New Website just for Triple Negative Cancer

yikes, that's a depressing website!

I went straight to the Goals section and was very impressed! I've looked at alot of reasearch and I'm thrilled that advocates have come together to become our voice with researchers for new treatment options. This is a great start. Thanks for sharing! God is able, Stephanie

I think they're trying to "educate" people that triple negative is a serious business.

Although the info on the website doesn't sound good to us, I still support their intention.

I agree, we need this, thanks for the link,

I found an email address on the site and gave them a little feedback about the homepage. My mom has/had triple negative and I would not forward on this site to her ... she know's what she is facing. Let's see if the feedback works?!

I agree it is a very depessing web site, I am triple neg stage 1, and had chemo, and my Doctors say that I caught it at a very early stage, and no nodes were involved thet she feels I have a good chance to beat this. I do regular visit every 3 month for blood work which if any thing is wrong blood test will show. I am going to see a genetic counselor, and have some testing done. We have to keep a positive outlook on this and be strong.

Thanks

Oh, I am very impressed. Personal and caring!!!!!!!!

I just checked this website and I think it's good. If it wasn't strongly worded it wouldn't make an impact. It could be very difficult, however, for those just diagnosed as triple neg and googling for information and coming across this. I wasn't shocked because I know about triple neg.

I am curious about one thing though...I was under the impression that IBC was more aggressive than triple neg. I think that IBC is also rare..not sure which wins in the rarity dept, but seems that both of these areas need more research and targeted treatments. Guess that's off topic, but, I'm wondering if their claim was totally accurate???

Ravdeb, Its my understanding that IBC is the most agressive form of bc but I rhink they were talking agressive in relation to non-triple neg. I have triple negative IBC. But, I had a great response to chemo.

I think this website is bogus. First of all they have a P.O. Box to send donations. They misspell basic cancer terminology. The topper for me is it is one of those sites that won't let you leave. In other words when you back click it just keeps popping up their website.

I will say that I was dx'd May 2006, had a lumpectomy with quite literally the top breast surgeon in Los Angeles. My oncologist had done extensive research, teaching and hands on treatment with my BS. My oncologist is now in private practice with another oncologist whose name you would all recognise. I was a stage 11. Had 4 months of dose dense chemo and 7 weeks of daily radiation. At my initial 2 hour consultation, which they tape and give a copy to the pt. my oncologist said my situation was excellent. No treatment at all yields a 70% survival rate and with the treatment plan they had set up for me the survival rate was 95%. By the way, all of these doctors were not only outstanding in their knowledge of their given fields but also had patient rapport the moment that you walked into their office. Anyway, that's my experience and none of these MDs have any reason to lie to my husband or me. I know I am very fortunate to have access to the level of care that I do. Think positively ladies! Gail

Stage 2 has a 70% survival rate without treatment????? Really? That's not my understanding at all. Please post some fact links for this statement please.

Hi everyone-I did do some telephoning to make sure a couple of the doctors on their advisory board had really lent their names to this website. I did get one office manager who said the MD was an advisor. So maybe they are more legitimate than I first gave them credit for.
I do agree with you, ravdeb, that each doctor has their own way of reaching the stats that they do and I am sure that my doctors take theirs from their own patients after working with triple negs for decades. All I know is that I do have highly respected MDs. Last week I had an appt with my oncologist and had read some of the postings about triple negs. I went in loaded for bear and my oncologist assured me again that my prognosis is excellent. This office has stage IV patients all the time and they are very forthright with them. The therapist on staff is very honest also. I have a friend who is being treated at the same facility. She is a stagr IV and her oncologist has held nothing back from nor tried to mislead her. Anyway, that's my experience for what it's worth to any other triple neg. For myself, I feel so fortunate to be in the care of these doctors.

If we do not raise awareness of Triple negative BC then those 15% with it will continue to perish. They now spend all the major research dollars where it will help the most people. 100% of the research dollars go towards helping the 85% group. The stats are really bad for triple negs, but don't shoot the messenger.

Hi everyone. We caught the buzz that people on this website were discussing our organization and, in particular, our new website www.tnbcfoundation.org. We wanted to introduce ourselves and tell you a little about who we are and what we hope to accomplish.

We are a group of young moms who founded a non-profit organization called the Triple Negative Breast Cancer Foundation (TNBC, for short). Our organization is made up entirely of volunteers. We started it in response to our close friend’s diagnosis with triple negative breast cancer. Our friend’s name is Nancy. She is 37 years old and has a 5 year old daughter. She has been battling this cancer for over two years.

After Nancy’s diagnosis we desperately searched for information and answers about this type of breast cancer, but so little was available. Research in this area is minimal and most people are completely unaware of the existence of triple negative breast cancer.

We founded TNBC to increase awareness and to raise money for research targeted specifically toward triple negative breast cancer. We were then able to successfully recruit some of the top medical minds in the field to advise us and to guide us (one of our Advisory Board Members, Dr. Eric Winer, was recently named Chief Scientific Advisor to the Komen Foundation). We launched our website, www.tnbcfoundation.com, hoping to reach out to women suffering from triple negative breast cancer and to the public at large in order to ignite interest in our cause. We added “TNBC Talks” to our site to provide a forum for women diagnosed with triple negative breast cancer and their loved ones to connect and share information.

We are very proud of what the foundation has been able to accomplish in such a short time. We recently hosted our inaugural fundraiser - “Peace, Love & A Cure” - in Nancy’s honor. The event was an enormous success – raising more money than we ever thought possible – OVER $200,000! We will be posting more details about the event on our website shortly. We are hopeful that this is only the first of many successful fundraising efforts and we look forward to involving more members of the TNBC community in future events.

As a relatively new organization, our website is continually undergoing revisions. We are working to make it even more informative and, we hope, more helpful to our visitors. To that end, we are looking to add a Spotlight Stories section, which will highlight the experiences of certain visitors to our website. We have received emails from many women diagnosed with triple negative breast cancer who are living full and happy lives. We hope their stories can offer strength and hope to others living with this disease. If you would like to share your story, please let us know.

Please visit us and let us know if you would like to get involved.

Peace, Love & A Cure,

Hayley, Allison, Andrea, Sharon & Claudia
Triple Negative Breast Cancer Foundation