Secondary Mets from breast to Liver

Hi LJR 

I am sorry you have developed liver mets. I had liver mets too although mine were isolated and I was able to have ablation after systemic treatment and have reached a stable remission. I don’t know whether my treatment pathway would be relevant to you as I have TNBC. Certainly if you have an oestrogen driven cancer there are lots of treatments and many oncologists regard it as a chronic condition to be managed. I have a friend who has been stage 4 for many years and is on her 17th line of treatment - if only there were 17 lines of treatment for my cancer!

I never asked for a prognosis as I felt it would be like having a use by date stamped across my brain. I was however aware it was a serious position to be in so took practical steps to make sure my will was up to date, that I had power of attorney set up, and that my loved ones knew my wishes. My primary cancer was early 2022 and was probably de novo metastatic. But I am still here.

Thank you so much for your considerate reply. I too am considering the legal steps I need to take. I keep thinking that if I pass, and something happens to my husband my children will have no one, they will be orphaned and that is destroying me. I am finding that my brain is jumping to death as opposed to being able to focus on the fact that this is treatable to allow time, I’m panicking. Mine is oestrogen driven. 
something else I am panicking about is that I have since 2021 been treated privately. We are no longer in a position to carry this on, I was paying £850 per month but it would go past £1000 at renewal this month, and I am very uncertain as to how effective the NHS is with treatment as you only hear of horror stories, not the amazing standard of care that I’m sure is out there, it just adds to a level of uncertainty 

Hi LJR I have secondary breast cancer which has now gone to my bones in my spine . I was diagnosed last year two days before my mum passed away so it was a very hard time for me.  mine also is oestrogen driven . I am under the NHS like you I was worried about the level of care I would receive. So far it has been brilliant I am on letrozole hormone blocker and Palbociclib I have had Pet ct scan every 3 months  please don’t worry about the nhs . You don’t need that worry on top of everything else I wish you all the best on your journey xxx 

The NHS is very good at cancer care, my treatment has been exemplary. 

Thank you for for offering some reassurance, I appreciate it. A am so very sorry to hear of what you went through last year with learning of that diagnosis and losing your mum

I am reassured by this, thank you

Thank you . I do understand your worries as when I had my first fight with cancer 16 years ago I was so scared of going with the nhs . So I also went private had a lumpectomy. But I found that it was quite cold no empathy  . I was very scared and didn’t know what to do my brain was all over the place  . They never gave me a choice of lumpectomy or full removal they just went in for lumpectomy. Looking back now I wish they had given me that choice as I would of gone for mastectomy and maybe I wouldn’t of been in this situation now hindsight is great . but its to late now and we all have to just live life to the fullest make some beautiful memories with our families. I am not going to let it me hold me back I grab every moment now  . Don’t get me wrong I was a complete wreck last year I was diagnosed in the February. And I thought that was it for me I had all things going around in my head that I wasn’t going to see Christmas wasn’t going to  see my granddaughter year her first birthday she was born 6 days before my diagnosis again I was scared to stay with the nhs ,  but honestly I have a very lovely team from the nursing to the oncologist  I go every four weeks for denosumab injection . Best wishes️️

Thank you for such encouraging words, I’m so pleased that your experience has been a positive one ️

Hi I'm not sure if this is a post or just a reply so I'm sorry if I mess this up as first time on forum.

I have just been diagnosed with Secondary Breast cancer which has spread to the liver. In complete shock. I was originally diagnosed in February 2023. Underwent all the chemo, immunotherapy, radiotherapy and lumpsectomy. Since then I have 4 local re occurrences and 7 more surgeries. The latest in January this year. April clear scan and I was finally feeling hopeful. Was being scanned every 3 months. July scan results shown 5cm tumour to liver. Started SG Trodelvy last week. 

I'm really struggling to find the positivity I had with my original diagnosis. I have 2 teenage boys and a loving husband and know how lucky I am but at 46 I never thought this would be how it ended. I can't get myself out of the rut of just thinking about dying and not being here for my kids and all the plans we had. Any coping strategies would be gratefully received x

Hi GoldenGoldfinch 

You have replied to an older post, rather than creating a new one, but no matter. Welcome to Macmillan. I am one of the community champions and have been living with metastatic TNBC since 2022. It sounds like you are having a rough time of it. I am guessing you also have metastatic TNBC based on the drugs you have had / are having?

I was originally diagnosed with a supposed early stage tumour from a routine mammogram in Feb 2022. No lymph node involvement. I found I had secondary spread to my liver later that year, whilst still in primary treatment. A sort of lucky break - my first Paclitaxel treatment, or more likely the anti sickness meds given alongside it, blocked me up and I ended up with infected diverticulitis. A CT scan followed with an unexpected finding of a liver secondary. it had obviously spread by blood prior to surgery. They tried to ablate it but a few months later I had a couple of liver mets. The larger of them developing satellites. I then had just less than 6 months of pembrolizumab with nab-Paclitaxel in 2023. Serious immunotherapy adverse event causing an acute kidney injury and other issues meant I had to stop the treatment . Trodelvy was going to be my next port of call once my kidneys recovered, but to everyone’s amazement the tumours had almost gone. I had another liver ablation to be sure and so far have held the remission. I am now promoted from 3 monthly scans to 6 monthly scans but can’t have MRIs becsuse the ablation probe had malfunctioned and left needle fragments in my liver. 

I hope you are getting on ok with Trodelvy. TNBC has been the poor relation for effective treatments for a long time and it’s good there are now a few more things in the armoury.