I’m an oncologist whose mom has lung cancer. Here’s what to do as soon as you or a loved one is diagnosed

Dr Mikkeal A Sekeres, chief of the division of hematology at Sylvester Comprehensive Cancer Center in Miami, shared what to do first after receiving a cancer diagnosis

When you or a loved one is diagnosed with cancer, it’s easy to get overwhelmed. 

Dr Mikkeal A Sekeres, chief of the division of hematology at Sylvester Comprehensive Cancer Center in Miami, learned this firsthand when his 74-year-old mother was diagnosed with lung cancer in 2017. 

He wrote for the Washington Post that despite his expertise, ‘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.’ 

‘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.’

As a record number two million Americans are expected to be diagnosed with cancer this year, Dr Sekeres shared his top advice for navigating the disease — including how to make sure you’re getting the best, and most timely, care. 

Among Dr Sekeres’ tips were getting a formal diagnosis and seeking a second opinion

Dr Sekeres first advised patients to get a formal diagnosis as quickly as possible. He noted that while this may seem obvious, ‘most people learn of a possible cancer diagnosis from someone who doesn’t specialize in cancer.’

This includes a primary care physician finding a lump, abnormal blood test results, and a radiologist finding a mass on a scan. 

Dr Sekeres cautioned that while these findings may look like cancer, a specialist needs to perform a biopsy to confirm there are cancer cells. ‘Try to stay calm until you get a formal diagnosis through additional testing. It’s possible that lump is not cancer,’ he wrote. 

He pointed toward an early study in the British Journal of Cancer, which found that of the patients with swollen lymph nodes whose doctors suspected cancer, only 17 percent actually had the disease. 

Additionally, he suggested immediately figuring out how severe the cancer is. ‘Before assuming the worst, seek advice from an expert about the seriousness of the cancer,’ he wrote. 

Determining the cancer’s stage, or how much it has spread, takes several other tests, including scans and biopsies. 

And while it’s okay to go online and do some research, be careful with your sources. He pointed to a 2018 study in the Journal of Cancer Education, which found that only 67 percent of cancer information shared on social media is accurate. 

‘Nonprofit (such as established patient advocacy groups), government and academic websites tended to be the most reliable sources,’ Dr Sekeres wrote.

When it comes time for that first appointment with an oncologist, come with a list of questions and take notes throughout the meeting. 

Because this can be overwhelming, Dr Sekeres recommends bringing a friend or family member to help with this. In his family’s case, he went with his mother to her appointment and took notes on his computer. 

In one study, he noted that when older adults with cancer were asked to remember information about their treatment and side effects, only 23 percent recalled the correct answers. 

That being said, it’s also okay to consult another oncologist for a second opinion. Dr Sekeres suggested seeking out a large academic cancer center if you have one nearby, as these facilities often have more resources and the most up-to-date technology. 

It’s around this time that Dr Sekeres recommends having the biopsy and other results reviewed by a pathologist, a doctor who specializes in diagnosing conditions and interpreting tests. 

Dr Sekeres and his colleagues published a study in October of more than 900 patients with suspected bone marrow cancer. The team found that pathologists with expertise in the condition disagreed with the diagnosis given by pathologists who were less familiar 20 percent of the time. 

Additionally, seven percent of patients  who received the wrong diagnosis also received the incorrect treatment.  

‘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,’ Dr Sekeres wrote.