Dr. Susan Love

[Catherine]

I am still mad about Dr. Susan Love supporting these new Mammo guidelines. One of our well informed sisters needs to contact Oprah and tell her to bring her on the show and debunk her and the study. Dr. Love is doing a disservice to her "army." I think she is just a greedy person looking for more noteriety. I usually do not get so mad....but this all irritates me.

Growling,
Catherine

[whatz]

I missed the news on this one but caught up to it on this board. I'm quite surprised as well. I keep telling everybody though based on my own story not to only rely on a mamogram but to use it as a baseline that everything was OK at that point and religiously perform self exams!

[Sandra in GA]

How do we get the "sticky" promoting her and her army removed from this site?

[whatz]

Not sure which "sticky" you mean but you could ask Joe (moderator).

[Sandra in GA]

If you click on "her2group" you will see the sticky. It is the third one down and titled "Dr. Susan Love's Army of Women." It encourages everyone to join her army!

[Nancy L]

The best way to "debunk" the new recommendation is with DATA, the same method they say they used to arrive at these conclusions. Does this website have the capability to send an e-mail to every person who has ever registered? It would be helpful to get a reply from every women who was under the age of 50 when they were first diagnosed with breast cancer with an answer to these questions----Was your breast cancer found via mammogram? If not, how was it detected? This data could then be compiled and published.

I had faithful mammograms from the age of 40 and at age 58 was diagnosed with stage IIIC breast cancer. It was never detected on mammogram. My late sister, diagnosed with State III breast cancer at age 47 had a similiar story to mine. We both had our mammograms done at some of the best facilities in the US--i.e., UCLA and Stanford University. So I have always been skeptical of the technology. It has been a big big money maker for the physicians and hospitals. If the new guidelines are appropriate, why did it take them over 30 years to come to this conclusion---the timing is a little suspicious.

I would also say that this recommendation is just the first of what will be coming under Obamacare. Health care rationing is on it's way.

[StephN]

The PLOT thickens! If you weren't very mad about this before, prepare to be VERY offended!

Susan Love's foundation has a steering committee. On that committee is Fran Vesco, founder of Breast Cancer Action. These liberals are sticking together in more ways than one. Do I hear back scratching?

Breast Cancer Action supports and is in the thick of the new guidelines. Here is part of what they say on their web site - note the word TRUTH here:

The truth about breast cancer and screening:

There is no statistically significant evidence that screening women age 40-49 years reduces breast cancer mortality. The USPSTF now recommends against universal screening mammography for women aged 40 to 49 years.1 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#1) The Task Force changed their recommendation based on a systematic review2 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#2) of randomized clinical trials and on six statistical models of the risks and benefits of mammography screening.3 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#3) A major consideration for the change was the addition of recent results from the only clinical trial designed to specifically evaluate mammography in this age group. The Age trial4 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##4) found no statistically significant difference in breast cancer mortality between those women who were screened during their 40s and those who were not.


False-positive results and additional imaging as a result of mammography are most prevalent in women aged 40 to 49 years. When screening is started at age 40 years, about 60% more false-positive results have been estimated to occur than if screening is started at age 50 years.3 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#3)


The evidence for a benefit of mammography after 50 is not strong. To reduce the harm while still maintaining the small benefit, the USPSTF now recommends biennial (every other year) instead of annual screening mammography for women aged 50 to 74 years.1 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#1) The USPSTF concludes that the benefit of screening mammography is maintained by biennial screening, and changing from annual to biennial screening is likely to reduce the harms of mammography screening by approximately 50%, based on the statistical modeling,3 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#3) a systematic review of randomized clinical trials,5 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##5) a population-wide screening program report,6 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##6) and on a community-based study.7 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##7)


Mammography can miss cancers that need treatment, and in some cases find disease that does not need treatment, leading to overtreatment with toxic therapies. Harms for healthy women who do not have cancer can include unnecessary imaging tests and biopsies, unnecessary exposure to x-ray radiation, and psychological trauma and anxiety.



All breast cancers are not equal. Some patients will have fast-growing, aggressive tumors while others will have slower-growing, less aggressive tumors that are less likely to metastasize and, therefore, have a better prognosis. Screening is more likely to identify the slower-growing, less aggressive tumors because of longer asymptomatic periods. This “length-time” bias can make screening appear more beneficial than it is. “Lead-time” bias can also contribute to a misrepresentation of the benefit of mammography. If a lethal cancer is found earlier through screening, the patient would appear to live longer because of “lead time.” Screening is not helping patients in these situations live longer, it is only helping them find out about their cancers sooner.


