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Podcast: Hope After a Triple-Negative Diagnosis

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Comments

  • Shirlann
    Shirlann Member Posts: 60
    edited September 2012

    Hi sisters, I am 14 years post treatment with Triple Negative, doing great.  Don't despair, just another thing.

    Gentle hugs, Shirlann 

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    Good luck and God's arms surrounding you and the surgeon tomorrow the5owens. :):):)

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    @journey4life-the wondering may take awhile. I still do it sometimes! I think you'll always wonder, you just get less paranoid about it. It lessens, but do far it has not gone away.



    @Steph-my prayers are with you and your surgical team tomorrow. Keep your chin up! Every day gets better!

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    Thank you Shirlann . . . LOVE LOVE LOVE to hear "success" stories . . . helps me EVERY time I hear a good report. . . I'm half way through a 4 round taxotere/cytoxan regimen - Round 3 is tuesday . . . . THANKS THANKS THANKS

  • cjw75
    cjw75 Member Posts: 10
    edited September 2012

    Hello, I am new to this board. I was just DX with Triple Neg Breast Cancer 8/17/2012. I am 37 yrs old and will be going for a double matstemy on 9/13/12. I have read all of your responses and it has given me hope. Looks like I have found another place to come and get advice. Thank you!

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    @cjw75-I wish I would have looked for something like this when I was diagnosed! Welcome, but I wish you didn't have to travel our road. Be yourself and feel free to say or ask anything!! I'm almost 2 years out with no evidence of disease. This is doable!!! We just had a comment from a 14 year survivor the other day!! Woohoo!'

  • journey4life
    journey4life Member Posts: 223
    edited September 2012

    caperry79 - this may sound like a dumb question. I hope you'll bear with me. How do you know you have "no evidence of disease"?

    cjw75 - so sorry you've joined us TNs but welcome! BCO is a great resource; one of the initial challenges for me was to learn the abbreviations. There's a thread that lists all of them - I don't know how to put a link here. I'm sure someone else does.

    We can do this!

    Lisa 

  • Shirlann
    Shirlann Member Posts: 60
    edited September 2012

    Hi journeyforlife, usually you have some symptoms that send you back to your onc.  If you have no symptoms, or any tests showing cancer any place else in your body, you are "DANCING WITH NED", or, no evidence of disease.  I am 14 years post treatment and hardly ever think about it anymore.  I was Tri-Neg with a Medullary tumor.  An obscure sub-type that took them 3 months to diagnose.  Grrrr, really was a horrible 3 months, they thought I had Lymphoma, ended up sending my slides to White Plains, NY.  So we all are scared for a few years, but this goes away.  Curiously, Tri-Negs who get to 2 to 3 years post treatment, THIS IS GREAT NEWS!!!, almost always have no recurrence, no one knows why.  

     Gentle hugs, Shirlann

  • Sandlake
    Sandlake Member Posts: 108
    edited September 2012

    cjw75~ I am also TN, having a BMX w/reconstruction on Sept 10th.  You should join us on "Sept 2012 Surgery".  Wishing you the best!!

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    Lisa, you've probably already seen Shirlann's post! I have tumor markers done thru blood tests, and a chest x-ray every year. No more mammos for me!! Yea!! I check my neck area at least every month, just like a self breast exam. I just keep an eye (and hand) on the lymph nodes in my body. As of my visit in October, I will start seeing my oncologist twice a year instead of every 3-4 months. At my 5 year mark we celebrate!!



    My oncologist has also said this stuff comes back fast, too, or not at all. But there are women on here who have reoccurred 6 1/2 years later! Always vigilant, I guess!



    Good luck with treatment and keep in touch!

    Christine

  • cjw75
    cjw75 Member Posts: 10
    edited September 2012

    Thank you for the warm welcome. I believe I also did the Sept Surgery Thread. I haven't checked over there yet. I live in Maryland and have lived here for 7 years. I have been told that the cancer is contained to the breast...is that good? I am also told it is early and very treatable. I "caught" it early through a self-breast exam and it has been a rollercoaster ride for the last four weeks. I have took the gentic test to find out about BRAC1/2, won't get that back for a few weeks. I just saw my primary dr this morning so she answered a lot of questions and it was so nice to talk to a DR that wasn't all about business.

