Triple Negative

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violet7
violet7 Member Posts: 180
edited June 2014 in Triple-Negative Breast Cancer

Hi Everybody,  I was just diagnosed with Stage 2 Triple Negative BC.  My tumor was 2 1/2 cm and I had a 1/2 cm tumor in my sentinel lymph node, the others were clean.  I had a double masectomy w/ clean margins.  I am still recovering from my surgery which had complications and will start chemo the first week of December.  I was on top of my yearly mammograms.  Last year I had endocervical cancer, and the breast cancer was discovered during my CT Scan to be certain I was still cancer-free from that event.  I'm 44, I have two young children 10 and 6 - and Im terrified.  My oncologist sounded fairly optimistic about my being cured, and Id love to believe that with all my heart.  Please, please I'd love to hear Triple Negative success stories.  Violet

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  • Luah
    Luah Member Posts: 1,541
    edited November 2009

    Hi Violet7, sorry I can't provide a success story, but I do send you hugs and empathy!   I found out last week that I am Trip Neg, grade 3, 1/4 affected nodes, and I too am terrified. I was not expecting such grim news at all! I do know that Trip Neg, being aggressive, responds well to chemo. And while risk of recurrence is high in first 3 or 4 years, it evens out afterwards with our other BC sisters. I too am trying to find silver linings, hoping too that someone comes along here soon.... 

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  • Luah
    Luah Member Posts: 1,541
    edited November 2009

    Violet7 - I just noticed a thread further down with 3-year success stories. Check that out. The ladies here are very generous in sharing their experiences, and there's some good inspriation there! Take care. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    Even reading the success stories - I am still petrified.  I too am triple negative, diagnosed in late Feb, 2009 and feel like a damn ticking time bomb!  Does this fear ever go away, even a little?

    Linda

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    I work with a woman who is 23 years out from TNBC.  She had a double mastectomy and CMF.    She wasn't tested for BRCA until 2 years ago when she found out that she is BRCA1 and BRCA2.  She then had a prophylactic hysterectomy.  She is quite fine!

    I also spoke with a woman through y-Me who was TN, 10 years out.  She had AC and was supposed to have T but opted out.  

    I think we need to realize that there are lots of positive outcomes!

    Cheers!

    Lorrie 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    Lorrie - Thank you so much!  It's so good to hear the positives and that they do in fact happen.  Can you move in with me??????  Lol!

    Linda

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    LOL!  

    I was also desperate to find a TN survivor.  I called the y-Me hotline and they hooked me up right away with the 10 year survivor.  Little did I realize that I had my own 20+ year survivor right under my nose!

    Lorrie 

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited November 2009

    Hi Violet, sounds like you have had a tough road already leading up to this dx, my heart goes out to you.

    I too am a triple neg. I was dx with IDC stage ll , Grade 3  last March had surgery in April started chemo  ( FEC &  Taxotare )in may thru august. and did radiation in Sept.  I had 5 out of 12 nodes positve. Have had clear checkups and am 1 year out from tx and am feeling great ! So even though it is a short time I still considered that a success ! ( and am looking forward to many more successful years !)

    ,Though being trip neg can be a little overwhelming...there are some positives to being negative ( a few were stated above ) We are treated with the big guns in the chemo dept. and triple neg cancer is supposed to really respond well to the chemo's out there. I also think I heard it is less likely to reoccurs after that 4 -5 year window.

    Hearing you have any kind of cancer is scary, for some  trip neg  more so.....but I think half of my battle was won with keeping a positive attitude and not filling my head with to much info concerning statistics and such that you can find on the internet these days.

    Take care 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    While I can't offer a success story yet, I do plan to live a long time and continue to drive my family crazy............Laughing 

    I am so sorry you have to go through this again, much less getting TN dx and can't truly understand what you're feeling, but I can say that I'm four months out from dx, still going through tx, but have a much better outlook now than I did in June. 

    Good luck...................

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  • Sido
    Sido Member Posts: 234
    edited November 2009

    I too am triple negative (Stage 1, Grade 3) and frightened, but the news isn't all bad.  There are a number of targeted therapies in clinical trials and a wonderful resource in the Triple Negative Breast Cancer Foundation website.  I didn't qualify for a trial, so after my lumpectomy, I am now half-way through 4 chemo tx of taxotere and cytoxan, followed by 6 weeks of radiation.  Being TN feels like you don't have a lot of choices but our type of cancer also responds really well to chemotherapy.

    Learn as much as you can.  Alot of the information is scary, but there is definitely hope out there.

