Hiya to everyone,
I went to see my Onc 3 weeks ago as ive been getting a pain in my side for about 3 months now. Onc said she didnt think it would be anything sinister as I had only finished chemo end of Aug 07, mastectomy beginning Sept 07 and rads beginning of Dec 07.
Sent me for a CT scan just to “just make sure”.
I got a phone call yesterday morning to go see Onc in the afternoon as she had my results…and was there anyone I could take with me?
I instantly knew the results were not good.
Onc said I have mets to my liver, a few small spots but one large one.
Only good news is that the blood test has shown my liver is currently functioning normally.
She said it has come as a shock to all as they just did not expect this, not so soon after finishing treatment.
I feel like i’ve been hit by a bus. Neither me nor my partner can stop crying.
We feel like ive been handed a death sentence and am now living on borrowed time.
Im only 38, no kids but 2 gorgeous cats that are like my babies (!!)
I can’t bear the thought of leaving my partner behind (nor my cats as I love the bones of them!). I dont want him to be sad or lonely without me, which I know he will be.
Ive to start Xoleda next week which I have been assured by the Onc that a lot of people respond quite well to.
Onc is also going to arrange another blood test to ensure there is no change in my liver function, and a bone scan to make sure it hasnt spread to my bones (that would just be the icing on the cake!)
My original BC was triple negative with no node involvement.
I had 3 EC and 4 Taxotere which the Onc said I had responded very well to…obviously not well enough?!
Im so scared as it seems the cancer has spread and grown at such a fast rate.
Is there any positives anyone can give me as at the moment all I can think of is the worst.
Im so sorry for the long post.
Hugs to everyone out there that is having to go through all this crap, whether its yourself or a loved one.
Julie. X X
Hi Julie
I’m very sorry to read of your recent secondary diagnosis. I’m sure the other forum members will be along very shortly to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer which may help you to get through this difficult time.
There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
breastcancercare.org.uk/content.php?page_id=11306
There is also a secondary live chat, this Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer, including one specifically about liver secondaries which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this is of some help to you Julie
Best wishes
Lucy
Hi Julie
So sorry to hear your news and can imagine how shocked you were. It is absolutely devastating. I was dx last July 16 with bc and then told 10 days later that it had already spread to my liver. I had absolutely no symptoms at all, but surgery was not an option and went straight onto chemo, I am now on Herceptin (since December) and just had a ct scan a week ago Friday to see how I am responding to it, but am so sure it will be more bad news,
I am 40 with 2 children (aged 4 and 18 months old).
I think it is such at shock at initial dx, still is really the whole time, but you will get your head around it, probably never really accept it, I haven’t but have to carry on as normal more for my children and husband, Are you going to have more chemo now and what is it do you know.
We have a great “Anyone else with liver secondaries” thread going on in this secondary forum, and we have met up twice now in London. Not sure where you are from, but join in if you can. We all have a laugh, a cry and whatever on these threads and sometimes they really do cheer you up when nothing else can.
I am a year from dx nearly now, but there are ladies on here that have had liver mets fort 4 years plus, so just keep on going.
Take care and lots of love
Dawn
xxx
Hi Julie,
I too have liver mets and have just finished my 6th and final taxotere.I have been having herceptin as well and will be carrying on with that.My liver mets have shrunk and I’m now having a break from Chemo until July when I’ll be going for another MRI scan to see if there’s any change.Onc is talking about me having a mastectomy and rads on neck lymphs in the future.
Stay strong and as Dawn says there are people on here 4 years plus with mets,so there is hope.
Alli x
Hiya,
Thanks for replying to my post.
I just cant get my head round this. I feel sick thinking about.
It all feels so surreal and I keep thinking im gonna wake up and find its been a dream…but no such luck.
Im treating my partner (and the cats!) like im never going to see them again and that I can go at any minute if that makes sense??
I need to know that its not all doom and gloom and that there will be happy days to come…and hopefully many of them.
Dawn, I am going to be starting Xoleda (which I believe is the tablet form of chemo) next week.
Im trying to be positive but its damned hard. I was sooooo positive with the original BC and where has it got me? Nowhere! Its just turned round and bit me in the ar*e!
x x
Hi Julie
So sorry to hear your news - it must be a huge shock. But as I am sure others will tell you, you do very gradually get more used to the situation (and the sense of panic is limited to certain days/times) even though I think we would all say that it remains an emotional rollercoaster.
