i am 53,dx left bc August 2012,wle,nodes clear,radiotherapy and tamoxifen.at yearly check up in March I mentioned increased left rib pains.had a bone scan that only showed small uptake on right rib.had a ct scan and got results yesterday.rib was cleared but was very shocked to hear that they had found’ a number of ill defined hypo dense liver lesions which are strongly suggestive of liver metastasis .the largest in segment 7 is 3.3 cm’
this was not what I was expecting to hear at all and I am so scared.anyone with liver mets who can give me advice please?also what do I need to ask oncologist at my appointment ? Have had 1 hours sleep as so many thoughts going through my head
many thanks didi x
Hi Didi, I was diagnosed this time last year with Primary BC and secondary mets in the liver…also 53 at the time…I am HER2+ so the treatment is dictated by my status. You need to find out what yours is, if you don’t know already. If you are HER2+, then herceptin will be your first port of call. It’s horrible, getting the shock of your life I’m sure, but don’t panic. There’s a treatment plan for you, I expect you will be having that discussion at your next oncologist appointment. Also, use the services of your assigned Nurse Practitioner or the online services available through Breast Cancer Care for support whenever you need it. It’s the waiting around for decisions to be made that is the hardest thing to do, I know, as I am again that position. My treatment will be changing, I think, after a recurrence of the cancer in my lymph nodes.
Best of luck, hope you get some answers soon…x Sheila
Hi didi62
I know exactly the shock you must be feeling right now, in fact all of us on the secondaries part of the forum will understand, I’m sure none of us ever expected to have this diagnosis. It was like a sledgehammer when I was dx with bone mets nearly 5 years after my primary. I had no inkling other than a very small ache on my hip. When you are first diagnosed everything is up in the air and I think all of us have felt more able to cope once a treatment plan is in place. This forum is a great source of information and support and I’d suggest not googling things! It’s a very scary cyber space with lots of out of date statistics.
After nearly 5 years with ‘just’ bone mets I was dx with liver mets so I do have experience of what it all means, especially the segment bit! I had about 5 liver lesions, the biggest being about the same size as yours. The treament plan you will be given will be based on the pathology ie type of your primary. Therefore it’s quite likely you will be given chemotherapy although you may be given a different hormone treatment which are just as effective as chemo although works slightly slower and don’t have the same side effects
There are a couple of ‘Liver mets’ threads in the Living with secondary BC part of the forum and I will ‘bump’ em up as they are not very active at the moment. There is also a very active thread called ‘Bone mets please join in’ where a lot of us post even if we have different mets. Once you know your treat,net plan you may also find a thread relating to that particular treatment which helps with side effects etc. Do come back and post again, ask questions, get support - that’s what we’re all here for an, having found us, you will know you’re not alone.Nicky x
ps my lesions have shrunk on the treatments I have had and a couple have disappeared completely. Also, apologies for any typos for some reason I can’t go back and correct any mistakes today as the forum won’t let me whilst still typing! Grrrr.
Didi62
i found out I had SBC Oct 14 - firstly pleural effusion, then bone Mets and in Feb 15 “extensive” liver mets.
extensive sent me in a spin - did not sound good so I opted not to ask any more questions! Onc suggested chemo and I did that March -July 15. End of chemo scan showed average reduction of 50%. Then started taking ANASTROZOLE and had 8 weekly CTs. Nov and Jan 16 scans continued to show further reduction of liver mets and Jan was declared as “low volume” so Onc said to move to 12 weekly scans. About 4 weeks ago I had latest scan and liver mets gone. Liver is normal (just some fatty disease showing so advised to think about diet!). Onc happy and no scan needed until late September.
I hope old this helps a little. Once you get in and discuss treatment plan with your Onc I am sure you will start adjusting to the new normal. Sorry for all typos in this message. I think there’s a glitch at moment as several others seem to be having issues as well!
Hi didi,
Just to say I am joining you as I had my first liver met diagnosed today, after 6.5 years of bone (plus some spots in my chest muscle). Not sure what my treatment plan will be yet but looks like I may have a chance to try Palbociclib which I am quite interested in as part of a trial or an ‘expanded access’ program at another hospital. I am ER positive but have been through all the hormonal treatments now. Otherwise it will probably be capecitabine. All the best with your treatment and thanks to others for sharing their positive experiences.
