When should someone get a second opinion for their chronic lymphocytic leukemia?

When should someone get a second opinion for their CLL?

You know, we're lucky that most patients probably can continue care with their local oncologist, and that can be a great benefit. 

For one thing, it's probably an easier commute and maybe better parking than coming to one of the specialty centers where, especially in the city, there can be hassles, parking, getting there, all of that.

But because some of these advances can be a bit nuanced, for example, in the BTK inhibitors, we now have several of them. So it's a bit of a nuanced decision of, oh, wait, is one better than the other? They're brooding but calibrating them and ibrutinib and some others coming down as well, or to make this decision of BTK inhibitors versus BCL two inhibitors, we think it is probably worthwhile for every single patient to meet with a CLL specialist at an academic center.

But for most of the folks that come visit me, that have a local oncologist, most of them, I say, great, we've got all information. We are in communication with your local oncologist. You can mostly continue with them, maybe see us once a year or just they'll keep us apprised of any kind of changes.

So I think the best approach is sort of a sharing approach where we have the academic oncologist giving best advice and the local oncologist being involved in day-to-day stuff.

First and foremost is if the patient is satisfied with the approach the oncologist just take. I think that's important. Sometimes we have multiple right answers and no wrong answers that essentially lead to a choice where all of them are equally good choices.

And in those cases, this is supported to get a perspective of different physicians, of what the benefits and what the risks are of each of these approaches. I always recommend my patients to get more periods as long as they're not overburdened by the number of choices.

So if they feel that they have made a choice with their oncologist, but that is not fully in line with the values that they have, I fully not convinced them that then they are going in the right path.

Then I think it's not a bad idea to get a second opinion just to make sure that they are actually getting the standard of care right.

Treatment options. Sometimes if they have gone on, if there has been a change in the projected pattern of a history of disease, if a disease was working, was responding fine to treatment, but at some point has stopped.

And if it doesn't delay a treatment, then it's good to have a second opinion. It's good to try to find out if the next line of treatment is right.

And sometimes it's important to get a second opinion just to find out about more clinical trials because clinical trials may not be available with the primary oncologist or the first oncologist that you go to, you might find more options of clinical trials in the next oncologist.

So those are reasons often to get a second opinion. But at the end of the day, you also want to stick to the oncologist you are more comfortable with. And to a person who's easy to approach, not just the fact that you like an oncologist, but physically easy, because you do not want that just traveling to an oncologist and getting therapy to take an undue toll on your day-to-day effects.

So that is also something to keep an eye on. 

Two patients be treated with a specialist or a local oncologist. There are definitely clinical trials that offer treatments only at specialized centers where they're open. So that's definitely a potential barrier. But, you know, the community oncologist does an incredibly invaluable service, right? They treat patients where they live, which is so helpful and important.

But they also have to keep track of lung cancer and colon cancer and prostate cancer and breast cancer and a ton of different malignancies and it's just human nature. They're going to be really good at the really common ones.

When you get to CLL, it's about 20,000 patients in the U.S. per year in a country of 330 million. It's not the top diagnosis that's walking through that door. And so at a minimum, meeting with a specialist like myself who really just does a subset of cancers, right? I just do leukemia as a minor dysplasia. And getting an opinion on a treatment strategy at least once and then getting that treatment locally, I think is fine.

But I would really encourage patients to consider doing that before they agree to a treatment strategy.