Worried about TNBC spreading to unscanned areas

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Hi, I’ve been diagnosed with stage 3 TNBC, 2 tumours in the right breast with 2 underarm lymph nodes also affected. I’m about to finish a 24 week course of chemo (carboplatin and paclitaxel followed by EC) with immunotherapy. I’m having an MRI in a couple of weeks and I’m due to have a mastectomy early November which will determine if I need radiotherapy and all lymph nodes removed depending on the pathology results.

I’m starting to get jittery over the results, even before I’ve had the mastectomy.

I’ve heard that breast cancer can spread to other parts of the body, and when I asked if the MRI will pick up any remaining cancer cells elsewhere in the body, I was told they will only scan the torso for breast cancer, so only this area will be checked.

How would I know if it has or hasn’t spread elsewhere in the body? Surely it would be wise to have a full body scan.

I’m interested to know if any other health boards across the UK do a full body check? I live in South Wales.

I’m also interested to learn from other who have been through it, and if the fear of it ever subsides?

Thank you xxx

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Good morning @mouse701 :two_hearts: … this is something that bothers me immensely in that how can you be told that that cancer is no-where else in your body, if your whole body is not scanned!!! It makes no sense! I also have TNBC and have completed the full neoadjuvant treatment and then recently had a mammoplasty plus sentinel lymph node removal, I’m now awaiting histology results as to what the next steps are … I’m under the United Lincolnshire Hospitals Trust and I know that basically once I have completed the KEYNOTE-522 protocol for TN breast cancer, that’s it until I have a mammogram of which doesn’t reassure me considering that I had a clear mammogram exactly one year before I found the lump! :ribbon:

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Hi @big, I’m sorry for the delayed response and I hope you are ok.

I’m sorry you’re going through this too. It’s quite a hard slog physically and emotionally isn’t it.

I find it bonkers that the whole body isn’t scanned, especially as we have an MRI after chemo anyway.

I spoke with my oncologist about it, who is amazing, and she’s looking into it for me. I don’t have confirmation as to whether I will have a full body scan yet, but I do feel I’m being listened to and understood which helps. I’m in South Wales, under Velindre Cancer Hospital and Llandough hospital, who I must say have been brilliant.

From what I understand from others who have gone through this, it’s a common concern. I just think having a full body scan would give so many of us some peace of mind at the end of treatment. It looks like it’s a standard procedure not to offer it as with breast cancer they just focus on the torso area for the MRI, unless there are symptoms elsewhere in the body.

It’s so weird, but I had my last chemo last week, and it literally hit me on the day that I have cancer and have had chemo.. Almost 6 months in, and it hit me. How weird is that. I’m sure I’m not alone in that. The emotions of going through this are harder than the physical stuff sometimes.

I hope all goes well for you @big xxx

Sending you healing and love :heart::heart::heart: