kayb I agree that getting involved has given me a better understanding of all this.

I was pretty pissed at Komen and I still won't buy their pink shit but I agree the do some good work… and without that research money some of the things happening now might not of been funded. I am happier at the ACS also because it isn't just breast cancer, but all cancer. I know last year I didn't support my friend who has been doing Komen for decades. I'm done about face. She knows how I feel. She on the other hand was so excited to see me as a team lead and raising money for breast cancer, and donated…

She made me realize that we are fighting for the same thing, to save others from this nasty journey and mostly A CURE (but I'll take a vaccine too). 

Cottontail everything helps. Money going to research prevention is good too. Everyone has choices. 

When I see a video like the one below I know I would like to see a cure for those who have mets… linky to YouTube video | Breast Cancer Awareness Project | New Zealand  

I am in tears and have to take a break less than 1/3 of the way everytime I see this video.

gilly of course there is no guarantee. The real message of this video is to be sure that women are at least getting their check ups. Ads are not effective if they send out too many messages. It confuses people.

But look at me. My tumor was 6-6.5cm. I had a breast exam 5 weeks before and my gyno didn't even notice the firm area. No one ever felt a lump. Mammos didn't show anything prior to that. But would would have happened if I waited another year! So sure some still slip through but a lot more women will be saved if they go and get their exams.

I met a woman in her 40's last week… it had been 6 years since her last mammo! Some women don't go because they are scared to find out. Catching it early is key in so many cases.

Lago - the speaker in the video says "I didn't catch it in time." There is never a case where one can say "I caught it in time." We can only HOPE this is true. I know she is making a point but I see problems with statements like this. It makes it sound like it's her fault - and of course it isn't, and I think we will have to agree to disagree on the whole notion of catching it early. Mammograms have been made to sound like a great advancement. There are a mediocre tool at best.

Good posts cottontail and kayb

In Grand Rapids, Michigan they have "Bras Across the Grand" (a river) sponsored by the American Cancer Society.  On their Facebook Page they say:

Breast exams, mammograms and other screenings increase the chances of detecting breast cancer early, when they are most likely to be curable.

Did someone forget to tell me that BC is curable????

Grannydukes I think you are right. Seemed like more Pink last year. Of course it was right after I finally started feeling well enough to get out much. But this year I'm on the lookout for it and it still is lots but doesn't seem as much.

http://post.mainelymediallc.com/news/2012-10-19/Letters/Neighbors.html

I am in the local paper this week. I am trying to use the whole pink thing to help local women and men with breast cancer. I think we are all aware of BC, but it is a financial burden for so many of us. I truely don't believe the drug companies will ever let us have a cure or vaccine so helping anyway I can helps me give back. I was surprized they printed the name of the store I had gone to that had a whole display of pink crap with NONE of the profits going to the cause.

Dianarose, that was really a good article. I am glad they did mention the store by name. Bet they send out a notice that the clerk is wrong and they do contribute! And that right now they are scrambling to find some where to donate so that will be true. LOL

I Didn’t Know Then What I Know Now « 

This is a well-written essay by Lisa Valentine, diagnosed with bc in 2008.  She speaks of her transition from being an avid Komen supporter to a new kind of breast cancer advocate.  If any of you read it, I'd like to hear your opinion of what you read.

I too just read it....A very well written honest article.

We gotta keep this goin.....even after focktober!!!!!!

The time has come....We are getting closer and closer.

dlb, I thought Lisa's article made very good points.  

Her last comments were about turning down a request to donate to Komen from a bagger at a grocery store.  She writes she felt:  "Sadness for the team members working so hard for an organization that has lost sight of the ultimate goal to end breast cancer, and that has gotten too powerful at the same time. Sadness that they don’t know what you and I know."  

I just experienced something similar!  A child psychologist who comes to our school occasionally started a conversation with me today which touched on cancer donations and the strides being made in terms of a cure.  She really believes we've made progress.  It made me very sad to know how uninformed she is.  I do think many people don't want to face much reality in this matter.  It scares them.  And they want to believe that they can do something very simple such as buy a pink do-dad and it'll help.  They don't want to get TOO involved.  Don't want to have to think too much about where their donation dollars are going.  Livin' in LaLa land.  Sigh.

My MO wanted to give me Herceptin even though I am HER2-. He said it wouldn't help me but it would give them data maybe to help others. I was like, wait a minute, I am stage IIIc, what do you have to help me? He kept coming up with all kinds of trials that wouldn't help me. My MO is the head of clinical trials in this area. I might be willing to take him up on one if it pertains to helping me, but I don't want to be a guinea pig for him. No offense to those who are HER2+. We are all looking for ways to help us survive.

DevineMrsM-I cheated....i took some of your words and put it on fb...here is what I said......

It saddens me that so many of my freidns and family members work sooo hard for organizations that have lost sight of the ultimate goal to end breast cancer.Every single person is aware...FIND A DAMN CURE...

This month I've read many articles about how our donation dollars for breast cancer are being spent.  My eyes have also been open to the fact that despite billions of fundraising dollars, not much has changed.  