Breast self-examination (BSE) is ineffective and potentially harmful. Two large, randomized, clinical trials of BSE, both found that women who did BSE were no less likely to die of breast cancer than those who did not do BSE. In both studies, the number of invasive cancers diagnosed in the two groups was about the same, but women in the BSE group had more breast biopsies and more benign lesions diagnosed than did women in the control group. 8 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##8), 9 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179##9) The USPSTF recommends against teaching breast self-examination.2 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#2)


The USPSTF concludes that there is insufficient evidence to evaluate the benefit of clinical breast examinations.2 (http://www.stopbreastcancer.org/index.php?option=com_content&task=view&id=978&Itemid=179#2)


We encourage women to make informed decisions regarding screening based on the actual evidence. To learn more about the myths and truths (http://takeaction.stopbreastcancer.org/site/PageNavigator/31MythsAndTruths) concerning breast cancer and screening, and to find out how to take action against this disease, visit www.stopbreastcancer.org (http://www.stopbreastcancer.org/).

[Rich66]

The unspoken assumption is that treatments will not get better so why bother finding out about it. Not exactly forward-looking at a time when major advances are looming. I suppose there was a time when AIDS testing might have been viewed the same way. How long has Magic Johnson been around since DX? The best part is that the "task force" was thinking very differently a mere 6 months ago. I think their task has been redefined.

[ElaineM]

At what age do men start getting screened for prostate and other male related cancers?
If the guidelines suggest they start getting screened earlier than 50 we could add gender to our other concerns.

[StephN]

We all know what the word "SPIN" means nowadays. Yes, Rich, redefined to find the "substantial cost savings" the president and others have been talking about to fund the proposed new health care system. Breast health is first on the chopping block.

I heard something about changes to prostate screening as well on one of the channels.
This is by far a much slower growing cancer and I don't think the screening starts before 50. They will run a PSA if the man has some other problems that could signal prostate trouble. And there are other tests to provide a better assessment taken together with PSAs.

[Rich66]

I believe PSA screening at 40 if risk factors, in the family etc. Asked for mine at that time. It is contentious in PCa too. But it's more complicated in that palpation and scans are pretty marginal tools at early stage PCa. PSA can bounce around due to a variety of benign factors. And yes..typically slower growing than BC. Typically being the operative word. My Dad was told he was "cured"..until he nearly bled to death and they found it in his bladder. (a fun discussion.)
The PSA does remind me that in delving into BC treatments, I occassionally come across mention of markers that are only present in cancer patients...I mean beyond the typical tumor markers...or serum Her2. Seems like a blood sample panel oriented towards cancer detection might be a good adjunct to imaging and exam. Oh..but it might make people anxious.

[Monica]

I must say I have been taken aback by the strength of anger towards these scientists who I assume are trying to do the right thing. All sorts of motives are being ascribed. Hasn't Dr. Love done a lot to help women with breast cancer?

I would be interested to understanding the data. Is the data recent? That is, does the data include the results from herceptin, and the fact we are significantly saving women's lives? What happens if you break out women with HER2? My hypothesis is that their findings may be true for non-HER2 breast cancer women, but not us. Unfortunately, you can't differentiate which women might get HER2 and have them get mammograms.

I just want to understand their thinking and data. How would they reconcile the fact that without early detection we believe we could be dead, but yet the data seems to say something else? I am sure they knew this recommendation would not be well received. I hate to kill the messengers.

Monica

[BonnieR]

I hear what you are saying Monica. Dr Love has devoted her life and career to breast cancer. I want to think she is offering her honest scientific opinion.
I am reminded of the stance taken in the medical community that routine scans for metastic recurrance are not done unless there are symptoms. It seems counterintuitive, but is based on science and research. Which, of course, is cold comfort when you are the patient!

[Rich66]

Data is inherently from the past. What game changers are possibly in trial now or tomorrow is not factored in. It's like saying something that's never been done before, never will be. Maybe true regarding laws of physics..not necessarily so in medicine. Those who have been toiling (too long?) in the vineyard may understandably disagree. Doesn't make them right. Her2 folks have witnessed game changing firsthand. Before Herceptin, Her2 testing wasn't always done because there was no data to support it. How many were caught somewhere between between old data and new treatment possibilities?

