Just found out I'm triple negative, so scared

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kathyk1110
kathyk1110 Member Posts: 5

Hi ladies,

Just been dx with TN. Visit onc this Thursday. I've been reading your comments since

I found the lump in July. I'm scared to death. You ladies are so brave and I feel like

a wimp, but I'm terrified. Had lumpectomy and sentinel node biopsy

Surgeon said chemo definitely.

Stage 11A, 3.4 tumor, clear margins, neg nodes

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Comments

  • tnt
    tnt Member Posts: 23
    edited August 2009

      We all are here for you.I am a wimp too.Just try to stay busy doing things to keep your mind off it.I wish i had some words of wisdom for you. 

  • carolinachick
    carolinachick Member Posts: 387
    edited August 2009

    Hi Kathy,

    You will find great support on these boards.  You will get through this.  I found that just taking one day at a time and congratulating myself at the end of each day for getting through was very helpful.  Chemo wasn't fun, but not as bad as I had thought it might be.  You will find inner strength you didn't know you had, and there are many here who can help you along the way. 

  • pinkdove10
    pinkdove10 Member Posts: 80
    edited August 2009

    Hey Kathy,

    I know exactly how u feel.  i went thru thr exact same thing as u when i knew about the TN.  It was so scary.

    But yes, just be positive.  read the threads on this site and see how positive and helpful everybody is. even if TN has no followup medicene... it has a cure.  chemo is most effective on TN'S... Smile

    Now with the advancement in med, the chemo will not be so bad (like carolinechick mentioned). 

    Dont worry

    Hugs

    Uma

  • Thankful-Survivor
    Thankful-Survivor Member Posts: 4
    edited August 2009

    I am 2 1/2 years out from my TN dx and very, very grateful.  The only regret I have was spending so much of my waning energy worrying. During treatment, all seem to coddle you and allow you to feel however you feel.  While this is supportive, I feel being inspirational, optimistic, and putting things in perspective is also quite beneficial.  So, remember this will be one year of rock-your world scary sh_t, where you (and your loved ones) will learn more about cancer and your options than you ever cared to know.  Just know that you and the doctors are doing all they can to beat it, and soon it will be over so you can embrace the rest of your life!     

    Good luck, be strong, hang in there.

  • renahen
    renahen Member Posts: 12
    edited August 2009

    Hi Kathy. Goodness, being scared doesn't make you a wimp--it makes you normal! I really believe that feeling and embracing whatever emotions come our way after a cancer diagnosis is really healthy. If we try too hard to push the fear away, I think it gets a stronger hold on us. I try (and don't always succeed, I admit) to treat my fear as though it's a scared child--to comfort it and nurture it rather than push it away, and I find that it dissipates more quickly that way. I am a 23-year survivor. I was diagnosed in 1986 with 22 positive lymph nodes, and I'm alive and well and cancer-free and about to celebrate my (gulp) 60th birthday. I didn't think I'd live to see my 40th, but I've raised my daughter, had many good years with my husband, traveled and done many other things. I know it's really scary, Kathy, but there is life after cancer! I wish you all the very best. Love, Rena

  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Wow Rena!  You are such an inspiration!! 

    Kathy you and I have very similar stats.  We will do this together.  Being scared is normal.  However, I will tell you to stay away from sad stories and negative posts.  You need to be positive and feel like you can beat this thing. 

    I am having some minor complications from lumpectomy, so chemo might be delayed for a just a little while.  But I am ready to tackle this thing head on.

    Please PM me anytime you want to talk.

    Anita

  • kathyk1110
    kathyk1110 Member Posts: 5
    edited August 2009

    Thanks for all your support ladies. I feel much better after your encouraging words.

    I see the onc tomorrow. Here's hoping I can start the chemo and get it over with.

    How long does it take before your hair comes out? I'm trying on wigs tomorrow after

    my appointment.

    I wish I could give you all a hug for all your kind words. Know that all of you are an inspiration to those of us that's just been dx.

