Topic: Is this good news? What to do next?

Well, my mum got her first post-chemo (after 3 rounds) scan results today. The scan was an MRI. I think it’s good news but i’m not too sure. To recap, my mum has a 14 x 9cm mass in her liver, with satellites. She is currently on Gem/Cis. Symptom-wise she seems totally fine; you wouldn’t know she was ill. Prior to starting chemo my mum had a few scans and within 3 months with no treatment, her tumours didn’t grow at all - so we were thankful that they seemed to be very slow growing. My mum thinks that she’s had this tumour for years as she’s always had a slight ache in her liver area, which she mentioned to the docs years ago, but they said that it was nothing.

To cut a long story short(er), my mum saw a great surgeon a few months ago, who said that if her tumour stayed stable or shrunk on chemo, then he felt that it is possible to take it out. He felt that the tumour is removable, despite its size, though he really wanted the satellites to be gone before he operated. My mum’s scan today showed that the main tumour has stayed stable, although one of the little satellites has grown by 5mm.

I guess I have a few (million) questions but I will condense it in to three:

1) Is it normal to consider taking out a mass this big?  It seems like a big undertaking to me and I haven’t read anything of the sorts on this board.

2) Our Oncologist says that after the next few rounds of chemo, there’s nothing more that we can do, apart from clinical trials (of which there are none currently running in the UK). I also know from this board that there are still many things to try and we are not throwing in the towel this early in the game. In the UK our docs are a bit restrained as to which drugs they are ‘allowed’ to try out on patients. Any ideas about what we should do next, if the surgeon says no to resection next week? Percy, you’re particularly good with this stuff, and your wisdom here would be greatly received.

3) Also, is it worth getting a PET scan? I ask this because my mum has seemed SO much healthier  on chemo than beforehand, it’s hard to imagine that nothing has changed at all with the cancer. Perhaps a PET would show that parts of the tumour are now inactive, and obviously an MRI can’t pick this up. Just a thought.

Any advice would be greatly appreciated, as always. We do continue to feel a little like we’re fumbling in the dark, but this board keeps us all sane.

Many thanks,
Jules

2 (edited by PCL1029 Thu, 28 Nov 2013 11:59:39)

Re: Is this good news? What to do next?

Hi, Jules,
Since I am only a patient,before I render my opinions,
the link below may help.and if you have further questions after reading the links below. I am happy to answer them.

With regard to the adrenal mass,it can be benign or malignant. the best way is to compare old scans even dating back the first Ct scan a few years ago to see whether the size of the adrenal mass is there or enlarged. Adrenal mass is not always adrenocarcinoma; and that is why you had different opinions from doctors.PET scan is a good choice if you do not need to pay for it in order to establish a baseline SUVmax value to compare with future PET scans.

the message was from Dannyk86

http://www.cholangiocarcinoma.org/punbb … 1210026648

DR. Khan and Prof. Cummingham are the doctors with  a lot of experience of CCA in England.

Gavin just put out  messages about SIRT in Scotland and
the link below

http://www.cholangiocarcinoma.org/punbb … p?id=10921

http://www.cholangiocarcinoma.org/punbb … 626#p80626

Now the question is to try to find out where you can get SIRT outside Scotland,
if  surgery is not and option from The imperial college of London and prof. Cummingham.
2nd opinion for SIRT  treatment is appropriate  at this point due to the large size of the main tumor as well as the other small ones; but be sure the patient is physically up to it, and try to do it as segmental  rather than for the whole liver to minimize the toxicity.

In short, do surgery first if offer; chemotherapy or targeted therapy such as erlotinib (Tarceva) second and  segmental SIRT (NOT the whole liver if possible)as the last option.

Happy Thanksgiving  and

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: Is this good news? What to do next?

Hi Percy,

Thanks for these links and for your fast response. It was actually Dr Khan's team who felt that the adrenal mass was cancerous, which was obviously very worrying to us as they are such an expert team in CC.

I am going to investigate SIRT, I think there are a few centres in the UK that offer it. I've heard very mixed reviews about it and as I understand, there is little research into SIRT for CC?

Happy Thanksgiving to you too.

Jules

Re: Is this good news? What to do next?

Hi Jules,

With regards to SIRT in England, this link should be of interest to you -

http://www.england.nhs.uk/wp-content/up … a-sirt.pdf

I hope to find out sometime soon which centres in England will be offering SIRT to eligible patients, and once I hear more about them I will of course post details here.

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: Is this good news? What to do next?

Just found this as well Jules -

http://www.england.nhs.uk/2013/11/20/sirt-comm/

Hope that's of use to you. You should be able to get a referral for your mum to one of these places if she is eligible for the treatment.

Hugs,

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: Is this good news? What to do next?

Hi Gavin, these are great links, thanks. Interesting about the centres offering SIRT, as my Mum is being treated in Newcastle, which I see is the first on the list smile

Great news!

Jules

Re: Is this good news? What to do next?

Let us know how things go with this Jules.

My best 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.