Twenty-five years ago approximately 40,000 women in the U.S. died each year of breast cancer.  

Today, approximately 40,000 women in the U.S. die each year of breast cancer.  

Here is an article, please forgive the great big title, this is how it transferred from the web page I got it from and I don't know how to change the font size.

Are You Aware How LITTLE Has Changed in Breast Cancer in 25 Years?

Fran Visco

National Breast Cancer Coalition President

 Twenty-five years ago, I sat in my doctor's office and heard these words: You have breast cancer. That was in 1987, when the world's population reached five billion, a gallon of gas was 89 cents, Ronald Reagan was president and the FDA approved AZT for AIDS.

I was 39 years old and a litigator at a Philadelphia law firm. My husband and I were enjoying being parents to our 14-month-old son. I paid attention to politics and to women's issues and served as a community volunteer.

I knew nothing about breast cancer. I thought since I had no family history, I did not have to. My diagnosis shocked me. So I responded in the only way I knew how: As a lawyer, I researched, analyzed and strategized. I learned that fewer than 1 in 4 breast cancer patients have a relative with the disease. That I was young to be diagnosed. That I had ER- breast cancer and that had a worse prognosis than ER+. That my cancer had spread to my lymph nodes. I decided to have a lumpectomy and radiation and I chose a different chemotherapy than what was recommended. I wanted something a bit less toxic.

I do recall sitting in the recovery room after my biopsy. The nurse entered the room, looked at me and my husband, and burst into tears. I remember thinking, "Oh my. I am going to die."

Twenty-five years later, I am still here. I don't know why. Twenty-five years later, and much has changed in the world -- the price of gas certainly, and so many other things. But if I were diagnosed today? Not much would be different. I would have the same treatment. And face the same prognosis. And have the same uncertainty. Not much has changed for women with breast cancer.

What troubled me then was that the medical profession had few answers for us. In 1987, the doctors did not know why some people developed cancer while others did not. They did not know why some cancer patients survived while others did not.

While the technology has advanced and we know much more about the science of breast cancer, we still don't know the answers to these questions. We still don't know why some cancer cells appear to be dormant for decades only to reemerge in other organs, or why some women are diagnosed with Stage IV breast cancer while in their 30's. And we still treat women with surgery, radiation and toxic chemotherapy. We still don't have the information we need about breast cancer so women can make better treatment decisions, avoid overtreatment and avoid death from the disease. We still have too many women and men who are dying from breast cancer. We have really learned so little that matters. It still feels like a crap shoot to most women, the same as it did to me 25 years ago.

One change is that today we are swimming in information and in data. The age of genomics is giving us vast amounts of information, as recent publications on breast cancer subtypes and genomics have shown. But gathering information should not be the goal. We are already sitting on mounds of data we do not know what to do with. While the identification of genomic profiles in breast cancer is an important tool that may lead to clinical success down the road, we must take care not to over-promise. Little has actually changed for women and men at risk and those with breast cancer because of this technology.

What does all this information mean for patients and those at risk? What has changed since 1987? More attention on breast cancer and awareness of the disease. More funding for research and organizations. Yes. But what about the things that really matter to women? Less treatment? More lives saved? Not much change there. Back in 1987, a woman's lifetime risk of developing invasive breast cancer was 1 in 8. Today? The same: 1 in 8. In 1987, 40,534 women died of breast cancer. The estimate for 2012 is that 39,510 women will die. Estimated diagnoses for invasive breast cancer have nearly doubled from 130,000 in 1987 to 226,870 in 2012. This is not the change I was seeking 25 years ago.

I have another vivid memory from the time of my diagnosis: Loss of control. I had no control over the fact that I had breast cancer. I couldn't really control the outcome of that diagnosis. I could choose one treatment over the other, but there was no promise that anything would work. One thing I could control though was what I was going to do about that. What I could do to change things for myself and for others.

I was fortunate. Within a few years of my diagnosis, I was invited to a meeting of 60 women (and one man) in Washington, DC to discuss an idea -- a national organization built as a coalition focused on ending breast cancer. That organization would become the National Breast Cancer Coalition. For the past 20-plus years, NBCC has been at the forefront of the fight to end breast cancer, demanding funding for research that saves women's lives, overseeing how those funds are spent, creating programs to provide access to care for uninsured and underinsured women with breast cancer and challenging our nation's leadership to make the end of breast cancer a national priority.

It has been 25 years since my diagnosis and 21 years since I came to the first meeting that launched the National Breast Cancer Coalition. It was two years ago that we set a deadline to end breast cancer by January 1, 2020. And, we have a plan to get there. But we need your help and support. So, take control and take action to create real change in breast cancer. Let's bring about outcomes that matter -- like lives saved. We can control that. When I am a 30-plus year survivor, I don't want to be writing a blog to you that says once again, "Nothing much has changed." Please,join our movement. Together, we can end breast cancer. My life changed with my diagnosis in 1987. I hope we can change the lives of others by saving them from that same experience.