Description

We're going to be meeting Oriana, who was diagnosed at 22 years old with a rare form of ovarian cancer. But thanks to her own resourcefulness and her incredible persistence and despite a number of relapses, she found the right treatment. And for the last eight years, Oriana has been in remission. She has also joined the Servier's patient engagement program and shares her views about the value of incorporate patients' insights in medical research. 

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Transcription

• Voiceover

  Patient's Side of the Story. Stories by Servier Saclay Patient Board.

• Tom

  Hello and welcome to Paris Saclay for this episode of The Patient's Side of the Story. This series of podcasts is the result of an unprecedented collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. For several months, this board has been working with the Servier teams to try to better integrate patients' perspectives within the new Servier R&D Institute at Paris Saclay. And this series of podcasts is one of the key projects in this collaboration, with patients who've been kind enough to share their personal experiences with us. Today we're going to be meeting Oriana, who was diagnosed in 2011 with a rare form of ovarian cancer. At the time, she was just 22 years old. Thanks to her own resourcefulness and her incredible persistence, and despite a number of relapses, she found the right treatment. For the last eight years, Oriana has been in remission, and she joins us now. Oriana, welcome to this edition of the Patient's Side of the Story.

• Oriana

  Hi Tom, thank you. It's a pleasure to be here speaking with you.

• Tom

  Thanks, Oriana. Could you just start by kindly telling us a little bit about yourself?

• Oriana

  Yes. So, I am a Portuguese psychologist working remotely. I live with my husband and my adorable cat. And as you mentioned when you introduced me, I am also a survivor of a rare type of cancer. And... As a positive consequence of my lived experience with cancer, I became a patient advocate.

• Tom

  So in 2011, you were just 22 years old, studying, as you say, for a degree in psychology, and then this devastating diagnosis. Presumably, your initial reaction was one of total shock.

• Oriana

  Yes, a reaction of shock and all set of emotions and thoughts. It was insane to be an ordinary girl and suddenly have my life fade to a life-threatening illness. It happened all so fast. On top of everything, I learned the diagnosis on December 24, so, two days is after the surgery. I entered to the OR just knowing I had a large tumor in my ovary. It could be benign. That was what I was hoping for. So on the 24th, when the doctor gave me the bad news, I was overwhelmed. I was feeling like I was not processing it. It was like I went into a kind of trance. And when I returned to myself, I realized the emotional pain I was actually feeling was similar to what I felt after the death of my grandfather. So I realized I was mourning myself.

• Tom

  There wasn't much information about your cancer at the time, was there? What did the doctors tell you?

• Oriana

  Well, they said to not Google it. Well, actually the first interactions were really traumatic. They were deciding on my treatment, but not reassuring me that I had a chance of getting well. I was immediately advised that the prognosis was poor, despite the early stage, and that there were no treatments known to be effective. So basically, I didn't feel seen as a person. I felt that they were seeing me as the disease. The disease was bad, so there was no way out. And this just reminds me, when I relapsed the first time, like one year after, some months after, the director of the gynecology unit from the oncological hospital were telling to me and to my family that he didn't know if anyone on the team would be able to make my surgery. When my mother asked him what he wanted to mean saying that, he said that afterwards they would only have palliative care for me. So this was in 2012 and we are in 2023. I feel this sounds really crazy, right?

• Tom

  Yes, it certainly does. Crazy as well as terrifying. And finding the right treatment was a real challenge. And it's fair to say that there were times when you really just had yourself and your family to rely on.

• Oriana

  Yes, I guess it's fair to say that. I see my parents, my brother, my single aunt, and even my cat as my main pillars during this journey. Everyone was playing a different role in this. For example, my mother and I, we are very connected so we were supporting each other emotionally. My aunt, for example, she was super important to establish conversations with us because she speaks very fluently English, German, and Spanish. And my parents were also my financial support. And this also played a fundamental role in my journey because their support helped me to have access to the treatments faster. And another thing I really appreciated on my parents was the fact that they always asked me what I wanted to do. They never tried to impose me or suggest me the treatment. So they always asked me, "do you want to go to anywhere else? How can we do this?" I also had two good friends from college, but we were living in different cities, so it wasn't that easy to be around. And in the end, I also feel like the patients and the caregivers I met online through online communities played a very important role.

