How to stay positive

Hi 

I am so sorry about your situation especially at such a young age. It is a completely normal response to a highly abnormal situation. Be kind to yourself and allow time to absorb the shocking updates. 
Like you I had an incurable diagnosis last December and my recent CT scan is showing a small growth and requires further scan. 
I would say the mental health struggle was the hardest last December. It took me a couple of months to accept my situation and moving on. Since then I was in a very good place. Recent set back did make me feel very low again. But this time it only took me 1 week to move on from low mood. 
so I can totally related to how you are feeling right now. 
What I learned is that we are stronger than we think. We can not control the biology of cancer but we can choose how to react to it. The blue sky is always here. You can and will come through this. It is really helpful to talk to a counsellor about this. Maybe your MacMillan nurse can help you with this? You can also consider anti depressants from GP too.

Be kind to yourself  and take care

Stella x

I know I have replied to you on another forum already. I can’t imagine how awful it must be going through this as a single parent with a young child and it’s absolutely normal to feel the way you do in this situation. Rant away. I don’t have metastatic metaplastic TNBC but I do have metastatic tnbc. Mine metastasised to my liver. The secondary was found by chance, and it seemed to take an age to get to a treatment plan. First of all, they wanted to get more tests done on the samples from my primary cancer, which had been removed a few months before. That revealed my primary was PD-L1 positive, which opened up the option to be treated with the immunotherapiy Pembrolizumab. Then they decided to ablate the liver secondary and get a biopsy from it at the same time. That confirmed it was a tnbc secondary, so we sat and waited to see if the ablation had been successful. It hadn’t. So they then wanted to confirm the liver sample was pd-l1 positive. It was. All of this took an age. I finally started treatment almost 9 months after the problem had been picked up on a scan. 

The time delays, and the extra tests they inevitably do, are frustrating, but it’s all about getting the right treatment plan. Once upon a time, TNBC was just understood by what it didn’t have, and treatment options were limited. Now there are PARP inhibitors for TNBC that has BRCA defects, PD1 and PD-L1 inhibitors for cases like mine, and sacituzumab govetican (Trodelvy) as a treatment line where the others don’t fit or have failed. They just have to work out what’s right for you. 

Try not to blame yourself. This isn’t something you have caused. Try also not to lose hope. I don’t know which of these treatments will be suitable for you, but your oncologist will work it out. No one can say whether they will work for you even if suitable, but hang on to the hope that they do give remission for some people. I am a case in point. 2 years with no evidence of disease thanks to pembro and a second (clean up) ablation. I have of course spent time putting my affairs in order, because it comes with no guarantees, but my gut tells me the longer this lasts, the more likely it is to last. One day at a time is now one scan at a time and I am now on six monthly scans. 

Thank you Coddfish, I’ve just gotten off the phone to make 2nds count which I highly recommend Mel the nurse I spoke to is going to research trials for me.  
I did have another very depressing call with my breast nurse who was again all doom and gloom saying to make my plans for many son ASAP as the oncologist was probably accurate so I was in floods and calling my brother to come for my son.

the charity also said to get a second opinion and to go to the royal Marsdon if I can afford to get a private appointment,  a dear friend has just offered to pay for one as has my mother and aunt so I will definitely do that.

keep well yourself and thank you again .

I attended a conference organised by Make 2nds Count and it was excellent.  The Royal Marsden do offer a service, but you can also ask your oncologist to arrange a second opinion which shouldn’t cost anything. Unfortunately when you have something rare, it can be hard to find people with direct experience - the Royal Marsden couldn’t help me when I wanted a second opinion on continuing with Pembrolizumab after I experienced kidney damage on it. I had been one of the first two mTNBC patients to go on it in my own hospital, just after it had been approved for metastatic TNBC, so perhaps not surprising that they didn’t also have experience. 

Whilst my hospital team haven’t loaded doom and gloom on me, and I have never asked for a prognosis, it’s always been clear I am doing rather better than they expected. Experience with the newer drugs isn’t yet there. 

There are quite a few people on this forum who are surviving quite well despite the incurable label. 

As soon as I knew I was metastatic I made sure my affairs were in order. I updated my will and put LPAs in place. It actually helped to know things were sorted. I hope you can come to see making plans for your son as something constructive to have in place. Probably everyone should do that sort of thing, whatever their circumstances.

Thinking of you. 

I maintained a blog during my treatment, if you are interested. it’s linked from the bottom of my profile.