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Calling all TNs

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Comments

  • Meece
    Meece Member Posts: 10,618
    edited July 2010

    My onc says you are almost 100% out of the woods at 5 years. She actually stated something like a point 2 percent chance of recurrance of TN after five years.  She clarified that it did not mean another variety wouldn't show up. She also says the year starts at diagnosis.  After all, you survived having it in your body and who knows how long that was.  I have heard that TN doesn't grow over long periods of years, because it is so aggressive it can grow in a short period of time.

  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    I agree with you and your onc Meece..it seems like most of us have had tumors that just appeared out of nowhere...had a clean mammo in Aug. 08..found the tumor in Jan. 09...6 months later...I really feel that if I would have waited 6 more months to have it checked out (which i wouldn't have..but just a scenario)..I may not be here typing this right now...so freaking aggressive....which..and I know we have hashed this out..but really..could it be something that we "got into"..when we were very young..or was it something that happened to us in our 30's and then "it' started...just mulling over this...but..like Pameljo says....guess it really doesn't matter..it happened and we are all dealing with it...

    Here's to us all getting through those first 3 years...!  I know that I count them down...on July 20th I will be 16 months out from diagnosis..every month I think..ok..one more month closer to the 36 months....funny the games you play...I still look at my Outlook calendar to see what I was doing last year at this time..whether I had chemo or not.

    My family and friends talk about the weather, etc from last summer..last summer was like a dream to me..Chemo affected me not so much physicall but mentally...I dont' really remember much of last summer at all!  

  • Morgan513
    Morgan513 Member Posts: 303
    edited July 2010

    I can sympathize with you Titan.  I had chemo 2 years ago over the summer.  Just the feel of weather brings some of the bad memories back!  But, I am also counting down to 3 years.  I'm thrilled that I've past the 2 year mark!

    Somewhere on these boards, someone posted graphs of the recurrence risk.  I distinctly remember TNs being high, peaking at 12 +/- months then rapidly beginning to decline so that by about 3 years out, we are equal of ER+'s.  

    Lorrie 

  • Meece
    Meece Member Posts: 10,618
    edited July 2010

    That's what my onc told me, That the recurrance is so high but drops off faster than other BCs after you pass the 5 yr mark.

  • smithlme
    smithlme Member Posts: 383
    edited July 2010

    Well crap. I was having a biopsy around my 1 year mark and was diagnosed 369 days after my first diagnosis. Two different primaries. TN and BRCA 2+ must be a double whammy. I have gone two years and 3 months since my second ride on the cancer-go-round. Let's hope the ride's over!

  • Meece
    Meece Member Posts: 10,618
    edited July 2010

    YES, let's hope it is!!!

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    I was exactly 6 months past diagnosis till recurrence.  I'm not BRCA+, and BC does not run in my family.  I recurred I believe because my breast surgeon did not remove all the disease during my bi lat mas....... 

    Even at that, my onc says that with primary diagnosis, and the recurrence, according to all calculations, this "episode" in my life would only shorten my expected life span by 2.4 years.  Hell, my husband has shortened it by that much just by jumping out at me and scaring me.

    TN is far easier to kill than those hormone positive cancers.  Wish people would quit looking at TN as terrifying.  The more aggressive the cancer, the better the chemo works on it. 

    Girls, this is my fourth go round with cancer.  A never say die attitude goes a long way, as well as being a lumpaphobe LOL  Just remember, if you recur, you can still survive.

  • brendaw
    brendaw Member Posts: 19
    edited July 2010

    My Onc told me the same thing about the more aggressive cancers being easier to kill.  Heres hoping he is right.  First time around, was a TN and the second time primary was ER positive, but a grade 3.  I always did like the aggressive type. (NOT)

  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    I think they are right!  The oncs that is....My onc never seems concerned when I say..but "ONC'..I'm triple negative!!!   And he just kinda stares at me like I'm nuts...He doesn't seemed too concerned about it so I guess I will just take that attitude from him...He just said that he thinks I will be OK...I think coming from a cancer doctor that sees this crap every day...he should know what he is talking about...  My SIL did not have to have chemo...she is brac1 but her breast cancer was not related to the BRAC...hers wasn 100% er and pr positive..she did not have to have chemo..I don't know..I really think that there are 2 sides to this..sometimes I think she wishes that she could have had chemo..despite hating have chemo..I feel like I actually did something to kill this stuff.

