Freaking Out!!!!!

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Melissa1971
Melissa1971 Member Posts: 60
edited June 2014 in Triple-Negative Breast Cancer

Hi,

I have posted here before re my dx. The more I learn about triple neg bc the more scared I become. % of survival regardless of beong at a stage 1 are worse, chance of reaccurance are greater. I know there are no guarantees in life, but at 37 w/ 2 young boys I am desperate, as all of us are, to live long enough to raise my children and be healthy enough to do so. I am so scared. I would really benefit from hearing some success stories from people w/ a similar dx and age of onset. I start chemo next week and I am trying to remain hopeful that I beat this monster, but I am so frightened :-(

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  • everyminute
    everyminute Member Posts: 1,805
    edited February 2009

    Stage 1 is very early bc.  That is good.  Research shows exercise can reduce recurrence by as much as 50%! 

    As far as success stories - there are many many stories and the good news is once you get past 5 years your chance of recurrence drops dramatically - the same can not be said for us ER+ ladies (it could happen anytime!)

    Check out the success story thread too!

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    Success stories re triple negatives? I'll look for ie..thanks!

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  • everyminute
    everyminute Member Posts: 1,805
    edited February 2009

    http://community.breastcancer.org/forum/59/topic/57562?page=17#idx_503

    success stories is under inspiring stories

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  • tibet
    tibet Member Posts: 545
    edited February 2009

    Everyminute

    Are you triple negative also? Whats your dx and treatment?

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  • Raye99
    Raye99 Member Posts: 1,350
    edited February 2009

    Melissa,

    I am sorry to you have to join us here, but this is a great place for support and inspiration.  I was 39 when dx'd - my stats are below.

    Shirlann is a longterm triple neg survivor and should come along soon with some of her words of wisdom. She always makes me feel better. Gina is another survivor who can always put a positive spin on things and bring me up when I am down- hope to hear from one or both of them soon.

    Read the success stories and read less of the statistical information, that will only freak you out more so.

    xoxo Raye  

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited February 2009

    Melissa,

    I hope you don't mind me intruding on this thread, since I'm not a triple neg.  BUT, you can spend a lot of time reading and listening to oncologists, and you'll hear a wide variety of information that is sometimes contradictory.  I read recently that as an ER+ lady, I have a higher risk 14 or 15 years down the road, whereas a triple negative's long term risk is greatly reduced if you are clean for five years.  I've never seen adequate clinical data to support either statement.  What I can tell you is that I've been lurking around here for a few years, and I've met a LOT of long term triple neg survivors, so why can't you be one too?  I was VERY upset when I found out  how many positive nodes I had, and it didn't help to look at the statistics on that. 

    Your cancer IS early-stage, and so your long-term prognosis is really good.  Go out there and take the medicines they want you to take, do as much as you can to take care of yourself, and focus your efforts on what you do have control of in life.  We are not individually a statistic. 

    Some days the journey is doable, and some days you just want to pull the covers over your head.  We all love each other here, and we can help you through this.  Best of luck to you.

    Bobbie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Melissa: 

    I am 11 years survivor, triple neg.  Stage II.   Early stage BC has high survival rate.  Be brave, you can fight over it.  There is lots of them around, support you and encourage you. 

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  • Judine
    Judine Member Posts: 11
    edited February 2009

    Hi Melissa,

    I was a stage IIA triple neg and I am 5 1/2 years out with no recurrence.  A friend I met at radiation is now 5 1/2 years out and she was triple neg with 10 positive nodes, not sure the stage.  Yes, triple neg has a little higher recurrence rate, but as a stage 1 the odds are with you.

    I know it is extremely stressful to not have control over something as vital as living to raise your kids.  I felt the same way.  I eventually learned to concentrate on the things I could control like eating right, exercising, educating myself about the disease, and anything else that would help improve my chances.  Stressing about what you can't control will drive you crazy.  I think we all go thru similar stages and feelings.  Give it time.

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited February 2009

    WHOA, little girl, do not freak out over this.  It is not the best thing, of course, but other things with this disease are MUCH WORSE than TriNeg.

