New and scared

Hi Jules,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you’ve joined us all here as you are in the best place for support and help, and I know that you’ll get tons of both from everyone here. I came here after my dad was diagnosed back in 2008 and at the time it was the best thing that I could have done.

I too am in the UK, in Dundee where my dad was diagnosed and treated. Can I ask where your mum is getting her biospy done? I can so understand you being so scared, that is very normal. But you are not alone now, you are here with us and we know what you are going through. In my dads case, he showed no symptoms at all until his jaundice appeared, yellowing of the skin and eyes and his GP sent him to hospital for testing. He spent over 3 weeks getting all the tests, ultrasound, Ct etc before getting his diagnosis of inoperable CC. As to your question re symptoms and normal for them to come and go, what symptoms do you mean?

Yes the stats can make poor reading, so my advice to you would be not to read them. We try not to pay too much attention to stats around here and many of them are so out of date anyway. Like Clare has said to you, there is much evidence of hope around here! Many of our members or their loved ones have been told this that or the next thing re stats and prognosis only to have things change once a treatment starts. Please stay positive as a positive attitude will carry both you and your mum far.

We too are glad that you have found us all and we are here for you. Keep coming back and please let us know how everything goes for your mum. Let us know what the biopsy shows and what treatment plans your mums medical team advise. And keep asking the questions as well. The better informed you are the better equipped you will be throughout, especially when it comes to making treatment decisions.

My best wishes to you and your mum,

Gavin

My husband was diagnosed with cc in November and I am fairly new to this forum but from what we understand from our doctors is to try not to pay too much attention to the statistics because every person is different. Gordon is getting ready to have a liver resection and the drs and us will be going scan to scan after the surgery, praying it does not return but if it does we will attack it!! There is one person on here that his wife a surgery in 2005 and she is still doing good. But this isn’t always the case….it is so scary with the unknown about this decease but this is such an amazing forum to help with some of those questions. Good luck to you I pray you can find some peace and comfort from all of us.

Heather

Hi,
I am a patient like your mom for 53 months now. I am not a doctor.

What I can say is relatively speaking cholangiocarcinoma(CCA) is a slow growing tumor for the fact that, like your mum, who may have this disease for over several years especially if the diagnosis is intrahepatic CCA .
I also timed my recurrence for my tumor grow rate; it took about 10-12 months to grow an intrahepatic tumor from nothing to about 2.5×2.5x3cm.Based on CT scan results.
I also believe every patient ‘s tumor growth is different with regard to age, health conditions in the past as well as when the CCA is diagnosis.
I can even suspect that for the SAME individual,when recurrence occur,the actual cause of the recurrence may be different than when the first diagnosis was made too. I do not have medical scientific articles to prove my concept; but i am a 3 timer(having 3 recurrences in the last 53months) and like experimenting on my disease. but I am no doctor just a patient who was forced into researching this CCA subject more than I want to.

I suspect gene mutations caused by pre-exist disease conditions like PSC,Hepatitis b or C; ulcerative colitis will do the damages.
on the other hand, enviromental causes such as eating raw fish from dirty rivers or ocean edges nearby will do the same damage. That is why ,when i buy fish, frozen or not, I always check the origin of the country, I only buy North Atlantic ,Canada and those which caught from the States. and I always tell my children who are in their 20-30s not to eat sushi with RAW fish in it especially from INexpensive sushi places.

It depends what your expectation about the “successful stories” will be for a Stage IV patient if it will be the case for your mum.
If you mean to see a cure within the next 5-7 years; it may be a bit tough;but if you can use surgery, radiation such as ablation or immunotherapy and chemotherapy to manage your mum’s CCA as a chronic disease like diabetes;then your expectation of being a successful story will not be far behind.

God bless.

Hi Jules,

Welcome to the forum. I am sorry that you have had to come here and that your mum is ill but believe me, you are in the best place for credible advice and support. It is a very frightening time and there must be so much information that you are trying to compute and understand.

I’m not expert on fast/slow growing tumours but my understanding is that the poor prognosis comes from the tumour being extensive by the time any symptoms show making treatment difficult. There is hope however and there is evidence of it here. I can’t deny the prognosis stats make for hard reading but there is also a lot of misinformation and it wasn’t until I came here and http://www.ammf.org.uk (UK site for cholangiocarcinoma) when my sister was diagnosed that I got credible information and importantly, support.

There will be others along soon – there is never a shortage of support and answers.