clarem

Hi Heather,

My sister who was 41 had her resection aborted. When she went for surgery, her tumour was more extensive than the scans and imaging had shown and her surgeon who thought pre surgery that it had been there for about a year said that once he saw her liver, the tumour had been growing for years. Also, Prior to her surgery, she had portal vein embolisation which was basically where the blood supply to the right side of her liver was shut off to make the left side grow. This was done as her tumour through the right and mid section of her liver only left her with 14% of her liver unaffected and what was to be left behind had to grow to 25% to avoid liver failure. The gamble of doing the embolisation procedure was that the tumour might grow rapidly during the 4 weeks it took tp grow her liver. Unfortunately it did grow and along the entire length of her liver and left the surgeon with no possible way of removing tumour without leaving exposed tumour behind.

The surgeon did a stomach bypass though before he finished as he foresaw the potential for an obstruction and thankfully proactively dealt with that for her.

Looking back, the odds were against her from the start, not like the plan the surgeon has for Gordon. There are positive stories here and I know my sister would do the same surgery again if there was any glimmer of hope. Whilst being suitable for surgery is exactly where you want to be with this disease, I understand your anxiety.

Xx

Hi Dorien,

When my sister was diagnosed, her surgeon said her tumour was aggressive and he thought had been growing for about a year (no mention of fast or slow at that point). When he opened her for her resection (which was halted), he said that the tumour had been there for years. Less than two months later this came up again, ‘aggressive but slow growing’. I asked how it could be both and was told that the cancer had to be aggressive to get past the young, fit, healthy immune system that she had (she was 41 with no medical history). Apparently she threw many curve balls at her consultant and caught him off guard in several occasions. I think CC is one big curve ball.

Hi Randi,

I too wonder if those affected in young age are disproportionally represented because they are more IT aware and online as a way of life. Compared to my dad who thinks forums and Facebook are voodoo and all things evil i check,in here every day ot two. It seems at times that going by the posts that there is no distinction in age groups despite all the credible medical saying it is even rarer in those younger than 60.

Hi thebombpie4,

I love your honesty. You have asked what I was desperate to when my sister was diagnosed but didn’t have the nerve. I only found this site several weeks after her diagnosis and one week before her (aborted) resection.

Hi Danna,

I just want to welcome you. You won’t regret taking the step fom lurker to poster. I lurked here when my 41 year old sister was diagnosed last year. The support is just incredible.

Hi Sandie,

I just want to send you some strength and support. I am sorry it has recurred but use us here to help you through this next stage.

X

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.

Dear Pam,

I’ve not ignored your post, I’ve been camping with no Internet access. You are in a place no parent should have to go to and I’m at loss what to say as nothing makes it better or easier. Let us help you here, in whatever way that is Pam.