  • Debonthelake
    Debonthelake Member Posts: 244
    edited August 2009

    Hi Kathy,

    These are a great bunch of ladies.  It took only about 3 weeks for my hair to fall out.  Before my second chemo infusion I was bald.  I hated my wig and resorted to wearing mostly turbins they were much softer.  My last chemo infusion was the end of April.  I just had my first hair cut to shape the back up a little.  My hair is getting close to an inch long in places, I have eyebrows and eyelashes again.  It's a tough year, but, It's a tough year to get cured.  There is life after cancer.  God be with you.

  • pinkdove10
    pinkdove10 Member Posts: 80
    edited August 2009

    Rena... wow!!1 i wish i could post something like this in my future!!

  • carolinachick
    carolinachick Member Posts: 387
    edited August 2009

    Kathy - keep us posted on what the onc says.  My hair came out after my second treatment.  I, too, had my last treatment in mid-April, and my hair is now an inch long.  I bought two wigs and wore them mostly to work, but once the weather got hot I ended up wearing bandannas and scarves.  You can get all sorts of colors of bandannas at your local craft store, such as Hobby Lobby, for about $1 each.  I have tons of them in all sorts of colors and patterns.

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    Wow you ladies make me believe that there is hope!  I was diagnosed at 30 on August 13, 2009 with a stage IIA triple negative tumor with neg nodes.   I'm in the process of getting one of my margins cleared and port placement on this monday and will get the bone scan and ct scan to make sure it hasn't spread. I will begin chemo sometime in the middle of september for 6 months and then radiation.  If i test postiive for the BRAC gene then i will get a masectomy instead of radiation.  i have no breast cancer in my family and always tried to maintain a healthy weight and diet.  I have wonderful family and friends that support me but it helps to have support from women that have been and are going thru it.  Hopefully teh scans will come back clear so I can work on the initial treatment plan i;ve been given.  You are all wonderful women that ARE survivors!  Keep the faith!

  • Tassiechick
    Tassiechick Member Posts: 3
    edited August 2009

    Hi Girls

    Trying to keep busy and have other interests if possible during treatment helps keep the worrywarts away. 

    In triple negs it may also be worth considering dose dense chemo (hitting it hard)- usually meaning having it every 2 weeks instead of 3. There may be problems getting white blood cells back up in time for the next hit, but neulasta is a help. The bonus is chemo is over quicker!! 

    I lost the hair on week 3 too, but once I shaved the rest off I felt liberated and wish I'd done it sooner. After that with a good wig I felt good and it was amazing the amount of people who unwittingly complimented me on my hair. Whoops!

    I took a week off for surgery, another beacuse of cellulitis and another when I had a bad reaction to first chemo. I then continued to work 3 days a week through chemo - I'm a health carer with my own business. Noone knows how each individual will react to chemo but after a rough start I actually got less sick with each one! 

    Radiation was a breeze.

    Good Luck Sisters 

  • nonijones333
    nonijones333 Member Posts: 120
    edited August 2009

    Hi Kathy, Like Rena, I am also 22 years out. My daughter was diagnosed at 34 and she is now 5 years 3months,24 days out, but who's counting...Life is good for both of us. She is fabulous. I was 39 at diagnosis now 62, yikes!!! Lots and lots of us!!! Would rather be TN then then positive because we don't have to deal with tamoxifin and they say after 3 years "WE ARE GOOD TO GO". they even talk about us being cured after time. Poor positive girls are never given the all clear.

    Rena and I are one of the few that come back to prove LIFE GOES ON AFTER TN BREAST CANCER. Many others just go on living their lives, the people here are those just diagnosed or those that are in trouble. You have to understand that. 200,000 women a year are diagnosed and very few are here, remember that. Lots of good stories out there, focus on the positive, and your diagnosis sure is positive.

    BIG HUGS TO RENA FOR COMING TO SUPPORT THE GIRLS, you have quite a story. GOD BLESS YOU

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    Keep up the positivity!  go in for surgery on monday and get my port placement put in. then i go get bone scan and CT scan on tuesday.  MORE WAITING.  argh!   i just want some goals to put in place rather than waiting for what they did or did not find.  i already know i have TN breast cancer, now i want to deal with it and move on.  THE CANCER WILL NOT WIN!  you all are inspirations.   

