Early-Onset Cancer: Age Should Never Hinder Proper Care

In the inaugural event of the Global Cancer Movement, initiated by OncoDaily, Mila, a patient advocate and communication specialist from Spain, shares her powerful personal journey of being diagnosed with stage 3 colorectal cancer at the age of 26. The virtual event, held from December 6-8, 2024, brought together leading experts and advocates to discuss the unique challenges young adults face when battling cancer, including delayed diagnoses and the long-term physical and emotional effects of treatment.

Hi everyone, my name is Mila and I’m a patient advocate and also a communication specialist from Spain. And I would like to thank you all for being here, especially to OncoDaily for giving me not only the opportunity but also the platform to share my knowledge and also my experience as a young adult with a lived cancer experience. I would love to begin by talking a little bit about my path towards getting diagnosed.

I was diagnosed with stage 3 colorectal cancer when I was 26 years old. And to say that I was in shock would be an understatement because that wouldn’t be enough. I encountered disbelief from so many healthcare professionals that my path towards getting a diagnosis took even longer and was even more difficult.

Even though I was experiencing a lot of symptoms like discomfort, the bloating, constipation, the extreme fatigue, I was dismissed because of my young age. So a lot of them told me that I was overreacting, that maybe I had too much pressure while I was at work, that I was breathing too much while I was eating, or that it might be IBS or Crohn’s disease, even though they didn’t do a colonoscopy. So a year and a half later, they found a tumor, thanks to a colonoscopy, and they decided to do an emergency surgery.

And not even two months later, I was already sat for the first time at my oncologist’s office. It was the first time that I heard that I had cancer. It was quite shocking because I didn’t know anyone, not only my family, but my friends or more closer to me.

There’s not enough conversations about young adults and adolescents with cancer, so it was quite shocking. To this day, almost four years later after my surgery, I’m still dealing with long-term effects like low abdominal resection syndrome, and also long-term effects from the chemotherapy treatment, such as menopause, hormonal imbalances, and peripheral neuropathy.

So now, talking about the challenges that we are facing as young patients, I need to remark that we are a unique oncology population, and we have a specific clinical and psychosocial needs related to that age and the specific state of life that we are currently in.

We need more support, because cancer forced us to stop our lives, and we were developing as individuals, we were just starting our careers, maybe studying, maybe we wanted to have a family or we were raising children, so we were forced to stop everything.

There is often a delay between the onset of symptoms and the actual diagnostic procedure to find the cancer. So my question is, if we know that time is crucial in such a serious illness, why do we encounter an unnecessarily long journey towards that diagnosis?

I do believe that most of us were in shock when we heard about the news, and I think the main three reasons, at least through my experience, are the lack of representation of adolescents and young adults. There’s also an immense taboo around the word cancer, so we don’t talk about it enough, and we talk about it with fear, so we are giving an extra power to the illness. There’s also a lack of information and honest communication about cancer, especially in IAS.

There are so many challenges that we are forced to face, but I could be here for hours, maybe days, but I wanted to talk about the most important ones that I have faced and I still face, and I know other IAs face too. It is an extremely isolating illness and treatment. There’s an overwhelming amount of medical tests and appointments, and that can also be quite time-consuming, but it also takes a toll on your mental health, because you spend a lot of time thinking about the test.

You can have scan anxiety, it’s a term that we use, and that can definitely take a toll on your mental health and your well-being in general. There’s also the fear of recurrence, because even though you do your best to not think that that’s going to happen again, you know that it happened in the past, and that’s a thought that is always there in the back of your mind. There’s also problems with infertility, the hormonal imbalances, you might be scared of intimacy.

Maybe you didn’t want to have kids, I don’t know, maybe you didn’t have that feeling, but now that decision was taken away from you. That power is taken away from you. Something external, someone external made that decision for you, and that can be really tough.

You might also feel lonely, and that can lead to a sense of disconnection from your family and your friends, because they cannot really understand what you’re going through.

I do not think that us as a society are ready or educated to have those tough conversations with patients in general, so that’s also really important. I would love to remark that we have issues or challenges regarding the employment and financial problems too, because yet again we were forced to stop our lives when we were starting maybe to build our career, maybe we wanted to move out, maybe we wanted to study something else, and that was taken away from us.

