Managing High-Risk NMIBC
Transcript: Regional differences in NMIBC
Félix Guerrero-Ramos, MD, PhD, FEBU
Recorded September 2025. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- It's clear that not every patient is the same and not every culture is the same. In our country, in Spain, generally our patients prefer to have clear explanations, to have to be frank with them and telling them the truth about their disease. And they don't want you to, like to hide anything about the prognosis.
It is true that also because our Mediterranean culture, patients usually are looking for a close doctor-patient relationship, and they usually tend to trust the specialist, and this is along with this Mediterranean culture where this kind of medicine is, let's say, more paternalistic. It's not so patient-centered as maybe in the UK, or in other environments inside Europe, or even all around the world. The thing is that even being this kind of paternalistic relationship where patients will do whatever you tell them. In fact many of these patients usually ask, "What would you do if you were myself?" "What would you do if I was your father?" whatever. We have also immigration in Spain. We have different cultures coming and living here. And it's true that there's certain cultures like maybe Latin Americans who are more trained or who are asking for sometimes natural options, let's say natural options.
So in these cases, you have to be respectful with these opinions, but you don't have to forget that you have to base your decisions on the best evidence. So the thing is that you have to adapt to the culture you have and explain to them what's the evidence with practical examples, like say for example, if I'm going to prescribe this therapy, the recurrence chance will be half than if you don't take this therapy. So that's the way to go. And you have to identify and be willing to acknowledge every person's values, but not getting out of the medical evidence. First, you have to be clear to the patient and explain them what the disease they are suffering from, in this case, bladder cancer. You have to explain them they have this lesion that you have to treat, you have to operate on, and maybe now this is cured, but in the future it may come again. So you have to do this therapy in order to avoid or to reduce the risk of the recurrence of this disease. It's also true that when you explain to the patients, like for example in Spain, sometimes patients are not very conscious about their disease and you say you have non-muscle-invasive bladder cancer, so they might even interpret they do not have cancer, and this is not a big problem. And however, there are other cultures where just mentioning the word cancer makes a great impact.
They believe they're going to die and everything is going to change. So you have to adapt the explanations to make the patient aware of the severity of the disease and to make them aware that they have to come to the follow-ups either if they are very worried due to their disease or if they are not worried, like saying, "We will have to look at this. If this reappears, like if the grass is growing, then we have again to cut the grass and all that." One frequent question these patients ask for all cultures is, "Can I be cured of this?" My answer is usually, "What do you mean being cured?" I tell them that the chances if they have a non-muscle-invasive bladder cancer, especially those intermediate risk patients, low risk patients, that the chances of a dying due to their disease is really, really extremely low. So for me, that's the definition of the cure. I mean you might have to come several other times for repeat TURBTs, for intravesical therapies, whatever, but this is not gonna kill you and this is not going to condition your daily life. You will be able to have a usual daily life. If they want to get rid of the cancer and they want you to ensure them that they will never have cancer again, that's difficult and you also have to be frank with that and you have to tell them the truth. Look, these will probably reappear no matter what we do. If it's true that if we do instillations, we can reduce the chances of recurrence, but I cannot lie to the patient whatever their culture is, and you have to tell them that this might reappear, but this is not going to risk your life. It is true that there is a wide variety of healthcare systems all across the globe and they're very different in every country. To start with, in our country in Spain where we have a social security system, everything is usually covered, both there's no diagnostic and therapeutic procedures. The problem might be with public, with the public health system, sometimes the waiting lists can be long, and there's also private insurance companies where people can pay every month and they can access a private medicine. There are other examples, like for example, the US, where everything is based on private healthcare systems, and this way every patient has to have their own insurance policy to be covered. And also some of these insurance companies might or might not cover certain therapies or diagnostic procedures.
