Triple Negative Ductile Invasive Breast Cancer, Stage II

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Connan
Connan Member Posts: 2
edited June 2017 in Triple-Negative Breast Cancer

Hello out there,

I have been diagnosed with Triple Negative Ductile Invasive Breast Cancer, Stage II, Lymph node involvement. This will make me a two time cancer survivor. I had kidney cancer in 2015 and my kidney was removed and thankfully, no chemos involved with that. Tests have determined that the now diagnosed breast cancer is not related to the kidney cancer (I just get to be the lucky one with two different cancers). After extensive testing, it has been determined both times that the kidney cancer nor the breast cancer have metastasized to any areas.

I have had the BCRA tests and tested negative. I have undergone 4 treatments of A&C and am now finishing 12 taxol chemos.

I am really having a hard time making a decision to have a unilateral or bilateral mastectomy. The information on TNBC is certainly not encouraging and I don't want to go through this again but am getting mixed information about the possibility of recurrence in the now healthy breast. The Onc says the chance is slight, the Breast Surgeon is taking a more aggressive position. I really struggle with removing a healthy portion of my body and seem to be focusing on being "half normal". I am have a hard justifying based on better looking, no more exams or mammos, etc.

I would be interested in hearing your decisions about unilateral versus bilateral and what information your docs gave you that you found helpful in making this very hard decision.

Thank you.

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  • Jacklin
    Jacklin Member Posts: 162
    edited March 2017

    Hi Connan, first of all welcome to BCO, it's a place that I had hoped I'd never have to be, but here I am.

    Like you I was diagnosed with TNBC and had neoadjuvant chemo. My tumour was very unusual in that, despite being the size of a baseball that was clearly visible, it was not image-able by mammography, MRI or CT. For me, the decision to have a BMX was easier because I knew I would be unable to trust any mammogram/MRI/CT in the future. I grieved the loss of my breasts deeply before surgery, but knew, deep in my heart, that this was right for me. When the post-BMX pathology report came back, there was evidence of cancer in my non-cancerous breast, so for me, a BMX was the right decision and I'm glad I did it. Ultimately, the decision is a very personal one, and each person needs to decide what's right for them. Wishing you courage and strength as you make this difficult decision.

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  • Alex517
    Alex517 Member Posts: 28
    edited March 2017

    I had a lumpectomy first, then chemo and radiation. I found out before radiation that I was BRCA2 but even with complications after my BMX and tram flap reconstruction, I was glad to have gone through radiation. For me, learning about TNBC over several months of initial treatment and having a mutation, deciding to have a bilateral mastectomy 9 months after finishing cancer treatment was a no-brainer. I have three sisters, two of whom also had been treated for cancer, decide for mastectomies the same year we found out we were mutants. It's true your body is different but the trade off for a greater peace of mind has left me with no regret. Good luck with your decision-making

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  • Connan
    Connan Member Posts: 2
    edited March 2017

    Thank you. It's definitely not a club that I voluntarily joined!


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  • DanielleT
    DanielleT Member Posts: 9
    edited May 2017

    hi connan,

    It's now the end of may and I'd love to hear what you decided and why. I am deciding right now after finishing AC + T ..... bilateral scheduled FOR JUNE 19 but seeing RO AND reconstruction guy ( again for more questions) on June 1st and then deciding for sure .....

    I am anxious about recovery, drains, numbness and possible nerve pain but still leaning towards BMX.

    LOVE to hear about this and BMX recovery from you and anyone else on this thread ...


    Happy Memorial Day weekend...

    Danielle


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  • Lavi
    Lavi Member Posts: 3
    edited June 2017

    Hi Alex,

    I have a question. Why waiting 9 months after treatment to have bylateral MX?

    I too had a lumptoctomy, I' in chemo now, after chemo i'm scheduled for radiation, but I want to do bileteral MX as soon as posible. Wondering if radiaton is necessary

    Thoughts from anybody

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  • Desirr77
    Desirr77 Member Posts: 31
    edited June 2017

    Dear Lavi,

    I first had lumpectomy then chemo for a Stage IA trip neg tumour. During chemo I found out that I am a palb2 mutation carrier. I could avoid rads because of no nodes involvement and small tumour size(6mm) but had mastectomy 7 weeks after my last chemo treatment. All went well.

    Best wishes,

    Desiree

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  • Lavi
    Lavi Member Posts: 3
    edited June 2017

    Thank you very much Desiree for your response. Maybe it will be posiblle for me too to go from chemo to double MX. From wat I'm reading here ab TN, it needs to be treated aggresivly


    Lavinia

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  • Debbs74
    Debbs74 Member Posts: 20
    edited June 2017

    I had a lumpectomy but my surgeon went to put the dye in and it stopped, went back to my surgeon that week and he told me he found another tumor he took out that's wht the dye stopped because of the other tumor, had to go in again and get a mastectomy, pathology came back, I had a 2.7cm triple negative and a 1cm her2 tumor no nodes involved. Went to fox chase in Philadelphia to see how to treat, they did recommend ac chemo then taxol herseptin perjeta, they said if I don't do chemo I have a 80% chance it won't come back with chemo 90% chance it won't come back, thats just a 10% difference. Putting that chemical in me does not seem worth it, Rember Robin Roberts of abc news, she got a second cancer from the chemo, you can also develop cancer of the blood heart problems later on in life, what should I do?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    Debbs - I think you have the numbers backwards. With HER2+ cancers, it is a VERY HIGH percentage that does come back if you don't do chemo. Herceptin has made a huge difference in survival rates;

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  • 1strongmama
    1strongmama Member Posts: 1
    edited June 2017

    hi Danelle

    I'm recovering from my BMX on May22, since finding out that in have breast cancer my surgery was always going to be a double mastectomy, for me the thought of a reoccurrence in my healthy breast and going through it all over again was something I did not want to risk. And the thought of more surgeries was not appealing to me.

    I had 4 drains (2on each side) at 10 days I had 2 removed and at 2 weeks the last two removed. To my surprise there is little pain!! However there are several nerves that are very active, but it isn't bad. For me wearing lose clothes feels best. I will wait a few more weeks for things to calm down before I get my prosthetics, if I get them at all.

    I hope this helps.

    XX

    Cind

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  • DanielleT
    DanielleT Member Posts: 9
    edited June 2017

    Cind,

    Thanks and yes that description helps a ton ... and gives me hope and strength to go through it ... I will be having nipple sparing and pec sparing reconstruction with implants at the same time ... probably 4 drains also ...

    I bought a little tie on apron thing to hold the drains ... looks more like a waitress apron to hold a pad and pencil ... we will see how that goes !!!

    Hope you continue to recover well!!


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