How to know if I have a recurrence?

Hi Lalmcl 

I was diagnosed with Stage 1 Grade 3 TNBC in April 2022. My treatment was a lumpectomy followed by chemotherapy and then radiotherapy. This had all finished by mid-January 2023.

I now have a annual mammogram every April, which started in April 2023, and this will continue for 5 years. I also see my oncologist once a year in October and he physically checks me as well as asking how I am as I have 6 monthly Zometa infusions to help prevent recurrence. The reason I see him in October is because this means I'm being checked every 6 months, once by mammogram and once by him. 

Thanks latchbrook - that’s really interesting. Sounds like a much more proactive and reassuring approach. I think I’ll probably ask to speak to my consultant again about my concerns and see what he has to say

I think the question to ask is what is their degree of confidence that it hasn’t already spread. If it isn’t 100%, why aren’t they giving you a scan?

I had a supposed early stage but grade 3 TNBC treated with a WLE followed by EC and Paclitaxel. No lymph node involvement but I did have vascular invasion at the tumour site. I had a scan for other reasons half way through the chemo. Incidental finding of a secondary deposit in my liver. They wouldn’t have scanned me, and I wouldn’t have known about it until it was far, far too late. It left my consultant wondering if they should change their policy to scan high risk cancers. 

I am seriously considering having private scans if my consultant continues with this policy of no scans and placing onus on the patient. My centre does not do node clearance either on the basis that radiotherapy and Capecitabine are more effective and node clearance would delay starting them. So I have no way of knowing if other nodes are affected in addition to the two already identified. Nor am I comfortable with self assessing - having had a bilateral mastectomy without reconstruction, my chest area is already a mixture of scars, lumps and bumps and trying to identify what is normal and what is not feels like a huge responsibility.

Your experience is very sobering- I am glad the issue with your liver was identified but concerning that it was an incidental finding. It all seems so hit and miss doesn’t it? I think I need to go back to my consultant and be more vocal about my concerns. I’ll keep you posted 

Hi. I was diagnosed with stage 1 grade 3 TNBC in March 2023. I had a bilateral mastectomy as well. With regards to the lumps and bumps checking, I videoed myself carrying out a check, talking and describing what I was feeling and seeing at the time. That's given me something to compare to. 

I have had a CT scan once afterwards because I had a pain in my groin. Thankfully it was nothing. You just have to keep going back with everything but that is what they told me to do. 

Thank you Catzees - that is such a good idea. Definitely going to try this. 

It's common for follow-up care after TNBC (Triple Negative Breast Cancer) treatment to rely on patients being vigilant for signs of recurrence, such as new lumps, bumps, or skin changes. Different cancer centers may have varying policies, but the general approach often involves the patient actively monitoring for symptoms. If you're concerned, consider discussing your anxiety with your medical team; they may offer additional support or checks based on your specific case. Regular self-exams and promptly reporting any changes can help in early detection.