Medicom: Thank you so much for joining us. Could you tell me about Europa Donna? What is its purpose, and what are the short term and longer-term goals? TS: Europa Donna, which is the European Breast Cancer Coalition, is one of the biggest advocacy organisations in Cancer Patient Society. We've been active since 1994 and we've been collaborating with different stakeholders at the European level. But what is even more important is that we have 47 member countries from Europe that go way beyond the borders of the European Union. We train and we educate, and we advocate all women.
Medicom: I know that you're a survivor yourself, and I suppose that you've seen a huge amount of progress and changes made in the last 15 years, since your diagnosis. Could you tell me a little bit about what some of the challenges are?
TS: Yes, definitely. Oncology and especially the breast cancer field is changing. We can actually say that it is changing daily, not just yearly. And yes, I was diagnosed in 2008. I was very young at that time (26), which is not a common age for a breast cancer diagnosis. Since then, the treatment landscape has changed a lot from the physician’s perspective, but for patients not so much. We have seen a lot of changes in diagnostics, for example with respect to the access to more precise diagnostics through genomic and genetic testing. However, for early breast cancer, the treatment options didn't really change all that much. Options for the advanced setting in metastatic disease have made tremendous strides, in very tight cooperation with new diagnostics and new targets. But for early breast cancer, little has changed. We are waiting to see some of the understanding from the metastatic setting of the disease slowly transmit to the early setting of the disease.
Medicom: There are some very substantial obstacles in care still. If a 26-year-old young woman showed up with breast cancer now, would the treatment be substantially different than you experienced at this time?
TS: Well, I can say that for my country it would be different in the sense that she would be offered fertility preservation, which wasn’t offered to me at the time of my diagnosis. This is an issue that we must consider and discuss with young cancer patients, not just in breast cancer but in all types of cancer. It is important to have the opportunity of fertility preservation before the treatment starts. This should also be discussed with patients who have metastatic disease. Maybe it's not the first thing that they should think about, but fertility preservation is something that should be considered.
Furthermore, I would probably be offered genomic testing before the treatment. I don't think that for my case the treatment would be different, because my tumour was large and the biology was very complicated. However, for many women that were diagnosed 10-15 years ago with stage one or two breast cancer, the treatment today would be different. Nowadays, patients have better options with respect to fertility preservation and diagnostics, improving their quality of life.
Medicom: What exactly can patient organisations mean to patients that are diagnosed with cancer? Can you explain what the advantage is to the practices of physicians to refer patients to a patient organisation?
TS: The role of patient organisation is not to substitute any of the experts in the process. Patient organisation are the bridge and the connection between the clinicians and patients. This is important, because most of the patients don't understand the scientific medical language that is used by clinicians.
When you hear the diagnosis, you don't hear anything else. When the specialist says you have cancer, you will miss a lot of information about the treatment and the support that will be shared after that. You just don't hear it anymore. For many patients it is even difficult to understand if they get the written information with them.
In this way, a patient organisation, or another patient that already went through this process, can help to explain the situation in lay language. For example, what does it actually mean to lose your hair? Does it go away in a day? Or is this a process of weeks? Such simple questions, that seem obvious for clinicians who are daily facing these situations, are very important for the newly diagnosed patient. We understand that doctors don't have time to explain all of this in detail to newly diagnosed patients. Therefore, we nowadays get a lot of calls and emails from patients who say: "My doctor advised me to come to you". This is a good development in my opinion.
Doctors are aware that patient organisations are helpful. Within our teams, we have doctors, medical experts, or retired doctors who can explain everything to newly diagnosed patients, but also to their caregivers, friends and co-workers. People in the social circle of the patient have a lot of questions because they want to support the patient during this journey. It is crucial that patients and people that are related to the patient understand the situation.
Another issue that we discuss is facing side effects. How to ask for support and how to manage the side effects of the treatment. In breast cancer, the treatment is very long. The adjuvant hormonal treatment may take 5-10 years, and this will be accompanied by side effects. In this period, you don't see a doctor very often like you do during your chemotherapy or targeted treatment. For patients, this is a time to turn to a patient organisation to gather information on side effects and how to deal with them.
Medicom: Are the quality-of-life measures that are available out there being used adequately? And do you think that all trials should be reporting quality-of-life as a secondary outcome?
Unfortunately, in real life we still don't see much data collection on quality-of-life and patient-reported outcomes. On the other hand, new trials and trials that are now starting or are in early recruitment pay more attention to this aspect of care. They start to incorporate patient views and patient-reported outcomes that are related to quality-of-life. As you mentioned, quality-of-life as secondary endpoint is very important in the trials, but also with respect to the approval of the drug, the new treatment procedure, or the health technology assessment phase.
It is critical for clinicians to understand why quality of life and patient-reported outcomes are important for us. Maybe it is a little bit more expensive for our health system to measure these issues, but the success of a treatment is more comprehensive than just its efficacy and the side effects. The value of being able to work again and our ability to contribute to society is bigger than just "Okay, I'm feeling better. I can go out. I don't have such a severe diarrhoea, or I don't have headaches." And it's not just what we report. We have to take into account what this means to the whole society, and not just for the individual person or the patient at hand.
Medicom: We're going into October now, which is Breast Cancer Awareness Month. Could you tell me a little bit about that? What are you trying to achieve?
Yes, Pink October as we say. However, in the past few years I actually call it Crazy October because it's a crazy month for us. Everybody wants to raise attention for breast cancer and spread information on breast cancer just in October. But we know that cancers don't pick month. Therefore, it is important to address people who are eligible to go to screening programs on our awareness days and months. We need to make sure that they respond to the invitations they receive.
We should target the healthy population in particular, but also people who already experienced any of these diseases. One of the core messages is that people should realise that they are in the first place responsible for their health. Promoting a healthy lifestyle, with physical activity, healthy foods, taking care of your psychological wellbeing and attending screening programs is crucial. The importance of a healthy lifestyle and early detection of cancer is what we advocate.
Of course, in breast cancer and also in other cancers, the pink ribbons and colours are helping us to make the healthy population see "oh look, there is a pink ribbon and it has something to do with breast cancer." This element helps us to address random people that stumble upon some of the organised activities or news in the printed media or social media. They may pay a little extra attention their own health because of this. And as we know, most people who attend the screening programs have some health issues, which may lead later to cancer diagnoses.
Medicom: Are there any final words you want to share with fellow physicians who are treating and seeing patients with breast cancer?
TS: I would like to point out that physicians are not treating the cancer, but the whole person. They should talk to their patients about their preferences, lifestyle, life goals, treatment expectations and other relevant issues. Different patients have different perspectives on what is important, with large variations between cultural backgrounds and age groups. So don't treat the cancer, treat the person.
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