In this interview, Dr. Ignacio Duran & Alex Filicevas discuss the quality of life for bladder cancer patients and delves into the impact bladder cancer has on daily life, both before and after diagnosis and treatment, from the holistic perspective of both patients and HCPs.
Video credit: Janssen Pharmaceuticals
Watch the full discussion here
Could you explain a little bit what the current disease landscape for bladder cancer is in Europe?
Dr. Ignacio Duran: Bladder cancer is a healthcare problem with relevant magnitudes both worldwide and also in Europe.1 Worldwide, we are talking about half a million new diagnoses every year and about 200,000 related deaths.2 If we focus more on Europe, the European landscape has about 120,000 new diagnoses and about 40,000 deaths related to bladder cancer each year.3 These are quite significant numbers and deserve the appropriate attention.
What are the challenges that bladder cancer patients face?
Dr. Ignacio Duran: There are a number of challenges. We are confronting three different stages in bladder cancer: three different scenarios.4 If we are talking about a patient with non-muscle-invasive bladder cancer, we are looking to reduce relapse and progression to more invasive stages.5
The challenge is how to identify those patients who are going to be more likely to progress into more severe stages.6 If we move to the muscle-invasive bladder cancer, that is a different stage and creates a different scenario. Today, the big challenge is identifying patients that could be treated successfully by preserving the bladder.5 This is a topic that is gaining a lot of interest and is called bladder preservation strategies.7
In the third scenario - the patient with metastatic bladder cancer - our big challenge is trying to match the best treatment with the patient. This requires identifying which patients are more likely to respond to a particular therapy.8 The good news is that we are finding more and more therapies. We are sourcing treatments that now belong to what we call ‘personalized medicine,’ targeting specific abnormalities.8 For me, those are the three biggest challenges within the different scenarios.
Alex Filicevas: Overall, I think there is low awareness among patients and the general population, so when it comes to bladder cancer there is a real lack of understanding about the expectations they set when facing this disease. That uncertainty can bring a lot of anxiety to patients overall.9,10
In primary care settings, we need greater awareness to ensure that patients can be referred and dealt with in a timely manner, as there can be quite complex pathways that patients have to face when it comes to diagnosis.
If we look at the patient journey, there are a lot of different treatment choices when it comes to non-muscle invasive bladder cancer or muscle-invasive bladder cancer.11,6 Each brings a different challenge, which will also depend on the stage of the disease.5
Alex Filicevas: Each person living with bladder cancer faces a unique diagnosis. The focus needs to be on treating the individual person and not just the disease.12 This means that we need the appropriate structures in place to achieve better supportive care and information for patients so that they have somewhere to turn to deal with the challenges that they are facing.
We recently ran a global bladder cancer patient experience survey, in which we sought to uncover and better understand those key challenges that patients face in their care and how we can collectively address these.13 We will be launching the findings later this year. I think that will be a great insight into patient experiences around the world.
Why would early diagnosis and management be so important for patients?
Dr. Ignacio Duran: it is essential to be aware of early diagnosis. Early diagnosis is vital because it will condition the way we treat this disease.14 This means that we need to undertake an exercise about educating the community and identifying what the first symptoms are that may lead to a consultation with your doctor.15
It is, therefore, essential to ensure disease awareness. Hematuria is one of the symptoms that needs to be taken into account. Patients should be able to identify this as a warning sign, prompting them to go and see a doctor and rule out any severe disease.16 Early diagnosis may lead to identifying a disease that is potentially curable.17,18
Alex Filicevas: Early diagnosis is important because it sets the path for more positive patient experiences.15 We must ensure that patients fully understand the impact of their treatment choices. Patients also need to understand the impact of bladder cancer overall and understand the treatments, their side effects and the possible impact on their quality of life and their daily life – all of this can be improved by talking to someone who has been on the same journey.
This is why it is essential for us to be able to refer patients to patient support networks, whether that is in a patient group or a support network within the hospital setting. These patients can find essential peer support, talk to someone who has been through the same journey, and then make that informed decision about their treatment choices.
