Triple Negative Breast Cancer and Chemotherapy

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    I have the other thread bookmarked as a favorite topic.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • puddingirl84
    puddingirl84 Member Posts: 120
    edited March 2010

    justpayton-I am so sorry. But I am wishing you well and hoping that you'll find the strength to continue your battle. 

    Puddin' 

  • justpayton1
    justpayton1 Member Posts: 786
    edited March 2010

    Thanks to all of you..believe me I am NOT about to give up or lose hope. I have kids to raise and plenty of b-ball to watch.

    I kindof agree w/ the good TN/ bad TN theory...I was told today that I do infact have an extremely aggressive cancer. It has begun to grow in less than 5 months. But the good news is we found it. Now I just gotta get rid of it.

    My onc wants to start chemo Friday butr I asked him to wait until next week, so I could have the weekend w/ my boys before I head into battle again. Ideally he wants me in a PARP trial for olaparib..As I was checking out he called me to the hall. A phone call had come in  and there will be a trial here April 13th. So the info was being faxed over..So now I wait to see if I meet the critera to get in. THAN we have to decide if we gamble and wait a month..He wants to make sure that starting the chemo won't kick me out of the trial.

    Lots to think over..

    Hey Titan I forgot to tell you, I have been following Ohio state..

  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Payton..oh yeah...get rid of that freaking cancer...and kick it's ass...I will type that word...I don't care....If anyone you can do it it will be you.l.damn it...

    but do move quickly..tn moves way to fast...you want something done NOW..so get to it...I was diagnosed on Wed (actually one year ago tomorrow) and it was removed 2 days later...so freaking glad to get it out of there..I wish I would have moved a little quicker but content to have them think it was hormonal..bad me..I consider myself 6 weeks behind of where I should have been.oh well..water over the bridge,

    payton..stupid question but are you sure you are stage 4?  Isn't this the same cancer as what was there before..in your nodes?:  Wouldn't this just be a reocurrence...just me being stupid..but just wondering.

    I hope OSU does well..they are in a really toug bracket with Kansas but I guess this will test them...just as we are tested...but YOU payton are much more important..but the tournament will be something to watch while you are finding out what is going on,

    Hoping purdue will do well also..it sucks that their best player is out for the season...at this time of year I want the Big Ten to win....

  • justpayton1
    justpayton1 Member Posts: 786
    edited March 2010

    Yes, Titan I am sure this is stage 4. It states it on my path report and my onc stated that also. Was one of the questions I asked right off the bat. On the 1st pet scan before surgery in july 09, none of these nodes lit up. That internal mammary node worries me. It is located right behind my rib by my lungs. Thank God the surgeon was able to grab one of the nodes from the supraclavular, that hurts bad enough.

    I agree with you, I know the PARP is ideal but I am so scared to wait..It's already been a month since the pet and now another month. What if it hits my lung while I am waiting and keeps me from getting in the trial..OH MAN!!!  Lots of prayers..lots of prayers..

  • Kelley41
    Kelley41 Member Posts: 73
    edited March 2010
    Pathology reports are very confusing....Just diagnosed 01/10/10 after Doctor removed "suspicious" area from right breast after having a mamogram, ultrasound, and MRI and nobody was saying the cancer word.  After removal - stage 1 cancer.  Decided to have a double mastecomy and had that done on Feb 19 - Two different hospitals with two different labs doing the pathology reports.  First path report says .9cm, Stage 1, Grade 1, Est/Prog - and HER +  Second path (from mastecomy) says .9cm, Stage 1 Grade 2, Est/Prog - and HER borderline to positive (2+/3+).  Doctor sends out for a FISH test for HER status comes back NEGATIVE.  So we still have a difference with the Grade.  Onconolgy Doctor recommends to monitor me closely due to Triple Negative Status but says I am in the gray area when it comes to Chemo...How can a triple negative (aggressive) cancer be a grade 1, arent they usually a grade 3 due to the aggressive nature?
  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    Kelley - mine was less than a cm, too, and I was in a gray area for chemo and had the option of doing it.  That said, mine was grade 3 so I went ahead and did TC x4.

    Good luck and keep us posted.

    Sherri 

  • Kelley41
    Kelley41 Member Posts: 73
    edited March 2010

    Sugar77 - Thanks for the information - I am seeing a 2nd Doctor on Monday to see what they have to say.  With better education and more awareness, I think we will start seeing more people with <1cm tumors - it is such a hard decision because my 1st Doctor said if I did do chemo - it would only change the "stats" by 1% for the good.  Thanks again!

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2010

    Kelley - let me know what the second doctor says.  My onc said the absolute benefit to me was 3-5%. I figured even if the change for the better wasn't huge, I might as well do it so I didn't have any regrets down the road.  I did quite well on the chemo.  Losing my hair was the hardest but I got some great wigs and have had fun with trying different hair styles.  I didn't lose my eye lashes or brows (they just thinned a bit).  I finished chemo on Feb. 8th. If you have any specific questions, feel free to send me a private message anytime. 