    I do have a question. I am thinking a month down the line...when did you all start looking for wigs? Did you buzz your hair before you started Chemo? I am trying to figure out the best way to approach that part with the kids.

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    I bought my wig on round 1 day 1 . . . probably not the best day - but I felt great during day one and two because of the steroids.  I suggest going to wig shopping fully "made up" . . .I did NOT do that, and so nothing really looked good (I did NOT wear my contact lens, I did NOT wear my foobs, I did NOT have make up on). 

    On day 14-15 my hair starting falling out in clumps - we buzzed it day 15 . . . I still have little 1/4" stubble but it is really thin in places, so I would have had to start wearing the wig anyway . . . I may have jumped the gun by a few days, but not by much.  My eyebrows are still about 1/2 there - I have not had to pluck any (a daily occurrence pre-chemo), but they are not GONE either . . . arm pit hair is NOT growing after the last shave . . . leg hair stubble still there, but I haven't shaved in weeks . . . pubic hair mostly gone.

    I am on day 39 . . . half way through . .  round 3 is 9/11 and round 4 is 10/2 - I'm taking taxotere and cytoxan.

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    I just sent my post somewhere in cyberspace!! Oh well!

    @cjw75-I never wore a wig. I had one that looked great and fit great. I can't tell you why I didn't wear it, but I wore hats. A few were made for me, some I already had. My hair fell out exactly 2 weeks after my first treatment. My daughter buzzed it on Thanksgiving Day. I sobbed my face off. I finally realized I WAS a cancer patient! It hit pretty hard. My great niece and nephews were over for dinner, and were a little freaked. I told them I had gotten real sick and the medicine they had to give me made my hair fall out. I told them I had Em buzz it off so it didn't fly around and get in everyone's food. They were ok! Kids are better at handling it than you think. Just be honest with them.



    Good luck with everything and know we're here praying for you and sending you positive thoughts.

  • journey4life
    journey4life Member Posts: 223
    edited September 2012

    cjw75 - when I started noticing a few hairs coming out, I invited 2 friends and my mom for a potluck and we buzzed my hair fairly short (but I still had hair). Then, when it really started coming out (a little over 2 weeks after first tx), I called a friend and she buzzed it VERY short. It gave me a sense of control and kept my hair from looking scraggly.

    I also told a young girl that I was taking medicine that made my hair fall out. She was totally fine with it. I also asked her if she wanted to rub my head and of course, she did. We both laughed at how funny it felt.

    I decided it would be too hot for wigs so I chose baseball caps. I'm glad I went the way I did.

    Be sure to let us know what you decide and how your kids do. ((((hugs))))

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    ROUND 3 - the RIGHT nurse put in an (almost) pain free IV - that was 3/4 of the battle for me today before it started.  My doc said to "scale it down" to not expect so much out of myself - that the tiredness/weariness and weak/sore leg muscles will probably escalate - my hemaglobin count was a bit low - he said THIS IS WHAT THESE DRUGS DO - "you need to lower your expectations of what you can do" . . . ha ha, my husband (sweet servant man that he is) said "I've been telling her that for days, maybe she will listen to you."  I was GANGED UP ON! (ha ha ha ha)  OK, so I'm going to "scale it back" and do less and quit when I'm tired.  Today, already feeling the tired . . . so I will try to do nothing for the rest of the day. 

    THANKS FOR ALL YOUR GOOD WISHES. 

    Would love to hear "YEARS OUT AND CANCER FREE" stories coming my way from TN people.

  • cjw75
    cjw75 Member Posts: 10
    edited September 2012

    Thank you for the advice on the hair. I am thinking of getting it cut real short before the first chemo...almost shoulder length right now. Also, thinking of looking at wigs at the first meeting i have with the chemo dr. That is probably when I will have a hard time. Right now, I have a person in my life telling me that I haven't accepted what is going on with me, but I feel like I have...just doing one day at a time, one thing at a time. First, surgery...then, i will deal with Chemo. Just want to be prepared. Thank you.

