Positive discussion about TN

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carolinachick
carolinachick Member Posts: 387
edited July 2014 in Triple-Negative Breast Cancer
Positive discussion about TN
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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    I'm hoping this will be a thread where we can share information about triple negative breast cancer.  My wish is that this will be a place where we can discuss treatment options without negativity and lift each other up during this journey.  Anyone else up for it?  Just because our breast cancer is negative doesn't mean that we have to be...

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  • Cottonwood
    Cottonwood Member Posts: 3
    edited July 2009

    Hello !

    My name is Danielle, from NY, I'm 36  and just had a bilateral mastomery 2 1/2 weeks ago.  I have a 7 yr old and 18 month old.  I just got back path report and I'm triple negative and NERVOUS about  chemo...

    I worry whether I will have the energy to care for my kids!  Is there any one out there that has had a similar experience?  Would love some advice!

    Thanks!

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  • jax65
    jax65 Member Posts: 47
    edited July 2009

    carolina chick- I think a positive thread is a wonderful thing. My name is Jackie and I am also from NY. I have a 17 yr old daughter and a wonderful husband. I am very scared about being TN especially with all the negativity that surrounds it.

    Cottonwood - Where in NY are you? I am in Rochester. I have already completed chemo TCx4 and while it was not a fun time most days I could be productive. Of course your kids are younger. I did have to nap most days as I was completely exhausted. Hopefully someone can help you with the kids when you need it. The worst days for me were days 3-7 and then I would start to feel better. I went back to work after TX #2 but would take the week after chemo off. Chemo is TN's only weapon so try not to be nervous. I know that is hard but it went by much faster than I imagined. Last TX was 6/5 and hair although fuzzy is coming back in. I am planning prophy MX in August as my BS would not do it at time of 1st MX. So not looking forward to another surgery but not willing to take any chances of the beast rearing it's ugly head again in the other breast. I am contemplating reconstruction but not sure yet. Would love to hear pros and cons. Do you know what type of chemo you will be doing?

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  • pattypoo53
    pattypoo53 Member Posts: 46
    edited July 2009
    Hello,

    I was diagnosed in Dec 03, 50 yrs, atypical medullary, they treated it as an invasive ductal breast cancer, 2.8cm, triple negative, no nodes involved out of 28, no vascular invasion, clean margins, lumpectomy, 4xac then 4x taxol every three weeks, then 33 rads. I am five 1/2 years out this month, July 09!! My birthday was on Nov 22,08 and I had never been happier to turn 55!! Its been a roller coaster ride for me, but I am here and doing great. Hang in there! I don't post much, but this board was a life saver to me when I was diagnosed in 03, I felt scared and alone. Everyone offered so much support to me. So far I am doing great, everyday is a gift.

    Hugs,

    Patty
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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Hi all,

    love this link.

    I am Uma. since i came to know about TN , I too have been worried.  My Onco has been very helpful and supportive.  He says that the best way out is to compleat the whole treatment and then leave things in his hands.  he will take care , in terms of regular checkups and stuff.  meanwhile , i am supposed to live life king size.  just be stress free and ENJOY.

    I have compleated 4xEC and 4xTaxo.  now i am waiting for the rads which will start in a couple of weeks. 

    Frankly i am waiting for all of it to be over and start my LIFE again

    Love and hugs

    Uma

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  • melaniew1
    melaniew1 Member Posts: 250
    edited July 2009

    Hi!  I love this idea!  I am TN and it worries me, everything seems so terrifying about it.  BUT, I completed dose dense chemo (ACT) last June, then bilaterall mx, then 28 rounds radiation.  I had COMPLETE pathological success from the CHEMO.  No cells were found and the tumor in my breast was only necrotic (sp?) tissue.  So good bye cancer!  The nodes that were cancerous at biopsy showed no evidence of disease.  So success can be ours ladies!  I am not planning on looking back...although there are those days........we would not be human if we did not have those days! 

     COTTONWOOD...plan on having some help, you will need it,  I think it is important to rest when you need to.  But just so you will know, I continued to work my full time job, although I did miss my treatment day (which were on Fridays) and I recovered thru the weekend, by the end of my AC treatments it was taking me Monday to recover as well.  I found that the taxol was relatively easy compared to the AC treatments.  Keep a positive attitude, its important!  Take care girls and live life to the fullest. 

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    I like the idea for a site which focuses on the positive side. 

    Cottonwood.  I also took off the first week.  But, I worked weeks 2 and 3 and felt pretty good those weeks.  I hope you have some good support.  But, even during the first week I was able to go through the motions slowly of normal house hold living. 

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  • tibet
    tibet Member Posts: 545
    edited July 2009

    Cottonwood

    AC is harder than toxol. You need to have someone helping you with househood and kids during AC but toxol you can manage with anyone's help. AC is usually hard days after the tx. Chemo is doable and don't be scared about it. I did not have too much of side effects other than just tired and nausea a few times.  

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  • gillyone
    gillyone Member Posts: 1,727
    edited July 2009

    Great idea for a thread - I agree with what's already been said.  I am TN stage IIIc grade 3 and node involvement too. I am just getting started on this road. Had surgery (did good) and am in the middle of scans and expect to start tx in 2 weeks, with rads to follow.

