Triple Negative Breast Cancer Genetic query (Lumpectomy vs Masectomy)

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Hi, I was diagnosed with Grade 1 TNBC and had one Lymph node that tested positive.

I am more than half way through chemotherapy and I am also having immunotherapy. I have been told that I can have a lumpectomy and a number of lymph nodes removed or opt for a mastectomy.

Since my diagnosis my Mum checked more frequently and she unfortunately found a lump and has now also been diagnosed with TNBC and she is undergoing treatment.

I had the genetic testing which came back negative.

I would like to know if any other people on this group have been diagnosed with TNBC and have a close relative (mother/daughter) who has also been diagnosed with TNBC too and the genetic test was negative?

My worry is that we could have a gene not yet detected and therefore I would be making the wrong decision not to have a mastectomy?

If anyone has been in a similar position please can you let me know what you decided to have (mastectomy or lumpectomy) and why you made that choice? Thanks

  • Hi Sara,

    Sorry to hear that you and your mum are both going through such a difficult time. In a strange way, I imagine it's nice you can both relate to what you are each going to but also such a huge shock.

    I had TNBC in 2021, and my maternal aunt also had it in 2011. I had the genetics test and came back with a BRCA1 mutation. Subsequently my aunt and my parents did the test and we were all convinced it originated from my mums side of the family (another of my mums sisters also had had bc) but to everyone's surprise (and relief) there was no link on my mums side of the family and my mutation was in fact inherited from my paternal side (with no history of cancer!). I know it's not the same as mother/daughter, but it's a similar-ish scenario.

    At the time when I first found out about my cancer, I had a pre-chemo lumpectomy and post-chemo node removal and all was fine. I found out about my genetic mutation at the very end of my treatment, so it wasn't until 2023 that I opted for a preventative double mastectomy. 

    I'm not sure I really help you to make a decision but I understand it's a really hard to decision to make. You are deep in the grey zone with many 'what ifs' to think about. There is no perfect solution as sadly there is no crystal ball to predict the future, just what you feel is the choice that will bring you the most peace.

    Take care and wishing you and your mum the best of luck with your remaining treatment x

  • Thank you for your kind words and sharing your experience. I really appreciate this :)

  • Hi ...

    I am on my last cycle of chemo/immunotherapy next week and then surgery on Friday 22nd November for TNBC.

    I was always on the assumption that I was having a double mastectomy as cancer was found in both my breasts..... Different types but both negative.

    Apparently though, due to a good partial response to chemotherapy shrinking the tumors and a lengthy and in-depth discussion with my breast surgeon, I have listened to the outcomes and agreed to a double lumpectomy.... Plus hopefully one node removal with clear margins..... Followed with radiotherapy.

    As I understand,  having a mastectomy will not prevent cancer coming back, as it will return either in your chest wall or somewhere else,  should that be the case.

    All I can do is listen to the professionals and pray that I get a life back for some years to come. I am 64 years old and before the complete and utter shock of being told I had BC back in February this year, I was fit and healthy.

    I wish you and everyone else in this unwanted journey of ours, all the very best and am here if needed.

    Allison xx