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Are there women who survive TNB

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lindarenee View Drop Down
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    Posted: Jul 17 2009 at 2:44pm
Are there a lot of women out there who actually do survive triple negative breast cancer?  It seems to me as though most women relapse from this disease and die...even the women who do not have the triple negative breast cancer lose their lives as well.  I have been on line trying to find articles about women who have survived this cancer for many years and all i read about are women who are relapsing and dying from it.  At first i was really positive and optimistic that i was going to remain cancer free while i was going through treatment.  But now i strongly feel that i am going to die if not soon than in the next few years.  Although i have been in remission for 19 months now, i don't see myself surving this.  I just give up all hope.
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 2:55pm
Hi Lindarenee,
 
I really wish you wouldn't give up hope.
 
Only recently have they tagged TNBC and began to look at it seriously so there isn't alot of information but that is changing all the time.  More studies, more discussion, trials, it is getting better and will continue to do so.
 
So many women once they complete their treatments or even before will probably go on with their lives and not be in an online discussion so I am not sure how you would be able to know at this point.
 
We are fortunate and have some longer time survivors who post occasionally to remind us this can be done.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 4:52pm
Dear Lindarenee,
 
Lori has felt the same way as you, and she knew many women dx with bc, and only knows of one who has survived, and that woman is a friend of mine and Lori's. Peggy is her name and she was dx with TNBC also, but never knew she had TNBC until Lori was dx. Peggy is now 7 years out from dx. I also know one woman who was dx with bc+ over 25 years ago, and she is doing well. She was also dx with cancer of the uterus, but came through that as well.
 
Here on the site we have Kirby, dx in February of 2001, Rena Henderson, dx in 1986, with 22 positive nodes, went through a year of chemo weekly, and then there is Flutist, 18 years from dx, also went through chemo for 1.5 years and weekly. Rena does post occasionally and I hear from Flutist by pm or email. They are doing well.
 
It must be very difficult to stay positive when there are no long term survivor stories, and especially with TNBC. The phrase was coined I think about 5-6 years ago? I think someone told me when I joined the site 2 years ago for Lori, that it was 3 years then.
 
Lori is 2 years out from dx, and is doing everything in her power to stay healthy, but there is no guarantee that this beast will not return, and she knows that.
 
Until a cure or a cause is found women will continue to be dx and will die. As Connie has said so many times...give all the money to the best and brightest researchers/scientists, and perhaps they will find the cure.
 
More drugs don't seem to have been the answer, as they are not curing, only giving more time, which of course is what everyone wants, but they are not providing quality of life. Don't give up hope Linda...Lori hasn't...and I haven't either.
 
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 6:32pm
YES, lots and lots!  At least 60-something% of women survive it, and the number is much higher for lymph-negative, and even higher for stage I. Don't feel hopeless, sweetie, though of course we all go 'there' sometimes.  You are doing really well. 
Love,
Denise (about to go to the airport to take off for our Bali vacation....yipee!)
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mefowler Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 1:18am
Dear lindarenee,
 
Overall about 80% of women with TNBC are alive at five years after diagnosis.  And the best part is that if you survive five years, the risk of recurrence is about 0% after that.  Even though the five-year survival of hormone-sensitive is higher, they continue to have a risk of recurrence even twenty years out.  I hope you don't get discouraged.  I think that what happens is that as women get further out from diagnosis, they get busy and don't post on this site as often as when they are first diagnosed and under treatment, although they cruise by occasionally and I bet they read more than they post.  It is the natural change in focus that occurs when they no longer have as many daily reminders about their breast cancer.  So don't give up hope!  I certainly have not.
 
Maire
53 yo, dx'd 11/08 at 51, 2.9 cm IDC, node-neg, neoadj chemotx with Taxotere/carboplatin q3wks x 6, lumpectomy 4/09, path showed pCR, margin reexcision 5/09, rad'n 6-8/09, intermittent Tarceva, dc'd
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 4:24am
Hi Lindarenee,
 
I understand how you're feeling, as it was only a couple months ago I was asking the same things when I found out I was Triple Negative.
I did the same thing as you - searched online to find stories of hope and survival...and I found NONE. Every story I found online was negative about TNBC...they all said TNBC is basically a death sentence, just a matter of time. I got myself in a major emotional funk because of this, and I posted the same questions you have here, in another BC message board (Young Survival). When I did this, a very kind member took it upon herself to find an old thread with MANY people who posted success stories with TNBC...many 5 or more years out from their original diagnosis! This member also took it upon herself to request a "shout-out" to all the current TNBC members who are still doing well today, and many responded with good news.
 