    Sherri 

  • batoday
    batoday Member Posts: 27
    edited April 2010

    As I learn more about TNBC it is quiet depressing..  I have both triple negative DCIS(grade 3) & IDC(grade 2).  I've had 2 lumpectomies and waiting for the 3rd one due to positve margin again.  When I first heard I had stage 1 cancer, i thought I was very lucky to catch it at early stage.  I have to admit that hearing how aggressive TNBC is and the fact that there is no targeted treatment makes me scared.  But I am not going to worry about something that didnt' happen.  I am trying to stay positive and praying that I can live my days to come with my best.  I will enjoy every and each day I wake up until I see the glory of God.  God bless everyone here.

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    batoday...yes...tnbc can be scary...but if you read here chemo works very well on tn cancers...and you are lucky to get it at an early stage....that is a good thing!  Recurrence rate is higher in the first couple of years but then it goes down to less than er-pr positive cancers...I'm just one year out but..I feel great....I watch for anything different...but at the same time don't really worry that much about it..I don't have time..I have a job, kids, and living my life and having fun...don't get too down about it....once you get through your treatments and get out of the cancer thing a bit you will slowly stop thinking about it so much,, I come on here because I have met alot of women that have become great friends..even though I haven't met them in person,..we have all gone through alot together and it has helped immensely...

    Please..don't worry about the what ifs..chance are you will become a very old lady and forget that this crap ever happened!

  • batoday
    batoday Member Posts: 27
    edited April 2010

    Titan..thank you. I am 37yrs old now.  I dont' know how many more years my Lord will give me in this life, but I will stay strong.  I realized that God provides consolation to us by gathering people who's going through similiar problems.  This website is great.  I am already getting stronger by reading many positive posts.  I just pray that this time is the last surgery and I can move onto the next treatment step.  Thank you again.  God bless!

  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2010

    Titan and Sugar, thanks for staying on here to encourage people. It is so scary and you both have such great ways of telling the truth and helping it seem more manageable.

    batoday-my mother had triple negative, seven years ago, and was in your area, with only a 1% boost from chemo. She was 57 at the time and had other medical conditions.

    She did not have chemo, only radiation after her lumpectomy. She is alive and well.  I think a second opinion is very wise, even a third if you need it. I'm with Sugar, I was going to do the chemo if it gave me any increase in survival stat, no matter if it was small. Mine was much larger b/c my cancer was grade 3 and in one lymph node. Easier choice for me.  No matter what you choose, just be at peace with it and don't second guess yourself.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    crs319,

    I PMed you an encouraging post about KI-67 a week ago. Did you ever get it?

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Heidi..how did your scan go?  Remember you are the guinea pig!

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010

    Titan -  I think I saw Heidi posted about her scan on the new thread she set up.

    Sherri 

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Thanks Sherry!

  • Kelley41
    Kelley41 Member Posts: 73
    edited April 2010

    I start chemo (TC x4) on Tuesday - wish me luck!  In the past I have never liked celebrating my Birthdays -  This year I turned 41 Jan 2nd and was diagnosed Jan 10.  I told my husband that for my 50th Birthday - we are going to have a huge celebration!!!! 

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010

    Kelley - there is a TC thread on this website that you might want to check out.  I visited it regularly when I was going through TC and still check into it now.  It's called "Anyone on just Taxotere and Cytoxan" or something along those lines.  I can send you the link if you want, just let me know.

    Good luck!

    Sherri 

  • drsstglover
    drsstglover Member Posts: 1
    edited April 2010

    My name is Sonya and I turned 42 on Feb 28th. Found out that I had TN breast cancer on March 10th. I start chemo on April 23rd. I look forward to a HUGE 50th Birthday as well. I have two little girls to raise (5 and 9), and this is what keeps me fighting!! Good luck with your treatments.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Hi drsstglover!

    Welcome to our little group of TNBC people. Despite the label, we are all pretty positive thinkers in here!

    Still s*cks though...Laughing

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    I am not feeling positive.  I just got back from my onc appointment and he didn't seem to me as optimistic as previously.  Maybe he is the same, my reaction to his words are just not so positive.  I had a 2 1/2 cm tumor in my breast and a 1/2 cm in my sentinel lymph node.  I asked him if I am technically Stage 2a or 2b.  He said many factors play into prognosis, but he would put me at 2b or 3.  3!!!!!  I can not get my mind around that.  Also,  he said that my biopsy had come back with a hint of hormone receptivity, but my pathology from after my masectomy was cold negative, so he doesn't know if he should have me on hormone blocking drugs or not - my decision.  Also, I had news today from a lady I know with ovarian cancer.  She did all the chemo and rads, looked clear for a short while, and now she is back to chemo again.  I'm sorry to be negative; I am so depresed and feel more hopeless than at just about any other point.  The doctor had mentioned doing a scan post-chemo before the chemo process was over, and he now says it'll be every 6 months on account of my 2 cancers (the other is endocervical).  He says finding something 2 months earlier just doesn't make much of a difference in outcome - meaning you are screwed, right?  I am so depressed.  I love my children and would really love to see them grow up.  This sucks.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    violet7,

