Will 30% of Early Stage (1-IIIA) go on to metastasize??
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fredntan, I am so sorry. Crap. Crap. CRAP!!!!0 -
fran you asked for hugs and we are giving you a big group one.0 -
Fran,
So sorry. ..:( What happened. ..they wouldn't scan you regularly? Crazy!
Violet
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fran, I'm so sorry.0 -
It's great to eat healthy--blah-blah...BUT it certainly doesn't NECESSARILY save one from getting cancer...sigh.
I worry that living "healthy" gives the general public s false sense of security. ..ya know?
Violet
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Fran, I'm so sorry. (((Hugs)))
I have to admit, I was one of those women who thought I was safe from BC, because I have no family history, eat mostly vegetarian, am not overweight, don't smoke, rarely drink, and always had my yearly mammo. With all this money going towards awareness and education, why was I so uneducated? A lot of women I know have even less knowledge than I did about BC.
I have a couple of questions for anyone. With the money that goes to research, how is the research coordinated? Do different organizations give to different research groups and if so, is the research duplicated, or does each research group focus on a different aspect of BC?0 -
Sorry Fran... F.....n BC.. Enough pink ... Put that money towards research.0 -
Fran - I'm so sorry. That really sucks. Big hug.
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fran. I am so, so sorry0 -
Andrea.... Great question about how research is funded. Here in the United States, most trials begin with the NIH. They coordinate, fund and follow most trials. They also fund trials with our federal taxes. Likewise, there are groups like Komen who fund trials. Their trials also get regulated through the NIH. Presently, I am the "patient advocate " arm for a proposed Komen research grant. A breast cancer researcher at Sloan Kettering is proposing a study and is requesting a grant from Komen. Komen requires as part of the proposal a "patient advocate." My role is to explain why in terms of patients is the study worthy.
One of the problems with the NIH is that applying for their grants is particularly difficult and plagued with problems. According to an article written in 2009 in The NY Times, it appears that the NIH will often give grant money to select studies. They prefer to give money to established researchers as well as to studies that are conservative where the outcome will be more predictable rather than invest in young researchers with maverick ideas. Of course there are private grants funded as well...like through Komen and the pharma industry. Those studies appear to be risky and more promising. The researcher that I am supporting is a young stallion! He has great ideas and I am keeping my fingers crossed that Komen will approve a grant for his work.
Fran.... I'm very sorry to hear your sad news. I wish you well.0 -
Fran, I am so sorry to hear your news. I hope it will make a difference that you were proactive about it.0 -
So very sorry, Fran. I just don't know what else to say.
Hugs
Carol0 -
Fran - so sorry to hear of your news. Wishing you the best.
VR - Has anyone told you recently how valuable you are? Thanks so much.0 -
Fran, I am so sorry. ((Hugs))0 -
Thank you, voraciousreader. That was very helpful.0 -
Voracious, that is exactly what researchers have told me too. That is why we get 500 studies on how we can extend the lives of stage 4 patients by 3.2 weeks instead of some sort of paradigm-shifting study.0 -
Fran, I'm so sorry about your new diagnosis. Whenever I see my stage IV sisters it reminds me that we need to be focusing on stage IV treatments. We have wasted enough money on "education" and "mammograms" and "prevention".
Prevention: I have read study after study. Every time I read one I say "Oh I did that". Is it even valuable to tell women this stuff? And yes, this month especially we get overloaded with articles. In USA today there was an article about prevention and pretty much all you have to do it not drink more than 2 drinks a week, exercise, watch your weight, and not due HRT. OK so throughout my life, I averaged about 3 to 6 drinks per YEAR, I exercised, and I've never been in the "overweight" category of BMI. Oh and no HRT and I only took birth control for 2.5 years. Then I'm sitting in the rads room waiting for treatment of breast cancer a second time, and I see an article how drinking two cups of coffee makes tamoxifen work better. Ha ha I did that too. Oh and took aspirin and exercised 150 minutes a week and even lost weight to be more in the middle of my BMI.
As far as mammograms go, my mammogram could not see my tumor either. The reason why they keep changing mammograms guidelines from 40 to 50 and back again is not because women don't get breast cancer at 40. It's because studies are conflicting as to whether it makes a difference catching it early. So that tells you its the biology of the tumor that makes the difference.
And yes statitistics quoting five year survival are not going to encourage me. So many of us have children to get to adulthood, and even then I think most are more interested in 15 or 20 years. I think those statistics are mostly because the studies run for that period, but I think the general public hears "98% of stage 1 will be cured".
I am not against charities helping women get screened and help women who have breast cancer, but I think most people are under the impression a lot more goes for research than does, ie Komen "for the cure". If you are donating your dollars, you can look up actual facts on charity navigator.
