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Five years since diagnosis of liver mets

42 REPLIES 42
Jodietowny
Member

Re: Five years since diagnosis of liver mets

This mskes me happy and positive. Ive a plerual effusion and waiting on it being drained n tested. 10years clear from bc. Its a shock but staying positive. I have to my girls are 19 n 13. I need tp fight cx
Jodietowny
Member

Re: Five years since diagnosis of liver mets

This mskes me happy and positive. Ive a plerual effusion and waiting on it being drained n tested. 10years clear from bc. Its a shock but staying positive. I have to my girls are 19 n 13. I need tp fight cx
Elaine71
Member

Re: Five years since diagnosis of liver mets

Hi. What is the treatment for bone and liver Mets.? I was just DX less than a year after having BC. X
Paola
Member

Re: Five years since diagnosis of liver mets

Dear All,

 

Thank you for writing on this website! I was diagnosed with liver mets in May 2017. I have been taking Ibrance and Faslodex. The response has been excellent, my markers are almost normal. I feel well and positive. But  visits  tot he doctor get me down. It is very inspiring to hear from you ladies. I was originally diagnosed and treated for breast cancer in 2009 (I am BRCA2), had a double masectomy and ovaries out. All was clear until last year (May 2017). Mets only in liver, staying positive taking meds, walking my dog, loving my children. Any adivse on what else you all have done is incredibly welcome.

 

Stay strong,

 

Paola

Sheep
Member

Re: Five years since diagnosis of liver mets

Hi Jacksy ,
Just wanted to say congratulations !!
I was diagnosed with stage 4 with liver mets 2 years ago - like you I'm generally fit & well- I do 8 hours a week doing yoga , tai chi & qi gong , working & running a house
I try & stay positive all the time - keep telling myself & friends that one day a cure for secondary liver will be found & that I'll get that treatment
All you can do is be positive, live every day well & happy 😊
Jacksy
Member

Re: Five years since diagnosis of liver mets

Hi Lillypin (and Nicky),

just wanted to reassure you that some of us are still going strong! I've just celebrated 10 years since liver mets diagnosis and my liver is clear. Im generally fit & well & have a good quality of life, although feeling a bit bleagh today after chemo yesterday (I have mets in my abdomen - peritoneum).

wishing you all the best in your treatments

Jacksy xxx

nicky08
Community Champion

Re: Five years since diagnosis of liver mets

Hi Lillypin.

Im not sure if any of these ladies are still around, unfortunately some, I know, have since died. However my liver mets were diagnosed in 2013 and I'm still here! I usually post on the Bone Mets thread as any Liver mets thread tends to slip down the pages too far and no one sees them!

This was 5 years after my bone mets diagnosis so I have had mets for 9 years now. I can't say it's been easy at times it, equally, I have had long periods of stability or shrinkage. Over the years I have responded well to hormonal treatments so I hope you do too and keep the big guns until much later!  Other than the normal, NHS treatments available for your type of BC there are also many trials being run at leading cancer centres in the UK so there are newer treatments being tested all the time and some are very targeted. You can always ask for a second opinion at one of these centres if you have one near to you at any time you are not happy with the treatment plan you are on. For now it sounds like it is right for you and certainly has less side effects than some of the harsher regimes such as chemo.

Nicky x

Lillypin
Member

Re: Five years since diagnosis of liver mets

last post here was 2014 is anyone still around
Lillypin
Member

Re: Five years since diagnosis of liver mets

Hi guys thank you for the inspiring stories.I was diganosed last her with mets to the liver I am er/pr postive and her- i am currently on tamaxifine and zoledex.Is anyone on these treatments and are they working for you
Ghada
Member

Re: Five years since diagnosis of liver mets

Thanks for this forum
I am 39 and i was diagnosed to have liver mets since one month , will start treatment shortly
Mrs_Merc
Member

Re: Five years since diagnosis of liver mets

Hi All,

 

I was diagnosed with Liver mets back in February 2015  and in March I was put on weekly taxol and 3 weekly herceptin. The taxol was stopped mid September as the side effects were knocking me bandy and I was struggling to combat even a simple cold. The scan showed no worsening/growth of the cancer, but also no real shrinkage. I am now just having the herceptin and Anastazole.

 

I can say that I am now starting to feel much better physically, but psychologically I am terrified that I am not doing anything to fight it. Every ache and pain I get panics me and I started to have panic attacks. The Complementary Therapist at the Hospice I attend weekly as a day patient made me up an inhalational aromatherapy stick which is helping alot with the panic attacks, and I am finding that my main coping mechanism has to be positive thinking and keeping myself busy.

 

Not sure if this is any use to anyone but I felt that I would like to share it as I feel quite lonely and isolated at times as I am sure all cancer patients do - despite having a great deal of family and friends that support me.