What this member did for me, and all the ones who responded, was give me hope, and showed me that there are MANY people who are beating this.
 
I also realized that this was a "look at the glass half empty or half full" situation, and from that point on I chose to look at it half full.
 
Someone else told me something very wise as well, which I'll share with you... NONE OF US COME WITH AN EXPIRATION DATE.
 
 
(((hugs)))
 
Christine Smile
 
 


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
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rena View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 6:50am
Lindarenee, I found the first three years the hardest in terms of feeling hopeful. It really does take some time to start to feel confident about the future. I encourage you to talk to a counselor or, better yet, find a really good women's therapy group. It can be a breast cancer group or not. I joined a group (not a cancer group) when I was about a year and a half out from diagnosis because I was living, breathing cancer--thinking about it when I woke up in the morning and thinking about it when I went to bed at night. Finding a place to talk about the feelings and get support and feedback helped me more than I can say.

Although I was diagnosed before there was a test for HER, my oncologist is quite sure that I was TN. That was almost 23 years ago. I had extensive lymph node involvement. Women DO beat TN all the time. Please don't give up hope. Don't sit alone and feel hopeless. Talking about the feelings is so important.

Wishing you the best,
Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 7:17am
Christine,
 
You look so pretty in your picture!
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shoyle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 10:03am
I am a woman who has survived triple negative breast cancer. I was diagnosed in 2005, so this is my fourth year cancer free. It has not been easy  after receiving an all clear regarding remission of cancer in my breast, pre cancerous polyps were detected in my colon and as a result I underwent a partial colectomy, followed by a hernia a repair.  never the less I am blessed and well. Please do not give up hope, everyone's circumstances are different, and each cancer is different even though we have a commonality. Meet each day with pride in yourself and love of life.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GRANNY Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 10:16am
We all need to keep our spirts up and only listen to positive comments.  A negative out look can effect healing.  I know there are times anyone can get overwhelmed.  I am a RN and the first thing I did  was get on line and look at all the negative web sites got overwhelmed and felt totally doomed. A dear friend of mine Ginny who is also a nurse redirected me and found this web site.  Some of the info on web sites cannot be trusted it is not accurate.  Please trust in the Lords healing powers pick your self up by the boot straps and FIGHT LIKE A GIRL!!!!!!!!!  Cancer is not the work of the Lord but the devil do not let him win.  Eat when you do not feel like eating excercise when you do not feel like it.  Pray for healing and accept the fact you are healed by the strips of Jesus.  Love to All Lets Keep Fighting
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vdq7015 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 12:44pm
Hi Lindarenee
Wow I am a long term suvivor.  In nov it will be 6 years since my dx. For the first 2 years I worried constantly. I even held off on reconstrction until I was 2 years out. Keep being positive. You might benifit from Happy pills to take the edge off. I don't need them any more but they sure help the first 3 years. I was so worried I would not see my boys graduate from High school. Well 1 down 1 to go!!
 
xoxo"s
vdq7015
tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 1:17pm
Originally posted by trip2 trip2 wrote:

Christine,
 
You look so pretty in your picture!
 
You are a sweetheart, Pam. Thank you! Embarrassed


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 9:20pm
Lindarenee,
 
I guess this is where I am supposed to come in. Read my stats. I know without a doubt I was TN even though they didn't come up with the term until maybe 3 years ago. In addition, my tx wasn't what so many of you are having today for TN. I was age 44 at dx. Given 1/2 the amount of chemo that is given today, this was before dose dense and I had only a lumpectomy.
 
There is lots of hope out there. Good luck to you. Cancer will always be lurking in the back of ones mind but it does eventually reced to the further recesses.
 
