TNBC Survivors: Can I Interview You?

PatriciaPrijatel

I am looking for 3+-year survivors to interview for a book I am writing on hormone-negative breast cancer, including TNBC.  I am particularly looking for younger women and African-American women, as those I have featured so far are postmenopausal and white, which really does not reflect the TNBC reality.  You can leave me a personal message here, or email me through my blog--hormonenegative.blogspot.com.  I look forward to chatting with you.  

sftfemme65

Well I was premenopausal when I was diagnosed at 42.  I'm white but if you would like to contact me feel free to do so.  I will be 3 years out this year

Teresa

PauldingMom

I think the "TNBC REALITY" is way off. Look around at the post here. Many of not most of us don't fit the bill when it comes to "reality". 

46, White, Pre-menopausal  

mkayk

I am 3.5 years from diagnosis.  I was 45 premenopause and I am white.  You can contact me if you'd like. 

PatriciaPrijatel

Thanks so much for your responses!  I will eventually contact you all one way or another, so I tell the story of this disease thoroughly--and show its human side.  Paulding Mom:  Yes, the reality here does not seem to match what the research says.  It is important to tell the story of all women with this disease, though.  I am also white, but I am postmenopausal, so I want to be sure that I get others' perspectives.  Thanks again, and take care of yourselves.  Pat

smithlme

47, white and pre-menopause...that's MY reality...

Edited to add that Sunday the 28th is my 3 year cancerversary from my first diagnosis.

slanderson

Hi,

I was diagnosed at 41 and will be five years out in July of this year.  I am white, though.  I was way premenopausal at diagnosis.  I am somewhere in the middle now.  I have had exactly 2 periods since chemo.

Thanks, Shannon

sftfemme65

You know its funny, ok not really funny at all but when I see all these 3 + years, the first thing I do is look to see if they had positive nodes.  Sometimes I feel so alone.

 Teresa

Rainenz

I'm white was 42 and premenopausal when dx with tnbc and was dx again at 51 with another tnbc when I was peri-menopausal. I am now almost 4 years out from that one.

 sftfemme65 I'm with you on the looking at number of pos nodes and as you will see below I had lots.

tibet

Rainez

Was your second primary also medullary featured or just pure IDC?

sftfemme65

Rainez,

Well here's to us both having long and healthy lives!  

Teresa

chumfry

The numbers on this board aren't necessarily an accurate reflection of racial tendencies for triple neg. I would guess the average black family is much less likely to have a home computer (and participate in social media) than the average white family.

--CindyMN (white and surgically post-menopausal at diagnosis)

janinvan

Pat--- An easy way is to e-mail me  --- janiceteach@hotmail.com

I had recurrence arond collar bone/pectoral muscle after about 13 years (original 1996 masectomy)

I'm taking intermittent chemo treatment and presently have an inflammation/swelling which developed inthat area.

Will maybe consult again with thoracic surgeon-- but it's a complex situation which could be risky for surgery....

Janice

tibet

Janice

Did you have TN back 13 yrs ago? It is unheard of a recurrence after such a long time for TN. What did your onc say about it? It is possible for ER+ to have a recurrence after such a long time but based on the studies for TN there has not been one recurrence reported for TN though after 8 yrs out. 

mbmoss

I am an almost 4 yr survivor. I was dx at age 30 with stage 2 multiple + nodes. Did great after multiple surgeries, rad, chemo. Ladt July dx with metz lungs. doing well so far ion current tx. I am white though.

tibet

mbmoss

If you had 17 positive nodes, then it would not be stage II but stage III.

Stage III

Stage 3 breast cancer is also divided in to two categories:

• Stage III A Breast Cancer-the tumor is larger than two centimeters but smaller than five centimeters (approximately one to two inches) and has spread to up to nine auxiliary underarm lymph nodes.

katkel

I don't think it is appropriate to post opinions on one's statistics- especially when you are stating she should have been a more advanced stage- I am not sure what your purpose was?

And- according to your definition- I would not have been stage IIIA, because my tumour was larger than 5 centimeters- but I most certainly was, as referenced many, many times by my esteemed Dr. at Johns Hopkins.

