Hi Helen, thank you so much for your message, it’s really helped, funnily enough I asked my breast care nurse to ask my oncologist not to mention prognosis at the appointment today, I just need to be practical and get started with living with it for as long as I can, I’m trying to get my head around it, I’m just hoping I don’t get any more curve balls thrown at me today! Thanks again x
Firstly I want to say how sorry I am to see you have SBC & particularly liver mets, and I can tell from your post that you are understandably scared.
Can I share my story with you - I was diagnosed de novo SBC in Dec 2012 with bone mets when I was 44. By Oct 2014, so 8 years ago, I added liver mets. Never have I asked for a prognosis or looked at any statistics- the oncologists don't know for certain & stats are out of date as soon as they're published. I never expected to be still around nearly 10 years later but after over 60 MRI & CT's, 5 liver biopsies, surgery, radiotherapy, participating in a clinical trial at the Marsden, and 17 different drugs I am still here. It's very scary sometimes, I won't lie to you, but trust in your team & always have things planned to take your mind off the cancer.
I wish you the very best in the future.
Thank you so much corkrebel! That really helps! It’s so frightening but I like the idea of it being treated like a chronic condition, glad you’re doing well x
Hi Ejane I’m relatively new here. My story is a carbon copy of your previous BC . Stage 2 in 2017. Onkatype test results low risk of reoccurrence. In July I had abdominal discomfort and had an ultrasound that showed multiple lesions. Since then I’ve had scans , liver biopsy and now on hormone / targeted therapy- Kisqali, zoladex and anastrozole. Finished 1st cycle and so far so good. Research on this combination therapy seems good and I’ve been advised to treat this as a chronic illness . Back working and living my best life. Good luck with diagnosis. Waiting around is the most difficult time.
That sounds like my heaven! Animals are the best! Basil never leaves my side, Gertie got depressed when I got bc, she kept going off on her own, at the moment she seems ok though x
Do your doggies lie with you and comfort ? Aldi wolves ey, nice descriptor. LOL
I have dogs, tortoises, snakes, a rabbit and all my wild birdies, hedgehogs and ......insects, butterflies, moths......I love them all 🙂
That is exactly how I felt with my primary diagnosis! It’s like being in a horrible separate world from everyone else, support groups help so much though!
I have two dogs called Basil and Gertie, both mongrels, they look like Aldi versions of wolves 😂 we also have an evil cat called Margo who bullies us all! Do you have pets? X
Oh goodness, I can see that - you feel like your world has folded in and you are in a tunnel of being unable to reach out to anyone else or even want to ? Words don't do justice to those deep and turbulent feelings you are experiencing.
I have to admit, with my primary, days after diagnosis, my husband took me out and I just walked around teary eye looking at everyone around me shopping and wondering how they were laughing/smiling/living normally and I felt unable to engage with the world. I felt it almost impossible. I still remember that deep pit of loneliness, as if I'd never be able to feel nice things again as if tears wouldn't stop. You are in an even psychologically harder place right now, and its ok to be feeling as you do, its ok to close in towards that which you feel able to cope with right now. You are shocked and scared, but I honestly think when you have your answer and know what you are facing (IF it is liver mets that need treating) then you will feel more strength and purpose once the medics tell you their plans.
I'm glad you slept some. It feels like you are waking up to a nightmare you've forgotten about in your sleep doesn't it ? As if it hits you all over again.
Its not fair is it, nothing about this is fair.
Tell me about your pets, this isn't about distraction, but I'm a huge animal lover.
Please don’t apologise I totally get why you asked, every time I think about telling him I just cry. I’m very lucky to have lovely people in my life but at the moment I’m struggling to want to speak to anyone except my husband, I envy their normal lives but feel guilty for feeling like that, this group is so helpful because I can speak freely, I got some sleep but I just felt so sad when I woke up, hopefully tomorrow I won’t feel like that, I’m glad you’re doing well x
Then you have your reasons for not saying anything yet, and they are perfectly sensible and based on your knowledge of your beloved lad. I'm sorry I wasn't trying to induce any guilt feelings, or making you question yourself, just checking really thats all....
I'm really glad to hear that you have a husband there, and people around you who are caring and kind, but it must be hard when you are feeling this awful to even get huge relief from that. Your husband sounds like an absolute gem. 🙂
I had Primary BC in, errr, March 2016 I think. Yes, I'm good, but you know - none of us do ever 'know' do we what the future holds. (About BC, or anything else for that matter!)
DId you get some sleep last night ?
Last time I got it I told him when it was confirmed and he was fine about it, he has quite bad health anxiety so I don’t want to give him the extra time to worry. I live with my husband and pets, he’s a wonderful man and despite being terrified he’s doing everything to support me, two of my friends have just brought food for us too, I’m getting well looked after, I agree, the waiting is cruel, it’s like torture!
do you have primary breast cancer? Hope you’re doing well x
Oh thats tough keeping it to yourself like that, is there anybody (apart from us) you are sharing your fears with ? Do you live alone ? I know you say that it affected your son badly last time, but is he the sort of person - you are his mother and will be the expert - who would rather know things as they are going along ? Would he (no matter how painful being told) be upset that you didn't share with him whilst you were worried, as he is an adult ?
I can see the logic of not wanting to say anything until you know absolute facts, and that is entirely your choice, but just wondering if its putting you under intolerable pressure. Sometimes we try and save people around us 'being worried' - I understand.
