Hi all.
Lets see, where do I start dx dec 06 with stage 3 bc, had lumpectomy (as lump lied to them pretending to be benign when it wasnt), quickly followed 10 days later by mastectomy, then poisoned for 6 months with e-cmf, then cooked for 5 weeks with rads and started on tamoxifen. Stamped my feet to get sterilised…and the gynae found a huuuuge cyst on left ovary…so put forward for urgent total hysterectomy…which was done 3 weeks later…had first oncologist check on wednesday since all treatment finished in the september…for him to ummm and hmmm over my weight loss (4 stone since september) the fact im never hungry and have to force myself, constant hiccups and lack of sleep from being super hot to super cold…oh the joys. So he examined me and did lots of muttering and hmmming as they do so well when he got to my tummy…apparently my liver is extremely enlarged and he is very concerned …so had the blood tests done there and then on the spot…and am just waiting for the letter to land to get my ultrasound appointment.
A serious case of OFFS, now what…bc to begin with, then petrified with the thought of ovarian cancer…and now possible liver mets…oh the joys.
So was just wondering if any of you ladies out there could give me a clue as to whats what where it comes to liver mets etc…cos i havent got a clue and really dont want to frighten myself with looking online.
Hi Buttons
I know this must be a very worrying time for you and I am sure you will receive some helpful replies from other users in support.
I have given here the link to our factsheet on secondaries of the liver, I know you don’t want to frighten yourself further, but you may find this a useful resource.
breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_liver_0.pdf
This can be either ordered on line or downloaded, perhaps you can read it when you feel ready?
Kind regards
Louise
Hi Buttons
This might be a difficult one to answer because it depends on, if you have liver mets, how advanced it is and therefore the symptoms you have will be different.
Initially with mine it was just not feeling hungry and slightly sick. In 2006 when it had progressed further I was jaundiced, had difficulty in eating, sleeping, walking, etc. plus I had a lot of fluid in my legs. So I’ve had two different experiences.
My advice to you is try and keep an open mind until you know for certain what it might be - fingers crossed it won’t be what you think it is.
All the best
Pinkdove
x
thanks for that. I am trying to keep an open mind…and hoping that its the tamoxifen…but the oncologist, bless him is well, prett sure just wants the tests done put it that way. My ultrasound letter landed this morning and im having that done on friday next week. About the only symptom I dont have is the jaundice…whereas ive got everything else pretty bad if that makes sense, and its been like this for the last 2 months. So just a case of hover about in limbo-land again.
Hi
Good luck with your ultrasound next week. Not everyone who has liver mets has jaundice and the side effects but fingers crossed that it is the tamoxifen.
I’ve also read on some of the posts on BCC and other forums that some people just have ‘fatty’ livers but it’s good that your oncologist is looking after you and wants to double check.
Take care and hope it’s good news for you.
Pinkdove
Thanks dove…needed that.
My oncologist is great…even if he does have a twisted sense of humour…drops a bombshell on you…then tells you not to drink! Hmmmm nothing like really testing what people are made of is there lol.
Im getting my head round both sides of the fence…if it is, well here we go again, if it isnt, well back to the waiting game again…does your head in.
Someone somewhere really has a dodgy sense of humour.
My oncologist is great as well. Saw her this morning and she examined me (on 22nd lot of this cycle of chemo now) and then spent the next 10 minutes talking about other things! That means a lot of me having a good rapport with your consultant.
I’m not surprised you’re having to get your head round both sides of the fence - I’m now nearly 3.5 years post secondary diagnosis and I know of others who are further down the road than me. Went out for lunch with a friend of mine today and she brought another lady along who I haven’t met before and she’s been living with secondaries for the last 6 years which gives you hope.
Good job a lot of us have a sense of humour!!!
I remember, when I was waiting to find out whether it had come back again, feeling in limo land and swaying from what if and then trying to block it out of my mind (not easy!) so I do sympathise with you and can relate totally to what you’re saying.
Pinkdove
Thinking about you buttons. a thread a bit further down than this one describes some symptoms of tamoxifen as like being pregnant, constant nausea, so hope it is that love Eileen
Hi Buttons
As Pinkdove has said, it’s really difficult to know what to say you should expect given that you don’t yet know what you are dealing with. Really worrying time for you as you wait for the ultrasound - will you get the results soon after? It could be the tamoxifen or it could be mets (or possibly something else entirely!). All I can say is that when I was waiting to hear my results last year it was a horrible rollercoaster but knowing that there were many people around with liver mets who were doing well several years after dx, was at least a little reassuring. And despite the dx, I actually felt better once I knew what I was dealing with - rather than that awful “limbo-land” as you put it.
I found out last June I had one large met in my liver (primary dx was nearly 5 years ago). I’ve had 18 sessions of chemo since then and am waiting to go in for a liver resection (the surgeon is removing the right lobe of my liver) at the end of this month. I had no symptoms really initially - met was picked up through routine blood tests - despite the tumour being quite big. I occasionally got (and still get) a kind of stitch in my right side but no jaundice etc. Talking to other people, symptoms vary greatly - as do the treatments.
Let us know how the ultrasound goes.
Kay x
Kay
Hope your liver resection goes well. I’m now on my 22nd session of chemo but I don’t think a resection is an option for me unfortunately because of the amount of tumours I have but you never know - they might all shrink to a size or disappear!! I can but dream!!
I sometimes get a pain in my right side but haven’t done for quite a while now - I found in the early days that I couldn’t even tolerate wine or caffeine - the caffeine I wasn’t too bothered about but the wine! Strange though that it doesn’t bother me now and if I do have wine I tend to have it very weak in a spritzer.
Pinkdove
x
Hi
I was dx with bc in July and then 10 days later told it had spread to my liver after ct scan. I have only had 6 sessions of chemo and am now on herceptin. I had absolutely no idea I had cancer in my liver, as no symptoms whatsoever, felt actually very healthy and still do most of the time apart from my treatment.
My onc is against surgery for the liver, so am getting second opinion with Kays surgeon. Got docs appoint. Monday to get referral and will then hopefully get appoint. in next 4 weeks I reckon.
It is the worst waiting for results and finding out. I was a complete wreck from first dx til found out full story after ct scan, bone scan and mri scan. Brain was going mental think and fearing everything that could be. Once started treatment it all settled down.
I wish you well with your ultrasound next week and let us know. But we are all here to help and support you, remember that.
Take care
Love
Dawn
xx
Hello Buttons
I hope it isnt what you fear - I really do.
I was diagnosed with liver and bone mets in November, with hindsight I had some symptoms but they were really reallysubtle.and had just started…it was picked up on a routine blood test which came back, and then you know the routine- scan, bad news etc.
I think all I want to say is you just dont know - I have heard stories of people with really obvious symptoms and lots of positive nodes etc - who are fine and then women with no symptoms etc who are diagnosed with mets,…its a lottery really and terrible waiting for results. I really understand what you mean about being in limbo when you have a serious scare If worse happens starting treatment will actually help. I am on taxotere and just had the morning at work at the afternoon at home, feeling reasonable!
let us know how you get on and do come back on, this forum is great and everyone is really helpful,
best wishes
cathy
Thanks guys, it means a lot that youve helped me out. But as its been said before…one in…all in if that makes sense.
I hate limbo land with a passion, and like everyone else just want to find out one way or another. Thing is start of the week I was fine, bursting with spurts of energy, looking forward to buying new house, looking forward to starting new job…got all dolled up as I had a hr interview an hour before seeing the oncologist…and then wollop agaaaain. At least this time I had a bit longer for some bad news…last time as in finished rads then 3 hours later a gynae said i had a massive cyst on ovary…so at least this time ive had oooo 3 weeks off from wondering ‘what now’ if that makes sense.
The way im looking at it is, well stuff it, did it once, can do it again…just wish whoever is in charge of the bad news axe will just get on with it instead of playing cat and mouse…i dont like being a mouse!
Hi Buttons,
I know what you feel about not knowing what’s the matter. I was diagnosed in July, my symptoms were very similar to gallstones: nausea, tiredness, indigestion at first. Once I was diagnosed I was started on Tamoxifen and I then developed an ascites and some jaundice, this cleared up after starting chemo, diuretics, steroids etc!! Not on any treatment at the moment finished my chemo just before Xmas and feel ok apart from odd twing in side. I was diagnosed with ultrasound scan and got my results the next day. I hope you don’t have to wait too long for your results.
Keep yourself busy in the meantime,
Take care
Allie
Hi Buttons
You may remember we went through the early days together and had our chemo at the same time. You always make us laugh and your positive attitude is amazing.
Just wanted to say I will keep every thing crossed for you and hope it’s not mets.
Love irene
Hi Buttons,
I’m another one - found out I had a liver secondary in April, soon after primary diagnosis. I didn’t have any symptoms at all.
I really hope it turns out to be that you just have a naturally plus-size liver! If the worst comes to the worst, your booby prize will be that you can hang out with our friendly gang on the website!
All the best for swift and positive results
Jacquie x
Hi there Buttons,
First of all, I wish you the very best of luck with your ultrasound and that it shows nothing abnormal. The very worst aspect of all this nastiness is limbo-land and there is very little I can suggest that makes it any less nasty. I can only say that with time, you do become more used to it (I have a scan to look forward to this week - and have had them every three months - and it doesn’t particularly phase me any more.)
I did what you are sensibly not doing, when I was diagnosed - looked up every nightmare story I could find on the net. I would advise only looking for snippets of info as and when you feel ready to deal with them. Then I found this site and tiptoed around for a while getting the nerve together to join and have learned bucket loads here. Have now spent over two years doing what feels like A level Liver mets. I think I passed the exam.
I was diagnosed with bc and extensive liver mets together, from the outset 2 1/2 years ago, so I must have had it all a lot longer than that. I have felt extremely well during all this period and hope to do so for a long while to come. You will find lots of info and support from us all here, if you need it, which - I sincerely hope - you won’t.
Jenny
x
Lost patience waiting for the oncs secretary to phone me…so phoned my bcn…and she went and got my results then phoned me back. On paper my liver is functioning normally and is well within the normal ranges…its at the lower to mid range of normal apparently. So, she said not to rule anything out until ive had the ultrasound and had the ‘powers that be’ results from that. Then the oncs secretary phoned and told me the exact same thing…so kind of pleased that its working properly…just still no reason as to why its a big fat one. Still…just got to wait and see what the ultrasound comes out with. The oncs secretary said i can phone her on the wednesday to get my ultrasound report as the onc will have looked at it on that morning.
Hey ladies
Had the ultrasound this morning, and everything is where it should be, doing all the normal stuff, and my liver is now back to normal size with no sign of anything lurking anywhere…so is all a bit bizarre. Thank you for all your support ladies
Oh that is good news Buttons! Take Care…xx