 

Penny

Cress
Member

Re: Five years since diagnosis of liver mets

Hello Gen, I was diagnosed with liver mets six weeks ago and am only on Letrozole, so would love to know what your what your (almost) miracle tablets were? Ta, Julia x
Kimmy1
Member

Re: Five years since diagnosis of liver mets

That is great to hear, I also have liver mets I am 2 years on now, changed treatments.  Nice to hear someone that is 5 years on.  Hope you keep well

Bornfree
Member

Re: Five years since diagnosis of liver mets

Thank you roxy12, I will certainly keep checking in to read other people's experiences, it reminds me to focus on the positive and put the rest of it to the back of my mind where it belongs! I reckon there's no point wasting a moment when life is so good right now xx
roxy12
Member

Re: Five years since diagnosis of liver mets

Hi Bornfree,

Sorry you have had to join us but welcome. As Helen says we are all here for you and really are very friendly. Good luck with your treatment and do stay on this site. It is so helpful.

Love Sheila. Xx

Bornfree
Member

Re: Five years since diagnosis of liver mets

Thanks 2catlady I will take a look at the thread you mention, sounds like just what we all need. A cyber hug right back at you! xxxxx
2catlady
Member

Re: Five years since diagnosis of liver mets

Hello,born free ,so sorry about your diagnosis .we all have days we are terrified and days where we can put things yo the back of our mind.
Have a look on the bone mets thread,we all seem to hang out on there regardless of what mets we have. We are a very friendly bunch,who always support each other,give advice ,a shoulder to cry on or a very much needed laugh.
Sending you a cyber hug which we all need dealing with this awful disease ,Helen xxxxxxx
Bornfree
Member

Re: Five years since diagnosis of liver mets

I've started turning to this site more and more over the past week - just found out I have liver mets after original BC diagnosis/surgery/chemo in 2010. Waiting to have MRI and PET scans to see what treatment i will be offered. On a good day I think thank goodness it's been found and can be dealt with; on not such a good day I find it surreal and terrifying to try and get to grips with it all. It's really helped though to read posts from other women who are going through the same thing, especially when there are so many good news stories out there. It's so great that people takes the time and trouble to share their stories to help others like this.
Katherine2701
Member

Re: Five years since diagnosis of liver mets

Hi there, CraftyT, I was wondering how you were getting on? I did read details of one lady on here who has liver mets that didn't disappear or shrink during chemo but have remained stable for over four years! Hopefully all these real stories will give you a bit of an uplift. Keep well, I'm thinking of you in my prayers.
Katherine2701
Member

Re: Five years since diagnosis of liver mets

Thank you Celia for you post. I was diagnosed with liver/lung mets at outset last year. I still live under the shadow of cancer but am enjoying and appreciating life with my 19 year old son. I hope both you, I and the other lovely ladies on here continue to chalk up many, many years to come.
JuliaMc
Member

Re: Five years since diagnosis of liver mets

Hi Jo
Many thanks for your post.
Julia
JuliaMc
Member

Re: Five years since diagnosis of liver mets

Hi Helen,
Many thanks for your lovely reply. I'm so sorry we are all meeting under these circumstances, but glad to know that everybody's willing to share their wisdom and experiences. A big hug back to you.
Juliax
2catlady
Member

Re: Five years since diagnosis of liver mets

Hi,Julia,so sorry you have to join us. But if you read the celebrate posts you will see a lot of ladies are way over two years and some over ten! I'm coming up to my first year and i plan on being around an awful lot longer that another year. I have a hubby to nag and a son to see grow up.
We are a very friendly,helpful bunch on here so please don't be worried about asking us anything there is always someone here to offer help & advice.
Sending you a huge hug,Helen xxxxxx
Jo_BCC
Member

Re: Five years since diagnosis of liver mets

Hi Julia,

 

Welcome to the BCC discussion forums where I am sure you will find support from users travelling a similar path to yourself.  Here at BCC each Tuesday evening we run a 'live chat' session which is dedicated to those with a secondary diagnosis.  The session is hosted by a nurse and a facilitator so there's always someone to talk to.  I've put the link for you below to have a look at if you'd like to join in, you'll be made most welcome by the regular users who are a wonderful support to one another.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

JuliaMc
Member

Re: Five years since diagnosis of liver mets

Hi Celia
I am new to forum. Congrats on your five year survival. I was diagnosed a year ago exactly the same as you at stage 4 with liver and bone mets being given a 2-9 year prognosis by the onc. Of course, having reached the year marker, with possibly a year left - (yes, I was having a bad day!) - your email really helped me. Many thanks.
Juliax
CraftyT
Member

Re: Five years since diagnosis of liver mets

Thank u so much for your reply. Iv been doing really well of late just try to divert my mind into positive things and it seems to be working for me. I had a ct scan the other day and although after 2 sessions of chemo it hasn't improved it has not worsened and they said the cancer is stable. I pleased with that outcome at the moment. Its so heartening to hear ur story. Good luck and thank you. X
Katherine2701
Member