    Oh and Brenda...I don't have any numbers but I think alot of tumors are grade 3....you definitely are not alone...most of us are grade 3...It used to freak me out but it doesn't anymore..it is just a number to me now...

    And Pamelajo...again you made my day with your post....your DH sneaks up on you and scares you huh??? Funny...he must be a wonderful guy...Mine likes to blow the car horn when he pulls in the garage if I'm out there..scares the heck out of me...He is 52 but sometimes I wonder if they ever do grow up....my dh is quiet and holds things inside..my daughter just told me the other day that after my lump..when the dr told him and my parents that my nodes were clean and that I had made it through surgery ok that he started crying...I look at him now and I just can't see him doing that...I hold that inside me as a precious thing....I don't know..maybe he was crying because b-4 the surgery I told him that if I died to marry again soon!   HA HA.....guess he is stuck with me for awhile.

    You all have a great 4th of July holiday...and for the rest of you out of the USA have a wonderful weekend......

  • sugar77
    sugar77 Member Posts: 1,328
    edited July 2010

    We celebrated Canada Day today.  We just had a great fireworks show that all of our neighbours pooled together and put on.  What a great day!  Happy 4th of July to the ladies in the USA.

    Sherri 

  • Summer38
    Summer38 Member Posts: 96
    edited July 2010
    Pamelajo - LOL, sooo funny! I can totally relate - my husband, as well as people at work, constantly "scare" me by creeping up on me. HAHA Smile
  • farfaith
    farfaith Member Posts: 19
    edited July 2010

    ok i went to see the radiation dr to get things going and she found a report that i was triple neg and one that sad i was er 37 %   she got on it the second biopsy says it was 37%  ER so i guess i am not triple negative i don't remember hearing that but then again when you got so much going on im just so glade she found it and told me ok one more tretment left on the 14 then surgery and radiation .

    pppinaz sorry your dr didnt fallow up i was told 2 1/2 years a go i hade fiberistic tishue then i whent back and it was bad news they wernt concerned cause i was young and had no family with cancer except my moms dad had prostate and his brother had liver i think they need to just do biopsys to make shure. its nothing to mess with good luck ill be thinking of you.

    jenn good luck!

    prayers with all girls were gona get through this!

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010

    Hi Everyone!  I haven't been on lately and I hope everyone is having a great weekend.  I wanted to share some rather disturbing information that I just found out about.  I used to live in North Hollywood/Toluca Lake are for about 5-6  years, starting about 12 years ago.  Well, I just read an article that much of the water there comes from ground wells and much of it is contaminated with chromium 6--and that they have known about it since 1986!!!  All of my health problems began approximately after a year or two of living there.  My hormones got all wacky, I started hemoraging when I had my periods, my hair started falling out.  This is the same stuff that gave everyone cancer in the movie/real story Erin Brocovich!  Anyway, the Department of Water & Power has known about this for years.  Maybe I should sue??? Any thoughts on this?

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    MBJ - I would talk to my onc first, maybe do some research and then if you do want to talk to an attorney make sure it's a reputable attorney with backround in these types of situations and that they have a good reputation with the bar.  When things like this happen it seems attorneys come out of the wood work with class action suits, so if you do go that route, be careful who you choose to represent you.      

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010

    Thank you Jenn!  Really has me a bit freaked out.  I was really poor back then and I used a Brita filter but didn't always replace it.  I appreciate the advice regarding an attorney.  I have a few lawyer clients that will give me an honest opinion.  I just didn't know if I was over reacting, you know?

    Have a great 4th of July everyone!

