Breast Exam

[dlaxague]

Good morning Joanne and all,

I'm going to try the copy/paste way of responding to your questions.

Please clarify "Yes, one can find cancer when doing BSE. But finding cancer in this way does not appear to improve survival." ? Why wouldn't it appear to improve my survival?

I don't know the answer to that question, but that is what the studies show. It is not my opinion, it is what the evidence shows (or in this case, doesn't show). It probably has to do with the fact that BSE is finding cancer, not pre-cancer. As we are learning (more each day) survival from cancer probably has much to do with the biology of a particular cancer (which is there from day one) - perhaps more to do with that than with the size of cancer, as was previously thought. This would help to explain why formal BSE does not improve survival.

BSE has a long history of promotion. Shower cards, TV specials, buddy programs, yada yada. For all the effort put into its promotion, you'd think that there'd be some evidence of its importance in saving lives. But there's not. No study has ever shown it to make a difference. Its use was adopted because intuitively it seems like a good thing to do.

In addition, it bothers me that this misinformation about vigilance causes both guilt and complacence. Some will assume, when a woman is diagnosed with a not-early breast cancer, that the woman is at fault for not practicing BSE, or not getting a mammogram. And some women accept this burden of guilt. The other side of that is that those who do regular BSE, get a yearly CBE and mammogram feel that they are safe - that in this way they are guaranteed early detection of their breast cancer.

This evidence is not saying that there's no benefit in feeling a lump and getting it treated. We know that treatment offers us an advantage. It is saying that women who found their lumps by doing a formal regimen of BSE did not fare any better than those whose cancer was found in other ways (mammography, chance notice in the shower, etc). I cannot say why this is so but that's what the evidence says, and that is why even ACS, notoriously slow to act on new information in the past, has stopped promoting BSE as a way to save lives.

Whenever this topic comes up, the comments pour in saying "but Sally found her lump with BSE". Finding a lump (by whatever means) does not necessarily equate with saving a life. I wish fervently that we had better ways of finding breast cancer, or pre-cancer. But right now we do not.

The resources that you posted that still promote BSE are simply sticking to the old party line, because it seems intuitively that it should be true, and because we all naturally want to be able to do something to save lives. It is amazingly difficult to get people to listen to the evidence and to give up promoting this intervention. Those who continue to promote BSE certainly have the best of intentions. But at this time, it appears that they are wasting resources (time and money) and also deceiving women.

You comment that: The USPSTF concludes that the evidence is insufficient to recommend for or against routine CBE alone to screen for breast cancer.
The USPSTF concludes that the evidence is insufficient to recommend for or against teaching or performing routine breast self-examination (BSE).


I'd be glad to change my opinion. I'd love it if we could find a way as simple as BSE, to save lives. But I value truth above all, and this is a truth. There is no evidence that practicing BSE improves a woman's chance of survival from breast cancer.

I love these discussions that make us think, and appraise evidence. Thanks for participating.

Debbie Laxague
PS: Yes, my husband found my large axillary node, by chance, during a romantic moment. Not during BSE. But no one could find the breast lump - not the GYN, not the surgeon, not the radiologist nor the mammogram nor the sonogram. Even when they knew that it had to be there. Even breast in hand, after mastectomy, the surgeon could not find the lump. It was found by the pathologist as he dissected the breast.

[Joanne S]

Thanks Debbie,


I agree, the copy/paste method of answering questions directly works good.


I disagree with your title: No benefit for BSE.


OK I revised my title:
BSE can help in BC detection!


I repeat, it is unconscionable to discount or not perform BSEs because it results in more biopsies (benigh), creates stress, the guidelines are inconsistent, or studies show there is "insufficent evidence" that's BSEs are a good screening tool.