Discussing treatment with someone with a similar lifestyle, maybe even similar needs or hobbies, can all help them make that decision about the rest of their treatment journey.
What does quality of life mean for patients who have been diagnosed with bladder cancer?
Dr. Ignacio Duran: Quality of life is very relevant and something that we are becoming increasingly aware of. In the past, our work was more focused on outcomes: efficacy measured in terms of overall survival and disease-free survival. All of those terms are familiar to us and metrics that we use in our works.
Now, however, we are taking into account that success is not only about living longer; it is about living longer and living with a better quality of life.9 This is a growing area that I think we need to discuss more with patients and with other physicians because if you are going to live with a disease, you also want to preserve your quality of life the best you can.
Alex Filicevas: Quality of life is so much more than treatment ambition: it goes beyond survival for patients as well. Quality of life also often means different things to different people.1,9
It is important to remember that we need to look at the person as a whole. For many, beyond survival, they also want the ability to maintain as much of their normal life as possible: retaining the quality of life that they had before diagnosis and, as far as possible, their day-to-day activities and impact on their sleep quality.
Sports and travel are other key areas, as are spending time with family, and finally, sexual health and intimacy – all of which can be a big challenge for patients with bladder cancer.9,19
Could you explain in more detail the impact that bladder cancer can have on a person’s life, their ability to work for example, or their relationship with their partner?
Dr. Ignacio Duran: It's a relevant topic that deserves time in the clinic between the physician and the patient. At the last meeting at ASCO GU 2022 in San Francisco,20 two bladder cancer treatment approaches were compared. One was removing the bladder - which obviously has a severe impact on the patient’s quality of life, affecting those areas that we just mentioned. The other treatment option was what we call bladder preservation through trimodality treatment, so: chemotherapy, radiotherapy, and TURBT.20
There are, therefore, two different options with apparently very similar outcomes in terms of survival - even a little bit better for bladder preservation - but obviously, patients have a much better quality of life if they maintain their bladder.20
Does it affect daily activities like driving, cooking, gardening?
Dr. Ignacio Duran: This can depend. Obviously, there is an impact on some of those activities, but it is important to remember that patients tend to develop skills to cope.21 A patient of mine, after a cystectomy, even continued to play tennis.
There is, therefore, always going to be an impact on the quality of life – and there is no doubt that things are going to change. There will be an impact on daily activities, and in the patient’s relationship with their partner, and sexual life.1 However, at the same time, our teams are working on trying to make that new life easier for our patients.7,12 Patients are generally fantastic at adapting to their new circumstances.21
We’ve looked a lot at the physical side of things, but what about the mental health of patients diagnosed with bladder cancer?
Dr. Ignacio Duran: There is no doubt that there is an impact on mental health. Our teams have experience with patients who require psychological support for numerous reasons. This could be because they have difficulty confronting that new situation: the diagnosis, the changes in their bodies, or the change in their relationship with others.22 There is no doubt that the psychological component is important.13
In a more societal way of looking at things, is there still stigma associated with bladder cancer? And if so, can we do something to better educate people around this disease?
Dr. Ignacio Duran: I think there is a stigma related to cancer. Unfortunately, many people still have difficulty mentioning the word ‘cancer,’ which is surprising in 2022;10,23 it is a truth that needs to be acknowledged that most of us are going to experience cancer in the future, so we need to normalize the disease and move away from the stigma that, right now, is still a reality.10,23
Alex Filicevas: This stigma can often be internalized and focused on what others think.10,23 We do not hear about bladder cancer as much as we do about other cancers – breast, lung or prostate, for instance - which are much more talked about and much more visible and where patients feel more comfortable sharing their story and their journey. This sharing is really important for their own mental and emotional well-being but also for helping others going through the same journey.10,24
At the same time, it is important to raise awareness about the disease itself. It is a very intimate area of the body, of course, which can mean many people are squeamish about it or not so comfortable talking about it.25
Is there a way that we can improve that part so that people really know what lies ahead and they can co-decide what treatment better fits them?
