Transcript of The Importance of a Second Opinion for Bladder Cancer Patients with Dr. Samuel Washington

Click here to listen to the podcast

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit B-C-A-N dot O-R-G.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. This podcast is sponsored by Merck.

Rick Bangs:

I’m excited to have Dr. Samuel Washington, Assistant Professor of Urology and the Goldberg-Benioff Endowed Professorship in Cancer Biology at the University of San Francisco as our guest. Dr. Washington is both a urologist and a researcher. Dr. Washington. I’m so pleased to have you here today to talk about one of my favorite topics, second opinions.

Dr. Samuel Washington:

Hi everyone. Thanks for having me. I’m excited to talk about it as well, and just looking forward to having fun.

Rick Bangs:

Great. All right, so I talked to a lot of patients and I see a lot of patients on the BCAN Inspire site, and they all want to be certain they’re getting the right care, and on Inspire the post is frequently made by the patient’s partner, caregiver or family. They often ask about, or someone on Inspire will suggest a second opinion. Let’s start with the basics here. Why should patients get a second opinion?

Dr. Samuel Washington:

I think the value in getting a second opinion is three different parts. One, to ensure standard of care and that they’re just getting guideline-based or guideline concordant-care for the disease that they have.

Dr. Samuel Washington:

Two, I would say for some patients it’s really getting access to clinical trials that may not be available where they’re currently receiving care. Sometimes the second opinion can get them in the gates and get them access to clinical trials if that’s what may be necessary.

Dr. Samuel Washington:

I think third and the most important reason is avoiding decisional regret. That’s just something that a lot of patients, particularly in this space are at risk for, especially with life altering and life changing treatments is that they regret the treatment that they decided. Second opinion can really give them the information they need to make an informed decision and hopefully decrease the risk decisional regret later.

Rick Bangs:

Yeah, I’ve never heard a patient regret getting a second opinion. But I’ve heard many people regret that they didn’t get one so I think that’s spot on. Are there ever good reasons to not get a second opinion?

Dr. Samuel Washington:

I think sometimes when it comes to getting a second opinion you have to think about timing. How long will it take for someone to get a second opinion? You have to be careful in that time period, that interval, that waiting interval is not too long that you’re starting to run the risk of your disease changing or progressing over that time.

Dr. Samuel Washington:

Another example of when people may not get a second opinion is when they feel comfortable with the care they’re being provided already. Oftentimes this is when they are with an oncologist or at a cancer center powerhouse institution. They may feel more comfortable with the information being provided and with the decision that they’re making already. I’d say oftentimes if people are comfortable, second opinions may not feel as urgent or necessary.

Rick Bangs:

I think patients worry about what the doctor may think and if the doctor might feel betrayed or might feel offended. What goes through your mind, your mind, when you hear a patient’s going to seek a second opinion?

Dr. Samuel Washington:

I know I feel like I hear this a lot, where patients worry about our feelings and I try to take a step back and ask just myself, why do my feelings matter as much as the treatment in the next 20, 30 years for the patient? I don’t think that those really are the same thing. I would say at the end of the day, we all should be providing information so patients can make an informed decision and the shared decision-making process is important, and that’s not really hindering on my feelings. But it’s, again, making sure that patients can make the best decisions and have all the information to make the best decisions for themselves.

Dr. Samuel Washington:

Oftentimes even when I hear it, I tell them great, happy to help. My goal, I really come from a place where I’m trying to avoid decisional regret, so whatever is needed for them to do that without sacrificing their window of treatment, I try to facilitate that.

Rick Bangs:

Yeah. I think that’s very, very helpful. What do you or should you tell the patient as a clinician when you hear them say that they want to get that second opinion?

Dr. Samuel Washington:

Yeah. Honestly, the past couple of times I’ve actually said, “That’s great. How can I help?” That’s really where I start. I just caution people that sometimes you can “shop around for doctors to get the answer you want.” Sometimes I have to caution people that I really try to stay with guidelines, and that may not always be the answer that people want. You can always find a clinician that will do what you want, but that may not be best in terms of survival, in terms of optimal treatment for you. I always say just everything is taken, even my advice, with a grain of salt.