  • kane744
    kane744 Member Posts: 461
    edited August 2009

    I'm triple neg as well and thought of it more in a positive way.  I figured chemo and radiation was a good sub for five years on Tamaxafin.  I guess I didn't know any better and better get educated.  I finished my chemo the end of Jan. and rad in mid-April.  Still not completely back to normal but am getting there.  My hair is growing out, eyebrows and lashes too.  Had my second shaping cut a couple weeks ago.  My year anniversary mammogram showed some "don't worry" cysts and I will be checked again in three months. 

     There will be days when you'll feel positive and other days not so much.  That's OK cause you feel what you feel.  I had lots of days when I felt truly down.  But there were days when I joked around about my condition, killing those cancer cells with laughter.  I found out that I'm stronger than I thought.  A technician asked me recently how I handled the chemo.  I told her I was sick as a dog and bitchy.  We both laughed.

    One more thing:  I bought several wigs, decided I hated them all.  Went to hats which were more fun but equally a pain.  One day in a restaurant I decided I was done with hiding, ripped off my hat, and that was it.  I've met more sisters in bc because of my bald head and no one stared except little kids and a big smile won them over.  

    Good luck to you.  Try not to be scared and never think that what you're feeling is wrong! 

  • psp2pdx
    psp2pdx Member Posts: 38
    edited August 2009

    I'm three years out of tx this month!  I have lived more and enjoyed life more the last three years than I ever thought possible.  You will get through this all you gals.  My friend who has bc told me there is always a silver lining in every cloud.  I believe that's true.  Focus on that if you can and you will start to see changes in your life you never thought possible. 

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    i LOVE hearing survivor stories and hope i can post that i'm a survivor in a year from now and it continues that way. todays a better day than yesterday and can only be honest with my feelings as they come. my family knows i can beat this and i know i can too but the support of you ladies will help me in a way they can't.  i'm 30 and angry that i'm facing a difficult cancer but honestly what type of cancer is easy???  i can only be good to my body from now on and not even give this cancer a chance.  i have undetermined goals as to chemo dates as of now but that's one goal i know i can set- that i gave cancer a home but now its about time it be evicted.  YOU WITH ME??

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    i LOVE hearing survivor stories and hope i can post that i'm a survivor in a year from now and it continues that way. todays a better day than yesterday and can only be honest with my feelings as they come. my family knows i can beat this and i know i can too but the support of you ladies will help me in a way they can't.  i'm 30 and angry that i'm facing a difficult cancer but honestly what type of cancer is easy???  i can only be good to my body from now on and not even give this cancer a chance.  i have undetermined goals as to chemo dates as of now but that's one goal i know i can set- that i gave cancer a home but now its about time it be evicted.  YOU WITH ME??

  • vickilynn
    vickilynn Member Posts: 422
    edited August 2009

    Just signed up here... had a mastectomy on July 27 and am set for a port-a-cath on Monday.  How do I learn what all your abbreviations mean????  I was told I was a triple-negative...

    I am nervous about the cath placement.  I've tried to find info on line and I found this website.  Unfortunately I just read through several horror stories (OK - not horror, but scary) on another forum.  Could sure use some encouraging words...

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    well you're not alone mandolin because i get my port placement on monday too.  my surgeon says the port placement is to our benefit so we save our veins and from being a poked with needle all the time.  i've heard its weird at first but you get used to it.  easier said than done but you just have to do it. don't get consumed in all of what you read, there are many survivor stories and any cancer is an "invasive" cancer because it still invades your life and thoughts.  the best we can do is stick together as women and beat it.  good energy is the only energy to have right now because cancer only feeds on the negative.  don't give in and we are all in this together. BREATHE....IT WILL BE OK.Innocent

  • vickilynn
    vickilynn Member Posts: 422
    edited August 2009

    Thank you Austin (or should I call you Alley?)... I'll be thinking about you on Monday and I'll say a prayer for you as they're doing me.

    This is certainly not what I had on my agenda for this summer!  I have a photo of a little girl on my desk who is bracing against the wind - and I love what it says:

    "We cannot direct the wind, but we can adjust our sails."

  • atrishagreen
    atrishagreen Member Posts: 2
    edited August 2009

    Is there anything "bad" about being triple negative which I also am

     other than of course, you're stuck with chemotherapy.  I always seem to be in that small "exceptional" group.  Apparently 80% of breast cancer is est, prog positive.  I'm envious.

    just trying to get thru every day-having problems with febrile neutropenia-hospitalized last week

    am staying at home because I'm so afraid of contracting something-exceedingly boring, but don't have much energy to do much anyway.

