This week I have a heart-warming story of a constituent who has managed to overcome the most discouraging odds to survive a very rare cancer.
John Surgenor was nagged by his wife to visit his GP in April 2009 after some unexplained weight loss. It was after another five months of tests that he was finally diagnosed with a neuroendocrine tumour (NET), an umbrella term for a group of uncommon, slow-growing cancers which can form anywhere in the body but most commonly start in the digestive system.
They are difficult to diagnose because of their rarity and the diverse set of symptoms which may be present, so the average time taken for confirmation is three to seven years by which time the cancer has often spread.
John’s diagnosis took only five months, but although he was operated on very quickly, the tumour was deemed too large to be removed so he embarked on a brutal course of chemotherapy for three months before becoming too weak to continue. The prognosis was not good – his oncologist anticipated a maximum of two more years of life of a much diminished quality.
Somehow, instead of declining, John managed to gain weight and was fit enough to have further surgery in early 2011 which removed his entire tumour and most of the lymph nodes.
I visited him in his home recently and he was full of praise for the medical team and his GP for spotting the problem so quickly.
John is very keen to make people more aware of this condition and I am happy to pass on some information here which might help to save other lives.
In any given year 3-5 people per 100,000 in the UK are diagnosed with new cases of NET cancer, but because the tumours grow so slowly doctors believe that many more people might be living with them unwittingly.
Often NETs are only revealed during tests for other conditions such as IBS, ulcers or gallstones.
Some symptoms can easily be attributed to other causes, for example hot flushes experienced by women.
NETs require a multi-disciplinary approach by specialists from different fields – endocrinology, gastroenterology, oncology, surgery, radiotherapy, genetics, nuclear medicine and pathology, and clinics centred on NETs are now being set up around the UK and Ireland.
If NET cancers are detected early, they can often be cured with surgery.
The NET Patient Foundation is the only charity in the UK dedicated to providing support to people who may be affected by neuroendocrine cancers.
There is a wealth of information on symptoms and treatment to be found at http://www.netpatientfoundation.org and John has also asked me to pass on his own contact details as he is happy to set up a West Sussex Natter Group for anyone affected by NET cancer. Please contact him on firstname.lastname@example.org.
John still has a CT scan twice a year and has become an insulin-dependent diabetic, but as you will see from the attached photograph, he looks pretty fit and well now thanks to some very diligent health care.