Sorry you have had to join us but hope that you get some support through the forums. I was diagnosed with liver mets nearly 2 1/2 years ago and it does get easier in many respects - always a rollercoaster though of emotions.
I don’t know whether you could make it up to London but some of us meet every few months up there - next one is in 2 weeks time on October 15th. You’d be very welcome and I certainly have always found being able to talk face to face with others in the same situation so helpful. There are details in the Meet-ups section.
I too am truly sorry that you have had to join us, but you will get some great support here, information and advice. I was also diagnosed with liver mets just over 2 years ago (July 07), in my case I had a double whammy with bc and mets all at the same time.
It does get easier, although the worry, heartache and sadness never goes away for me, but day to day living does get back to some normality. I had no choice as have 2 children, they are now 5 and 2, so for them routine has to carry on.
I hope that everyone else is doing as well as can. Sorry not been on much, as usual, but life is so hectic at moment, with school and preschool runs, major probs with our loft conversion and facebook gets in my way too lol. I do touch base though and read wot everyone is up to and how things are going.
I hope to make the 15th as I said on the meetup page.
welcome Fiona - I’m another with liver mets - you will get a lot of support here and I am planning to go to london meet up so maybe see you there…jayne
Yes, facebook is very addictive. I have also found a few 'old’friends.
Claire, I was in the position of a huge boob being the first indication of something being wrong. Lots of people give me strange looks when I try to explain that it happened overnight (or rather during the day!!). One night end of Feb 2009 I turned over to cuddle my husband, only to scream in pain as my boob was so swollen.
Good new and bad news. My tumour marker count is now down to 22, somewhat amazed by that. However, I did have a solid mass that appeared and then went away after a few days, but left me feeling tender in my breast and under my arm. My next ct scan is being brought forward in order to investigate. I have my next heart scan this week as well.
Hi - I’m Finn and have posted in other forums but I may have liver mets so I wondered if anyone here could tell me how they got their diagnosis?
I had an US which showed “suspicious areas” on the liver. CT scan followed last Friday and my BCN called today to tell me that they still do not know what these lesions are so I have to have MRI now. My liver profile is normal. Should I be optimistic at this news? If they are not liver mets then what are they that the CT scan couldn’t identify. I am so upset now.
Had mastectomy in June this year, on Tamoxifen and had rads. Also have vascular invasion.
I had a CT scan which showed a suspicious area on my liver, I was in the middle of chemo so they did a second CT scan and the theory was if the area was smaller it was being affected by the chemo so was mets. It didn’t change and so I then had to have a liver biopsy. Unfortunately in my case the biopsy showed that it was in fact mets.
I do know of someone who had areas show up on a CT scan and then had an MRI which showed that it wasn’t mets, I think it was about 18 months ago. I will try to find a link to the discussion.
I will PM you a link to something which gives some info on the other possibilities and why it might not be resolved with CT but would with MRI - it is a bit techie though.
A warm welcome to Kirsty, Claire & Fiona. I’m sorry you had to join us but I hope you find some solace and support in this forum.
I’ve not been visiting forums much lately as I don’t seem to have the concentration these days. This chemo is definitely taking its toll now as I’m realy tired and can’t muster the energy or enthusiasm to do what I used to. Even gormless shopping has lost its appeal. I am also breathless quite easily - not sure if that’s chemo-related or my lung mets growing more. My onc will bring my scan forward if my symptoms worsen, but I can’t tell what’s a chemo-related symptom or not, because I do remember being breathless and hobbling like a 90 year old towards the end of Tax/Carb.
I’ve got cycle 5 on Thurs and instead of feeling that the end is in sight I feel like I’m standing at the bottom of a mountain I need to climb.
