Jaundice/confusion secondary breast cancer in the liver

Hello...sorry to hear about your Mum, I do know how hard this can be. My lovely 86year old Mum was diagnosed with secondary breast cancer in her liver in Aug2020 having recovered from breast cancer in 2018 after surgery to remove tumour and lymph nodes. 
She was offered hormone therapy as only option (Tamoxifen) as she also has heart failure so no other treatments are possible. Oncologist said unsure how long Mums got, but more like months rather than years :(

She’s always been bright as a button and so switched on but in last month she’s much more confused, poor concentration, forgetful, difficulty making some decisions, much more tired, has trouble writing, has a hand tremor and just less like herself. She doesn’t have any jaundice though. It’s so hard to see her getting like this, breaks my heart. I’m her only carer and see her everyday and we manage alone ok at the moment.

Having done some research, I came across Hepatic Encephalopathy which basically is when the livers not working properly due to disease, toxins build up and these symptoms occur. There is treatment that may help symptoms incl lactulose taken in conjunction with certain antibiotics. I’m speaking to the GP tomorrow to see if that may help Mums symptoms a bit...just more meds she has to take on top of everything else. But anything that makes her more comfortable is positive.

I hate the helplessness that comes over me about all this, I know the ultimate ending but the anxiety of not knowing what’s going to happen when, drives me crazy at times. Mum & I can talk about most things and it’s so hard when she just isn’t quite there at times.

sorry I’ve rambled on more than I intended, hope some of the info helps you and please let me know how things go, hope you get some support via the hospice, our local one is brilliant.                 Am sending you positive vibes :) take care 

Thank you so much for your reply. 

I'm sorry I've only just seen it. 

So sorry to hear about your mum, it sounds like very similar symptoms, with the confusion etc it's the most heartbreaking situation. The anxiety of not knowing what is going to happen and when is really unbearable 

I had read about Hepatic Encephalopathy earlier this week, and reading about it made all the pieces come together. I'm beating myself up as if I had found out about it sooner maybe I could have got her some treatment to help with the symptoms. I was just convinced it was maybe Alzheimer's starting with there being such a close family connection. 

Did you have any luck with the GP? 

Unfortunately things have gotten worse with my mum. I went to check on her on Thursday, as she wasn't answering any calls or texts. She was really confused and withdrawn and the jaundice seemed worse. She managed to say she was dizzy. I ended up ringing an ambulance and in the hospital she became more confused and didn't know where she was. 

After further scans unfortunately they have found it is now in her brain as well. 

They are hoping to give her steroids to help shrink the swelling and help with her confusion. They have agreed that she will needed in patient hospice care. 

I'm heartbroken and not quite sure how to process the information. I hate that we can't visit at the moment and worry that she may be wondering why we aren't there. 

Sending lots of love and positive thoughts to you and your mum. Xxxx

Hello again...thx for your lovely message and I’m so sorry to hear yr Mums situ has worsened , it’s all such a worry and you never know what to expect next. But you sound very supportive to her and doing your best...I’m sure she’ll know she’s being looked after well.

My Mum was very poorly last Oct, thought we were getting near the end, but she went on steroid Dexomethasone and within a couple of days she was so much brighter, her appetite came back and helped a bit with the liver capsule pain & swelling that was pressing on her nerves. She perked up so well, the Gp agreed then we could keep her in a maintenance dose of 4mg per day. Apparently it’s quite usual for terminal cancer patients to have this treatment. That was 3months ago and she’s still rallying - the District Nurse said she’s a great example of how good this steroid can be for cancer treatment. I really hope that this will help your Mum too. 

With regard to the cognitive changes, I spoke to our Gp on Fri and he said Mums recent bloods didn’t indicate HE so he suggested we mention to the Oncologist on the tele insult on 22nd Feb as she may need a CT on her brain to see if it’s spread there. So ironic that your poor Mum has just had that diagnosis too. Do let me know how she gets on. At least you can be comforted that she is in the best place for palliative care, hospices are just brilliant.