    For a big encouragement, if you get to 2+ years, the rate of recurrence and metastases drops like a stone, while the other types just gradually get better.

    I am 10+ years after treatment and just fine.  There are tons of us out there.

    When I was diagnosed they didn't know much about TriNeg, so no one said much of anything, sometimes little knowledge is good.  

    Stop reading about anything, get off the net, except for here.  And DO NOT read things that you know will upset you.

    We get very few women who say, "Well, I had breast cancer, did a lumpectomy, was a TriNeg, had rads, worked throught the whole thing and now I am fine".  Who says that?  No one, but this is me.  You tend to see only troubles and right now you do not need this. 

    As best you can, pick up your life and just put this out of your mind.  Do all the recommended checking of course, but you do not want to live in a "cancer" world.

    You will be just fine and live to see your grandchildren and get real old and call a sweet nurse in a rest home "mama".  I guarentee it.

    Gentle hugs, Shirlann

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    Thank you ladies!!!!!

    Reading your positive posts really helped calm my feels and helped me to take a deep breath. I am a teacher and mom to young children so my days are spent happily with young people. It's when I am alone or start to read negative things re bc that I get overwhelmed. I am getting my port this Friday, BRAC genetic test on Tuesday and start chemo in Wednesday: 4 cycles of AC followed by 4 cycles of T (Taxatere) dose dense every 2 weeks. After that, if genetic test in negative, I start 6 weeks of radiation. I am feeling anxious about this journey ahead, but know I am doing everything I can. I will continue to eat well and exercise.I think what is so scary is the fact that I can do all this and I still can't prevent a reoccurance....Your postive stories are what I am going to focus on, so please keep them coming.

    xo

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  • Rainenz
    Rainenz Member Posts: 93
    edited February 2009

    Hi Melissa

    I was 42 with 2 boys in their early teens when 1st dx with stage IIb grade 3 BC and 6+ nodes.

    My boys are now grown and I am now a grandma to 2 adorable little ones.

    You are at a very scarey time in your dx and tx, but it does get better and easier to handle in time.

     All the best with your upcoming tx.

    Raine 

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  • teharring
    teharring Member Posts: 46
    edited February 2009

    Hi Melissa, 

    I was diagnosed a few days before my 31st birthday, and am doing well almost 3 years later.  I was also Stage I, Grade 3 (1.7 cm, clear nodes), and had nearly the same treatment as you'll be having (I had Taxol instead of Taxotore). I know that things are very scary right now, but you can do this.  

    Hugs,

    Theresa 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    melissa - lots of good info here, another 4 1/2 year trip neg survivor here.

    happy they caught it early, good luck with your treatment,   now its time to kick that beast to the curb.

    you can do it!!!!!

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  • yowyow
    yowyow Member Posts: 69
    edited February 2009

    Hi Melissa - looking forward to my 3 year anniversary in May

    I was dx the day I turned 36 - with positive nodes

    my boys were 4 & 5yo

     (Theresa we share the same dx date - yay us )

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    Reading all of your great success stories makes me feel so much better. 

    I had my port put in yesterday...OUCH!  I am ready for chemo and look forward to sharing my good news as it comes.

    Please keep your positive stories coming.....they are truly inspiring! 

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  • DodgerGal
    DodgerGal Member Posts: 4
    edited February 2009

    Melissa,

    I hope you're not still freaking out, but it's OK if you are.  It is scary, especially with young kids, but you do not need the extra stress as you head into chemo. Surround yourself with positive energy, love and support and you'll do well.  If you can handle 2 young boys, you can handle chemo.

    I was 41 when I was dx last Feb.  I freaked out when I read all the stats, so I stopped reading them.  In my mind, there's a 0% change of a recurrence.  There has to be.  I'm a single mom with 3 kids (9, 11, and 12) and I HAVE TO BE here to take care of them.  

    I finished rads on 2/10 and am looking forward to moving on to the reconstruction phase of this journey and putting it all behind me. 

    A positive attitude will work wonders!  

    Good luck to you. 

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    Thank you for the positive pep talk.

