© photo by Bertie
Let me tell you about a recent case that got me thinking about second opinions and medical advice (details changed to protect privacy).
A 40 year old woman came to WFM for a routine physical. Her exam was normal. We sent her for a screening mammogram. The mammogram came back abnormal. A follow-up sonogram showed a density in the left breast and a biopsy was recommended. Fine needle aspiration was done and the pathology came back positive.
Our patient had breast cancer.
After delivering the diagnosis and answering some general questions, her doctor referred her to a breast surgeon. “What if I want a second opinion?” the patient asked. Her doctor suggested that she get it from Memorial Sloan Kettering.
A few weeks later she called in desperation. The surgeon recommended lumpectomy without sentinel node biopsy. The doctor at MSK recommended lumpectomy with sentinel node biopsy. They each explained their rationale as best they could, but the final decision was up to her.
An educated woman, she dove into the literature, trying to decipher scientific papers, reading up on trials, and scouring the internet. She made a little headway (maybe?), but ultimately felt lost at sea.
She asked for advice from friends and family, some in medicine, some not. No one had an opinion about the specifics of her case (especially not the doctors, who wouldn’t touch it) but they all knew other breast surgeons who were incredible, amazing, miraculous - who had literally saved their lives or the lives of friends, family, or friends of friends and family.
Maybe she should get a third or fourth opinion from one of them….
On the phone, she sounded frustrated and scared. The clock was ticking. She knew she had to do something but didn’t know what. She lay awake at night, ruminating. “Maybe there’s no wrong decision,” she said, “but I don’t just want a not-wrong decision, I want a right decision. What should I do?”
Before we go any further, let me step back and propose three rules about second opinions and medical advice in general.
The first rule is, you don’t always need a second opinion: use them sparingly. They are best reserved for serious situations where the diagnosis or treatment is in doubt and the proposed intervention irreversible.
In most cases serial opinions are more advisable. In other words, let your doctor come up with a working diagnosis and recommend a treatment. If that doesn’t work, give your doctor the opportunity to rethink the case, maybe with the input of specialist consultants. Only after a few unsuccessful rounds of this may it be time for a new set of eyes.
The second rule is, be careful where you get medical advice: there are no miracle workers or magic cures; only quacks and snake oil.
OK, that may be an exaggeration, but it comes from a genuine place. I am continually amazed by the ability of advertising, marketing and PR to convince otherwise reasonable people to believe untrue or even ridiculous things. Maybe it’s never been any different - after all, the very term “snake oil” dates back to the 19th century - but social media seems to have turbocharged the process.
Ivermectin, anyone?
Even word of mouth, which I generally regard as a counterweight to the psychological manipulations of advertising and marketing, is of very limited use when it comes to medicine. Generally speaking, patients are good at judging bedside manner; not so much at judging quality of care.
One of my favorite studies, published in the New England Journal of Medicine, scrutinized malpractice claims. What they found was fascinating: both a lot of malpractice and a lot of malpractice claims… with very little overlap!
What was the number one variable that determined whether a malpractice claim would be filed? Poor communication, regardless of the quality of care.
It may sound self-serving, but the best place to get medical advice - including whom to see for a second opinion - is not your friends, and not social media, and not the internet, but a primary doctor who knows the landscape and whom you know and trust.
Here’s the third rule of second opinions: don’t make matters worse.
The root problem, after all, is that you are not sure what to do. That’s why you need a second opinion in the first place. So why create a situation where you end up even more confused?
I’m all for patients learning as much as possible about their disease, but when two specialists disagree about a technical point, the layperson simply does not have the necessary tools to resolve that kind of disagreement.
First of all the literature itself is hard to read and understand - they don’t call it jargon for nothing. Second, the body of literature is often vast and ranges widely over time and space, with individual studies carrying greater or lesser weight based on quality, size, and context. Third, and most importantly, data must always be tempered by and understood in light of clinical experience - the more the better.
