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TRIPLE NEGATIVE

celinelvr
Posts: 30
Joined: Mar 2009

I was wondering if any / how many of my sisters here are triple negative?????
I am triple neg and feel I will be fighting this the rest of my life.
Milly

redriverartist's picture
redriverartist
Posts: 54
Joined: Jan 2009

Hi, Milly - I just finished my treatments last week. Like you, I was a triple negative, as well. I guess our stories are very similar as I found the lump in the shower. It was a big bad boy but the surgeon and the oncologist are confident that it hadn't spread. I had a modified radical Oct 22 and began treatments shortly after that.

The odds for staying cancer-free for 10 years went to 85% with the chemo treatments (47% without treatment).

I certainly hope we don't have to fight this again.

Teresa

AK farm gal
Posts: 2
Joined: Jul 2014

Can u tell me where I can find the info about increased survival rate after chemo. I was triple neg and had double mast and dose dense chemo. Finished 13 myths ago:)

Derbygirl's picture
Derbygirl
Posts: 198
Joined: Jul 2008

I'm nearly triple negative (5% ER positive) and was told I would not benefit from taking hormone therapy. However, after reviewing the pathology again following a lumpectomy, chemo and radiation, my Onc. and Pathologist agreed that I should take medicine. Their new opinion is that anyone who is at least 1% positive should take hormone therapy to get whatever benefit possible.

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

My beloved Moopy was diagnosed as triple negative right after her mastectomy. Stage IIIa, 6/15 positive lymph nodes. We were too overwhelmed with the new adjustments to our life - diagnosis, meetings with specialists, drains and incisions, all that - to really pay all that much attention to what "triple negative" meant. Fortunately, we came across this board, and the ladies here (especially Mimi) helped explain to us what "triple negative" means. And, more importantly, what "triple negative" does not mean.

"Triple negative" is an unnecessarily scary term. It has a bad suggestion of "three strikes and you're out." It's also very inaccurate: it's like defining a woman as "no penis, no testicles, no beard" or (to be fair) a man as "no vagina, no uterus, no breasts." We use the term because that's the common terminology, but that doesn't mean it doesn't suck. The one and only thing "triple negative" means is that a tumor does not respond to hormonal therapy. That's it.

Moopsy and I come to look at so-called "triple negative" status as a sort of challenge. One we wouldn't have chosen, but then, one's not exactly given a choice. The bad news is that hormonal treatments will not give the extra benefit added on after chemotherapy and radiation. No getting over that disappointment. "Triple negative" cancers (I'm using the plural here) also tend to have a higher rate of recurrence. Exactly how much higher - the researchers are still arguing. On the flip side, researchers agree that this increased rate of recurrence drops off sharply after around three years out, while with other cancers, the recurrence rate continues to drop off only gradually.

I'm not trying to polish the proverbial turd here, or blow smoke anywhere. "Triple negative" is indeed a tougher than average road to walk. Yes, it is frustrating that more clinical trials aren't (yet) being done to fight against "triple negative" cancers. But we also need to keep in mind that there are lots of "triple negative" survivors alive and well and dancing with NED - the guy that every cancer survivor wants to settle down with. You can meet some of them here at breastcancer.org. Caution: not all of the stories are happy. But if you read them all the way through, as I have done, you will be encouraged to see that there is indeed a life after "triple negative" breast cancer, and that it is very much worth living.

And finally, my attempt at an answer. I am neither a woman nor a cancer patient myself, so take my words for as little as they're worth. I figure that if I'm completely off the mark, the ladies here will correct me and I will be grateful for the lesson. But what I have read here and on other BC boards tells me that one never stops fighting cancer, even during a long and happy relationship with NED. How to fight it, and how to claim as much as possible of one's life back after diagnosis and treatment, is something Moopy and I look forward to discovering in the years and decades ahead of us.

But for the time being, "triple negative" status is no extra reason to be afraid. It's more of an unwanted extra challenge. An extra challenge I hope and pray my beloved Moopy and all of her fellow "triple negatives" will someday look back upon and say "Ha! I won!"

Ltalcott's picture
Ltalcott
Posts: 119
Joined: Mar 2009

Dancing with NED! I can't get that picture out of my head! I just can't really see NED's face--does he look sort of like Carrot Top, or is he a handsome dude, like Brad Pitt?

Lisa

mjfromtx
Posts: 49
Joined: Aug 2008

I am triple negative also. I am happy I do not have to do the hormone treatments. I did wonder about research though because I figured that all the research did focus on the 3 hormone types ER, PR and Herceptin. This is a question I am going to have to ask my onc about when I see her in two weeks about recurrance and if there is anything extra I need to be looking for or do? I hadn't heard that recurrance would be higher, just more of an unknown factor. There is a triple negative website out there too. mj

Hil Lyn
Posts: 2
Joined: Oct 2009

I vote for Brad Pitt.

