HER2 Support Group Forums - Breast self exams????? food for thought...

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- - Breast self exams????? food for thought... (https://her2support.org/vbulletin/showthread.php?t=34800)

ABSOLUTELY NOTHING to do with this thread...but I love looking at Terri's dog so much, I want to kidnap him. :)

Take care,

Aww thanks Krista!!

She is my baby. 11 months old.

I feel very fortunate to have had the knowledge to do my breats self-exams, otherwise it would've probably been too late when I had the compulsory mammo at age 40. I have friends who do have recommended mammo's before 40, but only with a history of breast cancer in a family member. I was low risk and no family history. The only thing that saved me, in my opinion, is that I "knew" my breasts and identified the difference. I don't see any entity ever paying for or recommending mammo's for younger women, just because there aren't enough of us (yet) to warrant the extra cost (or research). Early education may help, but what 20 year old woman ever thinks she will get breast cancer?? It wasn't in my thoughts back then.

coming late to this topic, as usual

This evidence (follow the link to the Cochrane report in the first post in this thread, and/or read Susan Love's comments) rehashes a big story. There has not been a research study that has validated the benefit of BSE (or for that matter, CBE). There have been several good studies that show no benefit to life (no improvement in survival) for teaching women to do BSE. This information is not an opinion, but the conclusion of the well-respected Cochrane experts.

Of course we all (bc survivors, researchers, and Cochrane too, I'm sure) wish that it were different - that we had a wonderfully reliable method of finding breast cancer and that this prevented many deaths. But alas, we do not (yet) have that. At least mammography has some evidence of small benefit to support its use. BSE has been well-studied and found not to provide benefit. CBE has not been studied - that answer is truly up in the air. But the results of the BSE studies remind us that just because something seems intuitively true does not mean that it will be so.

FINDING a lump does not (alas) equate with saving a life. In addition, looking for lumps in this particular way leads to invasive and potentially harmful interventions for benign findings. It's just not as simple as the intuitive thinking that says to us that size-of-lump equates with threat-to-life. As we gain understanding of breast cancer's behavior, we realize that it's so much more complex than that.

One way to illustrate that complexity would be to make a list - two columns of women's names. One of those who are alive after primary diagnosis, one of those who have died after same. Next to each name, the method by which her primary was detected. I would wager that those ways-of-detection would be the same for each group. Yes, lives are saved by detection and especially by treatment improvements. But the ritual of formally-taught BSE, with its rigid schedules and techniques (and attendant guilt when not done properly) provides no additional benefit over what currently exists for screening and detection (report changes, get mammograms as recommended). NO benefit. NONE. So why are we wasting so much time and money promoting BSE? I can think of SO many ways that the money and effort could be better spent.

In my opinion, the most important thing that we can do as survivors is not to advocate for women to do more BSE/CBE/mammography (current standards for "early" detection), but rather to advocate for more research. We need to use our leverage to remind people that we do not yet have the answer to breast cancer. The standards of early detection - BSE, CBE, mammography - are poor tools at best.

Yes, we must use mammography because it's what we have, but at the same time, and more importantly - we need to advocate for better methods. We need more research into such things as Jean's link talks of (dilon). I don't know if that's the answer, and neither does anyone else at this point. But we need to KEEP LOOKING for better methods, because we don't have good ones right now.

It's fine to encourage women to participate in available screening and certainly we should encourage them to pursue further investigations of unusual findings (found by any means). But I think that we need to be careful to also let people know that we use these methods because they are all that we have, but that they are crude and unreliable methods. Of course we wish that it were different. But it's not going be different (we are not going to significantly decrease death from breast cancer) until more is known about breast cancer prevention, detection, and treatment - and that is what we should be telling people.

To further complicate the issue regards the "early detection" is the fact that should we find those better methods of early detection, we do not (yet) know what we should do if these methods find cancer earlier. We don't want to start lopping off breasts or tissue of women whose cancer or pre-cancer would never threaten their life - but we do not yet know how to tell who is at significant risk and in need of intervention (although here, too - great progress is being made).

Don't get me wrong - I am grateful for, and in awe of, how much has been learned about breast cancer. But we have a long way to go. To imply that we have it under control, by making trite statements like "early detection is the best prevention (or protection)" is so simplistic as to be untrue. The truth is that we are far from being able to prevent death from breast cancer. As survivors, our words and opinion hold weight. Use your leverage - advocate for research!

Respectfully,
Debbie Laxague

PS: Just my opinion - I think that this forum would garner more respect, both from within and from without, if more of us were willing to put our name behind our comments. At least a real first name?

Debbie,

As always, your thoughts and comments are appreciated--they add to an already interesting discussion.

I think that those of us who found our cancer initially through a BSE are, of course, going to be pro-BSE. No matter what the research says, I am still going to ask my friends to "feel themselves up". I find it hard to believe that it would have been just as fine for me to be diagnosed with a larger tumor (say at my next GYN appt.). I do know what the stats are, but still...you know?

