Why Self-Advocacy Matters in a Neuroendocrine Cancer Diagnosis
When you hear the words “you have cancer,” it can feel like the ground disappears beneath your feet. Everything becomes overwhelming, especially when the diagnosis is something as complex and unfamiliar as neuroendocrine cancer. In that moment, it can feel easier to let the experts take the wheel while you simply try to stay afloat.
But here’s the truth: your voice matters.
Self-advocacy is about speaking up for your needs, asking questions, making informed choices, and ensuring you’re heard throughout your healthcare journey. That doesn’t mean ignoring medical advice—it means working with your team to make decisions that are right for you.
Why It’s Not Always Easy
Let’s be honest: advocating for yourself can feel incredibly difficult when you’re vulnerable, scared, or unsure of what questions to ask. But even in those moments, you still have the right to:
- Understand your treatment options
- Ask for second opinions
- Voice your concerns and preferences
- Request personalised support
- Navigate the system with confidence
And most importantly, you have the right to be listened to.
Why Self-Advocacy is Essential in Neuroendocrine Cancer
Every diagnosis is unique. Every patient is different. What works for someone else may not work for you, and that’s okay. Here’s how advocating for yourself can make all the difference:
- Understanding Treatment Options
Knowledge is power. By asking questions and doing your own research, you can better understand your choices and decide what feels right for you. It’s not one-size-fits-all.
- Being Involved in Decisions
Cancer treatment is full of big decisions—surgery, medication, clinical trials, and more. Speaking up allows you to play a central role in shaping your care plan.
- Accessing the Right Care
Sometimes, it takes persistence to find the right specialist or push for timely treatment. Advocating for yourself can help prevent delays and ensure you receive care that’s tailored to you.
Fatigue, anxiety, pain—these are real challenges. Talking openly with your team about how you’re feeling helps them support you better. Your experience may not match the “typical,” and that doesn’t make it any less valid.
Let’s face it—the healthcare system can be confusing, especially when you’re dealing with a rare cancer. From getting referrals to understanding test results, self-advocacy can help you feel more in control.
Real Stories, Real Strength
Kate Quirk is a shining example of how powerful self-advocacy can be. After being diagnosed with lung neuroendocrine cancer, Kate took charge—seeking second opinions, educating herself, and pushing for the care she needed. Today, she’s a passionate advocate with Neuroendocrine Cancer UK and INCA, helping others find their voice too.
“I believe that patients have a responsibility to educate themselves and be their own best advocates – information empowers patients to make decisions.” — Kate Quirk
Then there’s Bethann, who brings another important perspective. As someone who is neurodivergent and living with neuroendocrine cancer, Bethann has had to explain that her experience with pain, tests, and care is different from what’s considered “typical.” Her story reminds us that no two journeys look the same—and every journey deserves to be respected.
Autism, for example, can influence how symptoms are perceived or expressed, leading to delays in diagnosis or added distress during treatment. That’s why personalised, compassionate care is so vital—and why self-advocacy becomes even more important.
In this episode of our podcast series, we discuss the importance and realities of self-advocacy while living with neuroendocrine cancer. We explore the challenges and triumphs of advocating for oneself in the healthcare system.
Listen to this insightful conversation with two of Neuroendocrine Cancer UK’s Ambassadors, Lisa and Alan. Lisa and Alan share their personal journey, offering an honest account of navigating medical appointments, seeking the best treatment options, and dealing with the emotional ups and downs that come with being your own advocate.
You Don’t Have to Do It Alone
Self-advocacy doesn’t mean going it alone. Sometimes, it’s just about having someone to talk to, to help you understand your options or even help you put your feelings into words.
We’re here for that.
- 📞 Free Helpline: 0800 434 6476
Available Tuesday–Thursday, 10:00 am–4:00 pm - 🤝 Patient Support Groups:
Local, regional, and online meetups for people affected by neuroendocrine cancer, including family, friends, and carers. A chance to connect, share experiences, and build a supportive community.
Final Thoughts
Self-advocacy isn’t just a skill— for some, it’s a lifeline. It’s how you take back some control in a situation that can feel anything but. Whether you’re just beginning your journey or navigating ongoing treatment, remember: your voice is important, and your choices matter.
If you’re not sure where to start, start with us. We’re here to support you every step of the way.