Rick Bangs:

Yeah. There’s this delicate balance between doing what the patient wants and doing what the guidelines say and managing that space. I think that the doctors that are really good help the patient come to see the intersection between those two things. What role do you play? Let’s say I come to you and I tell you that I want to get a second opinion. What role would you play in that process?

Dr. Samuel Washington:

Yeah. It depends a little bit on the health system in which you’re interacting. I can say for my own health system, when patients say they want a second opinion, I often ask, “Do you want one from me?” Some of the people that trained me here at UCF I jokingly call them the gray hairs, “Or do you want a second opinion from someone outside or a different institution?”

Dr. Samuel Washington:

If it’s someone within our own institution within our practice, then I can often facilitate on the back end just making sure we get an expedited appointment for them to see one of my colleagues in our urologic oncology practice. If it is a referral for a second opinion outside, it’s difficult for us to schedule that. But we can facilitate getting the records sent over to that next provider so they’re not having to play catch up, so minimizing the amount of delay due to all the administrative rigmarole that happens when you get referrals.

Rick Bangs:

So you can actually be helpful in terms of facilitating this based on your description here. I’m curious a little bit though, because, and not in the bladder cancer space but I remember trying to get a second opinion within the same practice or institution and finding obstacles. Is it normal that people would help facilitate within the institution or is that something that’s unique to the folks that you work with?

Dr. Samuel Washington:

I would say it’s normal in that I’ve always seen it, but I don’t know if it’s normal in the broader healthcare system. But I think for us, I really “grew up” or was reared in a medical space where shared decision-making, informed consent, informed decision-making were key, so we really facilitate that. I hope that’s a broad sense across providers, obviously with the caveats being that we’re not delaying care or people aren’t shopping for the answers that they want.

Rick Bangs:

Sure, sure. All right. So now I’ve decided as a patient that I want to get a second opinion, and maybe I’m having some conversation with you directly or maybe I’m not. But what the steps that I would take to get the second opinion?

Dr. Samuel Washington:

Yeah. Particularly for specialty care, sometimes insurance companies require a referral from a primary care doctor. Other times they’re able to self-refer. Patients that I see, for example, for second opinions, it’s often a mix sometimes of self-referrals, other times they have to see the primary care doc and the primary care doc has to place that referral to see us.

Dr. Samuel Washington:

I would say the first step for many patients, particularly those who would not be paying out of pocket, would be to check with their insurance provider to see what the policy is, because I know oftentimes second opinions can be covered up to a certain extent. The first encounter, for example, will be covered but maybe not any procedures following that.

Rick Bangs:

I think I’ve heard that some insurance companies actually encourage second opinions. I think that’s a good idea, but I think the advice to check is right on target.

Rick Bangs:

Again, this patient has decided to get a second opinion. Where do I go? How do I know that a new provider is at least as good? Because obviously if I’m getting a second opinion, I want the best advice I can get. I may think that I need to either validate the advice I’m getting or maybe I should be getting different advice. Hopefully I’m not shopping for the answer that I want to hear. How would I know where to go?

Dr. Samuel Washington:

Yeah. I would say … Well, I’m upfront very biased, obviously, being at an academic centers. I’d say oftentimes people look towards academic centers for that second opinion. I think other times you can simply ask the provider, if they are more receptive to the idea of a second opinion, who they would suggest. I think we typically are pretty upfront with providing names of other providers that we think practice good medicine, for lack of a better term. That’s another possibility.

Rick Bangs:

What are your thoughts around traveling? Of course, every patient has to make their own decisions around this. Sometimes they have family or friends they can stay with that factor into that. But what about travel? Is travel something that people should be considering as part of getting a second opinion or not?

Dr. Samuel Washington:

Yeah, I definitely think if people are able. I’ve seen many people come see my mentor, say, for second opinions and they’ve had the financial means to travel across the country.

Dr. Samuel Washington:

I’d say the only good thing I’ve seen come out of the pandemic is the broadening of access to telemedicine, whether that be video visit consultations or telephone consultations, which has really expanded the reach outside of state lines, which has now become an option for people who want a second opinion from someone across the country. They can avoid the navigating flights and hotel or room and board in order to get it as long as we maintain the same level of access that we’ve been having over the last year.