    I have my moments, but I am trying to keep busy w/ good things and not focus on this dx. I keep reminding myself that my dr said there is a 65% chance I am cancer free right now before chemo and that chemo is my insurance it will never come back. My husband also read somewhere that those who go through chemo have a less likely chance of getting other forms of cancer in the future,so I'll think of it as preventive care....lol

    I start chemo on Thursday and already have a massage scheduled for Friday.

    Good luck to you, DodgerGal, in a few years we'll look back at this time and it will seem like a distant memory. We can tell our grandchildren all about it :-)

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    I am trying to keep thinking positively, but today met 2 women who were both originally dx w/ stage 1 bc and have had reoccurance/mets. They both had chemo as original course of treatment and one had a masectomy, but then had tumors growing in her nodes- she was 5 years out. Please post more survivvor stories because I truly need a pick me up. Thanks ladies!!!

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  • tibet
    tibet Member Posts: 545
    edited February 2009

    Where did you meet these women and are there TN or ER+?

    I think it is not unusual for ER+ ladies to have recurrence after 5 yrs.

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  • misty123
    misty123 Member Posts: 242
    edited February 2009

    Hi Melissa,

    I'm with the group if you keep reading and falling into the negative stories you will freak out. Try reading some of the uplifting ones and talk to your ong about your stats. Mine says early stage and chemo put me in the 95% survival rate and after 5 years my recurrence drops to 0% so I am going with that, my survival rate without chemo was 85% and that wasn't bad to me but an A is always better then a B on any progress report so I choose the chemo, I am now thinking about having my other breast removed just to take that worry off my chest, made an appointment with my BS for next week to discuss that option compared to reconstruction.

    Good Luck to all you beautiful strong ladies.

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    Thanks Misty!

    My onc. said w/out chemo 65%, and with chemo it goes up to about 85%. Obviously I like what your dr. has to say. I do not think these women were TN, but the original dx at stage 1 then the reoccurance surprised me especially if we TN women are at a higher risk if reoccurance. It's all so overwhelming.....btw one woman works at my school and the other lady I met at the onc. office.

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  • josiemarie
    josiemarie Member Posts: 11
    edited February 2009

    I'm 5+yrs down the line after triple neg dx.I sailed through chemo(4xfec,4xtaxol).Managed to work through most of it as an electricans mate.Although I must admit I was getting tired towards the end of the taxol,I soon picked up when it finished.Had 6wks radio which was a breeze after chemo and thankfully have never looked back! I never let my dx get in the.way.Obviously I've had my dark moments when the only way around them was to switch on automatic pilot,head down and keep going. But I didnt change my lifestyle- I still went to the pub for my pint of guinness and drove 200miles to see my best friend every couple of weeks.We are all different and it was my way of getting through it. I can honestly say that the worst part of my treatment was loseing my waistlength hair.It was very thick and glossy and at 45 I wondered if it would ever grow back again! Being trip neg and knowing I'd nothing to fall back on I went dairy free.It was my crutch and made me feel I was doing my bit. It may or may not be the reason I'm still here but I wish I'd done it years ago.I'm feel fitter than ever and havent put on any middle aged spread!....and oh yes,my hair is well on its way back down to my waist again!

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  • SandyL
    SandyL Member Posts: 49
    edited February 2009

    Melissa,

    I was first diagnosed in 1986 with IDC, Stage II, Grade 3, ER-/PR-.  At that time testing wasn't done for HER2, but my surgeon stressed that my hormone receptors were "very" negative.  I had just turned 35 and had two young children.  I felt fortunate that I had no node involvement, but I was terrified when I discovered that negative hormone receptors indicated a greater chance of recurrence or mets.  At that time there was no internet, no pink ribbons, and very few books on breast cancer.  Very different from today! I had a mast and chemo and became extremely depressed during treatment.  Finally it was over and the waiting began.  For a week before every checkup I was positive my doctor would find something.  I'd breathe a sigh of relief when getting each all clear.  As time went on, my fear receded and eventually I became convinced I would live a full life.  

