Patient Stories – Cathy
I shall never forget the look on the physician’s face when he took my hand and told me that abnormalities on my liver were malignant. It made me feel as if I had weeks to live.
But that was just a couple of weeks before Christmas in 2003 – and here I am, still standing!
No-one knew at that point that I had a NET. In fact three pathologists who looked at the biopsy of my liver were not able to identify the malignancy. All they could say was that they believed it was an ‘adenocarcinoma’ of either the breast, bowel or lung.
It turned out they were wrong.
The physician who delivered this news advised me to see an oncologist immediately who in turn suggested that I should start chemotherapy in three days time. It was a complete and utter shock.
I had found myself in this ‘cancer land’ for just a matter of days. It was frightening and disturbing and had come out of the blue.
At the end of November 2003 I had some severe abdominal pain that would not go away. My GP sent me for an emergency ultrasound and the liver ‘lesions’ were first found. Then it was a CT scan to confirm the extent of the lesions, and I suddenly found myself in this world where the language was all too familiar – morphine to help the pain, chemotherapy to attack the disease.
Until this time I thought I had been well, exercising regularly at the gym, walking the dog, holding down a job in journalism, writing books, enjoying life with my husband and two teenagers. There was no evidence of any malignant disease yet here it was, found in my liver. I knew enough to think that was not good news.
I agreed to start chemotherapy but on the proviso that I could a) – stop if I wanted to and b) could seek a second opinion at the Royal Marsden, which I duly did.
In my second cycle of aggressive chemo (the type normally prescribed for metastic bowel cancer) I had another liver biopsy at the Royal Marsden. To cut a long story short the professor in charge of my case was finally able to deliver the verdict – I had a neuroendocrine tumour. It was in my liver but he could not tell me where the primary is or was. This remains the position today – I have a NET but of unknown origin. There are a small percentage of patients in this bracket – we are the unusual amongst the rare.
Despite over 20 years in health and medical journalism it was the first time I had heard of the condition. My immediate thoughts were – what is it, where has it come from and what can be done?
On the professor’s advice I stopped chemotherapy. It is not necessarily the front line treatment, he explained. We need to see what the tumour is doing because characteristically these are slow growing tumours. I could have had a particularly sizeable tumour in my right lobe for as long as 10 years, he believed. So even more of a shock. I may have been ill without knowing it.
Today I understand this is a very common situation. NETs can be silent or mimic less serious conditions. Looking back perhaps there were some pointers – I had developed periodic constipation, had some rectal bleeding eight years before, and occasionally had a severe tummy aches for no reason, although I believed I might have become allergic to certain foods.
Like many other newly diagnosed patients the thought that I could have been ill without knowing it was hard to accept.
It was somehow scary to give up the chemo treatment, although it was tough, with side effects, because I wondered what would happen without it.
On the other hand it was a tremendous relief of course because chemotherapy can be a very rocky ride.
I began to research NETs and slowly but surely began to find out more about this little known disease. But at no time at the Marsden was I given any pamphlets or information to read. It was a case of being there on your own – one of the reasons why I feel strongly that the NET Patient Foundation is urgently needed to help patients through this initial phase.
I was reasonably happy at the Marsden even though I had endured a terrible time with the liver biopsy there, but the professor I was seeing did not have a special interest in NETs.
I discovered on the Internet that Martyn Caplin at the Royal Free did, so in May, some six months after my first diagnosis at my local hospital I switched over to the NET clinic under Dr Caplin’s care.
Between May 2004 and March 2005 I was under the constant monitoring that most NETs patients understand – the scans, the blood tests, the regular consultations. It meant travelling to London from my home in Guernsey, but that was quite acceptable. Needs must and all that
In fact when I got of the plane after a trip to the clinic I could almost ‘forget’ about what I had until my next trip over. It was strange, but a way of coping.
Everything looked stable and my tumour just sat there, dormant but large.
Then, out the blue I began to have some strange episodes – three in 2005. In January 2006 it was deemed that these ‘episodes’ were as a result of a large tumour in the right lobe of the liver ‘acting up’.
My body was responding to material coming from the tumour as if it was foreign matter that resulted in fevers, aches and pains, and inflammation.
So it was decided that after months of no treatment – during which I lived well, although cut my work down to part time – that I should consider some treatment.
The first was the monthly Autogel jab. For anyone contemplating this, it is honestly not as bad as it may sound. The needle is wider but I am a terrible wimp with jabs and honestly it was not nearly as bad as I expected.
I have now also been referred for the pioneering Yttrium targeted therapy. There is a plan to have this treatment three times over the next six months and I shall report for you on from my lead lined room (where, I understand I shall have to stay for some 48 hours after treatment).
I am told the Royal Free is the only hospital in the world delivering this therapy that in quite a large number of cases reduces the tumour bulk. and there is now a great deal of interest from other centres. Once my treatment is complete there might be a possibility of surgery – but that is some way off, and I am learning to take everything step by step.
Watch this space and I hope you’ll soon be able to read my Yttrium-blog. I intend it to be helpful to others who may also be recommended for this treatment that is essentially is delivered direct to the tumour via the artery feeding to liver and the tumour.
So what advice can I pass on to someone who has been diagnosed?
1 – Ensure your consultant knows about and understands NETs. If not ask for a second opinion or a referral to a centre that does have a special interest. There are at least a dozen consultants who have this special interest and information about who they are and where they are based can be found elsewhere on this website. Try and get a GP on you side and interested. In my case I had to inform him, which is not ideal.
2 – Don’t panic. Find out as much as you can about NETs because the more you know the more reassuring it can be. Remember that characteristically they are slow growing, although I do have to add that some patients do get aggressive disease who need rapid and immediate attention.
3 – Try and find a way to support yourself on your journey. NETs patients have to cope with a lot of appointments, scans and may have to see a variety of medical professionals.
When I was diagnosed with malignant disease I attended the Bristol Cancer Care Centre for a three days residential stay with my incredibly supportive husband. It was a turning point because it showed me so many ways to support myself and help me to cope. I was introduced to a range of complementary therapies that I still rely on today such as reiki, visualisation, meditation, and reflexology.
I can highly recommend any of these therapies. They help you to relax and to give your body and your mind some ‘time out’ from the difficulties. They can also help when you are having the routine scans and injections.
Bristol was also able to introduce me to vitamin supplements to help support the body during treatments – but do ensure you seek proper medical advice before taking supplements especially if you are having treatment.
4 – It can be hard to explain to family and friends the nature of the disease. Use this website to print off material for everyone to read – it may help their understanding.
5 – One of the key things I have learnt is the importance of thinking positively, however hard that can be sometimes. When you get any cancer diagnosis it is always shattering, and worrying to say the least. But supporting your body, and learning new strategies to cope, may help a little.
6 – I have learnt that even when you have a diagnosis of metastic disease it is not the end of the world. There are treatments that can be offered to NETs patients that may not be available to others who have cancer that has spread, so in some ways we are more fortunate. I have since met or been told about patients who have metastic disease who have been attending clinics for as long as 10 years – without any need for treatment. Hearing this has been a great confidence booster.
7 – Much work needs to be done to alert people to NETs. Try and get involved in helping to raise the profile. This can also be very therapeutic and helps with the positive thinking.
