Not sure where to start really. My sister was diagnosed with invasive ductal carcinoma last year and has been through chemo & had a double mastectomy shortly after.
The cancer had already spread to her lymph nodes, but the spread was minimal apparently. During the surgery they removed a few and we’ve just found out that the results of what they biopsied isn’t good. 100% of the lymph nodes contained cancer cells and it seems like there was another breast lump we weren’t aware of.
She’s still not been given a stage, and we THINK the next steps are a full body CT scan and some further treatment.
Everyone is really confused at the moment and we really don’t know what’s happening. Can anyone help me wrap my head around this and understand what might be next? I’m guessing it won’t be chemo again as it appears that the cancer was still spreading while she was undergoing treatment.
Hi @sister_rose I’m sorry but I have had a different diagnosis and treatment plan to your sister therefore there’s nothing meaningful I can tell you personally BUT I urge you to have a conversation with one of our nurses. Unfortunately they will not be available now until Monday but if you call them between 9.00-16.00 you will be able to talk through your questions and concerns without being rushed. The number you need is 0808 800 6000. Yes, I had breast cancer but prior to that I cared for two family members who had health challenges so I understand how hard, upsetting, frustrating and bewildering it can be. I hope that you get the information you need to support your sister and I especially hope that she gets the treatment she needs to get through this successfully.
Hiya. I echo that your sister’s breast nurse needs to be talking to you. She is the lynchpin in this and needs to co-ordinate between all the departments. Hopefully you will get some solid answers to your questions next week. It’s hard and unfair for you all to be left suspended in mid air like this, much as I hate to sound critical about the NHS. Wishing you and her well.
Thank you, I’ll give them a call tomorrow. I really hope it’s better news than I’m expecting it to be; I’m very aware that I catastrophise and think everything will be the worst outcome, but I’d rather be pleasantly surprised by good news than the other way around.
Thank you, I’ll see if I can get hold of the nurse, I hope she’s at the appointment tomorrow. My family isn’t good at expressing emotions or communicating so it’s been especially hard to try to understand how everyone’s feeling or to get a good understanding of what’s happening. I don’t live close to my sister so apart from initial appointments I went with her to, I’ve not really been on the front line of receiving info, which I’ve found really hard as someone who likes to have control of situations and find solutions.
I’m really sorry your family is going through this—it’s such a confusing and overwhelming time, especially when the information feels unclear.
From what you’ve described, it sounds like your sister’s team is still trying to get a full picture of how far the cancer may have spread. When lymph nodes come back fully positive, doctors often order more detailed scans (like a CT or PET scan) to check other areas of the body. That’s likely why you’re hearing about a full body scan next—it helps them determine the stage and decide the most effective treatment plan moving forward.
Even if chemo didn’t fully stop the spread before, it doesn’t necessarily mean it won’t be used again. Sometimes they switch to a different type of chemotherapy, or consider other treatments like targeted therapy, hormone therapy (if the cancer is hormone receptor-positive), or immunotherapy depending on her specific diagnosis.
It’s also very normal not to have a stage yet—staging sometimes only becomes clear after surgery results and scans are fully reviewed together.
One thing that really helped me when supporting someone in a similar situation was reading through others’ experiences and trying to understand possible next steps. I came across some helpful general info and shared experiences here: answers—it might give you a bit more context while you wait to hear from the doctors.
Most importantly, don’t hesitate to ask her medical team direct questions, even if they feel basic. Writing them down before appointments can really help when emotions are high.
