Hello
I am new to this group. This is my first post. I am 34 and have a 2 year old son. I was diagnosed with metaplastic tnbc in march 2024. Primary tumor was 1.2 cm and stage 1. Even though i was terrified I slowly came to terms with it thinking that it’s small and curable. Later in a breast MRI they found a large (6.8 cm) non mass enhancement which they thought is dense breast tissue. Biopsy confirmed that the large non mass enhancement is Invasive ductal carcinoma. I upgraded from stage 1 to stage 3 because of the size of the tumors. No lymph node involvement. Had CT and PET in march, no metastasis. I did 4 rounds of AC and 12 rounds of taxol plus carboplatin along with keytruda. My tumor is shrinking and half way through chemo the initial 1.2 cm tumor almost gone. Had a follow up MRI to check the non mass enhancement and it increased from 6.8 cm to 8.2 cm, oncologist said it’s probably inflammation and seemed not too concerned about it. Finished chemo sept and mastectomy scheduled for oct 15. Just had a CT and bone scan last week. Bone scan is clear but they found a 11 mm lesion on my liver and it says may be metastatic on the report. Waiting for biopsy. Very scared and terrified of dying young and leaving my son. Please help me. Googled survival chances and they are very slim. I feel like my time here is coming to an end. I am in a very dark place.
Welcome to the forum @neelima90 . I’m
so sorry you having such a horrible scary time . I’m sure others will be along to hopefully share their experiences soon but I just wanted to say that once you’ve had breast cancer they always suspect metastases when looking at anything a bit different on scans and often further investigations will find other explanations . I was told I probably had extensive bone mets after 2 MRI scans - I didn’t but it took several months to get to that point . Please stay away from Google it will not give you an accurate picture of what you may be dealing with at all - information is based on treatments that people were given 10 plus years ago and treatments have moved on massively since then . There are people on the forum who’ve lived for many years with secondary breast cancer so don’t write yourself off just yet . Best wishes Jill x
Thank you for your response Jill.
I am sending you masses of love and will keep you in my prayers. Please don’t Google things, always speak to your oncologist or member of your cancer care team. Personally I found Google made my anxiety go through the roof. Keep strong lovely 
Hi @neelima90,
I am so so sorry to hear what you’re going through, and how you’re feeling. I would really recommend speaking to one of our nurses, as you are in such a dark place, they will be able to talk you through the support available to you and also provide a listening ear to your fears and anxieties. You can reach them on 0808 800 6000 or send them a private message on any of our social media platforms.
As the other responses express, we really do suggest not Googling during this time, and only reading trusted sources such as Cancer Research UK, MacMillan, or our own website. Every case including yours is individual and unique to your circumstances and medical history and only your oncology team can comment on that.
We are sending you all the love and best wishes in the world, and we are here for you every step of the way
I had early stage TNBC, no lymph node involvement. Half way through adjuvant chemo (EC followed by Paclitaxel) I had a CT scan for other reasons which also found a lesion in my liver which turned out to be secondary TNBC. Route of travel assumed to be blood. Both my original breast tumour and the liver lesion were PD-L1 positive, so I was then treated with Pembrolizumab (Keytruda) and NAB-Paclitaxel. I had a serious adverse reaction to the pembrolizumab causing organ damage and had to stop treatment, but it had done enough to put me in remission. I had a microwave ablation to clear out residual tumour and have been fine so far since. So there is hope - pembrolizumab doesn’t work for everyone, it can work a bit too well (as in my case), but you might well get a good result from it.
Thank you for giving me hope. How long have you been in remission. Do you still get infusions or chemo pills?
I haven’t had any immunotherapy or chemo since August 23. The ablation was in Feb 24 when it became obvious my 2 liver lesions were stable post-immunotherapy. The only treatment I am on is replacement thyroxine because the immunotherapy adverse event killed off my thyroid as well as damaging my kidneys and lungs. I have a scan every 3 months, and I face each one with a mix of hope and fear!
I know others have advised you not to Google but Keynote-522 was the clinical trial of neo-adjuvant treatment of early stage TNBC comparing adding Pembro to the standard regime, and Keynote-355 the trial for pembro with chemo in the metastatic setting. The first study shows a large number of people in the standard treatment arm (ie those who didn’t have pembro) did well, as well as the increased survival rate for those who had pembro. The second shows those who achieved a response to the pembro generally went into sustained remission (as I have). So lots of hope.
If your liver tumour is small and you don’t have spread anywhere else, microwave ablation is worth a go. I have had the procedure twice. They tried it first, before putting me on pembro, but my tumour came back and I developed another. Then again in Feb 24.
When I was first diagnosed with metastatic TNBC, an oncologist friend of my niece (my niece is also a doctor) told me there were lots of things in trial and my job was to stay alive for a few years as those things would come on stream. I thoroughly intend to and there’s no reason to assume, just because of historically poorer survival rates, that things are like that now, or will be in the future.
Hello everyone I just wanted to update my biopsy results. It says its benign but they don’t exactly know what it is. The report says hepatocellular loss filled with inflammation. Don’t know what that means. Have oncology appointment next week. Thank you everyone for all your responses.