Does anyone get so paranoid that they prod and poke and make themselves sore? I then convince myself that the cancer has spread to my lymph nodes and other places. The last 3 months have been so overwhelming. I was on a phase 3 trial at St BARTs which worked wonders on the cancer. I have secondary breast cancer on the liver. Everything was working great then on a scan there was small progression, the trial stopped and before starting a new treatment on a head scan they found 3 tiny mets. I look at the positives that if the trial hadn’t stopped they wouldn’t have found them and they’ve been dealt with via a single radiotherapy but the down side is I’m mega mega paranoid about every little feeling in my body. Any scheduled phonecall, even just a check in with the oncologist I get so worked up and get incredibly upset afterwards to the point I make myself hysterical sometimes.
Does anyone else feel this? Any advice would be incredibly appreciated. I have a great support network but feel so alone in all this.
Hi Shellee
I think we have corresponded before. I am sorry you are feeling like this. I have been living with metastatic tnbc since 2022. I achieved a remission and am on regular scan surveillance. My cancer had spread to my liver but I can no longer have liver MRIs because I had an ablation and the ablation probe exploded in my liver leaving metal fragments. So I can only have CT scans now, or a PET/CT if they are concerned. My next one is next week with results 2 weeks later. I get anxious when the appointment lands. Anxious when I go for the scan. Then increasing anxiety leading up to the results appointment. It happens every single time. I start thinking my liver hurts. I wonder about anything else new or strange in my body. Then when the results are ok, it all disappears until the next scan is due.
I guess what I am saying is that what you are experiencing is absolutely normal. We are living with something unpredictable and life threatening. My oncologist always describes tnbc as tricky. I think even when the news is good, it brings back a grief cycle. The first time I learned I was in remission I spent the next few days and nights on n a cycle of reliving all the horrors I had been through. On the point about feeling alone, I am not sure anyone who hasn’t been through this can fully understand it.
For me, it has got a bit better over time as my remission has remained stable. But I don’t think I will ever become blasé about it.
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I have metastatic Triple Negative Breast Cancer, in remission
