I’ve had a fairly unusual pathway during my treatment so far.
i was originally diagnosed as stage 2b weakly ER positive grade 3 IDC in November. 30mm lump, 2 lymph nodes involved.
i chose to have chemo first following advice. At first it worked well, tumour shrank about 40% after two rounds of EC. However it started rapidly regrowing soon after this and I ended up finishing chemo early after round five and having surgery earlier.
I’ve had the pathology back in bits and pieces which hasn’t helped. But from the info I have now, the residue cancer taken at surgery was ER and HER2 0, so effectively triple negative. It appears the chemo destroyed the ER positive cells and the more aggressive cells remained and regrew. I had 35mm of tumour and one lymph node still positive for cancer.
I am petrified of what this means. No one seems to be able to confirm if I’m now going to be treated as if I’m triple negative. I’m petrified that I didn’t respond well enough to chemo for a good outcome and what this means for me long term. I know triple negative is highly treatable now but my understanding is that this is before surgery, and as I didn’t have that diagnosis originally, I didn’t have the same chemo and immunotherapy regime I would have done if I had been. My remaining options feel very limited.
I’m in a spiral and I just don’t know how to get out of this feeling that my prospects are now looking pretty poor long term.
has anyone had something similar happen?
Hi Blueelfin
I don’t know whether your tumour has been tested for PD-1 or PD-L1, but immunotherapy can only be offered to people who test positive for one or the other. I think about 40% of TNBC tumours test positive for one or the other. Atezolizumab is a PD-L1 inhibitor and can work on tumours that test positive for PD-1. Pembrolizumab is a PD-1 inhibitor and can work on tumours that test positive for PD-L1. I know it sounds like I have mixed them up but I haven’t - it’s because PD-1 binds to PD-L1 so they use a drug that removes the thing the tumour will bind to.
If you haven’t been tested it’s worth asking them to do so as it might still be possible to treat you in the future.
This is my story. If you click on my name there’s more details on my biography plus a link to the blog I kept during treatment.
I knew I had TNBC from the beginning. It was under 2cm and not in my lymph nodes so I had surgery first. I then had 4 rounds of EC, then became ill as soon as I started Paclitaxel with infected diverticulitis. They gave me a CT scan to look at that. The results got delayed and no one was too concerned as I had recovered and I continued through Paclitaxel. When the results turned up they spotted secondary cancer in my liver. I had another scan after I finished Paclitaxel and the chemo had done nothing for it.
They tested me for PD-1/PD-L1 and found I was a candidate for pembrolizumab. An ablation was tried first and when that didn’t succeed I went on pembro with nab-Paclitaxel. Slightly complicated from there but I achieved a full remission. The above was during 22 and 23 so I am doing well
So you can get immunotherapy later if it’s the right drug for you - and it does work for some of us. I think if your surgery leaves you with no evidence of disease if would only be offered if cancer was found later. But as with me it can work. In all likelihood you will be ok anyway.
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I have metastatic Triple Negative Breast Cancer, in remission