I am never sure how vocal to be on these subjects on facebook etc, or even in these forums. Do we scare those who don't know the facts? IIgnorance is bliss after all. The counter side is if we don't be vocal, they assume they can't get breast cancer cause they do mammograms, they assume that they will never get it because the take care of their health and don't have a family history, they assume that Stage IVers did something "wrong", and they say stupid sh*t to breast cancer patients.
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Here's the article from The New York Times that I was referring to:
"Forty Years' WarGrant System Leads Cancer Researchers to Play It Safe
By GINA KOLATA
Among the recent research grants awarded by the National Cancer Institute is one for a study asking whether people who are especially responsive to good-tasting food have the most difficulty staying on a diet. Another study will assess a Web-based program that encourages families to choose more healthful foods.
Many other grants involve biological research unlikely to break new ground. For example, one project asks whether a laboratory discovery involving colon cancer also applies to breast cancer. But even if it does apply, there is no treatment yet that exploits it.
The cancer institute has spent $105 billion since President Richard M. Nixon declared war on the disease in 1971. The American Cancer Society, the largest private financer of cancer research, has spent about $3.4 billion on research grants since 1946.
Yet the fight against cancer is going slower than most had hoped, with only small changes in the death rate in the almost 40 years since it began.
One major impediment, scientists agree, is the grant system itself. It has become a sort of jobs program, a way to keep research laboratories going year after year with the understanding that the focus will be on small projects unlikely to take significant steps toward curing cancer..."
http://www.nytimes.com/2009/06/28/health/research/28cancer.html?pagewanted=all&_r=1&0 -
Wow, VR that article is quite sobering. I will be so excited to learn if people who find food especially good tasting have trouble staying on a diet - NOT.
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I find the NY Times article just plain silly. Leading cancer centers are making significant progress, one of which has been making childhood leukemia 90% curable. 70 years ago I would most likely have died from breast cancer by now. And o yes.....I do like good food. I take the 80% approach there....cover what I need to eat to be healthy and not worry unduly about the rest.
A lot of this work is happening here in Seattle with the latest being.....
At Fred Hutch, where Holland’s research laboratory will be based, he will be senior vice president and director of the Human Biology Division, an interdisciplinary program that encourages collaboration among faculty with a broad range of expertise – from molecular and cellular biology to genetics and clinical research. This unique structure fosters laboratory-based, computational and clinical research that yields discoveries which can be rapidly translated into treatments for cancer patients.
Dr Eric Holland and his entire team were poached from Memorial Sloan Kettering in NYC. They are building out their solid tumor research faculty through recruiting the brightest minds from all over the world. I have had the honor of meeting some of them in my brain tumor nonprofit work. He is bringing his thinking about brain tumors to all solid tumors, including breast cancer. Exciting stuff.
Almost every time I go for a walk, run, or cycle here in Seattle, it is past a biotechnology firm or lab. One of these is the Helix Bridge built by Amgen. Or past Dendreon which is just down the street. I can see the Omeros sign from my apartment.
With breast cancer, we have had a major leap forward in the past decade or so: Herceptin and now other therapies that improve its effectiveness. Taxanes in the past 20 years; AIs in the past 15. All have significantly improved survivorship.
I think it is a series of breakthroughs that will take us there, as cancer is a number of different diseases, even breast cancer. I have no idea which will be next, but melanoma is a likely one. I find all this extremely exciting.
Even being diagnosed as recently as 4 years ago, I would probably have received slightly different treatment. I would have had genetic testing, and most likely, neoadjuvant chemo. Perhaps less invasive surgery and less intense radiation. I would not have needed to enroll in a trial to receive dose dense chemo. So things continue to change.
I am looking forward to us making quantum leaps in survivorship in the next 20 years.....and in most cancers, not just breast cancer. I can just see myself then talking to the next generation of women who will say.....you were treated with WHAT????
