Breaking Research News from Breastcancer.org
Comments
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I realize it's not the most scientific methodology, but are there issues where polls on here would in some way contribute to knowledge?
Maybe more on the QOL issues, or things having to do with our perception of the medical system, or even with how we feel about BC organizations?
IE..BCO poll says patients feel they were (or were not) given adequate information about surgical side effects or BCO poll sugests patients feel they need better access to physical therapy.....or even is the pink ribbon played out or a powerful symbol? Maybe even things dealing with employment issues or use of social media.
It would give you a chance to get into the news perhaps.
I don't know a whole lot about online poll methods, but just an idea. It could give us a voice beyond this website.
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Interesting that you suggest this now -- we are currently in the process of discussing this very idea! Great ideas too -- thanks for the suggestions, we'll pass them along. We certainly would love to see this type of community voice as well, and hope we can implement this soon!
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Pregnancy After Diagnosis Doesn’t Seem to Affect Recurrence Risk
February 1, 2013
A study suggests that women who get pregnant after being diagnosed with breast cancer have the same recurrence risk as women who don’t get pregnant after being diagnosed. Read more…0 -
Obesity Myths May Undermine Weight Loss Attempts
February 7, 2013
A study has found seven myths related to obesity and weight loss are commonly mentioned in scientific papers and popular media, and that these myths may be undermining people’s attempts to lose weight. Read more…0 -
Focus on Prevention, Says Interagency Breast Cancer and Environmental Research Coordinating Committee
February 17, 2013
A federal committee said that breast cancer research should focus on prevention and understanding how environmental factors affect breast cancer risk rather than on diagnosis and cure. Read more…0 -
More Studies Show That Mammogram Rates Have Dropped After Task Force Recommendations
February 19, 2013
Research has found that fewer women are getting screening mammograms since the USPSTF recommended that screening mammograms start at age 50 for women with average risk; fewer women being screened may lead to breast cancer going undetected. Read more…0 -
T-DM1 (Kadcyla) Wins FDA Approval
February 22, 2013
Kadcyla, a targeted therapy medicine, has been approved by the U.S. Food and Drug Administration to treat HER2-positive metastatic breast cancer that has previously been treated with Herceptin and a taxane chemotherapy. Read more…0 -
Women Age 66 and Older May Be Able to Get Mammograms Every Other Year, Study Suggests
February 22, 2013
A study suggests that getting a mammogram every other year offers just as many benefits as getting a mammogram every year for women age 66 and older. Read more…0 -
New Study Adds More Support to Connection Between Risk and Regularly Drinking Any Amount of Alcohol
February 22, 2013
Results from a new study support the connection between regularly drinking even moderate amounts of alcohol – as little as one drink per day -- and cancer risk: Alcohol is responsible for about one of every 30 cancer deaths in the United States each year. Read more…0 -
Benign Breast Disease Increases Risk in Black Women
February 22, 2013
A study has found that the characteristics of benign breast disease that affect breast cancer risk are similar for both white and black women. Read more…0 -
Multiple CT Scans and Nuclear Imaging May Increase Breast Cancer Risk
February 22, 2013
From 2000 to 2010, use of CT scans increased dramatically and a study suggests that more CT scans may lead to a higher risk of breast cancer in women, especially young women who have repeat scans. Read more…0 -
More Younger Women Being Diagnosed with Metastatic Breast Cancer
February 28, 2013
During the past 30 years, more women age 25 to 39 were diagnosed with metastatic breast cancer. Read more…0 -
FDA Approves New Silicone Gel Implant
March 1, 2013
The FDA has approved a new silicone gel breast implant for reconstruction as well as augmentation. Read more…0 -
Very Early Study Suggests Herceptin May Help Treat Some HER2-Negative Breast Cancers
March 4, 2013
A very early study done in mice suggests that Herceptin may effectively treat very small breast cancer tumors in bones, even though the original cancer was classified as HER2-negative. Read more…0 -
Both Round and Shaped Silicone Gel Implants Offer Good Results in Breast Reconstruction
March 13, 2013
A study has found that both round and teardrop-shaped silicone gel implants offer similar good results for breast reconstruction. Read more…0 -
Many Women Newly Diagnosed with Breast Cancer Have PTSD Symptoms
March 13, 2013
A study has found that about 23% of women newly diagnosed with breast cancer had PTSD symptoms. Read more…0 -
Smoking Linked to Higher Risk of Breast Cancer
March 13, 2013
A large study has found that smoking increases breast cancer risk in women, especially women who start smoking before they have their first child. Read more…0 -
Radiation to Treat Breast Cancer Linked to Future Heart Problems
March 17, 2013
A study looking at women diagnosed with breast cancer who were treated with radiation therapy between 1958 and 2001 found these women had a higher risk of heart problems later in life. Read more…0 -
FDA Approves Lymphoseek to Help Find Lymph Nodes in People with Certain Cancers, Including Breast Cancer
March 18, 2013
The FDA has approved a medicine called Lymphoseek to help doctors find and map lymph nodes in people diagnosed with breast cancer and melanoma. Read more…0 -
Study Suggests Full-Fat Dairy Products May Be Linked to Worse Survival
March 27, 2013
A study suggests that women diagnosed with early-stage breast cancer who eat full-fat dairy products after diagnosis are more likely to die from breast cancer than women who eat low-fat dairy products after diagnosis. Read more…0 -
Combination Hormone Replacement Therapy Linked to Higher Breast Cancer Risk in New WHI Analysis
April 3, 2013
A longer-term analysis of information collected in the Women’s Health Initiative study has found that using combination HRT is linked to a higher risk of breast cancer. Read more…0 -
This comment is from Page 1, about lumpectomies.