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

Yes, I totally agree. Don't let the triple negative thing get you down. It's an extra challenge, to be sure. But as Joe says, the recurrence rate goes down sharply after a few years. On the up side, if you want to look at it that way, we won't have to go through the side effects of hormonal therapy....

netty45's picture
netty45
Posts: 7
Joined: Aug 2009

I was dx'd in 2000 with stage one invasive. At the time no one told me that I was triple negative but when i heard of this i pulled my old pathology report and there it was Triple"s and grade 3. In 2000 this was not very important or discussed with me.

I was treated at memorial Sloan Kettering in NY.

I was so sick when i 1st heard of this thing i wanted to pass out.

I will be 9 years now in october. But as time goes on or gets closer to 10 years believe me you do tend to worry the same.

At times I just Feel like getiing a double masectomy. I did the gene testing and that came back negative.. I was 36 when 1st dx'd and i am soon to be 45 next month.

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

Thank you for telling your story. It's very inspiring for us fellow triple negatives to read of a long-term survivor such as yourself!

Mimi

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Welcome Netty and Milly to the site.

Hugs ♥Lex♥

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Netty, like Mimi said, it is great to read a long term survivor's story being a triple negative.

♥ Kylez ♥

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Hey Netty! Welcome! I hope you find lots of support on the site. Post again when you can.

Hugs, Leeza

GlowMore's picture
GlowMore
Posts: 49
Joined: Feb 2008

I was diagnosed with High Risk Triple Negative BC Stage 3-A   in April 2002............after a Lumpectomy/Port Implant/chemo/radiation/millions of blood tests and every scan in the world/and of course continued blood work every 6 months now.....the Oncologist still will not release me.   I will be 78 next week and really am thinking of just stopping the doctor visits...because at my age I am not going to go thru all that again.       I truly believe I am only still alive thru the Grace of God.

 

CancerNinja
Posts: 3
Joined: Jun 2014

Hi there, I to an TNBC stage 2b I have been through chemo, surgery, and rad. I had a lumpectomy and 3 nodes removed. Its interesting how ONC either just release you and others are very protective. I have had some really bad swelling in my feet and ankles espically on the left side. I had allot of blood test and ultrasound on legs to make sure no problems with veins. And nothing. I so agree with Good luck with everything and keep smiling. Pam

Christmas Girl's picture
Christmas Girl
Posts: 3629
Joined: Apr 2009

You've joined an amazing group of fellow survivors, all here to support and encourage each other.

survivorbc09
Posts: 4378
Joined: Jun 2009

Hi Netty and welcome!

Hugs

tld201
Posts: 1
Joined: Oct 2009

NETTY,
I am so glad to hear of your positve outcome!! I was just diagnosed 6/1/09 at age 42 with stage 1 triple negative, grade 3. I am currently going through chemo and after that radiation therapy. I have a husband and 2 kids, 6 1/2 and almost 10 year old girls. I was needless to say scared and could not find anyone with my type of cancer. Most everyone I came in contact with were 15+ years older and all have had a lumpectomy with radiation and them hormone therapy. I did not feel much support as I had only wished that if I had to get cancer why not 20 years from now? YOu give me such hope!!! Thanks for sharing!!

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Hi Milly. I am not triple negative, but, I wanted to welcome you to the site. As you can see, you will get lots of support and information. Good luck!

PP
Posts: 1
Joined: Sep 2009

You can do this!!! Beware of the net and all the negatives about Trip Negative BC. For me the hardest part was all the scary info I read. I am so sorry I wasted so much time on it. Eat well and believe you can beat this. The first few years are the hardest because of fear. Then one day you'll realize you haven't been thinking of it on a daily basis. Everytime I went for radiation I took headphones of some awsome American Indian music and pictured them dancing around me and the cancer raising to the sky. I also did phycotherapy to calm my fears. She told me to imagine sheep grazing the cancer away. I tried to eat very well and took recommended vitamins. Chemo was a little rough but I also imagined it as liquid gold cleaning my body of all cancer. Sounds kinda wierd and crazy but I am healthy and never felt better.

Was stage 2 with 2 nodes positive grade 3. Lumpectomy with brachyradiation and epicubrin and cytoxin for chemo.

51 at diagnosis

Best to you and believe you can survive.

mixtymotions's picture
mixtymotions
Posts: 31
Joined: Jul 2009

I'm also a triple negative, stage Ib grade 3 invasive ductal carcinoma survivor who opted for a lumpectomy followed by chemo and radiation. I'm still in the earliest stages of treatment (having only completed surgery and 1 chemo {taxotere & cytoxan}) and I too have read all the information I could find about triple negative cancer. Yes, there's some scary (mis)information out there, but what I keep focusing on is the fact that triple negative responds VERY well to chemo. I have named my cancer "Fluffy". Yeah, you're not so big and scary NOW, are ya, FLUFFY?