Kirby
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Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 10:51pm
Lindarenee

I was Dx in1997 and although not talked about then my path results show that I was TN back then they only talked about ER & PR +/-. but when I checked my path report it does show they had tested for Her2 and that was Neg as well.

As several have said TN has only come to the fore in recent years so there are many around who prob are TN but don't as Her2 was not tested for and unles they get a recurrance will never know.

If I hadn't had a new primary in the other breast in 2006, I would not be here on these boards as I had got on with my life, putting BC out of my thoughts until my annual checks came up.

In the beginning I worried that I would never see my boys grow ,but I have (My only experience of Cancer prior to my Dx  was 6mth after Dx you are Dead).  I and many other like me are living proof that is not the story today.  I have seen my boys grow up, marry and give me grandchildren.

One day this will be you so please don't give up.  Live every day.

Raine
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Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC
Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2009 at 4:01am
Dear Lindarenee,

I think a positive outlook is a very important part of your recovery plan.

Last night my youngest daughter was married and I spent some beautiful time dancing with her older sister who was diagnosed with TNBC five years ago, next month.

I believe she will live many, many decades...not just years...

She has never 'given up' and I truly believe that has helped...

To be honest, sad and depressed at times, but she has always remained a fighter.

My prayers are with you and I hope you can, somehow, with time, feel more optimistic about your outcome. As written above, by others, there is evidence that you can be a long-term survivor.

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2009 at 7:07am
No hope??????
Please know we have all felt hopeless.  I always say...it is amazing what you can do when you do not have a choice...
IF it is true we will all die with tnbc then our other choice to live as long as we can...
What can we do?????
Some ppl here rely on  a strict diet, i am going thru a trail study sponsored by Columbia in Houston at  Baylor also md anderson is conducting this triple negative prevention. Will IT will work??? I don't know...But I am trying this  six month study..when it is over i will find something else to try...Maybe i will live long enough that  they find a drug to prevent recurrance. If not maybe i will prevent my daughters form getting this...
Don't give up you can't, if we all do.... then we all let each other done. It is our fighting and complaining that is making them research tnbc..
Do we have a deal?????
Texas calling you out girl:-o 
 
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sydonashae Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2009 at 7:45pm
It is entirely up to us, the survivors of this disease, no matter how long, to bring awareness and positivity to the newly diagnosed.  Yes, it feels hopeless and helpless.  Those worries and anxieties do pass with time.  There are stages you will go through during treatment, but know you will soon be yourself again.  It is scary and frightening.  I refuse to read anything negative about our disease anymore.  I am here now and that is all that matters.  I was 33 at dx with two small children.  They remind me daily that I cannot allow this disease to take me away.  I refuse to let it.  I have good days and bad days - as we all do.  Here are some things I have learned lately to cope with my anxiety: diet (low fat, low sugar), vigorous exercise at least 6 days a week, a morning shake comprised of green powder, ground flaxseeds, blueberries, probiotic and whey protein, supplements: fish oil, quality multi vitamins, D3, resverterol, indole 3 carbinol, mushroom extract and tumeric.  Green tea is important and should constitute half of your daily intake of fluids.  I learned a lot over the last few months from natural doctors and from reading.  There are some things we can control such as keeping our bodies as healthy as possible, but there are also things we cannot control - there is where hope enters the picture.  All we can do is hope and keep a positive attitude and keep our bodies healthy.  I hope this helps.  I don't post a lot, but do visit often and read the posts.  I just passed my one year mark on June 13th and doing awesome!  You can do it too!!!  No matter how long we are here, every minute is a blessing, even for those without cancer.  Everyone should treasure each and every day regardless of what kind of battle you are fighting.  Keep fighting!!! xoxo Susan
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sydonashae Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2009 at 8:41pm
Christine - how did you post your picture?  Everything I have tried gives me an error message!!  Susa
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sydonashae Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2009 at 8:42pm
Christine - how did you post your picture?  Everything I have tried gives me an error message!!  Susan
Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2009 at 3:35am
I know so many people who drink shakes....
My family ate at home so often while I was going thru chemo. Three drugs  made me sick, now i feel like my husband lives to eat, and I need to eat to live.....I am ready to try it..How does it taste? Can you give the measurements?
 
Any other shake girls out there??????
Thanks,
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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