I can't do this

sftfemme65
sftfemme65 Member Posts: 790

I was so scared and felt so alone when I was diagnosed.  I found this site and women who gave me hope that all was not lost.  That I could fight and win.  That it was possible and I started feeling better.  I try not to let every ache scared the hell out of me.  I try not to let the fear paralyze me completely but when it did, I came here.

Annie, Twink, Deb, CalGal....I know I am leaving some out but right now I can't think through the tears and shock.  They gave me hope that I was going to be ok.  How the hell does this happen? It seems like everytime I sign on, someone else is gone.   I just dont know what to say but I can tell you I am so scared that right now I can hardly breathe. I just feel so lost.

Teresa

«1

Comments

  • tibet
    tibet Member Posts: 545
    edited February 2009

    I feel the same way now...really hope there are many TN long term survior gals come to help. But I wonder if many long term surviors are out there and they live normal life and don't want to be reminded of the hard time?

    I don't know if we only or often read the negative stories on the board because it is when people have problems they come here thus more sadder stories than real life?

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited February 2009

    Thats an interesting question.  I just can not believe they are all gone.  I mean Twink, her and I our diagnoses was so similar.  Annie...well what can I say about her except what a great lady.  Her and I PM'd back and forth. She was amazing.  I guess now she wont ever be able to tell me what her "screenname" meant. 

    My family and friends keep telling me, oh your going to be just fine.  I think its more for them than it is for me. 

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

    Ladies there are many many positive TN stories.  My friend (who is recently diagnosed TN)'s mother - is 19 years out and had 1 positive lymph node.  Believe it or not, she does still attend support group meetings but does not come to this site or others. 

    Not only are the long term survivors out living their lives (and as TN it is VERY unlikely that it will come back after a certain amount of time - unlike us ER+ girls who will always be wary), but people who were diagnosed 5 or 10 years ago did not use this site or any other site because it just wasnt as active then.  People who recur do tend to come back for the support.   

    There is a woman who checked in recently - I remember - postive nodes and 10 years out. Doing great.

    On the stage 3 board  - KimF is 4 years out and getting reconstruction. 

    It has been awful to see such beautiful women taken away by this disease, I agree with you there.  I sometimes think a break from the website is a good thing - but here I am!

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Sftfemmme65

    I think Twink hd 3 nodes positive after chemo. She had chemo first, so it is not your case as you had 3 nodes before chemo. Right? She also had larger tumor 3 cm...I believe.

  • rsben70
    rsben70 Member Posts: 137
    edited February 2009

    hang in there teresa, we need to stay positive and stay strong.

    i have a TN friend 6 + nodes 13 years out doing great.

    hugs to ya

    becky

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Becky

    Does your friend also come to this site? What was her dx and treatment?

  • gmr52
    gmr52 Member Posts: 74
    edited February 2009

    I just passed 5 years since diagnosis.  IDC, TN with 5-6 nodes confirmed by node biopsy.  I had neoadjuvant chemo, TAC x 6, dose dense, (every 2 weeks) with no cancer cells seen in the breast area or nodes at the time of biateral mastectomy. Fingers crossed that no cancer cells return.

    Take care.

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

    I just passed 5 years triple neg IBC so there is plenty of hope out here.  Just remember that each case is unique even though some may seem similar to your situation.   You don't know why their treatment failed them while ours hasn't. 

  • g94u67
    g94u67 Member Posts: 436
    edited February 2009

    Awesome thread!  I knew there were lots of encouraging success stories out there! 

    I felt like you Theresa when we lost our other sisters a few wks. ago. We have to remember our entire lives are precious and we just may not lose it to bc.

    God's in control and on the throne.  Never give up hope! 

    God bless us ladies,

    Jeannine

  • snowyday
    snowyday Member Posts: 1,478
    edited February 2009

    I understand your grieve and fear, I feel the same way when a member doesn't win this fight, it's so sad.  Try and focus on the good stories, it sounds corny but helps.  Prayers to all of us on this board.  REALLY!

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Bump, all the long term TN survivors please come to add your story for encouragment !

