18-24 months left and devastated

Living with secondary breast cancer Supporting each other and sharing experiences
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Help I’m having a bit of a panic attack so Needed to come on and chat.I was diagnosed with grade 3 primary in 2016 followed by mastectomy chemo and radiotherapy. I developed bones mets in 2020 then liver mets in Oct 22 I’ve always been positive due to the fact it’s been drummed into me from the medics and this forum that there are lots of treatments to try. I’ve had palbo and fulvestrant from 2020 until I started capecitabine in oct 22 after the third dose I got really bad side effects and the liver mets slightly increased so oncologist  arranged for a liver biopsy and discontinued cape. I had an appointment last Monday even though the liver biopsy results aren’t back yet. Nothing other than what I’ve mentioned has happened in between but on Monday oncologist said I now needed to start on weekly iv chemo if I want to. I asked why and he said I’m now terminal and he would guess I had 18-24 months at best left. I was very shocked as I feel nothing has really led up to this and where are all these treatments I was told are available? I feel sick with sadness as my adult children are devastated as we’re so close.?I have a 95 yr old mum who lives with me. I have always hoped and believed the medication would keep me going for longer. Also Ive read so many positive stories on here I think where ladies have both liver and bone mets and do really well. When I asked my breast nurse what makes me different she said it’s because the liver mets have grown and I’m not responding to treatment so it’s unlikely the other treatments will work either. Please if anyone can give me any info of any similar journeys with more positive outcomes please let me know. I know I have to be realistic but I don’t want to thinks it’s the end if there’s hope. Love to you all Deb

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Hi Deb,

No oncologist worth their salt should try and guess how long you have left. Especially as there are a myriad of drugs yet to try/retry and the only progression is to bone and liver.

My wife has flipped between ER+, to TN, to ER+ again. She had mets in the bone, which were treated and have healed. Then she had mets in the liver, which according to the latest PET are no longer active. She is on Cape, but at a much reduced does due to side effects, and also Avastin. She still has active cancer in some lymph nodes around her neck which are ER+, so they’ve added exemestane. It’s a process, and her oncologist’s answer to the “how long” question is, and always has been, “ask me again in 5 years”.

Have a look here at all of the drugs approved to treat breast cancer: cancer.gov/about-cancer/treatment/drugs/breast

There are so many, and until you’ve tried all the applicable treatment options, “terminal” is not on the cards, which I take to mean as “nothing more we can do”.

Hopefully your liver biopsy will reveal the nature of the beast, and you can get on with treatment.

Don’t forget that new drugs are being developed as we speak too!

I know it’s hard, but try to remain positive, and enjoy life!

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Dear @buster1 , I am sorry to read your post. You did well to come here and post about how you’re feeling. We are all here for you.

Would it help for you to chat to someone in our nursing team? They are kind, patient, and entirely non-judgmental. Even if you’re not sure what to talk about, calling our team may help. You can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Please don’t think twice about calling us.

Sending all our love

Bernard