Staging definitions can and do change. Disputing anyone's information that they are willing to share to help others- I truly feel this is not in good taste.

I really don't mean to be rude, and I'm sorry if I offended anyone.  I just believe we are all here to encourage and support each other, and I don't want to start a trend where we question each other for an unclear purpose.

Sorry, just my 2 cents.... 

mbmoss

Katkel,

Thank You!

Maybe there was a misunderstanding b/w my Onc and myself. Maybe the definitions were slightly different nearly 4 yrs ago when I was first dx. Regardless of the stats, I was a bit brokenhearted when I read that comment. Thanks for letting me know I wasn't the only one a bit upset with it. Just going on what my Onc called it, and not claiming to know everything, or wanting put others down!

tibet

mbmoss and Katkel

I am so sorry that my posting has offended you..... Don't mean that. Thanks for pointing this out. I will be more sensitive going forward in my postings. I wrote that posting very quickly without thinking the sensitivity of it and I am truely sorry about it. I deleted the posting as it is indeed not meant to hurt anyone. Sorry if it did.

Yes we are here to encourage each other and help each other. We are all sisterhood.....

mbmoss

Thanks You!

katkel

No problem alex!

I can certainly understand- and I'm sorry if I came across harshly....  

Thanks!

Shirlann

Hi, I am 12 years post TriNeg, feel free to ask me anything.  I am white.

Hugs, Shirlann

cheranthia

I just passed the 3-year mark yesterday. Woohoo! I recently participated in a study for TNs in which a wider array of genes than the usual 5 (or so) were tested. They just called yesterday -of all days- to tell me my results were negative. Woohoo again!

I am white. I was pre-menopausal at diagnosis, but am now in chemopause. You can interview me if you'd like.

Indomitable1

Welll, I was (am) African American, premenopausal and 44 at time of diagnosis. Unfortunately, it has only been a year out. Can't wait to be 3 years post!!!

Chumfry-And although I have 3 computers in my home, including my personal laptop, and work with 2 computers daily at work....Oh-forgot my PDA/phone PC,  I don't always get on the boards to post secondary to my activities related to church, work and kids. Life is good!

 Good luck with your interviews, positive!

Dragonfli

Well, another caucasian,triple negative premenopausal before chemo, menopausal after the 1st round.

I understood that the object with being triple neg, was to put me into Would think that finding someone not menopausal after chemo & being TNBC would be quite difficult?

If you need another TNBC private message me. I was dx in 2003 @ 41 with IDC grade 3/3 lymph node positive - FEC chemo & radiation, with lumpectomy and re-excision after chemo for clear margins.

PatriciaPrijatel

Dragonfli:  Yes, chemo usually puts women into menopause, so I should have been clearer in my note--I meant premenopausal before diagnosis. Thanks to all of you for your responses.  I will ultimately contact those of you who are willing to be interviewed, as I work my way through this project.  I appreciate your being open to talking with me.  Pat

Meggy

Teresa, I'm right there with you...everytime I read about a TN survivor, I look at node status too. 

newalex, I remember when I first saw your posts, I thought maybe you hadn't had cancer because there was no diagnosis in your signature line.  For a minute there, I thought it was possible you were a guy without cancer (sorry for the misunderstanding)...but then I read some of your previous posts and cleared up my own confusion.  It's totally your choice of course....about the signature line but I think that's part of the reason for the confusion.

Dragonfli....so good to hear your story.  I can't wait to read this book!

Meg

Nordy

Dx at 37, just after the birth of my first daughter... went on to have another baby 3 years later. Diagnosed in 2005 - just hit the 5 year mark. So far, so good. I am white though, but feel free to contact me.

miss302

i hit the three year mark in april, and im only 30 years old, i had stage 3b TNBC (locally advanced disease) i now have lymphedema, i look forward to being contacted. 

LRM216

Newalex

Unfortunately, there are quite a few TNBC's after many years of being clear - 6 yrs. and up - that have recurred or it has metastized.    Why - their onc's can't explain it either - just goes to show you what a crap shoot this damn disease really is. 

LRM216

Chumfry:

Where do YOU live????  I don't know of any black family, and my grand-daughter's high-school is very diversified, that do not have at least one computer.