Re: Five years since diagnosis of liver mets

Hi Crafty T, just to let you know I was diagnosed with lung and liver mets at the outset (too numerous to count, largest in liver 10cms) one year ago. I had nights where I couldn't sleep for shaking with worry about my family. After chemotherapy my liver is clear and I am being monitored by blood tests. This time next year you will have been through treatment and will have come out the other side with a new zest for life, appreciating your family and have a good prognosis so chin up. I know it's hard but every time a worry comes into your mind simply start to list in your head ten things you are grateful for at that moment and the bad feelings will pass. Good luck to you and your son for the future.
Katherine2701
Member

Re: Five years since diagnosis of liver mets

Hi Celiab, thanks for posting. I was diagnosed with lung and liver mets at outset one year ago. It's lovely to hear your great news. Thank you so much for sharing. Katherine
CraftyT
Member

Re: Five years since diagnosis of liver mets

This is just what I need to read just now.  What an inspiration!  I was recently diagnosed with bone and liver mets and I'm scared stiff.  I have an 8 year o;d boy and my biggest fear is not to be here as he grows up.  This story gives me hope.  I start my chemo for the second time this Wednesday.

 

CraftyT

herbidacious1
Member

Re: Five years since diagnosis of liver mets

Just what i needed to read, a routine scan at the beginning of January showed up a 1.5 cm area on my liver, 'consistent with metastasis', am having a biopsy tomorrow. My original diagnosis was 2 years ago and i made some great friends through this forum. I have been beside myself with worry and fear waiting for tests and formal diagnosis. It is so good to know there is hope, i feel more positive after reading this than i have since i had the news, thanks again x

Lucy21
Member

Re: Five years since diagnosis of liver mets

Hello celiab
Thankyou for sharing such a possitive post . I was diagnosed nov 2013 b/c . Jan 2014 secondaries to liver and bone Also . It has been a very scary few months as you say ! I have just started treatment . Tamoxifen, monthly zoladex / zometa . Great to read stories like yours . Just what us newly diagnosed need . X
quality_street
Member

Re: Five years since diagnosis of liver mets

That's fantastic, am upping my training in the gym starting next week! Xx

quality_street
Member

Re: Five years since diagnosis of liver mets

Thanks Sheila, hope the tax .does the job for you xx take care Gen xx

quality_street
Member

Re: Five years since diagnosis of liver mets

Fantastic xx keep it up . Gen x

elliedog
Member

Re: Five years since diagnosis of liver mets

Thanks for posting all the good news everyone. I was dx Feb 2013 with small liver met been through docetaxal perjeta herceptin last scans were clear. Continue on perjeta herceptin and tamoxifen, feel well.x
roxy12
Member

Re: Five years since diagnosis of liver mets

Thanks to you too quality street. Hope you continue to do well for a very very long time!. Sheila. X

roxy12
Member

Re: Five years since diagnosis of liver mets

Hi Celia, thanks so much for your post. Am currently on taxotere for liver and lung Mets. Also have Mets to spine. Your news has helped me a lot. Take care. Sheila. X

geordiex
Member

Re: Five years since diagnosis of liver mets

you'll be catching up with Blondie soon x

celiab
Member

Re: Five years since diagnosis of liver mets

jolly pleased to be able to share. would have really appreciated knowing what was possible when I was first diagnosed. Still have great quality of life too 🙂

quality_street
Member

Re: Five years since diagnosis of liver mets

So glad that other peoples good news are helping you feel more positive. The onc. advised me on Wednesday that they will now just use blood tests and how well I am feeling to monitor situation. Have they advised more chemo?  I was given 3 choices but went for tablet form and showed improvement immedietly. Wishing you all the luck ine world and hope you will be posting on the inspiring news thread very sooooon xxx Gen

dgardens
Member

Re: Five years since diagnosis of liver mets

Hello , your posts are just what I needed to read today, just joined the forum today, I was diagnosed with liver mets this Tuesday and these posts have given me a well needed lift xx
quality_street
Member

Re: Five years since diagnosis of liver mets

Thanx for sharing that Celia, am in same position as you, liver and bones. Liver diagnosed a year ago and latest scan showed up completely clear! It's lovely to hear that you have managed this for 5 years. It gives hope to others xx hugs from Gen xxx

celiab
Member

Five years since diagnosis of liver mets

Hello

Just to say that a couple of weeks ago it was 5 years since I was diagnosed straight at stage 4 with spread to liver and bones. Have had mets in liver and bone ever since but they wax and wane and I change treatments as they alter. Just wanted to share because I think that often a diagnosis of liver mets/organ involvement can be scary.

Celia