Thread by @Dr_LynnKettell

Today is #WorldNeuroendocrineCancerDay - a condition I was diagnosed with 6 months ago. This uncommon type of cancer causes malignant neuroendocrine tumours (NETs) to develop. #NETs affect all ages & genders, can happen anywhere in the body & are often slow-growing 🧵1/

Often referred to as 'rare' #NETs represent the 2nd most common gastrointestinal malignancy after colorectal cancer. They are as common as myeloma, testicular cancer & Hodgkin's lymphoma and more common than brain, ovarian & cervical cancer combined 🧵 2/

Like myself, many patients will have metastatic advanced stage disease at diagnosis. Although incurable, #neuroendocrinecancer is treatable & there are many options for treatment including surgery, somatostatin analogues, peptide receptor radionuclide therapy 🧵 3/

...targeted therapies, ablation techniques, immunotherapy, chemotherapy & radiation therapy, with more treatments being clinically trialled. This has helped many patients live a good quality of life for much longer. 🧵 4/

Unlike other metastatic cancers, the prognosis for many #NET patients can be excellent. As my specialist said 'it will shorten your life but not necessarily significantly so.' I'll take that & I'm super-grateful for the ongoing lifelong surveillance I will have after surgery 🧵5/

I have now recovered from surgery 10 weeks ago to remove primary (GI) & secondary (breast) tumours and affected lymph nodes. As my #NETs were non-functioning, I didn't have any symptoms before diagnosis. Mine was picked up via routine #NHS screening 🧵 6/

However, many people are misdiagnosed & see their GP on average 11 times over up to 5 years before referral & a correct diagnosis. Please be aware of the symptoms ⤵️ & help raise awareness for this uncommon, but not rare, cancer. Early detection = improved outcomes! 🧵 7/end

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