Perhaps someone will volunteer to set-up a poll on our HER2 member site:
(1) BC/lump found by mammogram
or
(2) BC/lump found by BSE (or by signifant other)
or
(3) BC/lump found by CBE (doctor)
or
(4) BC/ lump detected by another method




I don't think the following Summary of Recommendations (you had posted the link) should have been published. I hate wasting my time reading about research or studies that really lack conclusions or recommendations---There are so many. You know the ones that say “inconclusive” or “insufficient evidence” or “further studies are needed”.


I do not see anything informative nor do I see any benefit from reading this article:


-The U.S. Preventive Services Task Force (USPSTF) recommends screening mammography, with or without clinical breast examination(CBE), every 1-2 years for women aged 40 and older.
Debbie, NOTE: This is CBE, not BSE.


-The USPSTF concludes that the evidence is insufficient to recommend for or against routine CBE alone to screen for breast cancer.


-The USPSTF concludes that the evidence is insufficient to recommend for or against teaching or performing routine breast self-examination (BSE).


I wonder how much research money was wasted on that study.




You indicated:


In addition, it bothers me that this misinformation about vigilance causes both guilt and complacence. Some will assume, when a woman is diagnosed with a not-early breast cancer, that the woman is at fault for not practicing BSE, or not getting a mammogram. And some women accept this burden of guilt. The other side of that is that those who do regular BSE, get a yearly CBE and mammogram feel that they are safe - that in this way they are guaranteed early detection of their breast cancer. *


I agree, not only early detection, but any detection. My mother died from breast cancer in 1996. She had suffered with the most severe back pain for two years before she was diagnosed. I constantly took her to the doctor, emergency room, etc and she had several hospital admissions. She had found a breast lump herself a few years back, but never told anyone because she thought it was a regular o' breast lump, and cancer only happened to other people, not to her. Finally she was diagnosed---terminal Stage 4, breast cancer that had metastasized---with too many tumors to count, in too many organs and in all her bones throughout her body. The pain in her back was intensified by all the bone fractures caused by the tumors. I truly believe that if she had told her doctor about the lump when she found it, it would have been biopsied, diagnosed and treated; and she would have had a much better quality of life her last few years. Perhaps she'd be alive today.....It probably would have increased her survival time! Sadly, she never had a mammogram either.


If I had not performed a very thorough self breast exam, I would have not found my breast lump. It never showed up on any of my annual mammograms (my enlarged lymph nodes in my armpit did). As previously mentioned my breast tumor was beyond the image area of the mammogram. After I had my mastectomies, I was extremely disheartened and disappointed to find out I had more breast tumors that neither showed up on my mammograms (dense breast), CT Scans, nor breast MRI that were performed after my biopsy. The medical professionals I asked all said the same thing---these types of x-rays/scans offer no guarantee* of (accurate) negative results or of detecting existing lumps/cancer---They are merely screening tools.


I understand what you are saying and what the studies you mentioned indicate and infer. I have read numerous research articles and studies related to BC since my diagnosis; and I can honestly say for just about every one of them, I found another one this is a direct contradiction. So I don't put any faith in the “No Benefit to BSE” theory/so-called findings. I don't know what the "evidence" is that you refer to. Sort of, kind of, like in a court of law, if you can't show it or prove it beyond a reasonable doubt, that's not evidence.

BSE has a long history of promotion. Shower cards, TV specials, buddy programs, yada yada. For all the effort put into its promotion, you'd think that there'd be some evidence of its importance in saving lives. But there's not. No study has ever shown it to make a difference. Its use was adopted because intuitively it seems like a good thing to do

Has there been a study to show it doesn't make a difference?

Although your lump was not found during a BSE, it was found by physical manipulation of some sort. (SOE=Significant Other Exam). And as a result of it being found, you had treatment. Do you truly believe this has not increased your survival? Who knows for sure? How can one/you/anyone make a comparison or a confirmation that it has/has not increased your survival?

The resources that you posted that still promote BSE are simply sticking to the old party line, because it seems intuitively that it should be true, and because we all naturally want to be able to do something to save lives. It is amazingly difficult to get people to listen to the evidence and to give up promoting this intervention. Those who continue to promote BSE certainly have the best of intentions. But at this time, it appears that they are wasting resources (time and money) and also deceiving women.



