you are willing to see them. For example, my 8 a.m. new patient slot is often more available than my 1 p.m. slot.
Advertisem*nt
In general, larger cancer centers, and particularly academic centers, are more likely to have specialists in your specific cancer and be the most up to date on the latest diagnostic and treatment standards. Some even support telehealth visits, so you can potentially see a world expert from the comfort of your own living room.
6
Get a second opinion from a pathologist
Return to menu
When scheduling a second opinion with an oncologist, insist that the biopsy of the cancer also be reviewed by the cancer center’s pathology team, who also tend to be specialists. Often, you will have to sign a release for one medical center to send the biopsy specimen to another, or even pick up the specimen and carry it there yourself.
When my mom went for a second opinion, the oncologist she saw at the cancer center where I worked disagreed with her initial diagnosis, which had determined her cancer had spread to nearby lymph nodes and was Stage 3. They found her lung cancer had not spread to her lymph nodes and was only Stage 1. Instead of requiring chemotherapy, radiation therapy and surgery, luckily for her, she just needed the surgery. After the surgery, she was cancer free, and thankfully is alive and well today.
Mikkael A. Sekeres, MD, is the chief of the division of hematology and professor of medicine at the Sylvester Comprehensive Cancer Center, University of Miami. He is author of the books “When Blood Breaks Down: Life Lessons from Leukemia” and “Drugs and the FDA: Safety, Efficacy, and the Public’s Trust.”
A prescription for better living
- Taking care of your skin doesn’t have to be expensive. Here’s a simple, science-backed routine for day and night.
- Our nails are a unique window into our overall health. Here’s what to know about the diseases associated with distinctive nail changes.
- Do you get sleepy in the afternoon after eating lunch? The most likely culprit is your circadian rhythm, but what you eat may also play a role.
- Does acupuncture work for chronic pain? The evidence for using it to treat headaches and back pain is convincing.
- Next time you get a leg cramp, try taking a sip of pickle juice. Athletes have long used it to ward off cramps, and studies show it may actually work.
- Are salads actually good for you? It depends on what you add to it, especially your choice of dressing.