    Patty we all plan on joining you at the 5 year mark.

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  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    excellent idea for a fresh start with a positive tone. thank you!!  

    i'm TN, stage 1, grade 3, no node involvement. mother and grandmother both had BC and died when it spread to the bones. i had bilateral mastectomy 11/08, four months of chemo (AC/T), 33 tomotherapy radiation treatments which i finished two days ago. my UCSF med onc recommended i follow up with zometa, but i declined because of the risk of ONJ.  so i'm being diligent about exercise and low-fat, healthy diet to try to prevent recurrence. i love what you said, carolinachick, just because our cancer is negative doesn't mean we have to be. salut!

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  • Sassa
    Sassa Member Posts: 1,588
    edited July 2009

    Here is a real positive research find.  This article talks about basal breast cancer which is a type of  tripe negative BC.

     http://www.sciencedaily.com/releases/2009/07/090708153238.htm

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  • Sassa
    Sassa Member Posts: 1,588
    edited July 2009

    Let me try again to provide a link

      http://www.sciencedaily.com/releases/2009/07/090708153238.htm

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  • Sassa
    Sassa Member Posts: 1,588
    edited July 2009

    Sorry, can't get the address to show up as a link.

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  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    sassa, that's okay. we can highlight the link and paste it on our browser and go to the site. thanks!

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Thanks for the positive feedback, ladies!  I was diagnosed in January 2009 and had a lumpectomy in late Jan.  I had four rounds of TC and 33 radiation treatments.  I finished radiation this past week and had a clean mammogram and checkup with my surgeon yesterday.  Yippee! 

    Cottonwood:  I was able to work all but 1 -2 days each round of chemo.  I had my infusions on Wednesdays and the worst days were over the weekend after that.  I didn't have much nausea (thanks to the great anti-nausea drugs) and mostly just slept.  My kids are older, so I didn't have that concern.  You will definitely need help on that front.  To encourage you, I have to say that It went by much more quickly than I could have imagined.  I have been fortunate to have great support from my husband, friends and family, and I have truly seen love in action over the past six months.  There are positive things to be experienced during this rough journey.

    I love to hear the stories of TN survivors that are 5 years out and doing great!  That is such encouragement to the rest of us.  I am also trying to be more careful about diet and exercise, since I think those the biggest guns in our arsenal.  If anyone is interested in the WINS study, which looked at the effects of a very lowfat diet, the link is:  http://www.cancer.gov/newscenter/pressreleases/WINSBreastStudy  It's especially interesting that the results seemed to be more effective for triple negative bc.

    Take care of yourselves and enjoy your Friday!

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited July 2009

    Hi, my name is Tabatha and I'm from Alabama.............(insert Mrs. America wave and big smile here).   lol

    I just turned the big 3-8 on June 30 and I was dx with TNBC on May 22.   I had an excisional biopsy which means they took the tumor out but left positive margins because the Dr knew I wanted a mastectomy.   I have since decided to go to a large breast cancer clinic at UAB.   I had a CT w/contrast, bone scan (nuclear medicine), mammo's, and ultrasound of my axilla nodes.   All my scans came out clear.......YEAH ME............EXCEPT for a small tumor that was found on CT scan at the bottom of the pole of my kidney (tumor doin a pole dance near my kidney I'm thinkin) and so I had to go through a kidney biopsy to see if it was related to my breast cancer.   Got the results this past Monday.   NOT RELATED TO BREAST CANCER!!!!!  YEEEE HAAAA!   However, the small tumor (2cm) is renal cell carcinoma, grade 1 which is the SLOWEST growing kind of "kidney cancer" there is so my dr plans to remove it laproscopically on July 30.   While it IS a bump in the road and not the news I wanted.   I MEAN WHO WANTS 2 DIFFERENT KINDS OF CANCER AT THE SAME TIME?   DUH?

    However, this is the hand the Lord has allowed to be dealt to me and I plan on doing exactly what my Dr's want me to do.   My breast cancer team wants this taken care of FIRST before I start my chemo.   Worse case scenario is they may have to remove my entire kidney HOWEVER my urologist said this is actually an easier operation than trying to remove the tumor itself.   His goal is to save the kidney because I still have chemo to go through but I have been assured by my breast cancer team that they have patients who only have 1 kidney and do just fine.

    So, please be in prayer that they can get the tumor laproscopically on July 30 and save my kidney.   Appreciate ya!

    O.k. after THAT (whew) and upon me assuming my kidney will indeed stay where it is I will have chemo every 2 weeks for a total of 9 treatments and then will have bilateral mastectomies.  

    Oh, and I tested for the BRCA 1 & 2 gene and my findings came back "inconclusive" that there was a "variant" but can't be determined if it is even related to cancer.   Well of course!!!!   lol

    So, while I have hit a few speed bumps that have slowed me down a little bit I shall keep my head high, do what my Dr's tell me to do and pray.  That story was kinda uplifting and a downer at the same time now wasn't it?  lol

    Tabatha 

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Wow, Tabatha, that is a big pill to swallow.  You sound like y ou're  handling it with a good dose of optimism and humor.  Keep us posted on your progress and hang in there!

