Hello I got diagnosed today as MTNBC I have a lymph node that tested positive that’s on the opposite side to my primary. (First diagnosed in 2022, recurrence found at Xmas) I feel so lost. I have two young children and can’t bare the thought of not seeing them grow up, or being on treatment indefinitely and they never remember the real me, only the poorly me. I’m eligible for immunotherapy but my dr says that this will not give me ned. I know new treatment come out all the time but I feel hopeless right now
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I am so very sorry to read this post. I so wish I could offer words of comfort and support. I hope that you will get the pastoral care you need to help you through the emotions.
Here’s hoping new trials and treatments will become available. Wishing I could be more useful. x
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Hi,
I’m so sorry to hear your diagnosis. It is such a lot to take on board and nothing can prepare you.
My primary was in 2019 and my secondary diagnosis (lymph nodes around shoulder/collar bone and in centre of my chest) was in 2022, so I am 4 years on from you, but I still remember the intense grief and feelings of loss from that time. Those feelings haven’t gone away but it has become much easier to deal with over time.
I have been on a few different treatments, some harder than others, but mostly I have lived well and been able to enjoy life. The cancer is still under control and has not spread anywhere else. Please know that many people still have a good life living with cancer.
The things that helped me were counselling (although you need to find the person who is right for you), mindfulness (you can get the Headspace app free through Penny Brohn) and my friends who have really stepped up to support me. I hope you will be able to find support from wherever works best for you.
My children were a bit older when I was diagnosed with secondaries (19, 15 and 15) but it is still the thing that makes me saddest. Counselling helped with this.
Breast Cancer Now have a helpline you can call on 0808 800 6000 and when you feel ready also have a look into Penny Brohn charity - I went on a short retreat there and it was amazing, plus they do lots of online sessions.
Take care, and sending you a big virtual hug.
Lisa x
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I have mTNBC, my mets were in my liver. Immunotherapy (Pembrolizumab) has had me NED for 2 years and counting. Don’t give up hope. More than 10% of the patients in the keynote trial that trialled pembro for mTNBC got a full pathological response and most of them stayed clear through the follow-up period.
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Just read your post - I was diagnosed with MTNBC last summer and was absolutely devastated.
I asked the oncologist if I would see Christmas! This feeling of imminent doom lasted for a few months
I’m on immunotherapy and Abraxane ,fatigue is main side effect ,otherwise tolerating it well
My tumours were in my liver and spleen ,I had lost a lot of weight and was in pain before my CT scan gave the diagnosis
My tumours have now shrunk significantly ,my lymph nodes (numerous)are all clear and cancer marker test has more than halved.
On treatment I have felt so much better ,I can eat again and have regained a little weight
My sister and best friend give me a hand in the house and garden when I’m really tired but on the whole I’m running the house as usual and doing the shopping etc
Mentally I’m now able not to dwell on statistics (determined to beat them )or even the fact I have stage four MTNBC
I go to an exercise class organised by the hospital for ladies in the same situation and that and the coffee afterwards are fun - no one is gloomy
So reasons for optimism!
Wishing you all the best
Viv
X
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This is encouraging. I had TNBC (chemo, lumpectomy, radiotherapy, more chemo) and in Dec 2025 was told in remission. Just starting to recover from fatigue when I found myself having an abdominal ultrasound ( persistent constipation) Had the all clear on the breasts but now waiting for an oncology appt to discuss results of CT scan - nasties in the liver.
Am so scared - and after just 5 months of being all clear. I am SO glad I was never asked to ring a stupid bell - tempting fate and such a ridiculous thing As you can tell I am furious. I’m quite old (71) but I really thought I’d have few years when I wasn’t taking pills that made me feel terrible, just to keep me alive and feel bad .
Sorry, this is a rant not a comment or question but I needed to try & let some anger out. Currently anaemic and low blood pressure. Roll on Wed - It can’t be worse than not knowing the future
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I am sorry you have something going on in your liver. I was halfway through chemo for my primary tnbc when I ended up in hospital with what turned out to be infected diverticulitis. The CT scan I had for that revealed a liver lesion. I went on to have a full body PET/CT, where only the spot on the liver lit up, and a liver MRI. It was quite a surprise no my oncologist. No lymph involvement, it had probably travelled through blood. The clue lay in the mention of vascular invasion in the pathology report from my WLE. It hadn’t been thought to be much of a risk factor at the time.
I hope you have a bit of certainty after your next appointment.