  • LynnME
    LynnME Member Posts: 17
    edited September 2012

    Cjw75, I had hair half just below my shoulders and cut it really short a week before I started. Wanted to donate but didn't not long enough they said. 14 days in and it would come out by the hand full and felt really odd. I had my 13 y/o and dh buzz me. I bought a wig on day one too, only wore it a few times after all tx done, too hot, scratchy. I liked fleece hats and scarfs, it was the start of winter here in Maine. I only wore e wig for the first two weeks back to work in feb, then ditched it and never looked back. 9 months pfc and it is about 1 1/2 inches long. Looks like it did just before I started. Moving on with life, found this site and it has-been a god send. There are wonderful women on this site who are always there to help.

  • tanya01
    tanya01 Member Posts: 2
    edited September 2012

    Hey everyone,

     I have been reading these boards for the last few days.. I am having a really rough week... I was 29 when I found out  I had cancer.. and to top it off I was triple neg. and BRAC1+. I will be one year out from chemo this Oct. I did 4 AC and 12 weekly taxol. I have also had a double mastectomy. I have been trying to fine some good information on triple neg but I cant seem to fine anything that is up to date. I am so scare of a recurrence that I have now had a bone scan in Feb and head MRI in June.  And not all of a sudden I have been having weird chest pain. Its hard to describe. It kinda fees like heart burn and my chest feels tight. So now I am freaking out that its in my chest wall or lungs..  I wanted to beat this as I know we all do. I just feel like I am failing. I was told I had a pretty good prognoses. I had clean margins and no nodes involved and it was just in my left breast. They told me that I had a 81% chance that it WONT come back and a 19% change that it will. Its really hard to keep hope with those number. Don't get me wrong they are GREAT numbers but they are just statistics, and per the stats I should not even have breast cancer at my age. I feel like  I am losing my mind...    I have a question.. what is considered your cancer free date?  The day you have surgery or the day you are done with chemo?  I just want to know when my 5 year will be up. Either in April 2016 or Oct 2016.

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    Hey Tanya01! Welcome to our site! Please know we ALL go thru thinking its back. I consider myself cancer free as of my surgery date. I had chemo before, so when my pathology came back clean, I was thrilled! For the first 2 years I went back to my onco every 4 mos with a CMP, CBC, and tumor markers. This past June I had a chest x-ray. For my last 3 years I will see my onco twice a year with same labwork and a yearly chest x-ray. I consider my cancerversary Oct. 22, the day my diagnosis was confirmed. It just makes me feel better to watch those months and years fall away behind me! Personal thing. Talk to your onco about what you should do to watch this crap! Tell him your fears. I had a PET scan as a staging tool, and I'll be asking if maybe one this year may not be a bad idea. My genetic testing came out negative for BRCA 2, but inconclusive for BRCA 1. I have an anomaly in my cell structure Myriad labs has never seen before! I call myself a genetic freak of nature!! Answers an awful lot of questions from my past!! LOL.



    Keep your head up and know you are not alone. This is scary shit we were diagnosed with, and no one can tell you how to feel about it or if you have accepted it or not. You'll get lots of prayers and positive thoughts from all of us!

    Christine

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    Fern you didn't get a MediPort put in? I hate needles, so my port was a Godsend. You do need to baby yourself a little. You'll get your energy back. For now just nap! It took me a few months to get mine back, and I was depressed the first summer, but now all is well! Keep up the positive attitude!!

    Christine

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    No port - just 4 rounds - guess they thought it was not enough sticks - I was o.k. with that until IV #2 on Round #2 blew a vein and they had to put in #3 (#1 she wiggled it around awhile and quit - OUCH) . . it was NOT a good day, Round #2 . . but yesterday - Round #3 - needle went in first time, and stayed - no mark today . . . I respectfully requested the GOOD IV nurse . . and she said o.k.  THANK GOD.

    I was not offered chemo BEFORE surgery - my only conclusion on that is that I was merely stage I - so maybe only on the higher stages they give chemo first? 

  • laura_g
    laura_g Member Posts: 7
    edited September 2012

    I asked my mo about surgery before vs after chemo and she said that for larger tumors, they sometimes do chemo first to shrink the tumor prior to surgery. My tumor was only 1.5cm so I got surgery first.



    Tanya, when I had hodgkins my doctor said they begin counting recovery date at diagnosis, when your treatment begins. I always counted from the day my treatment ended though. That just made more sense to me. Especially because I was in treatment for almost a year. It felt wrong to say I was a year out just a month or two after my last chemo.