  • candie1971
    candie1971 Member Posts: 4,820
    edited February 2009

    Teresa, I know exactly how you feel. sometimes I tell myself I am gonna stay away from this site...too sad at times...but of course, I don't. I love you all here and I want to be here for everyone.

    Congrats gmr52 and alwayshope on your 5 years!!!! Wahoo!!!!! Yahoo!!!!! Wow!!!!!

     We have to keep ourselves wrapped in good news as often as possible.

    Luv ya all...hugs and prayers,

    Candie

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

    in my fifth year since dx bilat mast and chemo, i too feel an extraordinary sadness when we lose a sister. more than i like to remember, so many beautiful women but each time i come to the same thought...

    we must carry on for them, living life to the fullest, that is what they would want us to do.

    i wish i could say it gets easier, it hasn't for me.

    what makes it a bit better, is knowing we carry them in our hearts.  

  • Nadine54
    Nadine54 Member Posts: 230
    edited February 2009

    My dear lady.  With a history of many forms of cancer this for me the new one to add to the long list.  I am only 54.  I ask myself the same things.  But you know no matter what we are not alone. I am with you on how do we face the scares and all...but you know we must not give up.  We have to fight.  Our fight to move on is the strength for others and no matter what we are a special group. We are woman and we are the back bone of our families.  In that I sometimes feel we put way to much pressue on ourselves.  Everything for me moved so fast.  Now I wait for my surgery in two short days.  But you know my friend this is the hardest damn thing of my life also...but I keep the thought that one day there will be hope for a cure for others.  For now somehow we have to find the strength not to blame ourselves because in fact its not our fault.  As I take the next step in those few short days, the thing that I am keeping fresh and firm in my mind is I am not alone.  Some may think its pretty sad because I find the strength to face this head on but knowing so very many have walked this same path before me does help.  My friend, be strong.  My thoughts and prayers are with you during this.

  • MicheleS
    MicheleS Member Posts: 937
    edited February 2009

    Theresa,

    I feel the same way.  I've been crying 'bout Twink for days now and I didn't even know her.  I sometimes feel like "why bother" when I could die anyway.  Then I look at my kids and I know I need to fight.

    Michele

  • PineHouse
    PineHouse Member Posts: 416
    edited February 2009

    I agree with Everyminute that there are many triple negative survivors living at large, they just don't necessarily post on these boards.

    Bear in mind the words "triple negative" is quite new.  Those who survived breast cancer 10+ more years may not know they are actually triple negative.  In those days they only tested for ER and PR status.

    I myself have been a triple negative since dx in 1996.  I am now metastatic and have been for almost 3 years, but I'm not symptomatic, still busy with things, and neighbors don't even know that I have cancer.

    My feeling is that you should be aggressive with treatment when you are first diagnosed, then after that you just need to continue living a healthy life and enjoy life, family, friends....  It WILL work to your advantage.

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited February 2009

    To each and everyone of you..........THANK YOU SO MUCH.  I now know Im not the only one scared. I was having a horrible moment when I wrote that and thank you all for running over and picking me back up.  Tonight Im going to sleep (thank you ambien) and tomorrow Im going to look for the positive things and smile.  Its a step, I guess.

    You guys are the best.

    Teresa

  • josiemarie
    josiemarie Member Posts: 11
    edited February 2009

    I'm triple neg,2.4cm grade3 tumour with one pos node. I had so much vascular invasion they expected the cancer to return before the end of chemo(4xfec,4xtaxol) also had 6wks radio. I was given a 35-45%chance of 5yr survival-and I reached that last month. Not only am I still here but I'm still cancer free.They still want to keep an eye on me for the next 3yrs,then it will just be yearly mammos. I had my birthday in october and was walking on air all day- I was so happy to have hit the big 50! I've had a very unlucky life, perhaps it had all being saved up for now!!

    Josie  x

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

    I'm proud to say I'm 3 and a half years out since diagnosis and feel fine!

    I believe there are many women out there who have survived bc triple neg as well as other subtypes and are just moving on and living their lives. Not all of us are addicted to BC.org!

