Just Diagnosed Triple Negative Invasive Ductal

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neeciek
neeciek Member Posts: 5
edited September 2014 in Triple-Negative Breast Cancer

Hello Everyone- I was just diagnosed 2 days ago with Stage 1, Grade 3 Invasive ductal carcinoma. As if that wasn't bad enough, today I was told that I am Triple Negative. I am so frightened and I don't feel that I am getting good answers about what surgery to have. They are saying all I need is lumpectomy but I am leaning towards bilteral mastectomy. It seems that studies show that there is a tiny better survival rate with the lumpectomy but my gut tells me to just take them both off. I will fill in my particulars later (I see many of yours at the bottom and that is most helpful. Oh but I could use some encouraging words. And your experiences especially if you are Triple Negative. Thank you

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2014

    Hi neeciek, and welcome to Breastcancer.org. We're sorry you have to be here... but glad you found us! You'll find lots of support and knowledge from wonderful and experienced women here. 

    In the main BC.org site you can also read and learn about Triple-Negative Breast Cancer treatments options, what to expect, etc. You may also want to take a look at the Breast Cancer 101 section, designed to help you sort through all of the information on our site to find what is more relevant to you right now, just diagnosed.

    We hope this helps,

    The Mods

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  • KSteve
    KSteve Member Posts: 486
    edited August 2014


    Neeciek - I just left you a message on the long term survivors thread so I won't repeat myself too much.  BUT I did want to make sure that you join us on the Calling all TNS thread.  Lots of wonderful women with the same diagnosis to support you there.  Also, just want you to know that I'm approaching my 4 year cancerversary and am doing absolutely great.  I know right now it is overwhelming.  Once you get a treatment plan and get started, you will feel better.  This is truly the hardest part in my opinion.  Please know we're here for you and will be happy to answer any questions you may have along the way.  You can do this!  Just take it one day at a time.

    Hugs,

    Kathy

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  • placid44
    placid44 Member Posts: 497
    edited August 2014

    Neeciek,

    Sorry for your news. Only you can make the decision. I will say I had a BMX plus radiation. Lumpectomy + radiation is equal to or possible slightly better than mastectomy alone, survival-wise, but if you add radiation to mastectomy (pretty unusual to do so) that slightly reduces the recurrence risk.

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  • Cut1epie
    Cut1epie Member Posts: 12
    edited August 2014

    Hello:  I was just diagnosed two weeks ago and I'm devastated.  I can't stop crying, i'm scared and I feel so alone.  I meet with my oncologist Tuesday.  I'm at stage 2 grade 3 triple negative.  I have a lot of family and friends supporting me but I feel so alone.

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  • Kellya
    Kellya Member Posts: 164
    edited August 2014

    I'm triple negative too and I start chemo tomorrow.  Had a lumpectomy and was told that along with chemo and radiation is good.  Don't google TN!  Stay on this site, join the TN board, which I need to get to!  Stay strong.  It is very overwhelming in the limbo state before anything starts but I will tell you, these boards are a wealth of good information.

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  • Cut1epie
    Cut1epie Member Posts: 12
    edited August 2014

    Thank you for responding because I don't know how to make it from one day to the other.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2014

    Welcome to the BCO forums Cut1epie, glad you found us, but sorry you needed to.

    The
    waiting, most will agree, is worse than the tests, so we sympathize. There
    doesn't seem to be much other than keeping busy, to help decrease the stress.
    People here have been through it too, so sisters will be willing to offer
    advice. Our thoughts are with you.

    You may find the Triple Negative Topics of interest, have a look.

    Our best to you and to Kellya for your treatment next week.

    The Mods

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  • Cut1epie
    Cut1epie Member Posts: 12
    edited August 2014

    Please let me know how chemo go for you today. I will be thinking of you.

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  • eileenpg
    eileenpg Member Posts: 467
    edited August 2014

    I was diagnosed with triple negative 6 mm in June. I have since had a lumpectomy. All nodes clean. Stage 1a.  Grade 3. My oncologist recommended chemo and I live in the south in the winter. The oncologist here recommended chemo. Both are in same agreement of teatment. After chemo course will do radiation.  Genetic testing comes in 3 weeks. If positive more surgery after all treatments.  Hope this helps the person with the 4 mm tumor.

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  • placid44
    placid44 Member Posts: 497
    edited August 2014

    Cut1pie, Kellya,

    I'm two years post-diagnosis with triple negative, grade 3, stage 2b. I'm doing ok so far. Chemo and surgery were tough, but doable. I didn't have trouble with radiation...just had to coordinate it w/ reconstruction. 

    You will feel better when you have a team in place, and a treatment plan. Where you are now is the worst point in the whole process.

    Yes, please do stop by the "Calling all TNs" thread. 

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  • placid44
    placid44 Member Posts: 497
    edited August 2014

    Or Kellya, looks like you have a team since you are starting chemo. I was glad to get started.