And o by the way, I think that we will be doing blood screening, not mammograms. With testing being infinitely cheaper, more accurate, more comprehensive, and much easier. - Claire0 -
the women I've talked to who are long term stage iv have not changed their diets. It is a biology of tumor and biology of person with tumor thing. Yes, they're starting to get better ideas in how this stuff works. But treatment is still a crap shoot. Many good people die every day, 40,000 a year. Cancer is a sad game of whack a mole0 -
Claire, the biggest takeaway I got from the NY Times article was the amount of taxpayer money being wasted on minimally useful research funded by NIH. I say, thank goodness for Revlon and Dr. Slamon's persistence in getting Herceptin developed - otherwise I and many others would have a much worse prognosis.0 -
Claire....You are correct....We ARE making progress! Great progress! But NOT the progress that was expected when President Nixon announced the War on Cancer. If you read the terrific book written by Eric Topol, MD, The Creative Destruction of Medicine, you will get a glimpse of what the future of medicine will look like and it IS happening NOW. And I agree, we will one day soon look at mammography and all types of imaging and it will look backward! He devotes a chapter to cancer treatment and refers to Herceptin and the discovery made by Dr. Slamon and his brilliant team. The future of medicine will involve genomics more than imaging! Furthermore, his chapter on clinical trials is quite provocative. Future clinical trials will be more genomic based and take shorter periods of time to conduct. Today, clinical trials cost a prohibitive amount of money and take too long to get statistically significant data AND then, once the data is significant, then patients like you and I are left to figure out how the data affects us as individuals.
The point that I'm trying to make about clinical trials today IS that we are using an antiquated model and that is holding back discoveries. For sure we ARE benefiting from clinical trials, but the system is broken and needs to be fixed. Dr. Topol, who is one of our country's most admired physicians lays out a framework in his book about what needs to be done. If you don't want to read his book, he has many links on the internet to his articles and speeches...including a TED talk. Enjoy!0 -
Topol: Get Rid of the Randomized Trial; Here's a Better Way
"Hi. I'm Dr. Eric Topol, Director of the Scripps Translational Science Institute and Editor-in-Chief of Medscape Genomic Medicine and theheart.org. In our series The Creative Destruction of Medicine, I'm trying to get into critical aspects of how we can Schumpeter or reboot the future of healthcare by leveraging the big innovations that are occurring in the digital world, including digital medicine.
But one of the things that has been missed along the way is that how we do clinical research will be radically affected as well. We have this big thing about evidence-based medicine and, of course, the sanctimonious randomized, placebo-controlled clinical trial. Well, that's great if one can do that, but often we're talking about needing thousands, if not tens of thousands, of patients for these types of clinical trials. And things are changing so fast with respect to medicine and, for example, genomically guided interventions that it's going to become increasingly difficult to justify these very large clinical trials....."0 -
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http://www.youtube.com/watch?v=0B-jUOOrtks
http://www.youtube.com/watch?v=w2s9Fv_j1eg
....And for anyone who wants to know....Yes! I ADORE Dr. Topol!0 -
Thank you so much for posting, Voracious. I watched both, and amazingly this topic is important to a project I am supporting. So forwarded to my client, as I think we need to prepare for the future of what I would call "self-service diagnostic testing". I also forwarded to a friend who comes from the field of medical devices. Major impact there too.
My own question is adoption. This will play out differently than depicted. This is fascinating stuff. Of course, I am looking at all this both as a patient (who is awaiting results from her latest mammogram) and my background in technology services.
A reminder too that I need to get my hide over to Radio Shack and get the internet access part of my Galaxy sorted out. It's crimping my style, and they will know. Great stuff, and exciting times in medicine. - Claire0 -
Claire from Seattle???? Now how could I have ever guessed that you were in the technology sector???!!!!
Have you read the wonderful novel, Where'd You Go Bernadette...which pays dubious homage to your great city?0 -
Chickadee, I like your Phyllis Diller quote. Do you remember Norm from the tv show cheers? He said, "It's a doggy dog world and I'm wearing MilkBone underwear". That's how I'm feeling with this bc diagnosis :-)0 -
I have to say, most women on this board have been wonderful. It is very comforting to know I can login when I have a concern. However, I try not to look on this site very often for fear I may read something that is very upsetting. Well, unfortunately today is one of those days. To read that up to 30% of node negative women will develop mets? Upsetting. I was st 2 lobular, node neg. st 2 because of 3 small tumors. <1cm each. Had TACchemo. I try to live everyday believing that I will be ok. If not...what is the point? Before breast cancer, I thought I lived a fairly healthy lifestyle. But not..I didn't excercise regularly, had alcohol from time to time. Ate dairy and cookies. But was a vegetarian and ate lots of veggies. Stressed alot too. Since diagnosed, I'm vegan,noooo alcohol, no added sugar,nothing white...flour, pasta. Drink only lemon water or green tea. Take femara, and astragalus, curcumin, maitake. Walk 45 minutes every day. Lost 40 lbs. I have to believe that eliminating alot of these estrogen promoting habits has helped reduce my risks. But I know there is no guarantee. I know thousands die every year from breast cancer. But I will keep up with these lifestyle changes and have peace that they will tip the scales in my favor. And also keep them up because 3x as many women die yearly from heart disease. And I will put my seatbelt on tomorrow because millions die every year in car accidents. God bless all.0