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  • PDXmom
    PDXmom Member Posts: 6
    edited July 2009

    I like your thread Carolinachick. I finished treatment almost a year ago. So far so good. I am feeling very well, back to working out at the gym a couple of hours a day. Able to spend the summer doing a lot of fun things with my kids that I could not do last summer. For the most part, while the fear of recurrence is still there, I am no longer consumed by it.(of course it rears it's ugly head once in awhile) I thank my God for helping me through, for giving me a wonderful husband, family and friends and I rely on His wisdom and plan to guide my future. So I am happy to have each day that is given to me and grateful for the extended time God has granted to me.

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited July 2009

    Hey you guys - I'm one year & one week out of treatment, but who's counting? Lumpectomy, chemo, radiation. I'll tell those of you who are about to do chemo the truth - you'll have good days & you'll have days when you wonder if it's all worth it. It is.

    I can actually go days now without thinking about being a BC patient or survivor or whatever. When it's new, it's overwhelming and consumes all your thoughts and energy. It'll take awhile to get all your energy back - they are poisoning and nuking you after all - but your energy does come back as does your sense of who you are.

    The one thing I can't stress enough is to go on to the chemo/radiation boards and join a thread that starts the same month as you do. "Normal" isn't "normal" any more - I don't think I could have gotten through treatment without that peer support & knowing that what I was experiencing was "normal."

    susan 

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    I love the tone here.  Lord knows we need it.  If nothing else it will make us feel better.  I'm at the end of active treatment now.  Except that I am viewing my exercise and diet as very active treatment.  The results make that treatment sound as good or better than chemo.  There are no guarantees but I'll increase my odds if I can.  Tabitha, you've been given quite a tough road to navigate.  I hope that you'll find all the support you need some where on these discussion boards.

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Speaking of diet and exercise, I started by run/walk program tonight and it about killed me.  I am so very out of shape!  I'm trying not to drown my sorrows in a big bowl of ice cream...

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Hey there all you positive neg women!  I thought I would join in to the conversation.  I was diagnosed in 07, did a clinical trial with Avastin with A/c and taxol.  I am now doing reconstuction, I will have my exchange done on August 31st.  I can't wait!  My doctor is optimistic about my prognosis.  I was scared shitless the first year and I am still scared but Im just living my life to the fullest and enjoying each day.

    Teresa

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    HI GUYS

    Tabatha- love yr attitude towars all that u r going thru.  i wonder if i would be so positive.  i am praying for u.

    I belive that being positive and not thinking about it a lot is of a big help.  I have a 9 yr old daughter.  i have to be ok, for her.  there is more to life than to keep looking over yr sholder for something that might or might not happen.

    God has made us TN so that we dont have to take any follow-up medicines and be reminded of the the thing that we have to let go , and move ahead.

    Hugs to all and take care

    Uma

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  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    wanted to share this TN website with you in case you haven't seen it yet. it has frequent updates on new clinical trials, research conclusions, etc.

    http://www.hormonenegative.blogspot.com/ 

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Hi Teresa - congrats on your upcoming surgery.  Keep us posted on how you're doing.  I can relate to the being scared part, but I'm hoping that gets better over time. 

    ddlatt- thanks for the good website.  It's great to have a place to check on what's on the horizon. 

    Is/has anyone here had genetic testing?  I've heard somewhere that TN has a higher chance of being genetic, and I'm meeting with a genetic counselor on Wednesday.

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

    Hi sisters, I am closing in on 11 years post treatment, TriNeg, and doing just fine.  I am going on a cruise Sept. 1st, but so much time has gone by, I am not going to be able to use the "poor me with cancer" routine to get to go on another trip, I think I have worn that out.

    There is life after cancer, and heres hoping and praying we all make it.

    Gentle hugs, Shirlann

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited July 2009

    I had genetic testing done due to my family history and they couldn't say if I was negative or positive for either gene.   I was in the "inconclusive" section something about there is a "variant of undetermined status" or some such.   Both of my parents have tested and we should get the results sometime this upcoming week.   I feel like it's coming from my Dad's side but we shall see.   I'll keep ya posted.

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited July 2009

    I have a Caring Bridge page if anyone is interesed in looking at it.

    www.caringbridge.org/visit/tabathaallen

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Thanks for the encouragement, Shirlann.  It's so good to hear from TN ladies who are 5+ years out.  We're all planning on joining that club!

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  • PooTik
    PooTik Member Posts: 4
    edited July 2009

    Hi Cottonwood - I'm 32 and triple negative.  My son is now 15 mths old and I started my treatments in March.  With AC, I needed help with him for the first 4 days and then if I had to I could take care of him.  With Taxol, it hasn't been as bad, but occassionally fatigue and some bone pain sets in. 

    My point is that its not ALL bad, you will have rough days when you can't do anything, but there will be good days also.  You WILL get through it with a reasonably decent quality of life. Go fight it!

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