Topic: New and scared

Hello, my name is Jules, based in the UK, and my mum has suspected intrahepatic CC. Her biopsy is in a week. As you may imagine, I'm so so scared. We are so close and my mum is my rock and best friend. I've read so many horror stories about this cancer and so I was relieved to find this wonderful and supportive site. Judging by the size of the tumour, mum's cancer would be at an advanced stage. The scary thing is that her symptoms are so mild and nonexistent on most days!

One thing I am confused about is the growth rate of the tumour. I was wondering if anyone could answer my queries. Mum has had an 'ache' in her liver area for approximately two-three years. She saw her GP but he shrugged it off as muscular. I presume that this pain was the tumour! On some sites I have read that the tumour grows quickly and that's why it has a poor prognosis but on other sites I have read that it is slow growing? I would have assumed that the slow growing nature of the tumour wold bide you a bit of time but prognosis statistics seem so poor? Can anyone shed any light on this for me?!

Are there any success stories of people who have been diagnosed with late-stage intrahepatic CC? If so, I would love to hear them.

Re: New and scared

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 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.

Clare

In the stars now . . . .

Re: New and scared

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 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.

Clare

In the stars now . . . .

4 (edited by PCL1029 Thu, 18 Jul 2013 15:21:27)

Re: New and scared

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 2.5x2.5x3cm.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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New and scared

Hi Jules,
I had pain under ny right breast for 2 years and it was diagnosed as muscular pain. I was diagnosed in 2010 with ICC. I agree with Percy, you have to treat it like a chronic illness. I'm still here so I consider my treatment successful but it is ongoing. Sending prayers for your family.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: New and scared

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

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: New and scared

Thank you all so much for your uplifting support and advice. This is such a great site and i'm so pleased that i've found you all. As I sit opposite my mum right now, she looks the picture of health and feels well too, it is almost impossible to believe that this is happening. Is it normal for the symptoms to come and go?

I will keep you all updated on our journey. Many thanks and best wishes to you all.

Re: 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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New and scared

Hi Gavin,

Thank you for your reply and best wishes. I am sorry too, to hear about your dad. My mum's biopsy is being done in Newcastle, and I am based down in Oxford. We've had a long journey with all of this as my mum was initially told by the Gastro Consultant that he was "over 90% sure" that the mass was benign. In fact, the radiologist would not do the biopsy as they believed that the mass was a hemangioma, and the risk of bleeding was too high. However, mum's scans were then sent to the liver Consultant, who trained at Mayo, and said that it is CC. With his level of experience, we have no reason to doubt him sadly, but we are living in hope until the biopsy results.

Mum had a brief period of jaundice several months ago, at a time when she was taking a lot of medication for a tooth infection. However, the jaundice then disappeared. Her main symptoms are nausea, a sensation of "pressure" and sometimes a brief stabbing pain around her liver area, and slight fatigue. However, these symptoms come and go, and seem to be better of late, now that she is eating a healthier diet. I understand that jaundice is not so common in Intrahepatic CC?

It's all just so confusing and we're tired of the Consultants chopping and changing their minds. Whatever happens, we plan to get a second opinion. Our GP has already told us that the tumour would be inoperable, but we are fighters and we will not give up!

Best wishes,
Jules