    No, I don't think you are necessarily "screwed", though I'm sure it feels that way. It just means that (for all of us) finding mets earlier via scans has proven not to change outcome. In other words, whether mets are found "earlier or later" does not affect OS. That is not the same as saying "this cancer is going to kill you". It means that what will happen is going to happen: a person could progress rapidly OR  live many more years with "chronic" cancer.

    Don't despair. Hearing that "Stage 3" description was a real shock but remember---the staging process is becoming somewhat obsolete. Newer medicine is pointing towards the biology of the tumor, not the size or even the lymph node status. TNBC is funky where lymph nodes are concerned. Though it sure feels better to be node free, NOT being node free isn't necessarily an indicator of potential recurrence. It's a crap shoot for all of us.

    If there's one thing I've learned since my diagnosis it's that there are still a lot of questions to be answered wrt TNBC. Your onc is doing his best, but treating it is as much an art as a science. You are having a bad day, like we all do from time to time. Remind yourself of that because it's normal and to be expected.

    In my TNBC and Life thread I mentioned my MSK surgeon referring to me as Stage 1, not 2a as I consider myself based on tumor size. When asked he said it was as above, staging categories are somewhat subjective and tumor physiology is where the real prognosis lies.

    I think, in your shoes, I'd still think of myself as 2b based on your tumor size, node status and *current* staging practices. But that doesn't mean your prognosis doesn't have to be worse because you are still early stage and very treatable. I'd probably seek a second opinion if your onc is unsure about additional meds.

    I hope this helps you to feel better. We all get sad at times thinking about our kids, grandkids,and all the other things we want to see before we graduate from life, whatever the cause.

    Pick yourself back up, dust yourself off, and go do something fun/distracting.

  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    Violet7:  Perfectly understandable to have down days. I know I do!  Try to remind yourself that with today's treatments, the vast majority of women with early stage BC (yes, even stage 3A considered that) will not die from this disease.  I also read that the AJJC staging will become obsolete - other variables, as they are discovered, are just way more important indicators of outcome.  Also the biggest danger is mets - and that can happen to any of us from any stage, so don't get hung up on the "stage 3."   I'm sure tomorrow will be a better day for you.

    (((((Hugs)))))

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Thank you Heidi and Luah...you two are always a calming voice(s)

    Like you said...you just never know....everyone has their sad moments....breast cancer sucks..but...I really think that the farther you get away from it and feeling good..well...it does get better...My SIL is two years out but still has a couple of issues..she said that sometimes this cancer rears its ugly head in her mind..I said just push it back..get the hell out of my head and my body...!  Easier said than done I know..but I think you have to believe you will be OK...and if not..well deal with it when the time comes...right NOW..you are all doing OK..enjoy it! 

  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    Titan, so right!  As I near the end of my treatment, I worry about being out there "on my own."  But somehow in my heart I really believe I will be okay - maybe because I've been feeling so well. And if the day comes, when the cancer recurs, then yeah, I'll deal it with it then.  Meantime I will have enjoyed (I hope) a whole lot of good days, months, years....  

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Believe me Luah you won't be on your own...every 3 months to see your onc...mammos, blood tests...the treatment may be over but visits to the onc are not...and that is a good thing..!!!   Plus YOU know your own body...thinking back, before I was diagnosed...I really think that I should have known that something just wasn't right..I put it off to premenopause....I just know if I start feeling that way again that something is wrong...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    I always hated all the "think positive" crap.

    However, a friend of mine mentioned something that *really* rang true with me:

    It's like the bell in The Polar Express... you have to believe.

    I really liked that analogy.

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    You know, I think this is the post-chemo freak out that everyone talks about.  It really took by surprise because I generally have a fairly positive frame of mind, amd not an unnaturally positive view either - realistic, but hopeful.  Thank you all so much for talking me down.  You are right.  And I'll go ahead and stick with the 2b, although I have seen a couple of places where having a positive sentinel node puts you at 3, I've seen more 1 positive node w/ a 2 1/2 cm tumor is closer to 2b.  I was hoping to slip under the bar to a 2a lol.  I have to remind myself of all the positive things the onc has said as well, for instance that the cancer has a greater chance of not coming back than of coming back.  It is a crap shoot, like you say, hhfheidi.  And today it's all good as far as I can tell.  So <deep breath>  thank you guys so much.  And Luah, chemosabe, you are not alone.  We are here for you.

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