I myself have noticed on this board, even tho all things are not equal here, I don't reckon, that so many ladies who had lumpectomies wound up getting a mastectomy anyway. But then again, I think it would make good sense for the studies to lead to parameters guiding everyone on what cancers do better with lumpectomies.
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Dear Wonderful MODS,
You all ARE "mod," which was a term we used back in the 1960s, a well-dressed and styled model would be "mod." Ummmm, I have an idea similar to the one at the top of this page, where you could maybe do a poll type deal. By asking us random people who simply have breast cancer (and others) and seeing if in the last ten years they tend to blame their cancer on XYZ. For example, witih me, I blame an antidepressant SSRI Lexapro on mine, and also we just moved to a diff house in town, and I don't think they washed out the antifreeze in the dishwasher lines. They'll put that stuff in pipes to keep them from freezing. So, perhaps you could limit the first (probably of three) polls to drugs we remember having a hard time with, about five years before we got cancer. Also ask if there was a particular food or drink we like a whole lot and consume endlessly. Well water or city water, small-medium-orlarge city, very deep depression or high anxiety and overall health. Those are just a few. Ya'll keep up with reading these forums enough to know what all might turn up as common amongst us all. These first ideas might be things we consume (air, water, foods, pills). The next one might be daily habits, perhaps? It's just too big a bear for me to take on, and I don't know how to set up a poll, nor do I know if it can be multiple choice or yes/no, or just exactly what wouold be easiest for you all to process, or if you see some stuff right off the bat that is the same, you could send the results off to a research group, a university might have some grad students that would do it or set up a computer program to do it. Perhaps you could make a general announcement section up at the top of all the topics, that says anything you want us all to know at once, or let us know there's a poll stuck in her somehwere. But like here, it's been SO long since I posted in a diff forum than the one I'm in, I came here, and halfway thru the first page, I found a topic to "Reply" to, and I hit that and typed (the one above), and it came up waaaay back here! Sorry, or I reckon I wouldn't have replied about it. So, could be someting like this, just for our group, would be a god idea to sort of separate out somehow.
Yours, Gail
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dogeyed, I'm not sure which study you are referring to on page 1, but I wouldn't draw the same conclusion that you do from your observations on this board, "that so many ladies who had lumpectomies wound up getting a mastectomy anyway".
Most women who come to the board for support during their diagnosis and treatment period end up leaving sometime after their treatment is done. We never hear from most of these women again, which is a good thing because it probably means that they have moved on from breast cancer and are happily off living their lives. But if someone does have a recurrence, or if for some reason they decide later to have a MX or BMX, that's when they will come back here. If they valued the support they got at the time of their original diagnosis, they'll want to get that same support again as they deal with anything new that develops. So the women that we see coming back for MXs after a lumpectomy don't represent all the women who've had lumpectomies; they are just a very small subset of that original group, but they are the only ones who come back here.
Similarly, if you read this board, you'd think that most women diagnosed with BC have a recurrence. Of course that's not true - most women do not have a recurrence after their initial treatment - but it's only the women who have a recurrence who come back here. So we read lots of posts from women who have a recurrence 2, 3, 5 or even 10 or 15 years after their initial diagnosis, but we don't see many posts from women who were diagnosed years ago who come back and say "Look at me, I'm all these years out and I'm doing great!". But in fact the second group, those doing well, is vastly larger that the first group, those who've had a recurrence.
As for doing research on this site, as someone with a professional research background, unfortunately I can tell you that while there might be some interesting findings, the research would by no means be reliable or meaningful or in any way accurate. We are a self-selected group - women who are diagnosed with breast cancer who choose to come onto the internet to discuss it. Although we are a very diverse group, demographically we are not representive of all women who get breast cancer. I suspect we skew differently in terms of age and possibly in terms of where we live. Then, if the Mods were to post surveys, only those interested in the topic would reply. So there's more self-selection. If there were to be a survey that asked "do you blame your BC diagnosis on any drugs you may have taken?", you can bet that everyone who does blame a drug would reply, but most of those who don't blame a drug would probably pass the survey by. As a result, the findings would not be accurate at all.
