🌍✨28th February 🌍✨ RARE DISEASE DAY

– so, Let’s shine a light on the conditions that often go unseen! 🎗️💛

Posting today as yesterday I spent long hours in my GP surgery with our patients 😷- There are over 300 million people worldwide living with a rare disease—and now is about them. It’s about raising awareness, improving access to diagnosis and treatment, and making sure no one faces their condition alone.💛

Why are Rare Diseases Called ‘Zebras’? 🦓

Medical students are often taught: “When you hear hoofbeats, think horses, not zebras.” In other words, doctors are trained to first consider the most common diagnosis, not the rare one.
But sometimes, it really is a zebra!

Neuroendocrine Tumors (NETs) are one of those zebras.

🔹 Doctors may never see a case in their lifetime.
🔹 Symptoms are mistaken for everyday illnesses.
🔹 There is limited awareness and research funding.

I never thought much about Neuroendocrine Tumours (NETs)—until I found that someone well known to me was diagnosed with NET cancer. It wasn’t an easy journey for them — it took a long time to get the right diagnosis because the symptoms were subtle and kept being mistaken for other, more common conditions. The uncertainty, the frustration of unanswered questions, and the fear of the unknown made it a tough road to navigate. But thanks to the right medical team and treatment, they are now doing well, and for that, I am beyond grateful. 🙏💛
That’s why today, I want to help spread awareness about this rare and often misunderstood cancer.

What are NETs?

Neuroendocrine Tumours (NETs) are rare cancers that develop in the neuroendocrine system, which helps regulate hormones. These tumours can grow in different parts of the body, most commonly in the stomach, bowel, pancreas, and lungs.
Why is NET cancer often misdiagnosed?

NETs are sometimes called the “silent cancer” because they can remain undiagnosed for years. Their symptoms are often vague and mimic much more common conditions like:

✅ Irritable Bowel Syndrome (IBS) – Stomach pain, diarrhoea, or constipation
✅ Asthma – Shortness of breath and wheezing
✅ Menopause or Anxiety – Hot flushes and sweating
✅ Common Digestive Issues – Nausea, bloating, and acid reflux

Because of this, many people see multiple doctors before getting the right diagnosis, delaying treatment. Early detection is crucial in improving outcomes!

Symptoms to Look Out For 🚨

While not all symptoms mean cancer, it’s important to listen to your body. If symptoms persist or feel unusual, don’t hesitate to seek medical advice. Common signs of NETs include:

🔸 Flushing (sudden warmth, redness, or sweating)
🔸 Persistent diarrhoea or digestive issues
🔸 Unexplained weight loss
🔸 Wheezing or shortness of breath
🔸 Abdominal pain or bloating
🔸 Skin rashes or unusual hormone-related changes

Many of these symptoms can be caused by other non-cancerous conditions—so DON’T PANIC!!! But if something feels “off” for a long time, it’s always best to check with a doctor.

How is NET Cancer Diagnosed? 🏥

Since NETs are hard to detect with routine tests, specialized scans and biomarkers are often needed:

🔬 Blood & urine tests – Look for excess hormones or markers
📸 Imaging scans – CT scans, MRIs, and PET scans help locate tumours
🔎 Biopsy – A small sample of tissue confirms if a tumour is NET

If a GP suspects NETs, a referral to a specialist is key to getting the right tests and treatment options.
Treatment Options depend🏥 on the type, size, and spread of the tumour.

✅ Surgery – If detected early, removing the tumour can be curative.
✅ Targeted Therapy – Uses drugs that block cancer growth.
✅ Hormone Therapy – Helps control symptoms caused by excess hormone production.
✅ Chemotherapy & Radiation – Used for more aggressive neuroendocrine cancers.

Living with NET’s 💛

Many people with slow-growing NETs can live for years with good quality of life when their condition is properly managed. Ongoing monitoring and the right treatment plan can help control the disease.

How Can You Help Today?

🎗️ Support NET Cancer Awareness – Most people have never heard of NETs! Sharing this post can help spread knowledge.
🎗️ Encourage Early Detection – If you or a loved one has unexplained , longstanding symptoms, don’t ignore them.
🎗️ Support Research & Patients – Organizations like Cancer Research UK, the Neuroendocrine Cancer Awareness Network, and NET Patient Foundation provide crucial support.

💛 NETs may be rare, but those affected are not alone. Together, we can raise awareness, support patients, and push for better research and treatments!

https://www.rarediseaseday.org ⟶
https://www.neuroendocrinecancer.org.uk ⟶
https://www.roswellpark.org/cancertalk/201909/neuroendocrine-tumor-survivor-franks-story ⟶