Hil Lyn
Posts: 2
Joined: Oct 2009

I am new to the board. 2 years post Triple Negative diagnosis with full mastectomy and TAC chemo(49 at diagnosis). I appreciate your comments about the Fear. I bullied my way through surgery and chemo but over the past year have lost steam and feel this cloud over my head that I have yet to address. Hopefully I can find a support group locally but the comments here have been helpful as well. Thanks to all of you fellow survivors.

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

This thread contains a brief introduction to the facts regarding "triple negative" (that is, ER/PR/HER-2 negative) breast cancer. More importantly, it also includes stories from "triple negative" survivors, some of whom who have remained cancer free for years.

Bottom line: don't believe the mountain of scary crap available on the internet about "triple negative" breast cancer. Read the short introduction, read the inspiring stories, and if you have any questions... please ask away!

Joe (Aortus)
Proud husband of a "triple negative" survivor

e_hope's picture
e_hope
Posts: 371
Joined: Sep 2009

I am also triple neg...

I am 36 with stage 2b invasive ductal CA, 2 lymph nodes involved and grade 3 cancer cells. I had a double mastectomy and just completed 8 rounds of chemo. I will be starting radiation next week.

I don't plan on being a stat, So I am trying to do everything possible.

What we all have to remember.. These are just stats and none of us know where we will fall on that curve. So try not to dwell on the survival rate..

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Hi, E_Hope, you're right: we all must remember that statistics are not individuals. Besides, some have to fall on the right side of those stats--might as well be us! I'm 49, was diagnosed TN, 3A in November 08. Like you, I'm doing everything possible to stay cancer-free.

Thanks for the reminder and encouragement! My best to you.

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi, I'm triple negative stage 3c, I'm staying away from the stats myself.... a lot of good stuff said here, we each have our own stats, we fight, we take care of ourselves, and we think positive....that's what we hold on too. I refuse to be thrown in a group of statistics. It is scary the things you hear, but the survival stories out-weigh everything. There are many women who have beaten this triple negative, and we can too.
(((Hugs)))
Kari

bratlee
Posts: 2
Joined: Oct 2009

Hi I this is my second go round with BC. I had it 7yrs ago ER, PR+, had lumpectomy, radiation and chemo A/C. I have been told that this new BC (same breast) is a NEW Primary tumor, not a reoccurance. Only had a 4% chance of this happening, but it did. This time the tumor was Triple Negative, grade 3. I had a bilateral Mastectomy with Tram Flap Reconstruction. Since I had radiation back in 2002 I can not do that again. I had my first Chemo C/T on Oct 7th and had allergic reactions to Taxotere even with the meds they gave me to try and prevent that. The decision has been made to discontinue Chemo. The decision not to do Chemo was scary, but I am okay with it. I am ready to get my life back on track. It doesn't seem fair that I still had to loose my hair though, hehe. My goal is to continue to recover from surgery and the side effects of the chemo. Thanks for letting me share, I wish you all well!

Akiss4me's picture
Akiss4me
Posts: 2192
Joined: May 2009

I am so sorry to hear of your new cancer. I understand being on the odd end of the percentages. This has been occuring my entire treatment. I just found out it really has been my whole life, since only 1% to 4% of highschool sweethearts will remain married. I'm about to celebrate my 31st Anniversary with my wonderful Husband this year and yes, he was my highschool sweethart! This also tells me that even when I am given the bad odds....the Lord sees to it that I prevale. So hang in there. Even though you decided to stop the chemo, know that God's Will will be done and no less. Try to keep the faith that you will also be another odd percentage....beating that odd percent! Pammy

bratlee
Posts: 2
Joined: Oct 2009

Pammy, So funny you should say that, I have been married to my hubby for 34yrs. We started dating at the beginning of my freshman year. hehehe....... My oncologist told me a restrictive fat diet can be extremely beneficial so I will be doing that as part of my treatments. I get all the particulars on Wed. One has to be so careful surfing the internet for information on TNBC, I do wish that some people that tell prognosis percents, etc. would be more careful as many of these are scary and not correct. You are so very right, it is God's will and God willing I will be around to see my Grand-babies grow up. I hope all is well for you!
Thanks, Kim

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

bumping up for scubagirl

TxAthlete
Posts: 5
Joined: Apr 2009

We lost a young daughter( 34 years old ) to Triple Negative breast cancer 2 years ago. She managed to fight the disease for 2 1/2 years before finally losing the battle. I keep looking online for the miracle cure that would have saved her. It just isn't there yet. Hopefully, one day it will be found. I wish everyone well in your fight with this type of cancer. We traveled around the country to find a cure but weren't able to find it. I spent the last weekend of her life flying her to North Dakota to a clinic for a special trial drug. Unfortunately, she was too weak by then and I drove her home to Texas over the next 2 days with stops in hospitals along the way to get her home. She passed the next morning in her bed. Sadly, it was her 10th year wedding anniversary.

