I stupidly Googled!

Oh no Elvira, don't fret we all do it.  I don't have the same cancer as you but I can understand the spinning. Before cancer I was a half empty glass kind of person...I'm even worse now. It is hard to continually have a positive mental energy but we must try. I had my peg fitted yesterday and have my first radiation treatment tomorrow so I am staying well away from Google. As many folk say on here we are all individual and we all react differently. Xx

Thank you, I have always been a glass half full person and I need all that now! NO MORE GOOGLE! Thank you for the response it means a lot x

There is always someone on here that will respond, we are a friendly bunch xx

I think cancer patients go through many problems mental physical and maybe spiritual. I am no longer sure what positive energy is. I cannot control my cancer, my prognosis of only a few months further add to my state of having little control.

But the only thing I can control is my mind and thoughts. I no longer real with anger or freeze with grief. I just accept and go for long walks. I am thankful  for everyday and try to be gentle on myself.

I suspect we all have sought answers from google, even here we see the worried and those struggling. Those who are coping seldom post.

Be gentle on yourself nature is giving you enough to cope with.

Hi Elvira 

Of course you are not a fool, we all do it. Based on your other posts, I am not sure whether you know it’s tnbc or whether you are worrying it might be. I also don’t know what you saw on google and it’s difficult to unsee whatever you saw, but a lot of the prognosis type information for metastatic tnbc is out of date as new treatments have been approved in recent years. Metastatic tnbc doesn’t have the wide range of treatment options available to oestrogen and/or HER2 positive cancers, but the landscape is a lot better than it used to be and there are other drugs in clinical trial. And if it’s not tnbc there’s a lot of things that can be done  

I have been living with metastatic tnbc since 2022 and here I am, alive, well and in remission.  Click on my name and you can see my story. I don’t know whether your treatment will be the same as mine because not all tnbc is the same. My tnbc is PD-L1 positive and I therefore qualified for the immunotherapy drug pembrolizumab alongside chemo. If you do too, that’s likely to be what’s offered.  Pop back on once you have had your oncology meeting and know what treatment is proposed we will do our best to support you. 

Hi Coddfish, just had my second oncology appointment. I can’t have immunotherapy as my PDL1 is negative so I am currently waiting for an appointment at the Royal Marsden to have SRS on the brain tumour then I will start chemo. It will be Carboplatin and Paxlitaxel , with the paxlitaxel every week and the Carboplatin alongside every 3 weeks for 8 cycles. I didn’t ask about life span as no one really knows. Some of the side effects look …interesting, but it will be what it will be and I will take it one day at a time. The breast cancer is metastatic pleomorphic lobular carcinoma, triple negative ER PR HER 2 neg, with bone mats and single cerebella metastasis! Lots of words and things all very confusing! And I’m not ill, it’s so surreal! Any advice would be welcomed thank you xx

Hi Elvira 

I am glad you have more info and a plan. As you say, lots of words and a load of information sheets with lots of possible side effects. I haven’t had SRS but it sounds suitably high tech and precise. The Royal Marsden will be one of the best places to go. It’s good there is only the 1 brain met to zap. On chemo, I have had paclitaxel. I had 4 cycles (12 weeks) as part of the treatment for my primary, and then NAB-Paclitaxel alongside the pembrolizumab. It felt a bit relentless being on a weekly treatment but quite doable. The worst consequence has been lingering peripheral neuropathy. 

I think you are wise to not ask for a life span. Other than they can only give you guides based on what has happened to other people, once you hear it, you can’t unhear it. I don’t think living with a use by date over your head is terribly helpful. 

I hope the treatment keeps you feeling well.