Getting A Second Opinion
- Dr. Daniel A. Salerno of Temple University Hospital shared a story about a breast cancer survivor who came to him after struggling with a chronic cough and fatigue for 10 years. Thankfully, he tried a new test that showed the true underlying cause – MAC lung disease.
- One of the greatest cancer researchers of our time tells SurvivorNet that people should get “multiple” opinions following a cancer diagnosis. And it’s not a bad idea to get multiple opinions for any diagnosis if you feel like your treatment isn’t working or your symptoms are being dismissed.
- For some cancer warriors, community oncology provides great treatment options. But for others, and particularly people with rare cancers, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
- Social workers can help with a variety of issues that arise with cancer treatment. They can connect you with financial resources to help pay for treatment, work with insurance companies and provide emotional support for those who need it.
In a piece for The Philadelphia Inquirer, director of critical care services at Temple University Hospital Dr. Daniel A. Salerno shared a story about a breast cancer survivor who had a 10-year history of chronic cough and fatigue. She came to Dr. Salerno’s office after many years of searching for answers. Thankfully, he was able to get to the bottom of her health issues.Read More
- Bronchitis – an inflammation of the lining of your bronchial tubes, which carry air to and from your lungs.
- Bronchiectasis – a disease where the large airways in the lungs are damaged and cause the airways to become permanently wider.
When Dr. Salerno finally got to examine the woman, he heard a lot of “crackling” in her lungs.
“What most concerned me about her medical history was that her cough persisted for so many years and never fully responded to medications,” he wrote. “I wondered if her bronchiectasis was the sole diagnosis or the result of another lung disease.”
That’s when Dr. Salerno decided she needed an additional test which had not yet been performed. He hoped this sputum test would identify any bacteria that may have infected her lungs.
“I asked her to cough deeply and spit any phlegm that came up from her lungs into a container,” he explained. “The sample was then sent to the lab for processing.
“Results from the test confirmed the presence of mycobacterium avium complex (MAC) and revealed a previously missed diagnosis: MAC lung disease.”
MAC itself is a group of bacteria that can cause MAC lung disease. Most people who breathe or swallow these germs don’t get sick, but some people with pre-existing conditions may be more susceptible to a developing a slow-growing infection once MAC enters their airway. Once this noncontagious infection occurs, breathing can be affected and treatment may become difficult if the condition goes undiagnosed for too long.
“Because MAC symptoms are subtle and mimic other chronic lung conditions, many MAC patients will experience symptoms for months or even years before getting the correct diagnosis,” Dr. Salerno wrote. “Lung imaging can show potential signs of MAC infection, but a sputum test to confirm the presence of bacteria is the only way to definitively diagnose this disease.”
For treatment, this breast cancer survivor is currently on antibiotics.
“The standard of care is a combination of three oral antibiotics taken over months or sometimes up to a year to clear the infection,” Dr. Salerno wrote. “Unfortunately, prolonged antibiotic use can have serious side effects including loss of vision or hearing.
“I sent my patient to ophthalmology and audiology for baseline tests so we could monitor her during treatment.”
This woman also elected to join a randomized clinical trial Dr. Salerno is involved with. And since starting antibiotics in September 2021, Dr. Salerno is happy to report that she’s experienced “minimal side effects.” Additionally, her chronic cough was 80 percent improved by December.
“By January, repeat sputum tests showed her MAC infection had cleared,” Dr. Salerno explained. “Unfortunately, in some patients the infection can recur, which is why she’ll continue treatment through the end of the year.”
The Importance of a Second Opinion
You should always consider getting a second opinion if you feel like your doctor has missed something or your symptoms are being dismissed. And after receiving a cancer diagnosis, it’s important to remember that you can, and should, talk to other cancer specialists about your disease.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in a previous interview. “Because finding a doctor who is up to the latest of information is important.”
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the potential approaches to your disease is crucial.
At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.
Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers.
“So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.
Getting Care from Academic Centers and Comprehensive Care Centers
For some cancer warriors, community oncology provides great treatment options. But for others, and particularly people with rare cancers, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services—and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board—a group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Getting the Emotional Support You Need
Dealing with a cancer journey or any type of health battle can have a big impact on your mental health. If you are not sure where to turn during or after your cancer battle, social workers can be an incredible resource, and they are there to help.
One of the primary roles of a social worker is advocacy, according to Sarah Stapleton, a clinical social worker at Montefiore Medical Center. Social workers help with a variety of issues that arise with cancer treatment. They can connect you with financial resources to help pay for treatment, work with insurance companies and provide emotional support for those who need it.
“If there is any barrier that you are finding, financial, transportation or otherwise, a social worker is going to help advocate for you to try to do the best we can to eliminate that and make sure you get your treatment,” Stapleton said in a previous interview with SurvivorNet.
Contributing: Marisa Sullivan, Joe Kerwin