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  • missrachel1
    missrachel1 Member Posts: 15
    edited August 2014

    Hello,

    You have a lot to process at this time. Gather as much information as you can and the decision will become clear when it is the right one for you. I just celebrated my three year milestone. It can be so overwhelming those first few months but when your ready to put your plan in motion you  will begin to feel in more control again and empowered.  And though it does not seem like it now a sense of normalcy does return and you will be back to you again. I had a lumpectomy and radiation only. Radiation was a breeze for me. In fact I was a little sad to end. Everyone was so great and it only took up about 20 minutes of my day. I made the decision not to have chemo and to try some alternative methods to strengthen my immune system, so far so good. I probably look and feel the best I have in 20 years. It took a cancer diagnosis to whip me back into shape.

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  • Aksnowbird
    Aksnowbird Member Posts: 6
    edited August 2014

    I'm sorry you are on this journey. Fear and crying is normal. To top it all off triple negative is one that is aggressive and challenging. I was diagnosed with triple negative in June. I too cried and cried. But after so many tests ultrasounds, biopsy, Pet Scan, surgery to have a port and now finishing up dental work I will start chemo on sept 17th. I have cried over losing my hair too. But went and got some scarves and hats and said I'll be a stylin grandma. I'm 56 stage 2B  2.5 cm tumor in breast with lymph node involvement. I will have 6 months of chemo then surgery then possibly radiation. So much info your head spins. But truly do some meditation laugh start a journal and have a plan to fight and win. We are in this together. You will get through it and win. Not what we wanted in life but now we have it and have to fight. Please remember your not alone. Sending hugs and prayers. Carol

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2014

    Hi Aksnowbird, welcome to BCO forums.Glad you found us but sorry for the reason.

    We hope that you get plenty of support from this forum, as you've started by 'paying it forward' by supporting others.

    All the best for your chemo, you're not alone either, and keep us all informed of progress.

    The Mods

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  • LoriGirlTexas
    LoriGirlTexas Member Posts: 7
    edited August 2014

    Hi...I feel your anxiety. I just got told today I have Stage 2 Breast Cancer, Grade 3 tumor, and I'm triple negative. Suggested to me: 6 months of chemo then surgery. This from MD Anderson! Chemotherapy is the last thing i wanted to hear let alone 24 weeks of it. I still am going to have a CAT scan for what I really don't know. Instinctively, I think they will find the cancer is more wide spread. I am not ling for this world, I think. I feel awful for my sons.

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  • Gigi_of2
    Gigi_of2 Member Posts: 7
    edited August 2014

    Hi…….I just got diagnosed August 14.  I still don't know if I'm HER2 neg yet, the results weren't back when I went back for post-op visit.  I found a pea size lump in my left breast in Jan 14 which grew to over 5cm by Aug.  I kept going to the dr. & ended up with 4 mammograms & 2 ultrasounds (no lump noted on any results); the dr kept telling me it wasn't cancer, I had nothing to worry about;  my mom asked for a needle biopsy in June & the results were neg.  I requested a lumpectomy & the day of surgery the dr was still adamant it wasn't cancer, saying "it doesn't feel like cancer & the lump moves".  Aug 21, dr tells me they really don't know what type of cancer I have & labeled it "invasive mammary cancer".  I haven't been staged, no lymph node biopsied, all I do know for sure is I'm going to have to take chemo.  I have had genetic testing done, CXR was neg, bone scan was neg.  I had a breast MRI last week, this week I will have a CT scan & MUGA. I googled TNC & that info put me in the ground by Christmas.  I have faith & trust in God for healing, but I'm scared of the unknown course of treatments as nothing has been confirmed.  

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  • 1StrongAngel
    1StrongAngel Member Posts: 6
    edited September 2014


    Hi Neeciek I was also diagnosed with Triple negative invasive ductal carcinoma. I just started my treatments on 8/26/14. My treatment plan will be chemo first (adriamycin, cytoxan, taxol) and surgery afterwards. My docs are looking at bilateral mastectomy because of the high recurrence risk and also my genetic history. I'm only 25 and my mom was 29 when she had BC. She's 54 now and still alive and well :-). But anyway, my docs have ordered me to do the genetic test to see if I'm carrying the brca gene. If I am then I'll definetly be getting a bilateral mastectomy and saline implants.

