Hi all
I was diagnosed with ILC+IDC on03/01/2025. The ductal cancer is triple negative. The Lobular cancer is hormone receptor positive and HER2 neg. They are in the same breast, different quadrants. I had a right mastectomy with DIEP reconstruction and sentinel node biopsy on the 05/03/2025. I’m now 3 wks into recovery from that and doing ok. Last week I was told on follow up with breast surgeon that I have margin involvement and 7/7 of lymph nodes have cancer too! Been advised I need further surgery for axillary clearance and to check margins. I asked what stage my cancer was and he said ‘they don’t like to stage the cancer!’? Also they couldn’t tell me if the cancer in lymph nodes was lobular or ductal.
My question is if anyone else has this diagnosis? I cannot find any information online about this and how it’s treated. Also do I need the axillary clearance? Will it have any affect on the treatment i receive? I’ve already been told I’m having chemo and radiotherapy anyway. I am waiting to hear on back from BCN today with the same questions. I know this is a lot but I just need some answers x
Hi @sam2025. It sounds like that news was a big shock and I’m sorry that I don’t know all the answers. I’m sure the nurses will be along to help soon.
I think that quite a lot of people have an axillary clearance after mastectomy or lumpectomy. I had a lumpectomy, then axillary clearance and 2 cavity shaves for margins. After all of that, a mastectomy and diep reconstruction too. If you already know you need chemo and radiotherapy, that is likely to remain. They don’t tend to stage cancers routinely now. The nodes will have contained the triple neg cancer or the hormone positive one. You could ask for that info. It sounds like they’re already throwing the full monty at it, but there are different chemo regimes for triple neg and for hr+ so you might want to ask what they are planning. You could also use the forum search to see if anyone else posted about mixed cancers.
You’re in good hands. Best wishes to you and keep us all posted. X
Hi @sam2025
Sorry you find yourself here and that your operation outcome was not as hoped for.
The axillary clearance will remove lymph nodes in the armpit to assess for cancer spread, prevent spread (get it all out I say!) and to help more with treatment planning.
I had a mastectomy (no recon) and axillary clearance at the same time - nearly 50 of them and 30 something of the blighters had cancer in. So it is best they get them all out and check.
Hope you continue to recover well from your op and good luck with the rest of your treatment.
AnGELa
x
Hi sam2025
Thank you for your post.
It sounds like you were given a lot of information from your doctor last week at your post-surgery results appointment. This understandably is overwhelming and of course leads to the need for answers to all of the many questions you have. Speaking to your breast care nurse and talking through all your questions is the best thing to do as you had planned yesterday.
I wonder if it might be easier to call us and talk this through. We often find we can help people more by speaking to them on the phone. If so call us on 0808 800 6000.
It is important to know that any further surgery will be tailored to your individual situation. It is difficult for us to say what specific surgery will follow. This will depend on recommendations which are agreed by the multidisciplinary team. The team will take into consideration the pathology of you breast cancers and disease in the lymph nodes in order to ensure you have the best treatment for you as @Gelbel suggested. If anything is not clear to you do ask the breast care nurse again or ask to speak to your surgeon again.
You mention asking about the stage of your cancer. There is information in the link but as @bluesatsuma says the doctors don’t always stage the cancers.
As you are looking for someone who has experienced a similar situation you could use our forum to search to see if there are others with mixed cancers. It is often reassuring to talk or message people who have experienced a similar situation.
It sounds like you would like to talk to someone who has had a similar experience this can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
Coping emotionally understandably difficult at times like this you may find the information here helpful.
As mentioned previously do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
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Best wishes
Helen
Breast Care Nurse
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