I was lucky enough to have had nearly 5 years from my primary diagnosis when I learnt last June that I had liver mets. Quite a complicated story from there but am still feeling well and continuing to work 4 days a week in my job as speech and language therapist (with preschool children). The job has been great for me as whilst I’m there I’m so busy with the children (and they are themselves so wonderful), I have no time to fret about my situation. Started on xeloda myself just over a week ago and so far (very early days though!) it is going extremely well. My onc saw no reason why I shouldn’t continue working etc. Don’t know whether you’ve found the thread liver mets and xeloda (or something similar) but there’s lots in there about potential side effects and also how it has worked well for many women and they are remaining on it. Think 4 years (and still going) is the maximum I have heard of but my own onc has several who’ve been on it for a couple of years and one who has been on it for 3. All living reasonably “new normal” lives. So that is what I am hoping for for me.
I’ve found these forums really helpful and supportive - lots of very knowledgeable ladies. It has also been brilliant as Dawn says, to meet with some of them every now and then. A group of us with liver mets have now met twice and I’ve also met with others with sec cancer (but not necessarily liver mets) in Guildford a couple of months ago - don’t know where you are but you would be really welcome to join us. ANd there are other “meets” in other areas - know there’s one up in the NE and one in Peterborough area.
I’ve got 3 cats and know how attached you get to them. When I was in hospital in January, one of mine really pined for me evidently - she made such a fuss when I got back! Also got a husband and 3 “kids” (all now in their 20s)! One of the hardest things for me is to see the effect of my illness on them (and on my parents who are in the 80s).
Sorry - really long post. Sending you lots and lots of (cyber) hugs
Kay xx
PS Dawn - thinking of you lots at the mo and really hoping that you get your results soon and that they are BRILLIANT!
Julie,
My wife was the same over two years ago. After Xeloda for 18 months her liver tumours were stable and not grown at all, so there is hope out there !!
Take care
Terry
I too was diagnosed with secondaries a year after my initial primary although my secs are in my lung. I am triple neg and my primary was a fast growing aggressive one with no lymp nodes involved. Anyway i had a 2nd round of chemo taxotare and have been well and have not had any treatment now for the last four and a half years. I believe very strongly in the power to heal yourself and have reiki and reflexology and especially helpful is relaxation classes. I changed my diet to organic and try and stay as stress free as possible.
I attended my local hospice as a day patient for a year but now they have discharged me as i am so well. So there is a lot of hope out there just believe in yourself.
Hugs and kisses
Hi Julie
I was diagnosed with liver (and spine) mets in 2004. Had Pacitaxol then for my liver mets and then it started to go grow again in 2006. I’ve been on Xeloda since that time with no breaks at all and my liver is stable (much to the surprise of my oncologist because my tumours were pretty extensive).
My oncologist has just decided that I don’t need to have three monthly scans now because of the state of my liver so, yes, there are some positives stories out there and I hope you’ll be one of them as well!
Hi there Julie,
I am so sorry that you have to make our acquaintance but we are a lovely bunch - though I say it myself. I hope you find this site as great a source of support as I do.
As you can see, there are many of us here living well with liver mets. Though not triple negative, hormone treatments have never worked for me. I was diagnosed with BC and liver mets almost three years ago now and still feel right as rain. I have been on Xeloda since Jan '07 and have just been demoted by my onc to seeing the breast care nurse instead of him, so like pinkdove, I am pretty stable at the moment. Xeloda is an easy chemo to tolerate for many women and is less traumatic than IV as you can just take your pills at home. I am given a blood test every three weeks before picking up my prescription, which is standard procedure. I hope you get great results from it.
It takes a good while for the shock of stage iv diagnosis to sink in, but once it does, it becomes easier to carry on. There was a stage when cancer was on my mind from the moment I woke but now I have many good days when it barely registers with me at all.
I hope you can find comfort in some of our positive posts and begin to realise that there is hope yet!
Jenny
x
Julie,
I am so sorry to hear your news, but reading the other posts always gives me hope…
I have just finished 9 weeks of gruelling Vinerolbine chemotherapy, and after CT scan was told last week that my Liver Mets have actually got larger 12-15% during chemo, I have never heard of this happening to anyone… anyone know different??,
I start AC chemo on 9th June, and am hoping and praying that this may have some effect. Apart from the chemo making me feel like a zombie and totally drained I intend to go on thru every different treatment available to me,
My Oncologist is even writing to a professor at a London Hospital regarding ablation of Liver Mets, its still in trials, but all i can say is "try it on me "
So keep strong, and try everything that is offered to you… You have a long way to go yet… Did you know it is also possible to live with only 10% of your actual liver?
I can understand how you are feeling, I am still running/ sorry crawling around headless chicken mode here, but I will never give up hope. We owe it to our families, Husbands,Sons and Daughters also pets Cats and Dogs to keep strong…
What is meant to be is meant to be…
Might be worth getting some literature regarding diets as Liver Mets are particularily responsive to certain foods…
Kathy1951