Tournesol x
Hi Didi ,we are at the same stage though my team have had 3 MDT meetings to discuss me.Im now waiting for another ultra sound scan then the Oncologist.I don’t even know which consultant Oncologist I will have.I went to my GP with the same pain but on right side.I am finding it awful like you and have no idea how long I have and had so many dreams for the future.Lets keep in touch - I’m waiting for a call with a treatment plan .Thinking of you x
Hi Didi how are you getting on with your liver mets? On my last scan mine had grown 5 MM but I wasn’t on my chemo then.I would love to hear from you as we are in tge same liver mets boat.best wishes Deb x
I was over the moon to see that you had replied and it’s great to get your news too.So we are on exactly the same path with both having had our first chemo!!! I’m floaty and woozy and now have awful spots every morning sort of fluid filled so yuck (( I’m good until teatime when I’ve normally done too much .Hope you are sleeping ok chat soon.Keep going it’s only the beginning for us - we will do it xx
Hi Didi and Deb, glad to see you are both now on treatment. I too had fec for my primary and was quite ill with it…sickness was so bad i was given aprepitant whichn you take an hour before your chemo. I also had neutropenia so i had gsfc (?) injections. Just a few things you may be able to sggest if the need arises.Worst thing was losing my hair, which i’ve had twice now with different chemo’s but you get through it. I have had so many chemo’s now they are running out of options but the next one sems to be epiribucin which is the ‘E’ in fec so hair loss tinme again. Seems so stupid worrying about that more than anything else but no one knows what it feesl like until they have been through it. At the end of the day though it is a small price to pay if the chemo works…keeping everything crossed that you both stay well. x
Hiya didi and debs
Well you both have started the chemo and treatment its a hard regime and most women here would agree the hair loss is the worst bit …never quite ready for it to come out.
Make sure you try on a good choice of wigs as getting a good one will make a lot of difference in how you feel …
I expect you are already on the chemo threads as there is so much going on there …as the primary ladies will b doing the chemo too with the same fears etc.
Just sending you hugs and positive vibes .
Xxx
Thank you for that message Carolyn it means a lot right now as I’m feeling rough.I have so many ulcers in my mouth on my gums,spots all over my scalp with prickling in hair roots plus conjunctivitis.all this came after the chemo.The thing is that now I know it’s really happening it’s not a dream ! This is the new me My wigs ordered and your info helped me decide.Wishing everyone a good nights sleep xxdeb
Hiya debs
Sorry to hear you are feeling so rough …chemo is a savage treatment and you never know what is going to happen next.
I know this sounds strange but having chemo as a adjuvant belt and braces part seems to b easier than having it on live cancer …maybe it’s a stronger dose or just causes the cancer cells to flare up and rebel
But hopefully the chemo will give the cancer a good kick up the b.m!!
Have u tried ice lollies for the sore mouth and some pineapple ?
Stay strong and think positive.
Hugs xxxx
Thank you Nicky,I am on Herceptin PERJETA and Taxotare I got a prescription for steroid mouth rinse and Difflam.What is FEC?xx
So good to get your reply but sorry you have been in hosp for awhile but it must be the best feeling being tucked up in your own bed & home.Ive just had my 2nd chemo and now thinking of the next scan …what will it show etc I don’t need to tell you how all that feels in your mind.We will just keep on enjoying all the little things and the good times that pop up to lift and surprise uYou have coped with your blip and earned yourself another survivor gold medal xx
Hi Didi good luck with next chemo…I found rinsing my mouth with soda bic solution, (very weak baking powder solution, ) helped my mouth ulcers, which I only had during my first cycle of Eribuln…however, the ice cubes sound a really good idea to try.
Moijanxx
What a lovely surprise - I was rough after 2nd lot and they also gave me the injections to DIY lol. Believe it not I managed them,the needle is so fine that it just slips in herhee.Not nice I know;)My third lot of chemo is on Thursday so I’ve had about 3 decent days and soon be blasted again! Then my first scan since starting chemo.My hairs fallen out but some straggles left to remind me of my old self.How have you managed with yours? Your message and news has really cheered me up - have a good day and sending you a healing hug xxx deb?