Now, let’s get back to our case.
For our patient to seek a second opinion regarding breast cancer surgery was eminently reasonable: the diagnosis is serious and surgical treatment irreversible. To go to doctors at different institutions was also the right move. Doctors at the same institution may be loath to disagree with each other for a number of reasons, ranging from groupthink, to common institutional protocols, to simple collegiality.
Once the difference in opinion came down to a technical surgical question, however, doing her own research was a mistake. The history of breast cancer surgery is a story of evolution from radical to minimal. It used to be that most cancers were treated with radical mastectomies - removal of the breast, underlying muscle, and regional lymph nodes.
Over time it became clear that less is more. Similar outcomes could be achieved with lumpectomy and selective lymph node resection with less disfigurement and fewer postoperative complications. The extent of the treatment was guided by the results of “sentinel” lymph node biopsy - intraoperative examination of nearby lymph nodes to see if they contain cancer cells.
Even such limited removal of lymph nodes, however, can result in complications like pain, infection and swelling of the arm on the affected side. Was it possible to safely go one step further and do away with sentinel node biopsy as well?
That is a great question of major significance that no patient has any hope of coming to an actionable opinion about alone - unless they happen to be a breast cancer specialist or researcher.
“What should I do?” She asked.
“I have no idea!” I said. Then I said the words that I was taught to say as a medical student, and that I have used countless times since then, and that are indispensable to anyone who wants to enjoy life as a generalist, whether in medicine or any other field, “…but let me try to find out.”
I called the breast cancer surgeon, who has been a trusted colleague for many years. This was not a chore; I love talking to him about cases, as is true about all the specialists I refer to - another joy of being a generalist (in private practice at least, where you get to pick your specialists).
All I had to do was mention the patient’s name and he launched into a monologue, with his characteristic clipped cadence, talking a mile a minute, of studies and statistics and clinical experience. It turns out that a lot of the data he was going on was being collected at his institution, including a major study that has not yet been published.
I asked a few questions, including if he could explain to me the perspective of the other side. He did so, and soon enough I got the picture.
Like so much else in medicine, it boils down to a risk/benefit calculation. The benefit of fewer complications comes with the risk of a yet-unproven method, whereas the benefit of a proven method comes with a higher risk of complications.
I called back my patient. “Here’s the thing,” I said. “This doctor that I referred you to is a great surgeon who is on the cutting edge (so to speak). If I had to bet, what he is recommending is going to be the standard of care in a few years. But it’s not standard of care yet.”
“So what would you do?” She said, “Or better yet, what would you tell your mother to do?”
I happen to love that question, which I think is totally fair and should be asked of doctors more often.
“I think it comes down to personality,” I said. “But luckily, knowing you and knowing my mother, in this arena you both seem to have the same personality. Go for the sentinel node biopsy,” I said, “but maybe do it with him.”
“That’s exactly what I was thinking,” she said.
And that’s the thing about bedside manner. Sometimes it’s irrelevant, sometimes it’s not.
The surgeon probably explained things to the patient in exactly the same way as he spoke to me, instead of perhaps better tailoring his message to his audience. But that’s not why I chose him. I refer to plenty of doctors just like him and some of them - notably the surgeons - are among the best in the world (including my own daughter’s cardiac surgeon, whose dour expression as walked into the waiting room after surgery almost gave Rachel and me a heart attack!).
On the other hand, if good bedside manner includes sending a patient to the right specialist and helping them clarify their situation and their options, then it can be synonymous with quality of care.
I have had the privilege to work with and learn from a lot of Family Medicine doctors like that - most of whom will shy away from tooting their own horns. I get that. But as for tooting the horn of Family Medicine itself? With that at least I hope they would have no problem.
Because when it comes to the importance of having a primary doctor who not only knows their medicine but also knows their patients - well, at the risk of dating myself, it’s like Tom Cruise said about Porsche in the movie Risky Business: there is no substitute.