Personally, I would not, will not, take a chance of not doing a BSE! Although I have no breasts, I still perform BSEs---or I should say Chest Self Exams. Tee hee hee.


If you happen to find any more studies related to this topic, please post them. I am glad your husband found “that” lump and that you were able to have treatment, and I wish you continued wellness. You know, your husband would make a better doctor.


Jo






You know when BC research findings indicate you have a 80% chance of surviving x # of years, to me, it's still only a one-out-two chance/ratio or should I say 50/50 chance. If you perform a BSE and there is a lump, you have a 50/50 chance of finding it. If you don't perform a BSE and there is a lump there, you won't find it, but will the mammogram?

[dlaxague]

Joanne,

Great discussion. Thank you for such a thoughtful response. I think that I've found someone as long-winded as I am. We're exercising our brains, together, and maybe a few others if anyone else is still listening.

I can't wait to reply, but am off to a "drought-tolerant landscaping" class at the local JC. More later.

I'm going to work at improving the cut/paste thing. I tend to forget which font and size I'm using and since it doesn't show, I have trouble picking the right size or font to contrast. The memory!

Debbie

[AlaskaAngel]

Hi there!

While Debbie is away I will sneak in a comment or two, and maybe a question or two.

As Joanne said, "I hate wasting my time reading about research or studies that really lack conclusions or recommendations---There are so many. You know the ones that say “inconclusive” or “insufficient evidence” or “further studies are needed”. "

I would tend to agree, except that if a worthwhile question is being asked and legitimately researched, the answer is not known in advance and can end up being "inconclusive", etc.

This question is similar to our debate about markers. Is the glass half full or half empty? Those who see the glass as half full will favor doing BSE, and those who see the glass as half empty will favor not doing it.

Speaking intuitively, my question is this: Regardless of the survival issue, would the glass be emptier or fuller if those whose cancers were detected sooner by BSE (or, alternatively, those whose recurrences were detected sooner by marker results) had not been using those methods?

Acknowledging that some with bc "would prefer not to know sooner if there is cancer or recurrence of cancer", and/or prefer not to be constantly dealing with the fear from BSE's or markers (in which case they have the simple option of refusing them), there is the value itself of earlier knowledge, whether or not it changes survival.

I think most of us do want some control over what resources we have for the future, whether it be in terms of how to allocate them to cover treatment, or how to allocate them in behalf of family or friends or causes we believe in. It makes a lot of sense in that case to know sooner, so that one has more control over whether or not to spend the resources in other ways.

For example, if one is trying to decide whether to stick with a job, or to quit it to spend more time in other ways; or whether to take the risk of changing jobs; or even whether to forego further treatment. Those can be highly meaningful, precious decisions that are never counted by the bean counters who find out that the legitimate question that was being asked ended up with inconclusive results.

What makes sense to me doesn't make sense to everybody, but I personally favor the half-full glass (doing the BSE's and the markers), particularly if the procedure used for finding out sooner is relatively inexpensive and does not cause additional risk (such as spendy and toxic radiation procedures).

A.A.

[dlaxague]

Hi Joanne and all,

I'm going to start right in with replies to your words:

OK I revised my title:
BSE can help in BC detection!

Okay, I'll go along with that. But detecting is not the same as life-saving. Again, studies that had a group of women who were carefully taught correct BSE did not show that the women who found their bc this way (as opposed to some other way, any other way) lived any longer. IOW, there was no benefit to finding a lump by doing BSE. It boggles my mind that so much effort has been spent promoting something that cannot be shown to be of any benefit. It's not as if they haven't looked at it (which is pretty much the case with CBE - only one study that compared CBE/mammogram with mammogram alone, and found no benefit for CBE). There have been BSE studies and none has been able to show a benefit.