  • MonikaV
    MonikaV Member Posts: 148
    edited July 2010
    Hi Ladies, Happy 4th of July! I just want to share with you that after my scare with the open heart surgery , the cardiologist gave me the go ahead to start Chemo again. I will start Taxol once a week for 12 weeks this coming Jyly 8th(I am scared out of my mind) Many of my friends and the doctor assured me that Taxol has less side effects than AC. Is that true? Or they are just trying to comfort me? I no longer have a port or a pick line. So I hope they can get my veins everytime. Have a wonderful weekend everyone!Smile
  • cleob
    cleob Member Posts: 8
    edited July 2010

    Hi  Ladies,

    Heard a lot of pleasant and unpleasant stories about TN but need to be advised to allay my fears.Was diagnosed in early april with aggressive idc bc on my left breast eventhough I had two negative mammograms results in sept. and dec. of 2009. my core biopsy indicated er+,pr-,her-. My er+ was a weak 5% positive. Does this dx classify me into TNS group? I started chemo on May 21st on a weekly taxol for 12 weeks followed by AC (ADRIAMYCIN + CYTOXAN) 4 rounds at 3weeks interval, then possibly a bilateral preservative surgery. I want to be sure that i am getting the right treatment for my diagnosis and if anyone has had a similar experience, please fill me on this. We all have to kill this monster "C" and with faith and a positive attitude, we shall succeed.Have a wonderful 4th of july celebration.

     LOL

  • workmother
    workmother Member Posts: 13
    edited July 2010

    clelob - I am also "weakly" positive. My biopsy came back ER+ 50% but my pathology after my lumpectomy came back less than 10% and my onc actually sent out for an Oncotype to try to resolve the issue and that came back about 5%. So technically I'm considered a triple negative. I originally didn't think I'd be doing chemo with Stage 1 and no nodes involved, but its that darn grade 3 of aggressive cells that calls for the chemo. Do you know what grade you are?

    I started AC/T dose dense on 6/23. Then I'll be doing radiation. Then my onc wants me to start Tamoxifen since there is a weak positive.. Your chemo treatments sound reasonable for your situation. Best of luck to you!

  • sjstrader820
    sjstrader820 Member Posts: 3
    edited July 2010

    I hear ya! I was "out of the woods" after a 5-yr clean mammogram, until the doctor did a breast exam. WHAM! Into the sonogram room, then within 2 minutes a biopsy. Wait 5 days, hear the breast cancer diagnosis again. Now recovering from my mastectomy, waiting to see if chemo is again in my future. My cancer came back in the same breast, with dcis near the original surgery site as an additonal surprise. All we can do is hang in there and hope for the best. Good Luck to you.

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    I did have the AC + T, which seems to be the favored chemo for TN's.  All are aggressive chemo's and have good results.

    Is Taxol easier than AC? Well, for me it was somewhat easier, but came with a diffent type of SE's.  I did develop neuropathy with Taxol and still have some trouble with it, but I have no regrets and would do it again if I had to.

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    I had BC in both breasts, which mandated bi lat mastectomy.  One tumor was ER+ 60% and the other was only 20%.  I took Taxotere/Cytoxan.  Recurred in March.  Now there are no hormone receptors.....but my onc believes it is because it isn't a true recurrence but a progression of disease the taxotere/cytoxan killed the receptors and left the cells.  He's sure we'll get it this time.

    I just finished DD A/C.  Just had my first of 12 taxols last friday.  So far, just a little upset stomach and itchiness.

    TN is aggressive, but so are we.

  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    Yes we are Pamelajo!!!!!

    I had dd ac and taxol...I keep thinking about the difference between the two..and there was a difference....I dunno...I guess I didn't think that AC was all that bad..didn't take as long...sure there was a chance of nausea but took the pills and was OK....maybe AC was more of a whole body type type slam...Taxol..well my hair started coming back which was cool but I had more body aches and well...diarrhea....plus it took longer..way too long..but my mind felt clearer on taxol  that Ac...on AC I felt like I was on a perpetual buzz....actually chemo sucks no matter what it is but we have to do it....the main thing was getting it done and over..and you are almost there Monica! 

    Talked to a friend tonight..her sister was just diagnosed..gave her the bco address...she had a clean mammo 6 months ago, found a lump,,just diagnosed. stage 3, one node...I'm hoping that she comes on here so we can be with her...Her sister doesn't know what this lady's pathology is but I'm thinking she is ONE OF US...because it came out of nowhere...

  • tibet
    tibet Member Posts: 29
    edited July 2010

    sjstrader 820

    May I ask if you had mastectomy the first time, would you think it would have prevented the recurrence? They say usually TN has very low recurrency after 5 yrs, something like .2%. (We need Meece to come to confirm it as she mentioned once.)

    I had bilateral mastectomy and I hope with mastectomy, it prevents future BCs......

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    A/C wasn't bad till the whole heart damage part and then the cummulative effect on Tx #4.  Ugh.  Still reeling from that.