There will be treatments IF this is metastases EJane. I know this feels overwhelming and unsurmountable at this moment, especially when you are feeling unwell anyway and have no answers and no support from the medics (its cruel all the waiting in my opinion), but there are many women here with Liver mets. I'm not used to the secondary boards, its not an area I can be much help in at all, if any, but I will tell you this there are many threads I've read where they talk of all the many different treatments and positive responses to this and that and the other. I feel that I almost have no right to try and reassure you, because if it were me I know I'd be beyond devastated, but if the worst comes out of this that you are fearing, then the hospital won't give up on you and have much to try. x
Hi Charys, I’ve struggled today, just feeling hopeless. I have a 26 year old son who lives in London and I haven’t told him anything yet, until the ct scan results come through, he rings every day and it’s so hard pretending! He knows I’ve been feeling poorly for a while but he keeps talking about going on holiday when I’m better, it’s so upsetting, the primary bc floored him so if this is what I think it is I’m terrified of telling him. It’s so rubbish isn’t it!
thank you for checking on me xx
Hi Charys I live in Liverpool, it’s been very windy and rainy today here too!
My gp gave me diazepam if I’m struggling to sleep so I’ll see how I get on, thank you so much for your support and kindness x
What part of the country are you in EJane ?
I'm darn Souf and its blowing a gale and chucking it. Mind, I think its doing that everywhere isn't it, and I'm not special 🙂
Will check into your thread am, hope you don't feel too bad tonight and get some sleep. Put on here whatever you like, you won't upset us and we will be here to listen as Jill said. x
We are here to chat if you need to . We understand the fear. They have been filming new series of the Bay over the summer here . I can’t cope with anything too dark really .
Thank you Charys, you lovely people have been the only light in this horrible week, I really appreciate your support xx
You don't sound in the slightest bit crazy EJane, you sound like any sensible sane intelligent frightened person would if they were to hear the words that were said to you (and given that you've had BC, its even more likely you will have the feelings of terror). Of course it won't remove the underlying fear, but, as Jill said - there honestly will be no answer via internet searches and it will make you feel hugely worse in the waiting process. However, you are allowed to spend all the time you like talking to us 😉 x (Or watching Netflix/box sets of course, and going to the toilet, we will allow you to take time away for that 😁)
Have you watched “ The Bay “ ? It’s filmed near where I live in Morecambe . It keeps you intrigued but not too taxing on the brain !
Thanks Kay, I’ll try and keep distracted, I feel poorly so I’ve been in bed for days, I’ll look for a good box set, I love tv so a gripping drama will hopefully help. You’re all so kind x
You don't sound crazy at all! You're scared as anyone would be, as we all are actually. Anyway there are always benign explanations for things, even liver lesions. Considering our history they will always assume it could be cancer so the need to check it out but that's not always the case. Just try to hold on until you find the answer in anyway you can. Distraction and keeping busy sometimes helps with me.
Thank you so much Jill, it’s just that I have the reduced appetite and weight loss etc so I’ve got myself convinced, I’ll definitely take your advice about Google! X
Hi EJane , try and step away from Google it will just get you more worked up .Until you have your CT scan and your Oncology team have looked at it you really don’t know what these lesions are , there are other non cancerous explanations for liver lesions . I’ve found that once you’ve had breast cancer radiographers will always conclude mets when anything is abnormal . I’ve had 2 MRIs that concluded multiple suspicious metastasis - after further investigation I had a bone condition. Please try and keep busy and focus on other things this weekend as much as you can , there’s lots of support here if you do find you have mets xx
Hi thank you for responding, I was moved from tamoxifen to letrozole a couple of months ago, the words multiple suspicious lesions throughout the liver just terrify me, it literally feels like they’re growing really fast inside me (sorry for sounding crazy!) I think this seems like a wonderful group of people and I’m glad I’ve found it
Unfortunately it can happen to anyone. And I'm so sorry. Are you still on hormone therapy because I know that is sometimes a possible treatment with secondaries. Anyway, hopefully there is a benign explanation for what they see but if not there are so many things to do to try and control spread. People can live with breast cancer now as you would live with any other chronic condition.
Thank you for responding, I’m just confused because my bc was early stage and the oncotype test said it was unlikely to return. I suppose it can happen to anyone though, I hope your sister in law is doing ok, it’s so terrifying isn’t it
Hi , I’m really sorry to hear this , it such a worrying time , I had stage 1 BC in 2019 , the year later my sister in Law was diagnosed with stage 3 and she has recently been diagnosed with liver mets .
The waiting is always the worst time and I’m sure once you know what you are dealing with and start treatment , if needed , you will feel better .
Until they tell you it is , it’s not !! I just wanted to respond so you know you are not alone , I’m sure someone else will be along soon with some excellent advice , take care
Sending lots of love
Hi everyone I’m new to this forum, I had stage 1 grade 2 bc last year and recovered after treatment, I’ve not felt right for about 10 weeks, reduced appetite, off tummy etc, had blood tests and a couple of enzymes were raised so had an ultrasound and it says multiple suspicious lesions throughout liver, ct scan booked for Monday but I’m pretty sure that’s for confirmation of liver mets. I’m really frightened and shocked, I’ve been foolishly googling and looking at sites that say liver mets has a poor prognosis, I just need some help as I’m not coping x