Hello,
I recently completed 6 rounds of chemotherapy (docetaxel and carboplatin) + herceptin and perjeta for HER2+ bc. My 39mm tumour has shrunk to 17mm in that time. I’ve been told I have had an incomplete pathological response. I’ve not had surgery yet. Anyone out there in, or previously been in, a similar situation? Most people on here seem to have had pCR. I’m feeling very anxious about what this means for my outcome/prognosis.
Thanks for reading.
Margot
Hi Margot
It must feel pretty scary right now with your imagination in overdrive. When you are told these things, usually you aren’t in the best place to ask the necessary questions. However, you can ring the nurses’ helpline here (they offer a wonderful service) but they are likely to suggest, as they did to me, that you ring your own hospital’s breast care nurses. They may not be able to give you the answer but they will be able to get the right person to contact you quickly.
The important thing, however, is that you need to decide how much you want to know. Once you’ve asked a question, you cant change the answer because you don’t like it. After my mastectomy and FAC, the consultant told me he’d been unable to secure clear margins. I felt so crap, I didn’t even ask what that meant. I didn’t think about it again and, I think that, for me, that was for the best.
I got through all my treatments and decided that I now wanted to know what exactly had been wrong with me. The BCN brought up all my data on screen and went through what it all meant. That night, it registered that she’d omitted one score - my NPI score - so….I Googled it. What a disaster that was. I was terrified. It’s not good seeing “poor prognosis” staring at you baldly. Fortunately the BCN quickly put it into context with a fantastic email I’ve often passed on to others. In my particular case, it was data being passed from breast surgeon to oncologist to inform treatment and was no longer relevant as treatment had been successful.
Ironically, I did develop Secondary Breast Cancer, not because of lack of clear margins but because I had two tumours, one triple negative, and those cells are determined little bu***rs, evading almost everything that’s thrown at them. So I live with this condition and endless chemotherapy (tablets so far, no hair loss, no energy!) and Belinda’s wise words which, summarised by me are :
There are two camps: one where you live in fear that it IS going to come back even though you are cured, and one where you know you are cured and believe it is NOT going to come back. You can choose to live in either camp or you can move from camp to camp as the mood takes you, even create a third camp: it MAY come back but I’ll worry about that when I have to. The important thing is that you enjoy the camping. It may sound a bit simplistic, considering the depths of our fears but it really does make sense when put into practice.
I’m afraid what “most people” seem to experience is no guarantee of your own experience. You must clarify it with your team and then start camping - but believe me, the first camp is like setting the tent up in the field where the bull is - asking for trouble. Move on….And do take care of yourself. I hope you get answers that satisfy you.
Jan x