People reach out to me often for advice. It is typically related to a friend or a friend of a friend who is diagnosed with cancer. There is nothing more overwhelming than being thrown into a foreign world of doctors, hospitals, medical jargon, tests, and treatment options. Cancer is often a frightening and emotional diagnosis and it is difficult to make decisions.
My advice comes from my own experience with cancer and my years of volunteer work advocating for patients. For years, I have been passionate about advocating for care that truly centers around the patient and their family.
This week I wanted to write about an experience I had a few days ago. It was not the first time it happened and I felt it was important to write about. A friend of mine was given a routine chest x-ray after a bout with the flu. The x-ray showed a spot on his lung which led to a series of tests including a CT scan and a PET Scan. Upon review of the scans, the doctor recommended my friend be scheduled for surgery to have the area in question removed. There wasn’t much explanation about the situation. The doctor felt it was the best option. It would be removed and biopsied while my friend was on the table and if malignant the doctor would remove the lobe of the lung. Seems pretty straightforward, right?
My friend was concerned. Surgery is a big deal and cutting into his lung seemed dramatic. He just didn’t feel right about it. He was torn. Should he accept what his doctor was suggesting? Refuse it all together? With the surgery scheduled in a few days, my friend decided to make an appointment with another doctor in a Boston hospital and get a second opinion.
I encountered a similar situation a few years ago when I spoke to one of my sister’s friends. She had a biopsy performed on her breast. After the biopsy, she was told she had Breast Cancer and would have to have both her breasts removed because of the expansiveness of her disease. She quickly accepted the information she was presented and was prepared for the surgery. I urged her to go for a second opinion, helped her set up an appointment and she traveled to a cancer institute just 10 miles from her hometown hospital.
In both of my stories, the second opinion changed the course of events. My sister’s friend was given the option to proceed with a protocol which would require less surgery and save both of her breasts. My friend with the spot on his lung was given far more information about his situation and after another scan was told that the spot on his lung was unlikely cancer but rather an infection which could be potentially cleared with an antibiotic.
I am a big proponent of getting a second opinion. I also think it is very important to fully understand as much as possible your diagnosis and options for treatment. Many times there is more than one option and there is not a clear-cut choice and it is important to make sure you have as much information and understanding to feel comfortable with your course of action. This advice is not specific to cancer. It applies to any type of medical situation one might face. You have the right to understand your situation and choose the path that is best for you. Just because you are assigned a doctor you are not bound to stay with that doctor if you don’t feel like they are right for you. I understand that medical insurance has made life more complicated and some choice may be restricted but in the end, that patient has the right to do what is in their best interest. I have often counseled people to switch doctors if they do not feel supported and treated with respect.
According to the Patient Advocate Foundation, 1/10 of newly diagnosed patients do not understand their condition and only 1/3 will seek a second opinion.
Some people are concerned about hurting their doctor’s feelings if they seek a second opinion. Today, second opinions are common practice. They are important because they:
- confirm a diagnosis
- give additional information
- present different perspectives and models of care
- may give different treatment options including access to clinical trials
Every situation is different. What is most important is that the patient feels comfortable that they have all the information they need to proceed in a way they feel makes sense for them. Cancer treatments are changing daily. Not every doctor has the same opinion and often opinions are a reflection of where they practice and the technology and research available. The bottom line is we are all empowered to assert control in a situation that often feels like we have no control and remember to advocate for ourselves.