    Good news! My PET scan scare from a few weeks ago was a false positive. MRI shows no brain mets. Yay!

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    Hey, Laura this is great news!! We love good MRIs!



    I think cancerversaries are whatever you need them to be. I like watching the months turn into years. I'm almost 2 years out from my diagnosis. Then comes last chemo. Then comes surgery and path report. I say almost 2 years, and that's what my onco uses, too. Just makes me feel better. Glad to read of your good news.

  • Luah
    Luah Member Posts: 626
    edited September 2012

    I had surgery before chemo, and that is the date I use.... all the detectable cancer was removed at that time, and I have been NED ever since.... so as "cancer-free" as anyone can determine. I'm counting off the days to 3 years, and tanya, you'll be here before you know it. 

  • FernMF
    FernMF Member Posts: 274
    edited September 2012

    Thanks. I think I'll use my surgery date as well, so I am 4 months out. Not much. But it counts.

  • journey4life
    journey4life Member Posts: 223
    edited September 2012

    I'll use my surgery date since I had that before chemo. I'm 7-1/2 months out! And I'll count every single month because they all count.

    caperry - the anomaly just makes you one of a kind! Enjoy your uniqueness.

    tanya01 - welcome! I too am feeling fears of recurrence. I've never been one of those people who sees a doctor for every little thing. What if I don't pay attention to something and it turns out to be f*cking cancer?

    laura - Great News on your MRI!!!

  • caperry79
    caperry79 Member Posts: 28
    edited September 2012

    Steph please know I am praying for you every day! I hope you're feeling well. Every day is one day closer to no more pain and being able to get on with chemo and the rest of your life!

  • Lanikaibabe
    Lanikaibabe Member Posts: 2
    edited September 2012

    Hi everyone... I REALLY need to start contributing to the boards.  I am almost at the 1 year mark of diagnosis.  Let's just say, 1 year ago I knew I had a lump (I found it myself) and I was waiting to go see my primary doctor... and then the rollercoaster ride began.   I'm all through with treatments  (surgery-lumpectomy, left breast, AC and was highly allergic to taxanes... so had one round of Taxol and switched to taxotere for tolerance and had to be removed from it -- so made it through 6 out of 8 rounds of chemo).   Was doing well with radiation until I suffered 3rd-degree burns.  I made it through all normal treatments and only made it to two of the boosts and had to discontinue (only had a few to go).   I'm currently on a clincial trial for Metformin and am doing my best to treat this with nutrition and exercise... (that's another story due to residual pain from the taxanes....) But, it's been a year, and I'M STILL HERE.   I learned a valuable lesson... and it may seem cliche' but it's not really... that you really must seize the moment and find pleasure and happiness in the moments you can.   NONE of us are guaranteed another hour, day or even a minute.  It's what makes those minutes memorable that makes a difference.   

    To you that are newly diagnosed... my TN sisters... HANG in there.   Surround yourself with love and those that will support you.  In real life and online.   I lost my hair, eyebrows and nails and toenails... but after awhile, it didn't matter anymore.   My hair is growing back (quite sexy I may say... people say that the short pixi look works for me and I may roll with it and keep it this way!), my nails are finally back and toenails are taking awhile, but they're getting there.    Don't wear a wig if you don't want to.  I wore a cap as it was more comfortable for me.  And I ROCKED my bald look.  I wore makeup to make me feel better.    I NEVER ever thought I would get to this side of it while I was going through treatments.  But I did, and you will too.   Currently mentoring someone I know that was dx'ed a few months after I was.  

    YOU CAN DO IT!

  • Luah
    Luah Member Posts: 626
    edited September 2012

    Lani: You do rock the bald look!  Thanks for posting to lighten the hearts of others. 

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited September 2012

    The University of Texas MD Anderson Cancer Center in Houston spending $3 Billion to launch a massive effort against 8 particular types of cancer, and among one of those targeted by their research group is Triple Negative Breast Cancer. The team that is targeting TNBC is also jointly targeting a deadly form of Ovarian Cancer as well.  

    Here's the article so you can read more.    

    http://www.huffingtonpost.com/2012/09/21/md-anderson-cancer-center-cures-deaths-_n_1903597.html

    May this bring hope and light to all of our futures and to targeted therapies for TNBC.

    Praying for all of my BC Sisters on BreastCancer.org today.

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