Rick Bangs:

Yeah. That’s one of the few positives that come out, but it’s a real positive in terms of some COVID-

Dr. Samuel Washington:

Definitely.

Rick Bangs:

After effects. In some cases I think, like pathology second opinions, records can be transferred or samples can be transferred and the second opinion doesn’t require travel in some of those cases as well, right?

Dr. Samuel Washington:

I wholeheartedly agree. I know for every case that we review at UCSF, we commonly have the pathologists at our institution review the pathology just to confirm the diagnosis and that we all agree. We do the same thing with imaging as well, particularly the more advanced imaging. We always say it’s good to have a second set of eyes look at it to agree.

Dr. Samuel Washington:

I know anecdotally in my own practice I’ve had cases where people have been … Their diagnosis has been changed dramatically by that second opinion from a pathology standpoint. That really can impact the care that they’re receiving depending on what’s found or what level of agreement or disagreement there is. I definitely agree that second opinions can expand beyond just the practitioner you’re seeing to talk about treatment, but also in terms of imaging tests and pathology.

Rick Bangs:

Yeah, that was one of my key takeaways. The first BCAN event I attended was in Cleveland in 2009, and I remember a pretty famous pathologist being there talking about second opinions. It was something I hadn’t even thought about as being something that people should consider. She was explaining the importance of that, and sometimes the disconnect in a place where the pathologist is not seeing a lot of bladder cancer, the difference between folks like that and folks that are seeing lots of bladder cancer and some of the results that come out of that so I think this is an important point.

Rick Bangs:

Okay. I got my first opinion, and I have my second opinion and now I find they disagree. Now what?

Dr. Samuel Washington:

That is always a difficult situation. I would say it is always going to be a risk that people will somewhat disagree. I think the underlying question is what is recommended by our guidelines? Part of it is just from a patient standpoint, what option would people be most comfortable with? I think that is oftentimes the deciding factor.

Dr. Samuel Washington:

I think if you continue to seek third or fourth opinions, you can run the risk of causing significant delays in your treatment. But I think with the first opinion and the second opinion, you have to think about, okay, based what they’re saying, what’s the right decision for me? I think that’s the common question that the provider can’t answer.

Rick Bangs:

Yeah. I think you also, as a patient, you probably get a feel for what the quality is of the advice you’re giving within this context, because different institutions or clinics are managed differently. People talk differently. You see different specialties. Hopefully you’re seeing a multidisciplinary specialty.

Dr. Samuel Washington:

Right.

Rick Bangs:

Sometimes you leave with this impression that may be a factor in trying to make a decision between the first or the second opinion.

Dr. Samuel Washington:

Definitely.

Rick Bangs:

Okay, so third opinions, obviously … We touched on this, but timing would be an important variable here. If you’ve got a situation in which the timing is not imminent and you have a little flexibility, maybe get a second opinion. But any other advice on the third opinion side of the house?

Dr. Samuel Washington:

I would say it’s really difficult to make a blanket statement, other than I think seeking a third opinion to get the answer you want may not be advisable. But getting a third opinion because you’re uncomfortable or uncertain with the interactions you’ve had before I think are reasonable, just how to get a third opinion in a timely fashion may be the difficult aspect to that.

Rick Bangs:

Sure. Well, Dr. Washington, thanks so much for your time today and for the work that you’re doing. I know our listeners are better informed about how and when to get a second opinion and some of the reasons why doing so could be important to getting the best outcomes they can. Thanks again.

Dr. Samuel Washington:

Thank you for having me.

Rick Bangs:

In case people want to get in touch with you, I believe you are going to be willing to share your Twitter handle. Would you like to share that?

Dr. Samuel Washington:

Yeah. Twitter seems to be the best way to communicate these days. My Twitter handle is SamWashUro, S-A-M-W-A-S-H-U-R-O.

Rick Bangs:

That seems fairly easy to remember.

Dr. Samuel Washington:

Yeah.

Rick Bangs:

Great. All right, just a reminder that if you would like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1 (888) 901-2226.

Rick Bangs:

That’s all the time we have today. Thanks for listening, and we’ll be back with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Washington.

Dr. Samuel Washington:

Thank you.

Speaker 1:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit B-C-A-N dot O-R-G.