yv1214's picture
yv1214
Posts: 72
Joined: Feb 2011

I love this website because I was going to post a question about triple negative and here it is all ready for me. My mom is a triple negative and has stage IV bc. I am not sure how to feel about this since I know this is a tough road ahead for her. So thank you for posting some inspiring stories that doesn't make this look so bleak for us. Although that might just be me being naive.

yessy

Maruja
Posts: 2
Joined: Apr 2013

I was dxed w/ trip negative in 2004 - stage 1b, no lymph node involvement but grade 3 (the most aggressive).  I had a lumpectomy + radiation + 4 cycles of chemo (AC).  It was found on mammogram - located so close to the chest wall NO ONE could feel it.

I didn't know then but I found out afterward from the Mayo Clinic that there are two types of triple negative BC:  basel cell and non-basel cell.  Basel cell tends to recur within 5 years.  Non-basel cell is less likely to recur.  However, which ever you have, unlike other types of breast cancer, if you are triple negative and survive FIVE YEARS, you can considered yourself CURED.

So you won't be dealing with it your whole life - unlike women with other types of breast cancer.

Now, on the down side, I got all that info from Mayo Clinic when I went there and they discovered I have another primary tumor in my other breast.  This one is NOT triple negative and is WHOLELY UNRELATED to my first primary.  It is larger, still stage 1with no node involement, but ER+, PR+ and HER-2 negative.  They are going for a cure.  I've had the lumpectomy and just finisted my 1st week of RT.

HOWEVER, being triple negative the first time around had NOTHING to do with my getting this second tumor.  I am just happy that at 9 years out for the triple negative one I don't have to worry about it recurring ever again.  My getting the second tumor is just life, which sometimes really sucks.

netty45's picture
netty45
Posts: 7
Joined: Aug 2009

Hi everyone I had posted in 2009. After 12 yrs clear I had local recurrence in sMe breast . Devastated is the word I can use to describe how I felt . I had chemo again and radiation again also. I recurred June 2012.

 

lelela
Posts: 1
Joined: Aug 2012

Hi Netty

sorry to hear of your new BC....after 12 years it would be considered a new primary. Still sucks...hopefully you will never have to go through this ever again... Prayers, hugs and well wishes to you...

marycurbelo1204
Posts: 9
Joined: Jan 2014

I am also  Stage 2 triple negative and am still going thru chemo (not too much side affects with the exception that I've gained way too much weight).  I am currently on Taxol.  My biggest worry came when I was told yesterday not to come in today cause they were out of Taxol and medicine is on back order.   OMG, what exactly does that mean to my cancer???  Should I be horribly worried, what if it doesn't come in for the longest, what then...

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

I am a 3 year survivor of TNBC stage 2A...does dense AC/T chemo with a BMX. Scary...yes.....I stopped being scared after my 4th treatment. I said, I am in for the fight!!! I eat well and I try to live life stress free. Stay as positive as much as I can. Surround myself with happy people and try to help as many newbies as I can!!!

 

If I can help in anyway let me know and I will forward my number!!!

 

XOXOOX

Patrice

AK farm gal
Posts: 2
Joined: Jul 2014

Good for you Patrice!! I strive for your attitude. Just live life and find something good in each day.  SLEEP lots. Eat what u want while in chemo. Be kind to yourself and don't overdo. Lean  on friends and family and pray. I know that God loves us and will be there when we are ready to live in his heaven. Don't let internet scare you about triple neg. just use it as way to learn more. There are a bazzillion different statistics out there. Just keep your head down, one day at a time. 14 months since last chemo and living life again!!! Lasies you can do it!!! Love you all.

24242
Posts: 1417
Joined: Mar 2001

At 36 Stage 3 with 11 out of 21 positive nodes and had one lump in arm pit that grew in a week.  I knew...  Stats were less than 40% survival rate for me a little bit of a shot in the stomach at that time since spending years trying to convince doctors I was truly ill. 

Going on 20 years later and hitting the top end of years of survival and don't worry about anything because having time was better than not having time no matter what it was.  Survival rates way higher than 20 years ago and finding much earlier because people more aware and it doesn't get any better than this.

Tara

LVG's picture
LVG
Posts: 128
Joined: Jan 2010

Triple Negative dx. 11/2010, Invasive ductal carcinoma, Stage II, Grade 3, 2.2 cm, PT2N0 - Three lymphnodes: Negative.

Visiting my doctor today to receive test results from genetic testing BRCA 1/2.

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