Breast cancer stage 4, spread to liver and lungs

I am sorry you find yourself in this situation. I was diagnosed with TNBC in Feb 22 and found it had spread to my liver in the autumn of the same year. I am still here. I have never asked how long I have as I doubt it’s possible to have an accurate answer, and I don’t want a use by date hanging round my neck. It makes obvious sense to make sure you put plans in place for your son, but please don’t feel this is the end. There will be a treatment plan, it will become easier. It’s a horrible shock right now but you will adjust. 

Hi Coddfish, you're doing remarkably well,  can I ask what treatment you're on and can you lead a semi normal life? What about working,  holidays being around other people,  sorry to bombard you x

I initially only had 1 tumour and had it removed through microwave ablation. At the first scan it had reformed, plus I had developed a second tumour elsewhere in the liver. I then went on immunotherapy (Pembrolizumab) combined with NAB-Paclitaxel. After about 5 months of that, I had a serious adverse immunotherapy event, where my immune system damaged key organs. I had damage to thyroid, kidneys, lungs. Started on high dose steroids and 6 months later I am still weaning off them. The immunotherapy had shrunk the tumours considerably, so I have had them ablated again, 4 weeks ago. 

I have never felt the need to shield from other people as Paclitaxel doesn’t seem to reduce my white blood cells (I also had Paclitaxel as part of my primary treatment) and in any case I have spent most of the time off of treatment. I am retired but on some boards, which I have been able to continue with, albeit I was very unwell for the first few weeks after the immunotherapy adverse event. 

My full story is in my blog. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

oh wow!!! that is such good news!! are you on chemo therapy? or tablet medication? it is amazing how the mets in your lungs have completely gone :) 

im soo excited for you, you must be soo excited too! i have never been to Thailand, but would like to go one day :) 

hi Coddfish,

ye first thing i did after coming home from A &E, the next day, I made an appointment at the solicitors and started the process of writing a will and spoken to my partner and brother about what i wanted. Just speaking to them was hard, seemed like non of them wanted to hear about the Will and trying to hold their tears back

it is a big shock to all of us, hopefully I will adjust  xx

Thank you for your reply,  I'm starting exactly the same treatment journey as yourself ( 1st paclitaxel on Friday) goodness me you've had a rough time though,  this is my 3rd battle with triple negative breast cancer and by far my hardest,  I seriously thought I had eliminated my risk by having a preventative Mastectomy in 2019 only to discover the other week that it doesn't reduce your odds at all if you've previously had cancer,  I've started off trying hard to be positive but I am really struggling,  aside from the main tumour I have nodules - one in my lung and one around my heart,  just hoping for a miracle really,  it's good to read your story though,  you are an inspiration!

Hi Coddfish

I have just read your blog, cancer is such a horrible disease, it just cant stop giving. Really hope that you will get some good news and that Microwave ablition works this time round and it wont grow back.

I really want to give you a big hug whilst reading your blog :( 

Like you, i have also been to solicitors to set a Will, this seem to have made me feel better, as my son is only 8 and his father is not in sight since he was 1 years old. So having a Will to appoint guardianship puts my mind at rest.

My treatment plan now is to take caner tablets to try and stop this cancer in lungs and liver from growing and no chemo for now. Hoping this will work and give me some time.

sending lots of hugs your way xxx

Wishing you all the best

Thanks, wishing you all the best

Hi ATee 

I am sorry I am late to welcome you. A very warm welcome to the group. As you have found by the replies, this is a great group, we get how you are feeling because we are in the same position. All different cancers but the same incurability.

I have had a different cancer in 2022, I am currently stable after treatment since September 2022. I didn't expect this and on bad days wonder what it's all about and that I'm just waiting for it to come back. That's when I know I need to get out for a walk to sort my head. You can read my profile if you'd like. Just click on my username. It's a good idea to write a profile yourself as it helps others in their replies and it saves you repeating yourself. Just click on your own username then profile and save when you've written it.

As you have some worries about your son, it may help you to speak to your GP or the Macmillan helpline. The helpline staff are excellent and will give you advice and support and will help you with the things needed to be put into place so that you have some peace of mind regarding your son. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us

Best regards

A x