In our 20s and our 30s, I think we are entering a phase of independence. We are starting to live our own lives. We are making our own mistakes.

We are learning from them, and that freedom that comes with that age gap is definitely taken away from us. The reality is that everything, and when I say everything, it’s everything changes when you get diagnosed and you get the treatment in society, and everyone around you expects you to go back to life or your normal life like nothing happened, and they couldn’t be more wrong. Both healthcare professionals and society need to recognise and be aware that this serious illness has an immense impact on a young individual’s life.

I would love to remind everyone that even though we can read this slide and we can talk about this, those figures are more than just numbers. They are more than just scans, more than just medical reports, more than just patients. They are human beings.

In Europe, around 800,000 people get diagnosed with digestive cancer every single year. Colorectal cancer is one of the leading causes of cancer deaths in Europe, and it’s the third one most diagnosed cancer worldwide. There’s also an increase in young onset colorectal cancer, and that’s why we need to better inform and educate the community at large about these incidents and the importance of screening for both prevention and early detection.

When someone asked me about patient advocacy and what’s the role of a patient advocate, I love to describe this key role as agents of change in cancer control, providing fundamental insights into the impact of cancer and the realities of cancer care. They help healthcare providers and policymakers understand the patient’s journey alongside their needs and experiences, which is critical to improving the quality of life and the treatment outcomes. They also support the translation of their experiences into policy.

They help to ensure that people living with and beyond cancer are included in relevant studies, since they are directly affected by those outcomes. And I do believe that they truly understand the importance of emotional support, the barriers, the challenges, and the need to be seen and heard in the healthcare system. And as an adolescent or young adult, we are not represented, so we need to be heard and seen.

And I think the patient advocate role is crucial to overcome those barriers. One of the most important factors back then and right now, especially in my life, is my support system and also peer support. As I previously mentioned, it is an extremely isolating illness and treatment.

And even on the worst days, we deserve to be heard, supported, and loved. We often feel disconnected and isolated with feelings of anxiety, fear, and worry about our immediate future and also long-term future. With so many medical appointments and tests, we can get lost in the middle of it.

And that’s why having a support system plays such a big role in our lives. It is crucial to have a safe space where you can share your experiences, where you can share your feelings, where you won’t be judged. And that’s why I have to talk about Youth Cancer Europe, because that’s exactly what they are for me and a lot of other IAs worldwide.

So Youth Cancer Europe is an organization that incorporates youth cancer networks across Europe, and it’s a platform since 2015 that works as a bridge between childhood and adult cancer patients across all tumor types. And thanks to the youth guidance net, we also have a Discord server. And this works as that safe space that I talked about in an online kind of way, which is also really beneficial because maybe you don’t have anyone closer to you that truly understands you, but you have this channel and organization and peer support for community, which is crucial.

We normalize and validate our feelings and experiences, and we have three doctors, five nurses, four social workers, eight caregivers, 12 psychologists, sorry about that, and 15 researchers. And we have more than 700 members worldwide. It’s not only Europe, but also North America, Africa.

We have a little bit of everything. And I will also have to mention, like I couldn’t not mention them. I have to talk about Digestive Cancer Europe.

They’re also called DICE, and they are a European non-profit umbrella organization, uniting patients, organizations, and collaborating with stakeholders dedicated to digestive cancers. Their mission is to ensure that every patient receives timely, effective care tailored to their unique needs during a critical time in their lives. Last month, I was lucky enough to be part of their event called ENTERO, and this event was the first international conference dedicated to the urgent issue of early onset digestive cancers.

But I need to say that ENTERO was just the start, because this year they launched a book called You’re Young, But It Might Be Cancer, and it collects young colorectal cancer patient stories. And I’m proud to have shared my journey with them for their next volume, and it will launch in July 2025. And this volume will feature a series from all digestive cancers, not only colorectal as the previous one.

To close my presentation, I would like to say that we need a personalized treatment and approach, because one size doesn’t fit all, that awareness is a tool that can save lives, that there are many unmet needs for ideas, and that we should be involved in the decision-making process. Also, that quality of life is incredibly important, and that survivorship starts with the diagnosis. And just because it is rare doesn’t mean it doesn’t happen, because cancer doesn’t know about it.