    Good luck on your journey :-)

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  • Tobycc
    Tobycc Member Posts: 789
    edited September 2014

    I got results today and am TN. I don't think I will google it! Please stay in touch

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  • Gigi_of2
    Gigi_of2 Member Posts: 7
    edited September 2014

    don't google. Just stay in the discussion group. There is an awful lot of success stories in here. Good luck & praying for ya 

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  • emmabear
    emmabear Member Posts: 1
    edited September 2014

    I was just diagnosed July 2014 with bilateral triple negative BC - I am 26 years old. I just wanted to let you know I have finished my first 2 chemo treatments (Taxotere and Carboplatin every 3 weeks/dose dense) and my tumors are already gone... I barely have had ANY side effects from the chemo. I still have 4 chemos ahead of me followed by a double mastectomy but I can already see the light at the end of the tunnel Don't read anything on the internet and stay as positive as can be :) My onco confirmed that this is treatable and CURABLE! xx

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  • Tobycc
    Tobycc Member Posts: 789
    edited September 2014

    Emma, how is chemo going? I start in two weeks

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  • redheeledwomen
    redheeledwomen Member Posts: 97
    edited September 2014

    Hi All, 

    I was diagnosed with TNBC in May 2014.  I was given all my surgery options.  I only had a tumor in the left breast but didn't want to take the chance of one day hearing I have cancer in my right breast so, I decided BMX was the best option for me since TN invasive ductal carcinoma is an aggressive cancer.  I also was advised to undergo 4 chemo txs of TC (TC only due to my age; 40).  I was shocked that I had to do chemo but, decided it was for the best.  My last chemo treatment will be on 9/23.  Then I will go through a protocol with my Naturopath (provided by the Cancer Center) to detox.  And in November my exchange surgery (breast implants).

    I suggest staying off of google and coming hear or talking to mentors or the professionals (ONC, MO etc.) about TNBC.  There are many survivors out there (I've read their post on other threads) so you can survive this!

    Best of luck to all.

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  • Luah
    Luah Member Posts: 1,541
    edited September 2014

    Sorry for jumping in, but regarding BMx, I think it's important for women to realize that while chances of a recurrence are very slim, they are not eliminated. As Johns Hopkins notes here: there is still a need to remain vigilant given that some small portion of breast tissue remains. http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/survivor_care/myths.html

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  • Tobycc
    Tobycc Member Posts: 789
    edited September 2014

    red heel.....how was chemo for you ?  I am starting same regimen in ten days

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  • redheeledwomen
    redheeledwomen Member Posts: 97
    edited September 2014


    Tobycc- The first two chemo txs weren't too bad the third one was awful!!  I had a lot of SE's due to the chemo is cumulative.  My ONC warned me that this might happen and that my third tx might be the worst.  The SE's last about 9 days.  Everyone is different.  I read some ladies had no symptoms and others have horrible SE's from day one.  Just listen to the DOC and take all prescribed or OTC meds as recommended.  You might just breeze right through it.

    I will recommend L glutamine (100%) powder for neuropathy.  This was a life saver that my Naturopath (who works with the Cancer Center) recommended.  I was advised to take it as soon as I felt any tingle, warming or numbness in my fingers or toes.  And as soon as I did, I mixed in with water (I recommend mixing it with juice) and drank as much as I could.  I worked like a miracle!!  Several other women on the bco threads recommend it.  Neuropathy could diminish your quality of life if untreated.  Some will tell you that it goes away once chemo is over.  I decided not to take the risk and am glad I didn't. 

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  • Tobycc
    Tobycc Member Posts: 789
    edited September 2014

    thanks Redheel!  Added it to my ever growing list of things to get. So so grateful to all of you

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  • Ly5486
    Ly5486 Member Posts: 5
    edited September 2014

    I am newly diagnosed and have my surgeon but haven't had appointment with oncologist yet. I want to know what SEs are that we're mentioned above. My journey is just beginning 

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    Hi Ly5484, and welcome to Breastcancer.org. We're sorry you have to be here... but glad you found us! You'll find find lots of support and knowledge from wonderful and experienced women here.

    In the main BC.org site you can also read and learn about Treatment & Side Effects , we hope this helps clarify things.

    The more information and questions (write them down to taker to Oncologist) you have, the better you will be able to make informed decisions regarding your treatment plan.

    We wish all of you all the best in your journeys.

    The Mods

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    After chemo, I had a unilateral mastectomy since the stats were not terribly different between having one breast removed and two.  As it worked out, that was the only practical decision since earlier in that year I had a perforated bowel and had major surgery to repair that.  Then two months after that, I had the mastectomy and I didn't need to have more surgery that strictly necessary.  In fact, the BS thought maybe I shouldn't have a mastectomy at all since the cancer was essentially gone from the chemo.  Then two months after that, I had the colostomy reversed.  I call that my year of living in the hospital. 

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  • duchess78
    duchess78 Member Posts: 5
    edited September 2014

    Hey Ly5484, 

    I was just diagnosed in June, my first 4 rounds of chemo were adriamycin and cytoxan, for me there was a lot of nausea and vomiting which usually hit the first few hours after. They did readjust the anti-emetics and it did get better. It also left me extremely tired. I am now on taxol, which causes muscle and joint pain for me but is much more tolerable. I think everyone does a little differently and it does depend on the type of chemo you will be getting. 

    Hope you are doing okay, just take it a day at a time (easier said than done). 

    ______________________________________________________________

    Dx June 2014 Right Breast Triple Negative

    Dx August 2014 Left Breast ER+

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