• Tom

  You found an online support group and it made a real difference, didn't it? Why was that?

• Oriana

  This community to me was completely game changer because, mainly because of three things : The first thing, I could confirm that not every patient was dying and some were already long-term survivors. The second thing was that I could confirm some errors and negligence in my process, like wrong surveillance tests and also sharing my treatments with others. So if I was not in this community, I couldn't share information. And finally, the third thing, it was the access to the researcher who was interested in studying this kind of cancer. So this allowed me to participate, for example, in one study that helped the scientific community to find the oncogene for this cancer, or later to be one of the case studies for immunotherapy for patients with this type of cancer.

• Tom

  So it sounds like that support group was incredibly valuable.

• Oriana

  Yes, of course, and some of the relationships I established with the patients there, I still have them. I even met him face to face. So yeah.

• Tom

  Oriana, did you make some changes to your lifestyle and your diet at this time? Did you find that something that worked to help you through the difficult times?

• Oriana

  Yes, I was inspired by other patients' testimonials, not only from the community with my type of cancer, but patients' testimonials in general. I decided to try things they mentioned as helpful. I found out I felt better and feeling more in control, changing some habits. And when we started immunotherapy, it also made sense to me to try to do everything to boost my immune system. So I tried an anti-inflammatory diet for a while. I took probiotics. I did supplements. I exercised. I did meditation and even tried to sleep more. Also started avoiding places that allowing me, sorry, that allowed to smoke. And nowadays I am not so strict with diet, but I keep exercise as part of my routine.

• Tom

  Now, you're based in Portugal, you're from Portugal, but the fact that you got through all of this is thanks to lots of factors, public and private healthcare there in Portugal, but also clinics in Germany, Spain, and to a certain extent, more international support.

• Oriana

  Yes, I was in touch with people from the German community, and they were from other countries, mostly the US as well. The strangers that inspired me... I mean the other patients and the other testimonials I found that is for me, so patients who would defeat the odds. To not mention that I could access the immunodrug early on 2015 because it was approved by FDA in December 2014 for melanoma. And this clinic in Germany could access the international market that quick.

• Tom

  That's amazingly lucky in terms of the timing regarding access to immunotherapy. You've now been in remission for eight years. What would you say was the one key factor behind your recovery?

• Oriana

  Well, I would like to say, yeah, it's because of this. Well, pragmatically speaking, it was immunotherapy, the only thing it was proved. But I think it's a multifactorial key. As you said, I was lucky of having the treatment early on 2015, so I can identify several moments where luck was on my side. I can remember some moments that I was having some kind of epiphany. For example, one doctor told me once that considering how ill I was and the severity of my disease, I was surviving with few treatments and feeling healthy. And in one way, this made me feel like maybe I still had chances with a new drug. This conversation shifted my mindset, empowered me somehow. I also think that my perseverance and my inner will of self-preservation have a massive impact on it. I could be completely broken and quiet for a day, but then I could always find a way to get rid of it and start searching. Just saying this. Yeah, searching, definitely, definitely, fed my hope, get information, helped me to design a plan and take decisions. So, reading about new treatments and patients surviving against the odds were my... let's say, my ritual magical pill.

• Tom

  So Oriana, how are you feeling today?

• Oriana

  Well, I'm feeling pretty well. It's always good to look back and see how I did not lose my mental health or became unhappy. I remember that sometimes, well, those blue days, I felt like I was done and nothing was making sense. So I feel... like if I survived I wouldn't be happy again and I was completely wrong I still have my meltdowns and dramas with silly things and I see this as normal thing too but I really do not care with the same intensity or importance to trivial things. I see myself passionate for life and I guess I feel more ready to deal with uncertainty nowadays, in a way. And one of the things that makes me feel really happy now is feeling free to plan things months ahead, years ahead, like the cruise I will do soon. Because when I was, or before giving therapy, I was living life like drop by drop.

• Tom

  At what stage did you become a patient advocate? And what about your relationship with Servier? How did that come about?

• Oriana

  Well, I started by doing self-advocacy, as I've been telling you in my story. And when I joined in the Yahoo group, I started sharing information and trying to help other patients. And... At that time, to be honest, I didn't even know that person advocacy existed. I think the turning point was when I came out of anonymity and gave an interview to talk about my situation. I started to be more sought by patients after my testimonial and tried to support. Suddenly, I was even looking to gain more knowledge in education in this area. After taking the patient expert training with EPATI, the European Patients Academy on Therapeutic Innovation, I started to participate in advisory boards. A few months after ending my training, I received an email inviting me to join the Server Circle Research Institute Project as one of the opportun fellows selected to be part of it.

• Tom

  You've been guiding people who've approached you and who are going through similarly difficult times. How have they reacted to you?

• Oriana

  Well, I only have the feedback from those who contact me. So it might be a biased perception, but in general... When people approach me, they say that my story is hope to them and ask me some advice how to navigate or when to stop immunotherapy, for example.

• Tom

  I'm sure it's been incredibly valuable to them. And what has patient advocacy brought to you?

• Oriana

  Well, I guess a lot of things but... Serenity, a feeling of purpose, it's like a way to transform something that was really bad to something helpful. And looking backwards, I had those days, as I said before. Nothing was making sense. And now I can read my own story in a different way. Every single thing is connected. Also being a patient advocate has put me in touch with so many incredible and inspirational people. It's fulfilling so many levels.

• Tom

  Are you still going for regular checkups, Oriana? And how do you feel every time you go for one?

• Oriana

  Yes, last year I finally started having annual checkups. I mean, previously they were much more frequent because this cancer tends to come back very quickly. So nowadays when I have the checkups I feel much more calmer or in control, despite of having some thoughts in me to the fear of a recurrence appears. I can't call rationality and stop that negative world. While in the past I could feel my anxiety growing a month before, during the period I was doing scans every month and a half. I was in constant alarm, as you can imagine. I never thought I would ever be able to, but these days I can't even fall asleep on the MRI machine.

• Tom

  Oriana, what advice would you offer to someone who's struggling to find the treatment they need, just like you did 12 years ago?

• Oriana

  I guess the key advice would be to have a good network. In my perspective, knowledge is power, but I know that not all patients want to have information or can deal with it. Let's say it's very intense, it's emotionally intense to have a severe disease and all this news. So I would advise patients to self-reflect on what they can handle alone or in what situations they may need help, and surrounding themselves with people who can support them and have an active role. For example, going with them to the appointments because this can be a good way to cope. If you go with someone else to an appointment, you will have an extra pair of ears. It can be someone close or look for patient advocates and patient organizations to guide you and educate you. And of course, I think it's also fundamental to find a medical team you can trust, a team that you feel discuss the options with you. In the end, it's about people, the right people and having knowledge.

• Tom

  Just lastly, for someone whose morale is low and who's in a place a bit like where you were between the years 2011 and 2015, what advice would you offer them to boost their morale?

• Oriana

  Well, I hope that this helps, but I would say find what works for you to build your hope. Be proactive, believe in yourself and in science because research is happening every day.

• Tom

  Well, that sounds like great advice. That's all we have time for. Thank you very much indeed, Oriana, for being so generous with your time and sharing those experiences. And I'm sure that testimony will be really inspirational to people who are listening. So thank you very much.

• Oriana

  Thank you, Tom. My pleasure.

• Tom

  Thanks again, Oriana. And thanks to you for listening. We hope to have you with us again very soon for the next edition of The Patient's Side of the Story.

• Voiceover

  Patient's Side of the Story. Stories by Servier Saclay's Patient Board.