Level 3 lymph nodes

Hello everyone!

I was diagnosed with grade 3 IDC with DCIS, hr+ her2- late last year.
I had a mastectomy, DIEP recon, and SLB. I was lucky in that I healed well and it was all very managable, I have three young children, and found that I was back to normal life pretty quickly.
Anyway, SLNB showed one positve node, so I then had an ALND, has been slightly uncomfortable :joy: but again I’ve healed pretty well.
I saw my pathology, and there were 3/19 nodes positive. One however was apical, which I think is infraclavicular, level 3. I googled :melting_face:, and it seems that level 3 is significant as it’s part of the top/last of the axillary nodes…has anyone else been in this situation? When I looked at the TNM staging, that apical node involvement seems to throw you into a higher stage, regardless of how many other nodes are involved. This knocked me for six and I was in panic node. I am trying to bring myself back down now and be rational, however I haven’t seen the surgeon yet or had my results appointment. The lovely breast care nurse I spoke to yesterday was reassuring, and told me that the treatment will remain the same, and it’s only 3 nodes, which is true! I am in the middle of a 7 week wait for my results appointment which is a real test mentally. I know I won’t get any real answers until I see the surgeon, but I’m hoping that maybe someone may be able to shed some light based on their own experience.
Thank you xx

Hi. For me, 15/15 were cancerous which was very worrying for me but at least it hasn’t spread. I don’t think it necessarily changes your treatment. For me they said due to how many lymph nodes were involved they’ll offer chemo, radiotherapy and drug treatment to reduce risk of reoccurrence which is high. It’s good only 3 are involved. See what your surgeon recommends as they’ll probably offer more treatment. Good luck. X

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Thank you @rosa , you are right.
15/15 must have been so worrying for you.
I really hope you are doing ok at the moment.
It’s easy to get bogged down in the finer detail, but ultimately the treatment will address what it needs to x

Yes I’m doing ok thanks. I was very worried when they said the risk of recurrence is high and if it comes back it’ll be incurable. However, I am trying to be positive and reading positive stories where women have had the cancer spreading and after their treatment the cancer has been removed. Also I’m thinking if the worse was to happen and it comes back there may be better treatment available. Hopefully in your case the risk is lower but listen to the advice and see what happens. Doctors don’t know how your body will react to treatment so I’ve found reading about statistics of recccurence doesn’t help so staying away from that. X

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Yes absolutely. New treatments are coming along all the time, and so much of the research and stats are before many of them have been in circulation.
You are right to try and stay positive. Just have to allow yourself some time if you dont feel positive too xx

@wrenny hello! Nice to see you here after our chats on the other site. I think my diagnosis is similarish but my nodes are 2/16 and I dont know if they are level 1, 2 or 3 yet. My tumour was invasive and there is dcis too, hence the 3rd op yesterday.

Whatever they say at your results, it will be a plan and tailored to you. They will get you onto oncologist who will get the plan moving. Unfortunately i think we both be getting chemo now; fortunately we might get to chat to each other in person if timings are right!

Worth ringing to see if results can be brought forward…afterall you know the results are available. Perhaps the surgeon’s secretary could reschedule. You could explain that you’ve seen results and are now worried. Are you waiting for margins too?

I’m wide awake post anaesthetic. Might need to go and watch tv downstairs.

Hope someone on here has had same with kevel 3 nodes and can give proper advice. Maybe try on the ask a nurse bit?