  • Boo46
    Boo46 Member Posts: 539
    edited February 2009

    Hang in there Teresa. I so know how you feel. I have really pulled back from the boards over the last few months as every time I longed on I would get upset again. Each beautiful sister we have lost has felt like a physical blow. I felt as though I was reverting to panic mode with ever new ache again. It is just too important to me to stay away though.

    I am trip neg, stage 3 (5 pos nodes), 2yrs and 8 months out and NED. There is hope!

    Hugs,

    Sue

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

    Hey Checkum, I got your squares today and they are absolutley gorgeous!

  • josiemarie
    josiemarie Member Posts: 11
    edited February 2009

    Hey Teresa, I hope all these posts have helped you. Remember no matter what the odds are somebody has got to come out on top and you have as much chanch of being there as anyone else has.I've lost dear friends along the way, which just makes me pray harder for the day when this awful desease will be a thing of the past.

    Big hugs ,Josie x

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Josiemarie

    How did you know you had so much vascular invasion if you just had 1 node positive? Or was it identified by path report that it was much blood vessel invasion not lymphatic invasion? Sometimes I get confused with these two and my doctor told me they don't see any vascular (blood) invasion but they saw micro invasion with lymph node that was why I had micro mets of 1 mm in one sentinal node. I saw you had one positive node. That's not the same thing as you had with vascular invasion, right?

     I think, Josie you can take a breath because for TN after 5th yr, the recurrence rate is low.....

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

    Vascular (blood vessels) invasion is different than lymphatic (lymp nodes) invasion.  Usually they see this on a biopsy.

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

    Sorry, I see you already new this.  :)

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Do they see the vascular invasion on a mast.? I had mast. and they checked and said I had no vascular invasion. Is it possible they don't tell from biopsy but from actual the tumor took from mast.?

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

    The should be able to tell from the pathology done at the time of mastectomy.  Do you get copies of all your reports?  It should say what the pathology findings such as clear margin, vascular and lympho invasion ect.

  • Judy_Mc
    Judy_Mc Member Posts: 32
    edited February 2009

    Yes you can do this.You do it one day at a time and before you know it you won't even be thinking about it everyday. Hard to believe I know but true.

     I don't come here much any longer as I am right at 6 years since DX and doing fine.I had a large tumor,5 to 6 cm and neg nodes. I was on Arimidex for 5 1/2 years and endured all the side effects but was happy to stop at 5 1/2 years . I think at some time around 4 years I stopped thinking of myself as one big breast Cancer! Now I don't think of it at all except when I check back  in here once every couple of months. I rarely post any longer as I have other things to think about and do..I remember feeling like you do but you really can do it,I did with Gods help.

    These boards saved my life back then.I don't think I could have done it without the support of the dear ladies on these boards in the beginning.I so remember the help they gave me on those sleepless nights.

    So hang in there,you can do it too.

  • josiemarie
    josiemarie Member Posts: 11
    edited February 2009

    Had my op and treatment in the UK.I dont know if the procedures the same but had lumpectomy and aux node clearance and a week later had the lab results, when I was told out of the11 nodes they had removed only 1 was positive.However there was a lot of vascular invasion which wasnt good news.Cancer cells can travel via the blood or lymph systems. Apparently it means that the tumour is starting to make its own blood supply and the likelyhood of it having already spread through the blood is high! But I'm still here girls and I'm not the only one.There are a lot of us out here who despite a poor prognosis are years down the line with ned .I'm not out of the woods yet but I'm sure on my way!

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited February 2009

    I popped on to see if I had any responses...WOW did I.  Yes, Josiemarie this does make me feel better. Thank you so much.

    Judy, I can't wait for the day It doesn't even cross my mind. I also hope to one day be able to sleep through the night again.

    Sue, It sure does help to know that Im not the only one who freaks out on the new aches and pains.

    Thank you all. I am hanging in there. I go to my first 3 month check up on March 9 and I have lab tomorrow for that appointment.  I guess that doesnt help with the anxiety.  On a positive not Im going on a cruise with my sister, we leave sunday for 7 days.  Ive never been but Im looking forward to some sunshine and relaxing. 

Categories