Why only a 'surveillance mammogram' after treatment for TNBC Grade 3?

I am sorry you are feeling anxious about this. I also feel there’s a tendency to cast people out into the wilderness. I had what was thought to be early stage grade 3 TNBC, no lymph node involvement. Lumpectomy followed by 4 cycles EC and 12 weeks Paclitaxel. I had just started the Paclitaxel when I was hospitalised with diverticulitis. I had a CT scan because of this and it came up with an unexpected finding of a liver met. If that scan hadn’t happened it would have been some time before the secondary cancer made itself felt. As it happened, I was able to clear the cancer from my liver through pembrolizumab followed by an ablation. Like you. I had to stop pembro thanks to kidney, thyroid and lung damage. It took 9 months of high dose steroids to sort that out, but I have remained in remission. 

unfortunately their protocols only scan when there are symptoms. My situation did cause my oncologist to question whether they should routinely CT scan grade 3 TNBC even without lymph node involvement. 

Thank you Coddfish for helpful and interesting reply. When I was first diagnosed I was sure that it had metastatised to my bones because of aching calf. Bone scan showed no mets, but arthritis in both knees, and lumbar spine - which onco said could be the cause of calf ache, oddly. It's probably the osteoarthritis aches coming back now which are making me anxious. I will use your story when I see the oncologist after the mammogram. All best for your continuing remission. X

Thanks. I think my situation was a surprise because I had no lymph node involvement. I did have vascular invasion at the tumour site, which isn’t routinely treated as a higher risk factor, but the cancer had likely travelled to my liver through the blood. If you click on my name, there’s a link to my blog at the bottom and you can read the full horror story if you like such things! 

It’s hard to live with the not knowing. I have been living with cancer for over 3 years and having scans every 3 months since the liver involvement was identified. At the time of every scan I imagine twinges in my liver which go away once I get the results. I have recently been moved to 6 monthly scans which I hope will reduce the anxiety periods. 

On the arthritis point, you mentioned 8 weeks of high dose steroids following your AKI. I had prednisolone. 60 mg per day at first, then a brief period of a higher dose through daily IV, then back to the 60 followed by a long wean. It was 9 months before I was off them completely and it kicked on the arthritis I had very significantly to the point where I now need a hip replacement. So your aches may well be that.  I am grateful that my kidneys eventually fully recovered as they initially thought it was going to be fairly catastrophic. “Have you seen this before and if so what happened?”  “Don’t ask”. 

Tx. I was also on prednisolone, IV first then 60 mg and weaned after only 9 weeks, not months.Similarily horrendous A&E experience to yours - and I was the one who spotted the astronomical creatine level first! 

Hadn't known steroids could affect arthritis but not surprised to learn. Lots of oedema in legs and ankles. Still not properly gone. All best wishes