Other environments, like for example, I speak a lot with my Latin American colleagues where the development of some of these health systems is not as it should be. It is true that there is a big delay to get attention if you have any symptoms like hematuria or whatever. And this is very challenging, especially in most populations which are in the mountains, which are not in big cities or in low income populations that I know we'll speak later about that. So for example, in our system, where everything is public and reimbursed, and I mean any patient can attend the public health system without having to pay any money or whatever, we also have limitations. I mean, we don't have, for example, robotic surgery across all the public hospitals. We don't have biomarkers reimbursed in the biggest part of the hospitals. Mainly blue light or lasers for en block resection are not available in every centres, more in academic centres. So there are certain limitations for these as well. And especially in every healthcare system, I'm focusing on bladder cancer, one of my recommendations would be using a fast track hematuria pathway when a patient is having a monosymptomatic microscopic hematuria, can be referred to their urologist in less than 15 days to have an ultrasound cytoscopy or whatever done to rule out bladder cancer. And in this way, in western countries, generally all the therapies like BCG, mitomycin, Gemcitabine, whatever, even chemotherapy or new drugs for more advanced stages are covered by the health systems.
In the US as well, chemotherapy, intravesical therapies, are reimbursed by the insurance companies, but there is a big gap here between the US and the European Union. For example, for the BCG and responsive scenario, there have already been several approvals by the FDA for approvals so far based on one arm singular clinical trials, which were designed because there's not a good comparator in this population. But on the other hand, the European Medicines Agency has not approved any of these therapies. They're more conservative. They are not willing to approve any therapy based on a singular trial, although it is what you recognise that we do not have a good comparator in this population.
So there's an availability of these drugs in the US. There is not an availability in the European Union. And then it comes to the reimbursement where every government or every insurance company will decide whether or not to reimburse any of the therapies. Again, we have to offer our patients if we have availability of clinical trials or we have referral centres where we can send our patients for clinical trials, we must understand the clinical trial like a real treatment alternative. So we have to consider this because many of our patients may get therapies which will be approved in the future years ahead of its approval. So this is also very important. And then especially, well, everywhere, we use, we must adhere to clinical guidelines. It is true that not every patient is within a clinical guideline. There are certain situations where there are no recommendations, but for the vast majority of patients, we have to follow the clinical guidelines like the American Neurological Association clinical guidelines, EAU guidelines, ESMO, NCCN, or whatever. In my environment, it is true that in Spain, once drug is reimbursed, it's reimbursed for any centre.
So we usually don't have a situation that a patient cannot access a drug in certain hospital, but he or she can do it in another hospital. So usually, if they're reimbursed drugs by the Ministry of Health in Spain, there's no problem and you can administer them anywhere. But for example, we are a big tertiary academic centre. We receive many patients from other centres and we receive a lot of patients who are BCG responsive or have certain conditions who otherwise would undergo a radical cystectomy and they come to our centre to be enrolled in clinical trials and trying to preserve their bladders. First of all, you have to approach the patient and identify their skills understanding medical terms or scientific terms, understand their educational status. It is true that it's not the same speaking to a professor, even if it's a professor in economics, than speaking to somebody who has only the basic education. So you have to get to understand and see what they understand when you say cancer, when you say follow up, when you say recurrence, progression, intravesical therapy, chemotherapy, surgery, whatever. So once you've established your understanding with the patient about their level of education and how they understand what you say, you should adapt your speech to their knowledge and to their capabilities.
