TNBC Survivors: Can I Interview You?

Pat,

First of all I would like to thank you for your blog and the amount of good information you put up there to help those of us with this disease.   I frequently go there to read.  I am sure you have helped more women than you will ever know.

Also I am happy to hear there will finally be a book coming out soon that will draw attention to tnbc.  Have you seen the new brochure put out by Lbbc's website in which they collaborated with the TNBCFoundation Organization to make this happen?  I was one of the lucky women who was chosen to participate in interviews for this brochure, it is absolutely wonderful.

I wish you much success.  I am sure there will be alot of people buying your book, I would be one.

My problem is in your mainly wanting to focus on pre-menopausal women.  I read many studies, articles, tnbc info on reliable websites and I realize this is the majority who are affected by this disease, unfortunately.  I understand your wanting to cover this age group for obvious reasons.

Here is my problem, to be fair to "all" women affected by tnbc I feel you will be withholding valuable information from those who might be "post" and older.  I participate alot in the http://www.tnbcfoundation .org  website and we, my guess here, may have close to a 1/3 of members over 50 with a membership of over 3,000 women and caregivers.

Your focusing for the most part on the younger ones I feel will give the older ones a false sense of security.  Reality is the fact that it affects women of all ages, ethnic groups although the majority of posters often times say they are white and over 50.  We've had them from a young 20 something to someone's mother over 80.

 I was diagnosed at age 56 and 60, now a 3 yr survivor as I am counting once again.  Another point I would like to make is that I think it is crucial that information regarding brca 1/2 be put out there for this group of women as most brca 1 and some brca 2 have tnbc but most tnbc do not have a mutation.  So brca 1/2, family history, to me plays a big part in this picture.  This can also be passed thru a father.

 This disease is as scary to someone over 50 as it is for the young ones.  No one, no matter their age wants to deal with this horrible disease and face their "possible" mortality.

I find it very hard to find studies, articles, trials, info regarding the older patient yet there are so many of them!  TNBC is a subgroup as we know and the older gal with TNBC is again left in the dust as the focus is only on the younger group.  We in the older group want answers as desparately  as anyone else diagnosed with TNBC.

I hope I have caused no offense here, not asking to be included in interview since I wouldn't qualify anyway, just throwing in my 2 cents.

Best Regards,

What is your cut off for younger women? I was diagnosed at 50 and brca 1 positive. You can read my diagnosis and contact me if you are interested. I would be happy to help. I won't be offended if you don't call! LOL 

  As to your statement in your opening post:

"as those I have featured so far are postmenopausal and white, which really does not reflect the TNBC reality."

  I think you are gravely mistaken.  You will find many, many of us.  Triple Negative Cancer is not as choosy as they like to make it seem.  I am caucasion, no cancer whatsoever on either side of my family, and was diagnosed at age 62, afer having yearly mammos since the age of 40.  So, as you can see, we are all over the board in color, size and age!!  I know 10 women I have met since my diagnose, they are all African American and of different ages, not one is triple negative.  Go figure, because I certainly cannot. 

I was dx in April 2007 with stage IV triple negative BC.  I was 42.  I have been receiving chemo ever since and it has been a long and difficult road.  I was tested 2x for the BRCA I &II and came back negative.  My mom and sister were both positive.  Go figure....... If you still need women to interview, please contact me.

I am a few months shy of being a 10 year survivor ! I was dx premenopausal but am menopausal as a result of chemo. Back when I was dx. TN didn't have a name...it was all about what you were not. And it always left one wondering whether we were lucky to not have more drugs and their side affects or unlucky to not have additional assurance. Once at a nurse moniterred support group she insisted I should be able to take tamoxifan. It is nice that this subset is finally getting recognition. Feel free to contact me if needed.

I had just turned 50 when I was diagnosed and was pre menopausal (until first round of chemo!).  I do have another twist on this though.  I am coming up on 3 yrs Sept 19.  Lumpectomy, AC/T, rads.  My husband & I both got laid off in Jan 2009.  I was doing ok using COBRA until my unemployment got "messed up" due to taking a part time job. Anyway, I no longer have insurance and I don't qualify for medical assistance.  I missed my last follow up appt with my onc since I could not afford the labwork. Trying to find help as a survivor is nearly impossible. Once you are done with treatment, none of the foundations are interested in you. Might be another chapter in your book. 

Thanks for listening,

Nancy

P.S. I am also white. I have an African American grandson but I don't believe genetics go retro!!

Hi!

Not surre if you're still looking for people or not.  I was 36 at dx, caucasion, married with 2 kids ages 2&4 at dx.  New to the forum, so I'm not sure how private contacts work, or responses to posted questions. 

Just skimming, I see a lot of age 42.  I am just a little past 3.5 years - with lost of nodes.

If you are still looking, feel free to contact me.

Lisa

I am Hispanic, 37 years old, before neoadjuvant therapy I was premenopausal but now I have chemo induced menopause (so happy of not having periods!). I was diagnosed in March 2011 as triple negative and I just finished my 6 round of chemo, oncologist gave me 4 rounds of Taxotere and Cisplatin and my nails got very black and 2 toenails fell of so the last 2 rounds he gave me Taxotere and Carboplatin, which it would have less side effects, I still ended up very sick with my last round, had canker sores all over my mouth and could not talk, swallow, eat, drink for about 2 weeks, it was the most miserable time I have ever had with my chemo treatment. Anyway, I had a mastectomy on Tuesday 8/2/2011 and I still have draining tubes. This following Thursday i have to meet with the surgeon to remove tubes and discuss pathology report to see what is next with my treatment. I have 3 children aged 9, 4 and 2 and Looking forward in getting better.

I, also, am Anglo and age 52 at time of diagnosis with TNBC.  Statistics are simply numbers.

Living large- I haven't noticed any changes having menopause except that I have no periods which is really good, at some point I thought I did but I think it was the steroids I was given after chemo...it's been a month after my last chemo and I haven't had any side effects at all, taste is returning and I feel good, a little sore with surgery...I thought I was going to be very unhappy after having just one breast but I feel fine, wish I had removed both so I wouldn't have to wear a bra later on. I noticed we have similar diagnosis, how are you doing? No recurrence for you and 2 years out? I am terrified of getting a recurrence and I haven't even finished treatment yet. Doctors gave me a poor prognosis. I also live in Tx.

Take care.

Dalia37 - I think we will always be scared of a recurrence since that is all we hear from people.  I too am scared but it is getting better with time.  This is going to sound odd but I was most frightened right after treatments ended.  Having chemo gives you a sense of protection or security blanket.  Because TN do not take pills after treatment to help prevent a recurrence like hormone positive BC patients you kind of feel like a sitting duck.  My onc did a study and is a firm believer that exercise and diet will reduce a chance of a recurrence by 50%.  Had my GP say Vit D can help prevent a recurrence.  I have started running (signed up for my first marathon in Jan and take Vit D every night) as  a way to feel like I have some control over a recurrence. But have always been athletic so I am not 100% confident that running is going to do anything but ruin my knees. LOL

maywin - well all I can say is me too... white, 45 at DX, thin, athletic, and no family history.  Still wondering how this happened.   Starting to think TN is not driven so much by family history but seems more lottery driven.  We seemed to have drawn the short stick.  But real glad to see you are 8 years from DX.  Very encouraging to us that have not yet hit the golden mark on the calendar.

Dalia37 - Good to hear from a fellow Texan.  Not many of us on the boards.  I am in the Dallas area.