Triple Negative Breast Cancer Survivors

LisaThompson

Are there any TNBC survivors here.  I was first diagnosed with TNBC, stage 2a back in 2007 when I was 26.  And so far, no recurrence.  My mom was diagnosed with DCIS, stage 0 breast cancer in 2010 and has now developed a recurrence and has IDC, triple negative breast cancer now.  It really hurts me more seeing my mom going through this than it did when I was first diagnosed with it.  Doctors will not know the stage she is in until she has surgery on Wednesday. I'm really depressed. I've never heard of any triple negative breast cancer survivors who have made it out past 5 or 10 years.  I read nothing but negative information about TN.  In August, it will be 5 years since I first discovered my lump.  I want my mom to make it out past 5 years and become a survivor as well. Are there any surviors here?

Nordy

Coming up on 7 years next month. We are out here! Don't lose hope!

Luah

Lisa, rest assured, there are lots of survivors here - and even more who have gone through treatment and gone on with their lives and don't visit here so much, but they are alive and well. We have a very active Calling all TNs thread you may want to check out. While recently we have lost three dear women who regularly posted there, that is a horrible exception to the "norm." As frightening as BC is - and TN in particular, most TNs survive.

LRM216

Read Noni's thread - she is 26 years out and was told way back when that she had no hormones to her breast cancer.  The name "TN" was only coined around 2004, I believe, so there are many long, long term survivors out there that have just gone on with their lives and no longer frequent the boards.  Go on over to the Calling all TN's and you will find gals out more than 5 years as well.  They have now found that there are many different subsets of triple neg and they are finding still more new ones, indicating that even among us TN's - our cancers are each completely different, no matter what our stats are.  There are definitely some far more aggressive and deadly than others, and this is what they are diligently searching new drugs for - to combat those of us who have the more nasty agressive type that nothing they now have seems to stop.  I just hit my 3 yr. mark in late Feb, and though I am relieved to have gotten this far, I don't think I will ever be able to stop looking over my shoulder.  Breast cancer in general is just a disgusting horrid disease.  I wish your Mom nothing but the best, and an easy journey with her new treatment.

Linda

Edited to add - 26!!!  My God, you were a baby.  I am so thankful you are doing well and hope that you never have to be faced with this beast ever again. 

LisaThompson

Thanks LRM216. Congratulations to you on being a 3 year survior.

bak94

I hope my piost offers encouragement and not fear. I was diagnosed over 9 years ago with tnbc, stage 2b. I have not had a recurrence! (I did have a new primary, but not recurrence!)

LisaThompson

bak94, your post did offer me some hope. I come onto this site and read a lot of info that TERRIFIES me. Although I know it happens, it just terrifies me when I hear of women who die from this disease.  It just adds to my depression. When I read online articles about TNBC, all I read is nothing but negative information.  So your post has lifted some fear from my heart.

maywin

Hi, I posted yesterday on the calling all TNs thread....I am NINE years out, and a friend of mine in town wasTN with three or four positive lymph nodes and she is nine years out also. We don't post a lot because we are out living our lives, and there are many many TN survivors out there. It's just that the further out you get, the less you come to the boards. I come back because I swore I would if I lived!!!!

margarett

I am in UK and also have TNBC, made more scary by being chemo-resistant.  I was diagnosed in Nov 2011 and had neoadjuvant chemotherapy, 2 x EC & 2 x tax, which did not shrink the tumour.  I had a mastectomy last week and am scheduled for radiotherapy after the wound heals.

I would dearly like to hear from any TNBC survivors who have experienced the same, ie chemo-resistance.

 Thank you to the TNBC survivors who have posted - it's very helpful.

rubyjune40

Lisa I am TN survior 6 years out, I did have a new primary in the same breast 3 years ago, that tumor was ER/PR+. It was very hard for me to wrap my mind around it but 3 years have gone and I know now that I am a survior of TN and of ER/PR+ . I had a scare last month another tumor on my reconstructed breast and that was B9. I know that the cancer can come back, but the chances are in my favor that it wont and I am very aware of what is going on in my body and check out everything  even though I hate the tests and surgeries and how I feel, but this is my life and I will not become a victim. I am 53 and have a beautiful daughter who just turned 29 and a beautiful granddaughter who will be 10 in May,I dont ever want them to go through want I have. be there for your Mom it will mean alot to her , no matter what the out come is. 

christina1961

Margarett,

I am not that far out from diagnosis but I had residual disease after chemotherapy and got additional chemotherapy in a clinical trial here - eribulin. I don't know if there are similar trials there in the UK for those who have less than a complete response to chemo.  I was initially diagnosed triple negative but they found a small amount of ER receptors in the remaining tumor.  My diagnosis was 2/5/11 - so far everything is ok. I am walking several times a week, have cut out 90% of the sugar I eat, and am now trying to reduce the amount of fat I eat.  Lifestyle changes are hard at age 51 but I just keep "starting over" when I revert to my old ways.  There is an interestng book by Dr. Keith Block that incorporates diet for cancer survivors. Also, there is an active thread on here for triple negative patients from the UK (I post on there, too - great group of women.)

MicheleS

Linda and I went through chemo at the same time... 3+ yrs out for me too!  I have a "real world" friend who is 10 yrs out.

As Luah stated: *most* of us *do* survive. 

xxoo

LNBCA

Congratulations on your almost five year anniversary My mom was first diagnosed with breast cancer in December 2006. She had a mammogram last month and they saw a suspicous 1.5 cm mass, and the biopsy concluded that it was cancer again, only this time they ran some tests and discovered that this cancer, along with her last cancer, was triple negative breast cancer. She has been living care free these last five years, thinking nothing of her getting cancer again. After looking up info on tnbc, I am so depressed like you. I cry every day. I wish I hadn't looked stuff up. Even going to triple negative forums gets me down. Reading about women who have had their cancer metastisis, I can't help but think this will happen to my mom some day. I think the worst. I shouldn't, but it's hard not to. My mom starts chemo this week, then after that is done, she will have her double mastectomy. I am hoping that all of that, along with her starting to excercise and eat better, (she has not been doing either these last five years), she will beat this, and never have it happen again. I know in my heart there have to be more long term survivors of this out there. I can't imagine how many women were diagnosed years ago, before this ugly term "Triple Negative" came about, are living there lives cancer free. We never would have known my mom had triple neg. five years ago, had she not had a new cancer appear just recently. This is a very good site for encouragment I am finding. Wishing you and your mom all the best!!!

1WonderWoman

Hello all-  On Twitter I received a text regarding promising studies on triple negatives.  Here is the link: http://www.torontosun.com/2012/04/04/doctors-decode-deadliest-type-of-breast-cancer

I know the title of the article is a bit ominous but the article itself is replete with such good, promising information, I thought you all might want to take a look

Best of luck- 

Karen3

Hi margarett,

 I am TN and in the UK too. I had neoadjuvant chemo just after I was first diagnosed in September 2009. Regular MRI's showed nil response to chemo - after four rounds of chemo my treatment was withdrawn. I had a lumpectomy Jan 2010 and have just had a bilateral mast following a 2nd primary BC in my other breast.You are welcome to PM me if you like.

Karen.