It is very practical, even for professors or educated people to use pictures or practical examples or even printing something from the internet with a bladder and showing them where's the bladder, where's the tumour, and this is very important. And also for us, especially in our environment, it's important because patients usually come with their partners or children or whatever, and this improves their understanding. Sometimes the patient is not very focused because they feel nervous, they are anxious, and maybe the partner who's coming with them really understands and then they speak about that. And it's easier to speak with both the patients and the people who are coming with him. This is very important, particularly in Spain, all the Mediterranean countries, you know, the family involvement is very strong. I've even seen cases where the decision is not made until the family consensus has been reached. This is very important for the patients because he will feel he's not alone, and his family and close people to this person are helping. But sometimes you have to be careful because this can translate in the family making the decision instead of the patient. We have to be aware that the patient has the last word and has to be the one who decides what they wanna do. Even if all the family is against that, we have to respect the patient's autonomy and that's one of the Hippocratic principles. But we have to try to help them to reach a consensus or to understand between themselves to get to reach a consensus. And in this sense, I usually recommend my patients to contact with patient associations. Currently, in Spain, we have a recent association called CANVES, which is for bladder cancer patients. They can find very helpful materials on the website. They can download them. They can write some kind of chat they have. They can ask questions, speak with other patients. And as I said, family involvement, I think it's very important because the patient will not feel alone and will feel they have some support behind them, but we don't have to make this corrupt, let's say. And the patient is there responsible for the final decision no matter what the rest of the family thinks if the patient is convinced of certain treatment alternative. We have a certain experience with this. Our academic centre is in a low income, low educational area in the south of Madrid.
We cover over half a million population and many of them are immigrants. With all kinds of cultures and all kinds of understanding, not only of the medical message you are delivering, but also of the Spanish language. So with this regard, it is clear that sometimes these populations have a delayed attention because some kind of fears, stigma, language barriers. And these patients are looking for medical assistance later than maybe other patients who have a better educational setting, who are more integrated in the community, who have higher income and all that. And this is not new. We know this from all the, any kind of disease, not only bladder cancer. So for example, we had one patient who was a patient, a immigrant from China, who received their appointment for a cystoscopy and didn't attend for three, four times because he simply did not understand what the letter that he received in his mailbox was saying, and he didn't understand the messages being received in their cell phone. So with this purpose in our area, we have service, it's an external service, but we have translation to a big number of languages where we have a translator that we have a, like a telephone with a hands-free call. And I speak to the patient, this translator speaks to the patient in their own language and then the translator translates back to me. And this is important. But usually, again, the problem is that some of these people do not have this family culture, this strong family culture. And even if they don't understand the language, they might come on their selves to the clinic and you cannot simply understand them because the language barrier. So we have to identify these patients.
We have to speak with the social workers, not only for the moment they are coming to the clinic and they're speaking with us, but also to ensure the continuation of the assistance and to ensure that they taking their pills, they are coming to their appointments, they're doing their imaging tests and whatever. Or patients come from an area where public transport is cheap. There's a very good network of public transport in Madrid, so they can usually come by subway, by bus. I mean, they don't even have to pay for a taxi or whatever. But it is true that when we have patients from other hospitals who come from farther than our area, these patients usually have to call their children. The son is coming with them. They bring them in their own car if they're not driving. But generally, we don't find this kind of limitation for these patients. One of the main messages I would give, and it looks like it is easy but it's not, is listen first. We, usually, I have a lot of patients in our agenda every day, we try to go fast and to explain like this is what you have, you have now to do instillations and that's all. But we have to stop a little bit, listen to the patient, "How are you feeling? How was your recovery, for example, after the TURBT? Okay, do you know what you have? Did anyone tell you about this cancer?" Yes, no. And then adapt to the patient, as I said, to their cultural, to their educational level, to their cultural origin how they understand. We have to be flexible with their choices, but we always have to, we can never forget that our work is based on scientific evidence.
So we have to be flexible with the patients. We have to let them talk, choose, ask anything they need to ask. But we have to recommend the best scientific evidence and our recommendations have to be based on this. And of course, especially for minority populations and all that, we have to pursue a multidisciplinary approach and collaborate with nurses, social workers, psychologists, GPs, because many times the patients are coming to us every three months. But if they have any issue, any problem, they usually attend their GPs. So we must warranty a continued assistance also with their GPs and not being like two different things, but being a continuum from the specialised assistance to the GP assistance.
Developed by EPG Health. This content has been developed independently of the sponsor, Pfizer, which has had no editorial input into the content. EPG Health received funding from the sponsor to help provide healthcare professional members with access to the highest quality medical and scientific information, education and associated relevant content. This content is intended for healthcare professionals only.
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