Prophylactic Mastectomy ended up triple negative

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Froggiebee11
Froggiebee11 Member Posts: 6
edited July 2017 in Just Diagnosed


Since I am new to this not sure where to start. I am 32 and had a prophylactic mastectomy with reconstruction on 6/28/17 due to BRCA 2 positive. Went in for my 1 week follow up with my breast surgeon and was told they found a 4mm lymph node that ended up being triple negative breast cancer. I will be going back in to have a second surgery to check the axillary lymph nodes since these were not checked previously. I met with the oncologist on 7/10/17 and was told due to the cancer being triple negative we need to be aggressive in treating this and I will be having a port put in so I can start 6 month of chemo. Still might be in shock not sure how I really feel about all of this except I am lucky but not lucky. I had my 6 month mammogram and ultrasound in April and did not detect the cancer than and who knows how much worse it could be if I waited to have surgery and if anything would have showed up on my October mammogram. Anyone else go in for a prophylactic mastectomy to avoid getting cancer and come out with tripple negative breast cancer

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2017

    Froggiebee-

    We're so sorry you find yourself here, but we're glad you've joined us, and hope you find these boards to be a source of support. What a shock that must've been for you! You may find some helpful information in our triple negative forum, and other members to connect with: https://community.breastcancer.org/forum/72.

    We hope you're healing well from your mastectomy. We know the days and weeks following a diagnosis are difficult and scary, but we're all here for you!

    The Mods

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2017

    I did, but it wasn't triple negative. Regardless it is a terrible shock. Still have trouble with the fact that the 1.1 cm bugger was missed over and over and over with high risk screening. I'm so sorry for your nasty surprise. Yeah we're some of the luckiest unlucky people around.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited July 2017

    I too was surprised with a 9mm tumor in my "clean" breast upon BMX. I had multiole tests prior that showed nothing. I toggle between being angry that I have cancer in both breasts and happiness that I made the right call in the BMX.

    I'm sorry you have to go through this. Your decision to have the genetic testing and surgery was a very good one. If you can, find any comfort in knowing you did the right thing and were being proactive. It still sucks that you did everything you could to prevent this and still have to deal with it. It is shocking and unfair. I hope your further surgery and treatments go well.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2017

    Be sure you get in the "line" for all the support your medical community has in place. I was totally missed by the "brochure" peeps, the nurse navigator, the support group info since my dx was not "conventional".

    I'm sure you know about F.O.R.C.E. but if not here is the link http://www.facingourrisk.org/index.php

    Finally my dear DIL's family is riddled with the BRCA1 mutation. Her mom had triple negative breast cancer in her mid thirties. She said it was as big as a peach pit and she found it herself. She is twenty years out now, has seen her kids grow up and we share three little granddaughters.

    Take things step by step. Anti-anxiety meds helped me a lot back then. Sending you a big hug.

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  • NotHerToo
    NotHerToo Member Posts: 58
    edited July 2017

    I had a similar experience...I have a strong family history but negative for BRCA (mother and sister dx in 40's, both passed). When DCIS was found, my surgeon recommended lumpectomy, strongly discouraging bilateral mx. Dr. said I was over-reacting and that is now a trend when women are "allowed" to make their own treatment decisions. I switched doctors. I had BMX with reconstruction. Final path showed a tumor in an entirely different area not picked up by mammogram or ultrasound...8mm HER 2 + , ER/PR-.. So I too feel lucky/not lucky---really more lucky than not. I went in thinking surgery would ease my fears, but found myself in chemo and herceptin for a year. Every article I read discouraging women from "over-reacting" from over-treatment makes me want to scream. I fear we are living in times when saving money will cost womens lives and we need to be our own best advocates. Triple negative is scary (OK it's all scary) so aggressive treatment is important. My friend had stage III triple negative and is my role model. She had a rough 6 months, but is nearly 6 years out and NED, and living her life, happy to be watching her now 8 year old growing up.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2017

    My sister recently had a prophylactic double mastectomy, although she had a previous lumpectomy and had finished chemo a year earlier.  Due to genetic testing, it was advised that she have the double mastectomy. 

    I accompanied her to appointment with breast surgeon.  Her breast surgeon told us she wanted her to have a breast MRI before surgery because lately, she had encountered two patients who thought they were clear, and ended up having BC.  Then she has to go back in and check nodes etc.  She did not want my sister to go through that so thus the breast mri.

    Sending all my best to you - what a shock it all must have been!

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  • Froggiebee11
    Froggiebee11 Member Posts: 6
    edited July 2017

    Thank you everyone for sharing your stories with me. Latest news is that I will be going in on 7/18 to check my lymph nodes. Getting ready to start my long journey, however I am ready to kick its butt!

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2017

    I am so very sorry you are here. 32...sucks having to deal with this crap so early and thinking you were being pro-active. My heart aches reading this.

    My cancer was missed by ultrasound and mammogram and only picked up with an MRI, which thankfully, they ordered because the machine was new (and am sure it would help pay for it). Even with the MRI, "they" kept telling me it was not going to be cancer. It was not going to be the size it was....blah, blah....

    I hope your journey becomes easier. Welcome to the boards; the club no one wants to join.


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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Agree, so sorry you have joined this club. But at least you found a great place for support and understanding.

    Wallycat and I have very similar specs! ILC 1.8ers -- I was diagnosed at 49 as well. Mine was missed on years of diagnostic mammos (done because of family history and dense, though very small, breasts). I believe US would have also missed had I not pointed out the small lump. And ILC does not usually present with a lump I believe. If I was not tiny (AA cup), I would have never felt it.

    Ask any questions. No matter how small. Someone here can answer. And breathe. It was hard for me to do that at first -- but it's all getting better. ;)

    Hugs to you!!!

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  • Froggiebee11
    Froggiebee11 Member Posts: 6
    edited July 2017

    well today I had sential biopsy and they only ended up taking out two lymph nodes, feeling prettt good as of right now just looking like a smurf due to the blue dye. Hopefully will have results by Friday or Monday . I am scheduled for my port placement on Thursday. Finally had my first breakdown/freak out the other day but feeling much better today after talking to my breast surgeon and a few friends that went through chemo recently. Other than that no news is good news. Prayers and hugs ❤️

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    just a thought for yoru consideration since you are only 32 years old --consider asking your doctors about pre chemotherapy fertility preservation if preserving your fertility is of importance to you . Take care---you will do well!

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  • Froggiebee11
    Froggiebee11 Member Posts: 6
    edited July 2017

    it is and I have been thinking about it however I am still on the fence. Still no suitable men in the picture and I'm not getting any younger. It's either I save them or I go in for the preventive hysterectomy once I get through my current treatment

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    froggiebee --even if no suitable men in the picture, you can freezeeggs only. ( for women with partners, they can freeze embryos , for women without partners they freeze eggs. ) insurance generally covers this and livestrong has a program to help you with out of pocket costs. You can do this in the time period between surgery and chemo .

    Also can ask your doctors for a genetics consult due to your young age --that information can help inform your decisions about the extent of your surgeries

    Take care of yourself

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  • Froggiebee11
    Froggiebee11 Member Posts: 6
    edited July 2017

    thank you so much, I just talked to my breast surgeon and we are going to talk about it on my post op ap

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    It will all work out for you!

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