[Montana]

I am an "Army" deserter............

[Laurel]

I think we are missing the bigger picture here, or at least no one has been willing to address the 800 pound gorilla in the room. Look, this revision to mamo screenings was floated last year after the new administration took power. It was trial-ballooned in the media with little reaction. I did not miss the effort and do not miss the reason behind it. Yes, it is to save money. Rich referenced all the new treatments in the pipeline for cancer. It is true. New and amazing drugs and therapies are on the horizon, BUT they will cost millions. Think about how much your own treatment has cost. My treatment tally is over a quarter of a million dollars and I am only Stage I. What does treating breast cancer cost? If indeed it will become, or has become a "chronic" illness, albeit an EXPENSIVE chronic illness, what will the cost of care be???? Too much for universal health coverage. If you are going to insure every person, the simple math confirms that resources will have to be rationed.

My dear fellow survivors, you are a liability, a drain on the "system." If my cancer had been found 2 years later, on my first screening at age 50 as proposed, and not earlier at my annual mammogram at the age of 48 which was when I was diagnosed, I would have been Stage IV. Now what if Stage IV cancer is deemed to be too expensive to treat as it is not "curable" and therefore not worth the cost? Oh, I know we are still treating metastatic cancer at present, but for how long? Under this scenario, I would be Stage IV and therefore untreatable. Getting nervous yet? I am.

Remember Lani's recent post where she said we would not like this and posted a review of brain mets treatment not having supportive data to validate treatment. That is where we are headed. They will begin to deny treatment for mets patients as they are "terminal." What a cruel irony to think that we are so close to breaking the cancer code, and they want to produce more stage IV victims so they can deny them care because they are stage IV.

Oh, I hear you scoffing that they will never deny aggressive treatment to metastatic cancer patients. Really? Are you sure?

[Bill]

Well, I hate to say it, but alot of us have seen this coming.

[Catherine]

My personal opinion is not based on scientific research. However, I think there is alot of cancer out there. I know way too many close friends and aquaintances who are no longer on this planet. I actually have felt lucky to have breast cancer rather than something like pancreatic cancer. I also feel lucky to have arrived here as stage II. But I hope and pray for those who follow us. And I am sorry, but I do not trust Dr. Love anymore or the people she works in conjunction with and/or for. Perhaps Dr. Love is headed for the title of Surgeon General. Reading StephN's quote from Dr. Love makes me think that our doctors are going to be very confused. We need our doctors to be able to think clearly and help us with the best treatment that is available.This is the quote that I find unbelievable: "Breast self-examination (BSE) is ineffective and potentially harmful."

[Margerie]

I never would have made it to 50..... and if SBE are "of no value" and MD breast exams are not recommended, just who is going to discover the lump?? They keep saying "this is just for screening and not for a woman who has found a lump" They are tripping over their words trying not to sound like the cold, hard idiots they are. Younger women generally have more aggressive cancers and lower mortality rates with current standards. Maybe the new motto for Pink Ribbon month next year will be Later Detection Saves Money!!!

[Joe]

Christine was dx'ed at age 42, she had discoverd a lump in her breast while doing a self exam. Three months earlier she had a clear mammogram. The retest discovered a 1 cm tumor.

Add the National Breast Cancer Coalition to the Obama marching group.

Regards
Joe

[CourtneyL]

As a young woman who was diagnosed at age 30 with widespread metastatic disease, I am confused and saddened by these new guidelines. The fact is that there are no effective screening mechanisms for young women. They don't recommend mammograms for my age group. So what are we left to do? Self exam. That's all we can do. Find a lump - pray to God you have good doctors. I didn't. Mine dismissed it as nothing. I pushed for a mammogram and that too failed me. Young women are frequently misdiagnosed because we tend to have dense breast tissue anyway. I got the "all clear" after a mammogram and ultrasound. And I know that it was a mistake. A huge one. One that led me to be untreated for 7 months while the cancer had the opportunity to grow and spread to my bones, liver, lungs and brain.

So where do these new guidelines leave young women? We're being told not to bother with self exams? Please. How exactly are we suppose to be diagnosed?

Another thing that frustrates me about all of this is that it is really distracting from the bigger picture - a need to find a cure. And fast. I am losing friends every week to this horrible disease. Beautiful women - mothers, daughters, sisters. It needs to stop.

So frustrated,

Courtney