Struggling to stay positive

Hi Penguin80

I'm Daisy53 one of the Community Champions on this forum.  I'm sorry to hear that you have metaplastic breast cancer which has  spread to your lungs and that you are struggling at the moment.  I noticed that you are a member of the breast cancer forum as well and I suggest that you put this question into that forum as well as it's a much busier forum than this one, and hopefully someone can give you a bit of hope.

If you feel up to it you could ring the helpline on 0808 808 0000 to talk to someone about how you are feeling.  They can arrange counselling for you if you want.  You could also put the question into the Ask a nurse section of the website and they may be able to give you some hope as well.  Here's the link to that: Ask a Nurse. 

Wishing you the best of luck with getting on the trial at St Barts Hospital.

Best wishes

Daisy53

If you Google prognosis for metastatic TNBC it comes up with the 12 months median they had mentioned to you. By its nature as a capture of historic data, this is based on people who haven’t had the benefit of newer treatments like Trodelvy or the combination you hope to get through the clinical trial. 12 months is also not specific to you - your overall health, your specific response to treatment, the extent of your existing metastasis, etc etc, may be significantly different from those the wrong side of that 12 months median. Unfortunately you can’t unhear what you have heard, and it’s understandably stressful and difficult waiting for a treatment plan and also worrying about your son. Yes there are people out there doing well, I am one of them, and hopefully you will become one of them too. I don’t know how you can stop spiralling on this but I hope it will become easier for you when you start treatment. The old adage of taking it one day at a time makes a lot of sense.

I look back on when I discovered my TNBC was metastatic. I didn’t ask the prognosis question but I went through the same Google searches and knew about that 12 month median. I spiralled into researching treatment options. It took a long time to get a treatment plan. My secondary was found in Sept 22 when I was close to the end of chemo for my primary. I had an unsuccessful ablation that December and it wasn’t until May 23 that I started on Pembrolizumab. By then the original tumour in my liver had tripled in size and developed satellites, and I had a new tumour in another segment of my liver. But here I am, more than 3 years after the devastating news, and as far as I know still with no evidence of disease. Different variant of TNBC so a different treatment pathway, but it’s not that long ago that none of these treatments were available. Try to hold some hope.

Thank you I have done! 

Codfish you are so good at responding to everyone thank you as always!  I must learn Google isn’t my friend!