Dr. Ignacio Duran: It is also important to work on educating physicians. Historically, I think it is fair to say that we have made too many decisions without including the patient in the decision-making process.26 Bladder cancer is a great example, and we have to confront patients who may have different options. I think it is fair to discuss those different options with patients directly and not make a decision just based on one physician’s opinion.5,19
Alex Filicevas: It is key to developing that understanding of a patient as a whole: as a real person with their individual needs.
This is where I think patient groups can have a tremendous impact. Of course, we heavily promote the idea of shared decision-making and the need for informed decision-making from the patient side.15
Patient groups provide information and resources about the disease itself but also explore the different treatment options: outlining the different steps that each treatment option has and the impact on daily life: from the direct impact to the smaller details of how to prepare for an appointment, such as what kind of things to consider, and what you need to take with you.13
Alex Filicevas: I think that healthcare professionals are in a great position to guide patients and signpost them to these organizations and these resources. This is where we have a collaborative relationship as well, which can help healthcare professionals in the job and support patients from that side of things.
I would also invite healthcare professionals in the field to refer their patients to the World Bladder Cancer Patient Coalition. Then we can help them find the patient group nearest to them that can provide these resources and support.
About Dr. Duran:
As a Medical Oncologist with interests in clinical and translational research and teaching, Dr Ignacio Durán is currently working at the Medical Oncology Department of Hospital Universitario Marques de Valdecilla in Santander, Spain where he leads the GU oncology section.
Dr. Durán is a member of the American Society of Clinical Oncology (ASCO), the European Society for Medical Oncology (ESMO) and the Spanish Society of Medical Oncology (SEOM). His major interests are genitourinary tumors, neuroendocrine tumors, and anticancer clinical drug development.
About Alex Filicevas:
As Executive Director at World Bladder Cancer Patient Coalition, Alex Filicevas is a passionate cancer patient advocate focused on driving meaningful change in cancer research, policy, and care. Alex is also President of All.Can International and a EUPATI fellow.
Filicevas leads the efforts to foster an international community of strong bladder cancer patient advocates and organizations around the world, empowering patient voices across the research and care continuum.
- Truta, A et al. Health Related Quality of life in bladder cancer. Current approach and future perspectives. Clujul Med. 2017.
- WHO: Globocan 900 World factsheet. Available at: https://gco.iarc.fr/today/data/factsheets/populations/900-world-fact-sheets.pdf. Last accessed April 2022.
- European Cancer Patient Initiative. Urological cancer. Available at: https://ecpc.org/news-events/bladder-cancer/. Last accessed April 2022.
- Macmillan Cancer. Support Types of Bladder Cancer. Available at: https://www.macmillan.org.uk/cancer-information-and-support/bladder-cancer/types-of-bladder-cancer. Last accessed April 2022.
- Cancer.net. Bladder Cancer - Treatments by Stage. Available at: https://www.cancer.net/cancer-types/bladder-cancer/treatments-stage. Last accessed April 2022.
- American Cancer Society. Early detection, diagnosis and staging – bladder cancer stages. Available at: https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging/staging.html. Last accessed April 2022.
- Tanaka, H et al, 2020. Bladder preservation therapy in muscle-invasive bladder cancer: Current evidence and future perspectives. AME Medical Journal, 2020;5:16. Available at: https://amj.amegroups.com/article/view/5449/html. Last accessed April 2022.
- Grunewald, C, M. et al. Personalisierte Medizin im Urothelkarzinom der Harnblase [Personalised medicine in urothelial bladder cancer]. Aktuelle Urol. 2019; 50(5):502-508. Available at: https://pubmed.ncbi.nlm.nih.gov/31195416/. Last accessed April 2022.
- MacLennan, S, J. et al. There is insufficient information and support around the emotional aspects of dealing with a bladder cancer diagnosis. Front Oncol. 2020;10:465
- Theurologyfoundation.org - Time to Talk Day: The Urology Stigma, 2021. Available at: https://www.theurologyfoundation.org/news/latest-news/time-to-talk-urology-stigma. Last accessed April 2022.