Blimey, it’s 4.36am - not sleeping well at mo. I am going to love you and leave you and try to get some sleep.
hi hope someone can help i was dx on may 2 lumps mx due but had some probs so they started chemo had 3 fec great lump shrinking 2 tax made it grow back to onc so he stopped chemo as sais i was not coping with side e am due to have mx oct 17 but now bc rung y day said my liver count is very high and ive got top go for urgent scan they not sure if means cancer spread to liver or she said onc said might just be the chemo and tax thats caused raised level any advice wld be great worried sick now family are so upset many thanks laura x
I’m sorry to hear that you’ve had such a rough time with your chemo regimes. I know it’s a very scary prospect that you’re facing, but high liver function test results don’t necessarily mean liver secondaries. Most chemo drugs are filtrated via the liver and Taxotere is a particularly aggressive drug. Given the severe side effects you’ve had with it so far, I think it’s reassuring that your oncologist thinks the Taxotere may have aggravated your liver. It’s going to be a stressful wait for you, but a CT scan is the best way to get an accurate picture of what’s going on.
Good luck Snoogle. Fingers and everything crossed scans come back OK.
I am now joining u, as got to have mammogram, ultrasound, FNA test and then my usual ct scan. Lump in my boob seems to be growing again at th moment, although not as big I dont think as at the beginning, but freaking me out, in case means my liver doing the same and that Herceptin is starting to fail for me. Although BC Nurse didnt think this the case yesterday, nor my onc. So got everything crossed for myself.
So got 2 weeks of crap, having all the scans/tests and then see onc again in 2 weeks time with results.
Thanks for your message. Have to wait until 20th for results, but trying to keep a level head. Had to have my heart scan done twice as they are doing some kind of audit. Still had the good looking radiologist this time, so didn’t mind too much!
Dawn, as in pm, try not to worry too much. Hope you get good results.
Thank you for your replies everyone. I am still waiting for the MRI on Thursday but my GP gave me a little more info about the CT scan findings: there are 3 quite large lesions, the largest is 3 x 4cm and is the haemangioma. The other two are unknown but not typical of mets. There are scattered small lesions all over which are too small to characterize by CT scan, hence the MRI.
I would really like anyone who has liver mets to briefly outline their diagnostic process and whether they had one tumour or several. Also if the little ones are still too small to call what happens then? I imagine they will be too small to biopsy?
I have been waiting too long now and going a bit doolally so please forgive me if I repeat myself.
I wish everyone a bit of respite from all the worry and pain.
Thank you again and Debsincornwall - you are a legend!!!xxx
I was diagnosed with bc and liver mets at the same time in July 07. I had quite a lot of lesions on my liver and 2 bigger ones as well. I then had chemotherapy - 3 x FEC and 3 x Taxotere and after that, when I had a ct scan, there were only 2 visible. I have since been on Herceptin - had no.32 today!!!
I have been told that although most of the lesions are not visible on the ct scan, they could still be there, and may be too small for ct to pick up.
I hope that you get some answers and also that your treatment works on your liver as well as mine has so far.
Hi Girls,
Sorry to hear Dawn, Snoogle and Faith4 have worrying symptoms and test results to get through - best of luck with those. Sorry to hear Ripley and Debs are struggling at the mo, and sounds like KatieP is too as she’s pulled out of the London meet-up.
Welcome to Laura and other newies on this post.
Faith4 - I had a CT scan because I had funny blood sugar levels prior to my BC diagnosis, and they wanted to check my pancreas. Found a ‘lesion’ on my liver. MRI scan confirmed it was mets. This was April 07 just after primary diagnosis. I responded really well to Taxol and herceptin, showing shrinkage and dead-looking tissue on later scans (or should I say my liver responded really well - the rest of me was a wreck!!).It’s been stable ever since. I had RFA (radio frequency ablation) of the tumour area in March this year, just to be sure it was as dead as possible! There’s lots of threads about RFA if you want to know more.
Hope to see some of you tomorrow at the meet,
lots of love - will be thinking of you all
Jacquie x
So many people with huge worries at the moment - hope that you all get some good results and that your worries turn out to be nothing more than that. I also hope that those who aren’t feeling well do start to feel better soon, and treatments start to work.
Faith4 - I had a PET CT scan because my tumour markers were raised and that showed a tumour in the liver (nearly 2 1/2 years ago). It was later discovered to be a cluster of tumours rather than a solitary one but this didn’t show up on either PET CT, CT or MRI. Since then I’ve had various clusters of tumours “pop” up throughout the liver - concentrated in 4 areas. Hope your MRI clarifies what is going on for you - the waiting is just awful.