    Taxol seems to not make my tummy so sick, but the itchiness is insane!  Dramamine, can you believe it?  Pharmacist said benadryl sometimes quit working, so he suggested dramamine.  LOL  I took it and haven't itched since.  God bless good lookin smart pharmacists. 

    I honestly don't know how I will get through the next 11 weeks of chemo.  My head feels clearer too, but my heart just isn't in this anymore.  I think it's the sum of the whole (or hole) that is my life at the moment.  My mother in law finally was put in the hospital for her mental disorder.  Thankfully now I can rest when I get home from work instead of fighting with a 75 yr old to get her to eat and go to bed and not be physical with me.  And all my kids are home from vacation, so I don't have to worry about them. 

    I'm taking a vacation day myself this week to go to a local water park.  I need it.  I want it.  I'm doing it.  First I have to find a swimsuit to fit my more voluptuous bod LMAO.  Easier said than done.  These TE's make my boobs stick out like torpedo's and my poor butt is the size of a baby elephant.  Well, not really, but all the bikini's I always wore hid from me......  can't find a single one of them in my drawers and I'm pretty sure if I did, there wouldn't be enough material to cover half a thigh let alone my "junk". 

    awwww, water park, here I come.  Even if I have to wear board shorts and a tank top.

  • jenn3
    jenn3 Member Posts: 388
    edited July 2010

    Pam - I'm sure you'll find something that works. Sounds like you need a break -   Have a great day at the water park!

  • MBJ
    MBJ Member Posts: 3,671
    edited July 2010
    pamelajo:  Wow, you really have been through alot!  I am so glad that a heavy burden has been lifted from your shoulders.  Yesterday my husband and I celebrated our 8th year together (we met on the 4th) and we went to a Mexican Restaurant for lunch. I ordered the El Grande Margaritas without reading what they were and the waitress brought out what could easily have been 4 margaritas in one glass LOL--Now, I don't usually drink expecially with the BC diagnosis, but I have to tell you, yesterday I laughed from the moment they brought out those ridiculous looking margaritas till we got home.  I realized it was the first time I had really laughed in a long, long time.  I know that going through chemo sucks, but you enjoy your day at the water park and let yourself laugh good and hard.  I know that you will get through this because you are a true fighter but laughter truly is the best medicine!
  • Titan
    Titan Member Posts: 1,313
    edited July 2010

    MMBJ...I'm glad you enjoyed those margaritas!   You deserved them....and I know about the alcohol thing and everyone has to do what they think best...but..well sometimes I feel guilty if I drink but then again there is no correlation between TNBC and alcohol...it says that right on this website...so...here we go ahead to what may have caused it...anyway..

    Pamelajo..have fun at the water park!  My DH just threw me in the swiming pool today...and it felt great!   I too have the extra weight too...I wear a tankini...and feel like a tank in it..but whatever....I've seen worse at the beach...

  • cleob
    cleob Member Posts: 8
    edited July 2010

    workmother: thanks for the comments. nice to know that we share the same dx and am also grade 3. I have no doubt that my treatment regime is appropriate and i eagerly look forward to the full recovery. To all the women going through this cancer journey, hang in there with faith and a positive attitude, the battle is already won.

    LOL 

       

  • gillyone
    gillyone Member Posts: 495
    edited July 2010

    I think it is hard to find a TNer who is NOT grade 3!

  • Pamelajo
    Pamelajo Member Posts: 124
    edited July 2010

    Margarita's!!!  I had a red apple margarita Sunday with lunch!  Thank goodness there is no correlation between it and TN.  .....cuz sometimes a glass of wine or an ice cold adult beverage is just the thing to take the edge off.  Sometimes, nothing goes down smoother than a cold beer on a hot day. 

    oh, come on waterpark!  I hate being at work today LOL  I wanna be independently wealthy. 

     Got my new swimmy suit yesterday....  Took my daughter with me shopping.  She goes "mom, it's the water park.  You will look stunning compared to some of the beached whales there.  It's like Wal-Mart in 100 degree weather, only with water".  So I got a tankish top and a pair of matching board shorts.  Covers what needs covered and shows off what I like LOL

    We've seen some scary things at Wal-Mart when it's hot, and come to think of it, when it isn't so hot.

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