triple negative stage 2 had bilateral masectomy

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imstillstandin
imstillstandin Member Posts: 7
edited June 2014 in Triple-Negative Breast Cancer

and now on ACT .. BUT INDIVIDUALLY SO IT WILL BE 6 MONTHS.. I JUST DONT WANT IT BACK.. AND WONDER HOW IT CHANGES THE PROGNOSIS IF IT COMES BACK.. I AM 33 AND HAVE LOST BOTH PARENTS (MOM BREAST CANCER BUT BACK THEN THE PROTOCAL WAS DIFFERENT SHE HAD NO CHEMO.. AND 10 YRS LATER IT CAME BACK!! MY ONCOLOGIST IS PRETTY OPTIMISITIC.. BUT MY FIRST SCAN BEFORE THE SURGERY ALTHOUGH ALL CLEAN BONE ETC.. 2 LESIONS IN LUNG VERY SMALL WHICH EVERYONE THINKS IS "SCAR TISSUE" ESP AS I HAD NO LYMPH NODE INVOLVMENT BUT I AM AWARE OF IT GOING THROUGH BLOOD.. JUST DONT KNOW NORMAL COURSE DOES IT GO THERE USUALLY (LUNG) ?? I HAVE FIRST SCAN SINCE THAT BASELINE NEXT WED..and wondering if anyone else has had this? similar story.. my heart goes out to everyone here.. i am glad to have found this board

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  • imstillstandin
    imstillstandin Member Posts: 7
    edited September 2007

    sorry if my previous msg was all over the place.. guess thats the state i am in right now!! anyway  i am 33 triple negative Stage 2 had a bilateral masectomy and having chemo now... does anyone know what the "prognosis is?" for this... i feel i am to young to die.. i am scared and can really use some hopeful encouraging words thanks so much

    carrie from ny

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2007

    Hi imstill,

    None of us know are prognosis...As you will find out on this site that we can react to treatment differently.  Yes bc does go to lung often.  But don't panic yet. I to have scare tissue in my lungs and many others do too. I have known many with lung mets and responded very well with Abraxane & Carboplatinum.  Triple Neg seems to like lungs & liver.  What chemo are they giving you?  May your treatment go gentle with great results.

    Living in hope.

    Trip neg bil mast 7 chemo 24 tx's

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  • mogindler
    mogindler Member Posts: 3
    edited September 2007

    I'm so glad I found this triple neg group.  I was diagnosed in 02/06 with Stage I, triple negative.  9 on the Bloom Richardson scale (the most aggressive).  I had a lumpectomy, 4 dose dense AC treatments and 4 dose dense T treatments (Taxol), also 37 rads.  I was doing great, but I found a lump in the same breast a couple of weeks ago and have been diagnosed again with a local recurrence.  We're hoping it's local.  The CT scan was normal and we're getting a bone scan.  I am having a bilateral mastectomy and then most likely 6 rounds og Taxitere.  Have any triple negs had a recurrence?  What was the protocol?  I am 42 and really scared this time.

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  • twink
    twink Member Posts: 1,574
    edited September 2007

    Hi girls.  I too was diagnosed with triple negative IDC (3.5 cm) -- Stage IIa.  Quick background:  Dx'd 1/18/07, 4 DD AC followed by 4 DD Taxotere (ended 5/24), bilateral mastectomy with immediate reconstruction (silicone implants with Alloderm), SNB negative intraoperatively; 3 nodes came back positive for micro mets so axillary node dissection on July 6th.  All 14 nodes were negative.  I started more chemo (Carboplatin this time), will finish on October 17th.  Finishing up with radiation therapy (20 Tx) before the end of the year.   I don't plan on having to go through this again.

    Prognosis... my doctors have repeatedly told me that, because of my sequence of treatment, they can't give me a solid statistic because they don't have good data.  Whatever....  You can take a look here, if you wish: http://www.imaginis.com/breasthealth/statistics2.asp#5

    Stats only make sense for the entire sample, not for an individual.  You're either 100% okay or you're not.  Don't get hung up on the numbers lest they start to control how you live.

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  • sharebear
    sharebear Member Posts: 332
    edited September 2007

    I was first diagnosed at age 32, lumpectomy, 28 neg. nodes removed, radiation, chemo 5FU. 12 years later, other breast, SNB, Bi-lateral mastectomy, nodes neg., tram-flap recon., 4 dd of AC and 12 wkly taxotere completed. I am 44 now. They also found something on my lungs after the first found when I was 32. The drs. think it might have been scar tissue as they clipped part of  my lung with radiation. It continued to show on chest x-rays for the first year and then miraculously disappeared and never came back. Drs. don't know where it went, don't care, it's just gone.

    I don't think any of us ever want to think about going through this again. Next week I will be scheduling my first scans (CT and bone). I'm also have some tweaking done to my reconstruction. Having my nipples done and the fat pad removed between my ribs to give my small B cup better projection. Right now my upper abs are sticking out farther than my boobs. Then I will be having CT scan, bone scan and chest x-ray every 3 months for the next 3 years and the dr. said we'll see after that.

    Welcome to the new norm!

    Sharon

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  • yowyow
    yowyow Member Posts: 69
    edited September 2007

    Another one here with 5mm lung nodule - "scaring"

    Dx may 06 after 2 ops with margins not clear had bilateral mastectomy - 1.4cm IDC, 5cm DCIS 2+ nodes -  My scans at dx time showed 5mm lung nodule and 5mm liver (most likely cyst)

    Did 6 x FEC chemo and had more CT's 4 months after tx finished

    lung nodule had not changed - so classed as scarring

    liver cyst same - unchanged.

    so Yes alot of us seem to have these "scarring" things

    I will be having CT's in a few weeks (9 months after the last ones)

    to follow up on these "things"

    So obviously hoping for the same results - but always

    soooo hard not to worry.

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  • imstillstandin
    imstillstandin Member Posts: 7
    edited September 2007

    hi everyone my ct skan three mths ago showed to "nodules" on left lung.. One 5 mm and the other 6 mm.. as i said in above post, i had bilateral masectomy and now in middle of chemo ACT... (today was 5th.. ) also had follow up scan on Lung "nodules" which showed one shrank by i think a cm but one showed up on right side.. dr said to him CT looks "fine" like scarring but i need follow up in 3 mths.. during my breast surgery all nodes came back as negative.. i am freaking out about the lung.. can scars just show up? shrink? is this normal? he said too small to biopsy it.. i think it might change my stage ? if it has met to lungs...dr wanted to look at original slides of ct skan to see if maybe the nodule was on the right side originally but wasnt detected as i think its 2mm.. IF it was/is cancer would it have grown from 3 mths ago instead of one shrinking? does anyone have  any history/info on this i am FREAKING out ?

    thanks

    Carrie, 33 triple negative

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  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited October 2007

    Carrie,

    Before I say anything.....I just want to make sure you are back on this site since the 27th of Sep. I hope with all my soul that you are.

    Traci

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  • imstillstandin
    imstillstandin Member Posts: 7
    edited November 2007

    traci

    i am back on this board i almost had a nervous breakdown regarding the nodules in the lung... two remained the same ... one ruled out def as scar and another"not appreciated in earlier scan"??? whatever that means..

    i had a bilateral masectomy with all lymphnodes clean... but i know it can travel through blood...i am only 33 and have 3 more chemo to go.. i did ACT but individually..i have gained  a ton of wt and cant think about anything except... "what is on my lungs" and if it god forbid is cancer how long do i have? does anyone have similar situation??? please let me know

    thanks carrie

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