    I know I can get over this hump ..& "nobody promised me a rose garden"-except of course my mom, who felt if I could find Prince Charming, all would be well in my life.  She was a wonderful but very naive person!

    Hope things are going for all of you

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    call me Alley and if i can help in anyway please let me.  the best thing to do is persevere and don't listen to all the statistics. my oncologist says that i have a 80%of beating this and i'll take it!  i wish it was 100 but no one can be guaranteed that.  the thing abut TN's is that if you don't have the BRAC gene its unexplainable how we got here.  best thing we can do is eat well and exercise and take the right supplements.  there is no easy way but there is hope.  prayers are coming to you all my BC sisters!  stay strong and fight! 

  • psp2pdx
    psp2pdx Member Posts: 38
    edited August 2009

    Hi there

    I had a port put in and it became my 'best friend'.  I kept it for a year.  I am so glad I did.  I never had any problems with it. It saves my veins and I didn't have to get 'stuck' all the time .  All the lab draws were from the line. Just make sure your nurses practice good technique, wash their hands and do all the necessary steps such as flushing your port after use.  

    I'm three years out and still rub my port scar thoughtfully, remembering where I've been and where I'm going. You will get through this, yes it's a difficult path to walk but there will be so many discoveries along the way.  Deep cleansing breaths help too :) 

  • vickilynn
    vickilynn Member Posts: 422
    edited August 2009

    Thank you for the encouragement about the port.  I needed to hear some good things about it.  Alley and I will both be having it done tomorrow. 

    I just feel like I'm on a fast track here - 6 weeks ago, I had a lump and today I'm minus one breast, still recovering from that surgery.  I thought I might have a couple more weeks before they do more.

    I feel like I haven't even had a chance to think about this all or to even know what questions to ask.  I guess we all become experts quickly with this, don't we? 

  • kane744
    kane744 Member Posts: 461
    edited August 2009

    I had a port put in as well and I never regretted it.  I had it done because when I was in the recovery room following a lumpectomy, I remembered a nurse telling me I had lousy veins and should get a port if chemo was part of the treatment.  It made treatment and lab work so much easier to bare.  So you can cross that worry off your list.  And that's how this whole thing goes...one step at a time. 

  • kathyk1110
    kathyk1110 Member Posts: 5
    edited August 2009

    Hi Ladies,

    Saw the onc on Thrusday and I'm to have my scans Tues. Will start chem in a week or so.

    He wants me to take the AC every 3 weeks for 12 weeks then do a clinical trial wih lxempra

    instead of taxol every 3 weeks for 12 weeks. He said researchers felt that it could prevent

    reoccurence . Does anyone know anything about this? I'm confused at this point and

    have to make a decision by this Tues. if I want to be on this trial or not.

  • living4today
    living4today Member Posts: 215
    edited August 2009

    Hi there,

    Just to encourage those who are getting their ports tomorrow.  I have had mine in since xmas eve and am very glad that I have it!  It made chemo, labs, etc so much easier.  I didn't even have to use the special cream they give you to numb the area before they access it.  I had 5 months of chemo and now am doing radiation, all after a double mastectomy.  I didn't think I could make it, certainly didn't think I was strong enough.  Some days were bad and others good!  You can make it through this, one step at a time.  I try real hard to not think about reoccurance and concentrate on plans for a long, long life.  I even splurged with a real greasy pizza and beer tonight, knowing that I just blew the low fat diet all to heck...but my 13 yr old dd and I are home alone and it was just such a special time.  (except that I just found out she had her first kiss not so long ago....life goes on!)  Best wishes to you all who are starting your journey!

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    thank you ladies, you are are so beautiful!  get my "buddy" tomorrow and to me know it means one more step closer to recovery.  i'm planning on splurging on chips and queso right now...heck why not i deserve it!! i'll keep you updated and SPLURGE we all deserve it!  hugs

  • austinalley
    austinalley Member Posts: 11
    edited August 2009

    OK got my port in and a little sore but on my way!  surgery went well and more tests tomorrow but one more step to kicking this beast!  

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