So do take care, I hope you can go see your Mum soon, sending you love and positive hugs too x

Hi, 

Thank you so much for the lovely and supportive reply. 

That sounds really positive about the steroids, I'm really hoping that they can start her on something soon and that it may help the confusion. 

It's difficult having to get telephone updates from different people, but from what we can piece together she is struggling to feed herself and isn't answering her phone, so we are thinking she may have forgotten how to use it.  

Feeling so helpless at the moment. 

Im sorry you havent got answers regarding your mum's confusion yet, keeping everything crossed for you that it isn't in her brain too, bless her. 

When I read up on HE it fits everything that we experienced with my mum, yet we have found that the medical professionals don't seem to consider it much. Although her consultant was the one that mentioned that the confusion could be caused by the liver, but it hasn't been mentioned since. 

Again thank you so much for your support. 

I will keep you updated. 

Sending lots of love to you and your mum xxx

Hello ... just wondering how you & your Mum is getting on?

My Mum is sleeping much more every day in bed and has a large, hard distended belly, mottling on legs, increased confusion, fortunately the pain is under control. After last CT scan on 7th Feb & telephone consult with Oncologist on 22nd Feb, the tumours are progressing in her liver & hormone therapy not working so that’s now stopped. So we have district nurses supporting and am trying to make her as comfy as possible at home. The f I can’t manage, we will look at hospice care, but she really wants to stay at home.

I feel quite lucky to have these days with her, we have a cuddle and chat in bed watching rubbish on Tv, but then the guilt comes up when I think how long will this go on for? Anxiety through the roof, increased dose of Sertraline helping a bit. 
sorry I’ve rambled again, but it’s amazing how cathartic it is typing into this little white box on my phone! 
hope you’re well and take good care xxx

Hi,

Sadly my mum passed away on 3rd Feb.

Although we got a couple of days notice it all seemed to happen really fast. 

It was really difficult as she was in hospital, so we weren't able to visit until she was unresponsive and the drs were certain that she didn't have long. 

When I phoned the ambulance on the Thursday although she was confused she was talking and feeding herself. But by the weekend the nurses were telling us on the phone that they were just feeding her dinner! They were speaking as though that was normal for her and we had to explain that it was a massive decline. She also seemed to have forgotten how to use her phone and we were just told she was really quiet. On the Monday we were asked to go in and were told the devastating news. 

I feel lucky that I got to see her and tell her everything I wanted, to hold her hand and kiss her goodbye. She wasn't awake but I have to hope she could hear. 

She passed on the Wednesday morning just as we were setting off to visit, it breaks my heart that she was alone but I am comforted by the face it was peaceful. 

Her funeral isn't until this Wednesday so a full month. Feels like we have been in limbo waiting. 

Just going through phases of being numb and being devastated, but I think that's the brains way of protecting us when something is too painful. After all grief is just love in a different form, and it hurts so much just because she was so loved 

I'm so sorry to hear that your lovely mum has gotten worse. 

But I'm pleased that you have time with her to sit and talk, and cuddle and that she's comfortable at home around her own belongings. 

I totally know what you mean about wondering how long it will last, I felt exactly the same, I'm glad you said it actually as it makes me realise that it's a normal feeling.  It's such an anxious time, and waiting and not knowing is torture. Please be kind to yourself. 

You are doing an amazing job and are obviously doing everything you possibly can to fulfill your mum's wishes. 

Sorry I've rambled quite a bit! 

Take care xxxx

Hello, I’m so sorry to hear about your dear Mum and I hope her funeral tomorrow is a comfort to you and your family.

im sure your Mum was aware you were there and heard you as I understand even though she wasn’t awake, they can still hear your love.

sadly, my Mum deteriorates each day and I’m with her 24/7 now making sure she has the care & support she needs. It’s hard but also rewarding to know I’m returning all that she has ever given to me if that makes sense. The Marie Curie nurses are going to be helping me soon and that will be much appreciated.

take each day at a time, be very kind to yourself and keep all the memories with your Mum dear and eventually the hard months just passed will fade a little and you’ll remember the joy more than anything.

take care, love & cyber hugs to you xx