- American Cancer Society. Treatment of Bladder Cancer, by Stage. Available at: https://www.cancer.org/cancer/bladder-cancer/treating/by-stage.html. Last accessed April 2022.
- The Pharmaceutical Journal. The precision medicine approach to cancer therapy: part 1 — solid tumours. Available at: https://pharmaceutical-journal.com/article/research/the-precision-medicine-approach-to-cancer-therapy-part-1-solid-tumours. Last accessed April 2022.
- World Bladder Cancer Patient Coalition - Understanding bladder cancer patient experience 2021. Available here: https://worldbladdercancer.org/bladder-cancer-article/understanding-bladder-cancer-patient-experience/
- American Cancer Society. Bladder Cancer Early Detection and diagnosis. Available at: https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging.html. Last accessed April 2022.
- World Bladder Cancer Patient Coalition. Bladder Cancer Awareness Month. Available at: https://worldbladdercancer.org/awareness-month/. Last accessed April 2022.
- NHS. Symptoms of bladder cancer. Available at: https://www.nhs.uk/conditions/bladder-cancer/symptoms/. Last accessed April 2022.
- Cancer.net. Bladder Cancer – Statistics. Available at: https://www.cancer.net/cancer-types/bladder-cancer/statistics. Last accessed April 2022.
- Cancer.net Bladder Cancer – Diagnosis. Available at: https://www.cancer.net/cancer-types/bladder-cancer/diagnosis. Last accessed April 2022.
- Edmondson, A et al. The patients’ experience of a bladder cancer diagnosis: a systematic review of the qualitative evidence. J Cancer Surviv 2017.
- Urotoday.com ASCO GU 2022: Multi-Institutional Matched Comparison of Radical Cystectomy to Trimodality Therapy for Muscle-Invasive Bladder Cancer (urotoday.com) Available at: https://www.urotoday.com/conference-highlights/asco-gu-2022/asco-gu-2022-bladder-cancer/135491-asco-gu-2022-multi-institutional-matched-comparison-of-radical-cystectomy-to-trimodality-therapy-for-muscle-invasive-bladder-cancer.html. Last accessed April 2022.
- BCAN. Active living with bladder cancer. Available here: https://bcan.org/active-living-bladder-cancer/. Last accessed April 2022.
- Cancer research UK. Bladder cancer – coping. Available at: https://www.cancerresearchuk.org/about-cancer/bladder-cancer/living-with/coping. Last accessed April 2022.
- Akin-Odanye E, O, et al. Impact of stigma and stigma-focused interventions on screening and treatment outcomes in cancer patients. Ecancermedicalscience. 2021;15:1308
- Van Hemelrijc M. et al. Bladder Cancer – A Cinderella Cancer: Advances and Remaining Research Questions. Front. Oncol, 10 p.1749, 2020. Available at: https://www.frontiersin.org/articles/10.3389/fonc.2020.01749/full. Last accessed April 2022.
- Bladdercancer.net – Dealing with a Bladder Cancer Diagnosis: Our Biggest Challenges. Available at: https://bladdercancer.net/diagnosis-challenges. Last accessed April 2022.
- Franklin, M. et al. (2021) ‘Between knowing and doing person-centredness: A qualitative examination of health professionals’ perceptions of roles in self-management support’, Health, 25(3), pp. 339–356. Available at: https://journals.sagepub.com/doi/10.1177/1363459319889087?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmed&. Last accessed April 2022.
About Janssen Pharmaceuticals
At Janssen, we’re creating a future where disease is a thing of the past. We’re the Pharmaceutical Companies of Johnson & Johnson, working tirelessly to make that future a reality for patients everywhere by fighting sickness with science, improving access with ingenuity, and healing hopelessness with heart. We focus on areas of medicine where we can make the biggest difference: Cardiovascular & Metabolism, Immunology, Infectious Diseases & Vaccines, Neuroscience, Oncology and Pulmonary Hypertension.