Most people in life know someone with cancer. Or are knowledgable about signs or symptoms of some kind of cancer. However the rarer less known conditions need the help of Doctors, writers, patients, etc to promote awareness to get their name out there and help others know what to look for. “Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common and potentially more likely—diagnosis. In oncology zebras have to be thought about. If a clinician isn’t as familiar with rare conditions, they may spend too much time looking for the proverbial horses. One such rare disease is Neuroendocrine Cancer and carcinoid syndrome. November 10th is Net Cancer Day. For the patient and the diagnosis it is all so important for the doctor in the big important Think zebra not horse.
Getting a diagnosis of Net Cancer can be difficult. It often goes misdiagnosed and the diagnosis is delayed and very often a person is told they have the cancer once it has spread to other organs and is incurable.
Living with Nets and carcinoid syndrome isn’t always easy. There are days it can really take over your life and just getting out of bed is a real struggle. However, there are great treatments and support networks out there to help you on your way. Looking after your body, eating the right things, meeting up with people and talking can all help in your cancer journey. I certainly know meeting up with likeminded people from The Ann Edgar Charitable Trust and sharing experiences has been a lifesaver. Making super friends along the way, the only down side is losing some dear ones to this damn condition.
On this eve of Net Cancer Day I think of the amazing buddies I have made since the day I was told I had carcinoid syndrome. I keep up with and chat to friends we share what’s going on in our medical life. I have lost and miss some lovely zebra, including Ann, Didi, Pam, Janny, Margaret, Becky, Norman, Linda. Celebrity zebra have included Audrey Hepburn, Steve Jobs, Aretha Franklin.
Audrey Hepburn’s son did a newspaper interview – you can view it HERE
Common symptoms of NETs include:
- Flushing (redness, warmth) in the face or neck without sweating.
- Diarrhea, including at nighttime.
- Shortness of breath, rapid heartbeat/palpitations.
- High blood pressure.
- Fatigue, weakness.
- Abdominal pain, cramping, feeling of fullness.
- Unexplained weight gain or loss.
- Wheezing, coughing
The symptoms of a neuroendocrine tumour depend on where in the body it is and what hormones it produces.
Diagnosing neuroendocrine tumours
Many tests can be used to diagnose neuroendocrine tumours, including blood tests, urine tests, scans and a biopsy (where a small tissue sample is taken for closer examination).
Types of scans used include:
- CT (computerised tomography)
- MRI (magnetic resonance imaging)
- PET (positron emission tomography)
- octreotide scans – where slightly radioactive liquid is injected into your veins and a special camera is used to highlight any cancerous cells
Treating Net Cancer and Carcinoid Syndrome
Every patient has their treatment plan tailor-made for them. No one person is exactly the same. They may have the same germ cell. Could have been diagnosed with almost literally the same diagnosis – it does not mean the treatment will be the same. All our bodies react differently, we give off different hormones, etc. And to be honest we may not have the same attitude to the consultants conversation in the room.
For some people surgery is an option.
Somatostatin Analogues – may be used to help control the secretion of hormones if abnormal levels are being produced
Embolisation – Treatment that blocks the blood supply using chemotherapy, radiotherapy or radiofrequency ablation
Treatments used for some Inoperable and metastatic cancer:
Everolimus is taken as a tablet, sunitinib is taken as a capsule and lutetium is given into a vein.
One reply to “Think zebra not horse”
I’m confused. The article about Audrey Hepburn says that she had pseudomyxoma peritonei which I had never heard of, so I did a bit of reading. I don’t think that it is the same thing as neuroendocrine cancer though both can start in the appendix. Perhaps the confusion arises from the fact that, in addition to being a symbol of NETS, the zebra is also used as a rare disease symbol. In that sense, Audrey was a zebra, just not a NET zebra.
Hope you are doing well!