    Sido

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  • KzooAmy
    KzooAmy Member Posts: 18
    edited November 2009

    I was dx on 9/5/09 and I too am TN, 11/16 nodes, and was told today they found a 7mm nodule on my left lung, so probably mets as well.  I also have 2 children.  Trying to stay positive but it's very overwhelming.

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    KzooAmy--think positively, TN is supposed to be very sensitive to chemo.  You will do wonderfully and be around a long, long time for your children!

    Lorrie 

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    I thank everyone for both the success stories and the comraderie.  I'll look up the older posts, too, thank you.  I keep rollercoastering between optimism and pessimism.  I've heard more stories with a successful outcome than not, though.  I have to believe that I (and you!) are going to be "cured".  No, I don't think that the fear is going to go away.  I spent the past year in fear that my endocervical cancer had not been eradicated by my radical hysterectomy.  I'm a year out with that and it does appear to be gone.  It was adenocarcinoma, a more aggressive cancer than most cervical cancers.  This dx is significantly worse.  Sometimes I think I'm 44 and already this messed up.  I have no female parts left - no breasts, no ovaries, no uterus & cervix, and my vagina was shortened 1/4 of an inch in case the cancer had migrated down.  Soon my hair will be gone too.  I've had basil cell carcinoma on my hand.  I wonder if its just too late and my body is just over it.  Then, I perk up.  My oncologist sounded optimistic, really.  People have overcome worse.  Bodies are resilient.  I'll be getting new breasts (the ones I just lost were a little care-worn from nursing).  I can grow new hair.  I can be healthier than ever.  I can live a long life and watch my two babies grow up and have babies.  My body can rebound.  Your bodies can rebound.  And we have to believe that while we are being treated for bc their will be a cure and we will receive it and never have a recurrence.  Thank you all.  I'm going to look up older posts. 

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2009

    Chemo works really well on triple negative. I'm over 4 years out and feeling good. Wishing you all well...

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  • cheranthia
    cheranthia Member Posts: 65
    edited November 2009

    Hi Violet,

    You are right. It is truly amazing how resilient the body is. During treatment, I felt and looked like I had aged 15 years in just a matter of weeks. But the chemo did its work and I healed. My hair is back and the steroid weight went away. I am 2 1/2 years out and doing quite well. There are many, many of us who are thriving after TNBC. You have every reason to be hopeful. Best to you.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    KzooAmy - Sending you cyber hugs and prayers.  I know you are very fearful, as I would be as well.  Hang in there and please keep us all posted.  Lean on us all you can, please.

    Hugs,

    Linda

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  • Susan62
    Susan62 Member Posts: 2
    edited November 2009

    I was just told my cancer is triple negative, another shocker!  I begin chemo 11/16.  8 treatments over 16 weeks followed by 6 weeks radiation.  I have taken a leave from work and want to do all that i can to beat this! 

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  • Titan
    Titan Member Posts: 2,956
    edited November 2009

    Susan62...you go girl!  I too am triple negative and don't really worry about it that much..quit reading the interenet and listen to your oncs!  Yes...we have to be very careful; however....when "they" say "just" chemo will help..well hell yeah!  Imagine if we were TN and chemo didn't help?     You have no node involvement which is HUGE...for any type of breast cancer..go with it!  Eat healthy, exercise, do what your oncs tell you...and you will be fine!  No one knows ..whether or not they have cancer how much time they will have....nothing is a given..so get out there, fight the stupid freaking cancer...and LIVE!  

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  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2009

    Ladies - triple negative, node positive, and 4.5 years from diagnosis! :-)

    (Hi ravdeb!)

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    cmb35!  Yay!!!!!  I love your post!  Short, yet it makes my day!  Did you do chemo?  And did you take any alternative/additional treatments?  Violet :-)

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  • SuzShea
    SuzShea Member Posts: 8
    edited November 2009

    Hi Ladies - I was dx in April 2007 with Stage IV, triple negative BC.  As of today, I am stable, with a PET/CT scheduled for next Friday.  I have mets throughout my skeletal system and you wouldn't even know it!!  I feel good.  I have 2 beautiful boys (9 &10) who drive me absolutely crazy and keep me going.  With this disease, I have learned to stay in the present and not look to far into the future. (It will just make yourself crazy!!!)  I have been through a bilateral mastectomy, radiation, Carbo, Taxol, Avastin, Zometa (for the bones), Xeloda, Abraxene, Nevelbine and a freaked out husband who says he is no longer attracted to me.  Now, I am on Doxil, Avastin & Zometa.  I have had 3 ports already, 1 of which got infected a month ago and now my new one is giving me trouble. (Going on Friday for a CT scan of neck and thorax to look for clots.)  I have had cellulitis from my radiation which then gave me lymphodema.  It's been a constant battle and a very long road for only 2 1/2 years, BUT, I got through it and I am still here and feeling good.  YOU can do this!!! YOU are strong!!!  As I said before, STAY FOCUSED ON THE NOW and don't get yourself worked up over something that may or may not even happen in the future.  Be well and stay strong.....and yes, I would consider myself an on-going success story!!