    I wish I could tell you I've been fine since then, but in 2002 I found a lump in my remaining breast It was a new primary rather than a recurrence.  I wasn't a bit happy about playing this game again, but didn't have much choice.  I had another mast and chemo, then because I also had four involved nodes, I had radiation.  Everything else was very similar to the first time.  IDC, Stage II, Grade 3, ER-/PR-, HER2-.  I didn't get as depressed as the first time, probably because there was so much more available in the way of resources, not least of which was this site.  So far I'm happy to say there's been no sign of mets. Smile

    I realize my story would be more encouraging if I hadn't had the second primary, but at least it wasn't a recurrence or mets.  I've seen my children grow up and I have two wonderful granddaughters, ages 7 and almost 4.  I hope to be here to watch them grow up, too.  

    Good luck! Smile

    Sandy 

      

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  • tibet
    tibet Member Posts: 545
    edited February 2009

    Sandy

    Your story indeed is encouraging. You survivied two TN and as 2002 is alread 7 years ago, your recurrence is nearly zero. What was your Chemo the first and second time?

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  • DodgerGal
    DodgerGal Member Posts: 4
    edited February 2009

    Hi Melissa,

    Was thinking of you yesterday.  How was your first chemo?  BTW...I sent you a private message.

    Hang in there,

    Desiree

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited February 2009

    Melissa - when I went for my regular 3 month checkup a week ago, I mentioned how scared I was since I was triple negative. The doctor told me that having clear nodes overruled TNBC - that it was much more important in determining prognosis.

    So do what you have to do to attack this beast, and do it with the feeling that you will make it. It's better than spending the rest of your life in fear (not that I'm over that stage, but I'm not in fear all the time - only before appointments)

    susan 

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited February 2009

    I am feeling much better emotionally. I had my first chemo yesterday, and it wasn't so bad. Felt a bit naseaus last night and this morning.I have been drinking tons to try and expel all the toxins. I took the day off today and went for a massage which was amazing...an hour of therapeutic touch and a steam shower really worked it's magic.

    A few days ago my family and I went out for sushi and my son distributed the fortune cookies at the end of our meal.....my fortune read "Long life is in store for you". It made me cry right there at the sushi bar. 85-95% of people survive my dx, so why shouldn't I. I read the Lance Armstrong book and his odds were so low, and lok at him now. Believe me I am still scared, but like Susan (guitarGrl) above says I'll try and save my fear for my check ups which will come later, and for now I am busy being mommy, wife, friend and teacher.

    Ladies, thanks for all of your amazing support.

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited March 2009

    The effects of chemo are hitting me hard. Took some meds to help counter the effects, but the reality of having cancer is overwhelming. I am going through the motions,but am still in a state of disbelief. I am so scared!!!  I wish things were like they used to be.I was a happy mom/wife/teacher w/ insignificant worries and complaints. I just can't believe this is where my life is right now. I pray hard that I get past this and can look back at this time as a blip in my life, but the reality is it could kill me.  This is the hardest most painful expereince I have ever had to endure. Sorry to rant.....

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  • sherryw
    sherryw Member Posts: 172
    edited March 2009

    Melissa

    I am so sorry you had to join us here, I am glad you found this site because it is so helpful and encouraging.  We have all felt the same as you are feeling now, scared and worried.  Not knowing if we will live or die.  The best you can do now is trust in the treatment you and your doctors have decided on.  You have to take one day at a time and if you can't do that then take one minute at a time.  This is probably the scariest fight you will have to fight but you will get through it, just like many of us have.  

    I know you are worried because of being TN but just look at the fact at how early you caught your Breast Cancer.  You are stage 1 and your nodes were clear , so try to keep that as encouragement.  

    I am not TN but I had a 2 cm lump and 3 positive nodes ( when I found out I had 3 positive nodes I thought I only had a short time to live).  I was 40 when I diagnosed and felt the same as you life was calm and good and now your life gets turned upside down.  Well, I am 4 yrs out and my world is starting to get turned right side up.

    So hang in there and just do what you have to to get through your treatments and plan for the future because you do have one, you will find it.

    sherry

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  • Melissa1971
    Melissa1971 Member Posts: 60
    edited March 2009

    thanks Sherry!

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