I have been diagnosed with Secondary cancer in my liver

Dear dwendi 

I was wondering what kind of chemotherapy you have been offered by your consultant, I know many people have concerns about the side effects but having had extensive chemotherapy myself for a incurable type of cancer it was not as bad as I imagined it would be, and I am now in remission so it was worth it. Are you getting good support from the NHS in the Isle of Man ?

best wishes

Hi Dwendi,

I was diagnosed with Unknown Primary with secondaries in my liver 11 years ago.  Had chemo (tablets), no side effects, plus one bout of radiotherapy.   Since then I have led a normal life with no further treatment and Primary still not found after all sorts of different scans. At the end of last year I had a liver biopsy and octreoscan which suggested my liver tumours were Neuroendocrine tumours (NETS) which are easier to treat and not as aggressive so I’m still hopeful for a bit longer!  I’m not saying that yours are the same but from only being given 2 years 11 years ago, you can see that there is always hope. My oncologist is called an Upper GI (gastrointestinal) oncologist and has been marvellous even though you and I are considered unique and don’t fall into a specific cancer ‘category’.

I live in Bedfordshire so haven’t had the benefit of London specialists.  Good luck and don’t ever give up xx

Hi Doreen, great to hear you are doing well. Your testimony will give encouragement to dwendi I hope to explore all  her options.

Thank you for the reply you are the first person I have heard of having similar diagnosis as me, it has given me a lift, I am so down at the moment, very emotional. My Oncologist said that I cannot have pills but will have to have intravenous drip, I asked for pills but he said the NHS will not fund it. He also said I could not pay for them even if I wanted to.

Was your Oncologist private or NHS? Although I live in the Isle of Man I came from St Albans. xx

Sorry for not replying Dwendi but my Macmillan emails are going direct to Spam and I’ve only just found your message. I would go for whatever is suggested because we are talking 11 years ago that I had chemo tablets and they probably aren’t available any longer.  Drugs must have come on in leaps and bounds since then.  My oncologist is NHS and although I see him at Bedford Hospital, his main hospital is Addenbrookes, Cambridge.

It’s early days for you and you are allowed to be upset, lots to deal with.  I tried to tell myself I was the same as ever and not think about the cancer.  Everyone’s different but that was how I coped.  You will find a way - your way.

Best wishes x

Hi Johnty

Thank you for your support i am starting chemo today, after putting it off for so long, who knows what’s in store for me! I am having two types of chemo together, Paxil/carbo, I don’t know if you have heard of it. Yes I am getting very good support from the NHS here. My Oncologist comes once a week from Liverpool, we do not have our own Oncologist. 

Hope you are still well

Dwendi