I don't go the "chart in the shower" route for my BSEs, but I do know what is there and will know if something comes up that shouldn't be there. We are years away from younger women getting imaging, and probably too much longer for those of us without a strong family history.

Oh--the unregistered posts may have been from members who are just unable to log in. I have had that happen several times in the last few months, and just ended up not posting instead of posting as "unregistered".

Take care,

Ditto to all.

I think breast self-exam is very, very important. My first cancer was felt by myself just 30 hours before the scheduled mammagram. Because I am always 'flat-chested' the mammagram technician had a hard time to get the picture. Then it was confirmed at ultrasound. And 'boom', I was ready for cancer surgery.

The 2nd time it was still found by myself. Because we trusted the mammagram results, the tiny, painful papable bump was just dismissed as scar tissue. And every time I had mammagram, it was terribly painful that I often had tears.

The surgeon was in denial because she thought she had got it all. The other oncologist trusted the surgeon - truly a good doctor, just did not know how vicious HER2 could be.

So, please do BSE. Please tell people to do BSE and get acquainted with our own anatomy and physiology. Trust but verify. Doctors are only human. They need our help, our information in order to do their job well.

Jean, I didn't see and may have missed any info on other locations where BSGI might be available, but here is something I found in addition to those you mentioned:

"Many leading medical centers around the country are now offering bsgi to their patients, including: Cornell University Medical Center, New York; George Washington University Medical Center, Washington, D.C.; Northwestern Memorial Hospital, Chicago; and The Rose, Houston. For more information on Dilon Technologies please visit http://www.dilon.com."

A.A.

P.S. Tricia, I had a dorky surgeon here in Alaska too, who delayed my diagnosis until she had a total of THREE sequential BIRAD 4's (with my history of nulliparity, age 50, sister/mother/grandmother/aunts with bc..., dense breasts....) I now see my PCP here, but have annual exams in SEATTLE....!!!

I also found this, so it may be available also in Portland, Oregon (or they may have sent certain patients elsewhere for it????):

http://www.medicalnewstoday.com/articles/110485.php

I read this with interest, I was never sent for mammo''s as here in Ireland it's only done from age fifty. I was forty six when I felt the lump in the shower. I was in a hotel in the Uk at a training weekend for my job and I think knew straight away it was cancer.
Despite this new report I intend to continue self exams regardless and think this report is doing more harm than good by telling people not to bother.

I just submitted a rather rambling response to this article. One of my queries is wondering how many women will be diagnosed at a later stage (say, in the next ten years) after this article?

I know that the stage of one's BC is not the sole or even independent factor for survival, but wouldn't it always be better to find BC earlier rather than later? Ugh. This article p*sses me off, and that doesn't happen easily these days.

Take care,

Great discussion. I think that we are agreeing more than not and that some of what seems to be disagreement is simply a language thing. No one is saying that it might not be helpful to pay attention to our bodies and to find a lump of cancer by whatever means. What this Cochrane report is saying is that it is not MORE helpful to teach a specific technique to be done at a specific interval. And it's saying that to do so results in more interventions (and the anxiety and additional physical risk that goes with that) yet offers no additional benefit to life.

There's really no other way to find a cancer than by imaging or palpation, is there? Except the rare case of skin eruptions. Finding does result in treatment and treatment does make a difference. It cures some and prolongs the life of almost all. It's no secret that we do not (yet) know how find everyone's cancer early enough to save everyone's life.

The Cochrane report clarifies that to invest money and effort in insisting that women do this very specific intervention (BSE) is a waste of that time and money. Money that could be much better spent either for research to increase our understanding and eventual control of breast cancer, or for money to assist those unable to afford good care (alas, a need that many experience in our country at this time).

In addition, to continue to imply to women that formal BSE offers some safety or benefit is to lie to those women and that bothers me. Women deserve accurate information about what we know, and also about what we don't know.

Email is so weird. It's hard to interpret tone in emails. I read my own words after posting, and think that they sound so much harsher than I intended. I don't mean to sound harsh or critical of anyone's experience or opinion. I just want us to respect truth when we see it, and Cochrane reports are well respected for offering unbiased and unemotional assessments of lots of small studies - sorting out the chaff (poorly-done studies) and including only the quality.

Debbie Laxague

I don't think you were being harsh. I knew that you were just relaying information from the article (and other sources) to us, and offering your valued opinion.

I suppose I might feel differently if I hadn't found my lump through BSE. I did not and do not follow the taught methodolgy. The implication of the article (to casual readers) could be taken to mean that BSEs are completely useless. That is what worries me--that women will think "Oh, I can just wait until I see my GYN again". Most of those women will not be reading this thread, nor discussing it with others who have been diagnosed with BC (through BSE or not). They may just consider it one less thing to worry about.

I think I would have felt better about the article if they had gone more into what women (who aren't eligible for early detection screening) can do for themselves.

Take care,