Perhaps someone will volunteer to set-up a poll on our HER2 member site:
(1) BC/lump found by mammogram
or
(2) BC/lump found by BSE (or by signifant other)
or
(3) BC/lump found by CBE (doctor)
or
(4) BC/ lump detected by another method


But wait. What would be the POINT of this? I would almost guarantee you that if you subdivided these questions into another three categories - 1. those with so far a primary diagnosis only; 2. those who have had a recurrence since primary diagnosis; and 3. those who have passed away from their disease
- you'd have a similar distribution of ways of finding the initial cancer. Except of course those who presented at stage IV.

I've had this discussion before, about BSE, CBE, and even mammography, whose benefit is surprisingly small. I'd like to see an ad in the NYT in October. Two main columns. Random names of women living after bc diagnosis, and women who have died of their disease. After each name, method by which their bc was detected. Again, the distribution of ways of detection would be the same.

My point is not so much that BSE and CBE are of no benefit, although it does seem that is the truth. My point, and my reason for opening the discussion, is that to me it is, at best, misleading (at worst, lying) to promote a health care intervention with such fervent hoopla when we cannot prove that it does anyone any good. At LEAST provide that information to women, in the hoopla. TELL them that studies have not shown benefit but that it may be useful to know their breasts and watch for changes. Do not say that "BSE is the best protection". Good GRIEF! We do not have any very good methods to detect breast cancer and we need to say that. Otherwise the message is that breast cancer is all under control and interest in funding research and assistance will dwindle.

And it IS a valid argument that this intervention (BSE) can cause harm. It increases fear (must check every month, constant vigilance). It causes guilt (your fault, you weren't vigilant enough). It causes unnecessary and anxiety-provoking interventions (extensive imaging, biopsies) that carry their own risks. And all this, for no benefit.

[COLOR="Blue"]Although your lump was not found during a BSE, it was found by physical manipulation of some sort. (SOE=Significant Other Exam). And as a result of it being found, you had treatment. Do you truly believe this has not increased your survival?/COLOR]

Yes, since I'm still here, it seems that for me, treatment definitely increased my survival. But the method of detection of my breast cancer had nothing to do with whether I survived or not. If my husband hadn't found it that day, and I had found it the next week, it would have made no difference. At 6 cm, someone would have found it soon, somehow. There is a difference between formal BSE (monthly, formula movements, etc) and incidental detection (random noticing). Noticing, by whatever means, is the beginning of treatment and that's good. But again (broken record), BSE as a formal prescription for noticing does not improve outcome. So why are we wasting all this time, money, and effort on promoting BSE. Wouldn't those resources be better spent on research of better ways of detection, or assisting those already diagnosed?

(I am sorry for what happened to your mother, Joanne - that sounds so hard, but people who note a lump by whatever means and do nothing about it are irrelevant to this discussion - that's a whole 'nother issue. Although I can't let it pass without giving appreciative credit to those brave advocates and reach to recovery volunteers who brought breast cancer out of the closet so long ago.)

Okay, this is getting way too long. As for my providing links to NBCC and the gov't website that noted insufficient evidence - I would agree with you that there's no point to doing that just out of the blue. But I posted that in response to a promotion of an action, and a promotion of a product (that is making money for someone). Showing that something that's recommended has no proof of benefit is a valid (and imho, important) piece of information.

I, too, examine my chest. I examined my breasts when I had them. But these are crude (and it appears, ineffective) ways of stopping death from breast cancer. We need better ways. And we need to be saying so, loudly.

Phew. Thanks again for the discussion. We can agree to disagree, without getting too heated. I admit that I do get heated, when I think that misinformation is being disseminated. I've gone back and re-written some of the above, in an attempt to sound more calm.


So, if you've followed this discussion this far, you must be interested in the science of cancer. Would you be interested in learning more? NBCC had a wonderful program for advocates, called Project LEAD. Check it out at their website: www.stopbreastcancer.org , and apply if you're interested. It's a rich time - you'll learn so much and meet new friends. The program is free, and there is scholarship funding available for those who can't afford the transportation and lodging.

Debbie Laxague