    Suzanne, Huntington, NY

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  • Titan
    Titan Member Posts: 2,956
    edited November 2009

    Ok...Suzanne...after all the crap you have been through..I'm being nosy..but did you ditch your husband? 

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  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2009

    Violet - Glad I made your day, that was my intent! I had a lumpectomy, then a re-excision and SNB, and then a full AND. I did dose dense AC/Taxol, and then 38 rads (33 plus 5 boosts.) Pretty agressive treatment I know, but I wanted to feel like I was doing all I could do.

    As far as alternative approaches, I took L-Glutamine powder during the taxol to help with the neuropathy, and I tried to use "positive mental imaging" to keep myself calm about treatment and the future. I am supposed to be exercising (my onc is a big believer in exercise to stay healthy and reduce risk) but I'm not so strong at keeping up with that! :-)

    And btw, I did ditch my lousy rat-bastard ex-fiance! Suzanne, hope yours either got over it or got out!

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    Cmb35,  I salute you :)  Violet

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    Suzanne,  I salute you, too.  Dang, you've been through it.  Get a new husband.  I'm angry with mine at the moment and planning on an upgrade (I have this anger issue lately and it keeps jumping from person to person and group to group.  And I'm not an angry person).  You deserve all the love in the world. Violet

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2009

    I'm so sorry to see so many new TNs.  I'm just at the 1-year mark from diagnosis so I do consider that a success story, but the fear and anger and all those things are still frequent visitors!  It does seem to be calming down, though, so hang in there! 

    If nothing else, we TNs are a strong fighting group!  And yes, life's too short to put up with BS from anyone.

    Violet, the situation is far from funny, but your comment about planning an upgrade made me LOL! 

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  • carolinachick
    carolinachick Member Posts: 387
    edited November 2009

    I'm also TN and looking forward to my "cancerversary" on January 7.  Unfortunately that's also the date of my next mammogram, so I'll be dancing with the big vise grip before I can dance with my hubby in celebration. 

    I have my onc check-up tomorrow and hoping that it being scheduled on Friday the 13th isn't ominous...

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2009

    Oh, KzooAmy- I just saw that you were worried about mets too, because of your 7-mm lung nodule.  I think there are quite a few other things that can cause that - infection, scarring, or even just inflammation from treatment.  I also have 2 4-mm lung nodules from my PET scan after treatment, but my doc says it's pretty common and not to worry and just to get a followup scan in 6 months.  I know - don't worry - riiiiiiggghtttt.  I'm right there with you with the dread, but wanted to let you know there are other causes.  Hang in there!

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    KzooAmy,  I've heard that about PET Scans too.  My mom is being scanned and rescanned as they watch a slight glow in her abdomen which may or may not be cancer.  If it isn't they think it is a cyst.  It's terrifying.  I have a PET Scan on Saturday and I'm worried they will find mets AND that they will wrongly identify something in my body as cancer and kill me w/anxiety.  Thenewme:  Absolutely 1 year is a great success story.  Those years add up.  In fact, I'm planning on starting a collection :)  I'm just a mess.  I don't even know what to expect out of myself from moment to moment.  One moment I'm entranced by some sparkly ornaments at Pier One  and the next I'm crying in the middle of Pier One over an Abba song my grandmother & I liked.  I'm a stable one right now.  Carolinachick:  I was diagnosed with cancer twice in October - this and last  - and October used to be my fave.  I'm dreading next October.  {{{{{Hugs}}}}}} to you for the 13th.  Violet 

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  • KzooAmy
    KzooAmy Member Posts: 18
    edited November 2009

    Well the nodule on my lung is not cancer...yay!  But, they did find several nodes all over in my chest suspicious for mets so they put me at stage IV.  I thought stage IV was mets to distant organs/bones?  Well the plus side is that I get Avastin/bevacizumab. I start chemo on the 18th; Weekly Taxol and bi-weekly bevacizumab.

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    KzooAmy, I am so, so sorry.  May chemo kick cancer's @** .  I have my PET Scan this afternoon. 

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