The other problem is that asking questions about habits and lifestyle and enviromental impacts of where people live, without understanding more about the individuals who answer the questions, doesn't tell you anything. There are so many possible influences on breast cancer risk, and you can't reach any conclusions about any one risk factor without trying to equalize all the other factors. You can't conclude that a particular drug or food or environment factor is harmful without understanding whether the women who appear to be affected by that drug or food also had a family history of breast cancer, and/or took birth control or HRT and/or had a fatty diet and/or are overweight and/or have extremely dense breasts, etc. etc.. To try to separate the effect of one risk factor from all the others is a huge undertaking, requiring a very large sample size and a long period of study. There are many studies that have been done that have tried do that, but the results are always presented with words of caution and comments that the conclusions drawn might not be fully accurate.
It does seem a shame to not be able to take advantage of the group we have here, but unfortunately the group here is not representative of all women with breast cancer so whatever we find out from us won't necessarily be accurate at all.
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Gail/dogeyed,
Surveys are difficult also because it is usually hard to avoid bias.
On the one hand, I too think that one huge database about all of us would provide answers that we can't see without it. Yet on the other hand, creating that kind of a database in a way that would provide a high degree of accuracy to be meaningful and useful is quite difficult.
A.A.
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BEESIE, I suppose I made an error about it being on Page 1. All things being equal with our machines, it's on Page 2, near the top, and I am very sorry about my mistake. I should have put the title and dates of the post, then there would have been no mixup. The title of the post is "About 20 percent of Women Need More Surgery After Lumpectomy," date of the post above the title is July 20, 2012 @ 2:26 p.m. The date after the post in boldface was "July 18, 2011. The Moderator post is a British study article that revealed how they came to the conclusion that so many lumpectomies just aren't enough in particular situations.
So, if the Mods posted this last year, BEESIE, how come I am in trouble for commenting on it as relates to our group here? Now, this particular thread is named, "Research News from Breastcancer.org," and it seems to me anyone who comes here to reaad is going to see that article's title, and that alone might spark the sort of turmoil you refer to. So, people who don't want to know the ins and outs probably should not or would not want to come here.
Now, this commonality is not the only one I've seen between big studies and our little group. And so in my second post, I asked if perhaps the Mods could put together some sort of poll, and I outlined a few ideas of how to handle it. And you know what, if some little info was collected from our website sparked interested in a research group, that could lead to better understanding of the mechanisms of cancer, how can that be harmful? I do sincerely apologize, nevertheless, for saying anything here that might cause patients a problem.
Lumpectomy was fought for very hard, I can remember it being in the news at least 10 or more years ago, and thusly radical mastecomy replaced by a lumpectomy is such a blessing And when I began to hear info about 20 percent of lumpectomies requiring more surgery, my heart sank. I say this, just so you realize I am being sincere about what I'm saying. Please let this go and understand I meant no harm. Thank you for your thoughtful post, too. GG
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dogeyed, I'm really sorry. I think you've misinterpreted my post. I didn't feel there was anything wrong with your post. You offered up your opinion. I think a discussion and debate and sharing our situations and diagnoses and opinions is all very valuable. We may reach different conclusions or see things differently but that what makes for an interesting discussion. I wasn't suggesting that you were wrong to comment on the study; I was simply saying, with regard to the specific statement I quoted, that I reach a different conclusion and I explained why. Just two different opinions.
As for BC.org doing polling among us, I was simply pointing out, as a researcher, that while the information that's uncovered might be interesting, it would not be reliable breast cancer research. It might be interesting to discuss among ourselves, but because it wouldn't meet the criteria for a reliable research study, it wouldn't go any further.
I'm happy to let this go.... although I'm not sure what I'm letting go because I didn't see any issue here - nothing more than a discussion and sharing points of view. But I do apologize for causing you concern and I won't post on this topic again. All the best to you.
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Thank you all for your suggestions and opinions. In fact, we are in the process of discussing how to run polls for our Community and also discussing the best way to use the information we obtain through those polls; also considering that the participating group may not be an accurate reflection of the entire breast cancer community (outside of BCO).
On another note, everyone should feel free to discuss the Research News stories we post here -- in fact, we invite this discussion! If it's easier, anyone who may want to discuss a certain story may want to begin a new thread with the title of the story they'd like to discuss -- that way, there's no confusion about which story the discussion pertains to.
Thanks again all for your insight, and happy posting!
--Your Mods
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April 8, 2013
People who follow the American Heart Association’s heart health guidelines have a 51% lower risk of developing cancer than people who don’t follow those guidelines. Read more…0 -
Taxol Plus Tykerb Better Than Taxol Alone to Treat HER2-Positive, Metastatic Disease
April 8, 2013
The combination of Taxol and Tykerb offers more benefits in treating newly diagnosed metastatic, HER2-positive breast cancer than Taxol alone. Read more…0
