Good Advice?

[Cannon]

I forgot, I wanted to say - they say the same thing about PSA screening for prostate (that they shouldn't bother, it doesn't help). Somehow the numbers must work out that way -- but if it's your life that gets saved, it clearly is worth it.

And with self-exam, there's not even any expense for them to worry about!

[Barbara2]

Yes, I found my 4.5cm lump while showering; 3+ months after a clear mammogram.

[CourtneyL]

What? I can't believe this. Outrageous! And dangerous. How do they expect them to be found? Especially in younger women who don't go in for routine mammograms.

I found my lump myself as well. I was lying awake in a hotel bed the night before my best friends wedding. Don't know what prompted me to do a self exam but I did. Imagine how difficult it was for me to put on a happy face at the wedding the next day as her maid of honor. I was scared out of my mind. I had just turned 30.

[StephN]

This is SO irresponsible for a national organization to parrot such nonsense.

I also found my lump in the shower - just 3 months after an "unremarkable" mammogram. I had been warned that since I had dense breasts, there was perhaps a 10% chance sonthing was missed. Therefore, my letter suggested that self checks were advised.

Joe, this was a good question to ask. I think there was a similar thread some time back.

[Jackie07]

I found my 'lump' 30 hours before a routine (my first one? can't remember) mammagram. After I pointed it to the technician, I was taken to another room for the ultrasound. For the recurrence, the mammagram never detected it - because the doctors just thought it was 'scar tissue'. Eventually I was feeling very sick and felt it right before I went to a weekend clinic (supposedly just so I could get a doctor's note because I had missed three days at work.) I contacted my surgeon and scheduled a mammagram. After the procedure, the technician made a comment: "It's just scar tissue." We were relieved on our way home.

But the surgeon finally paid attention to it. Turned out they had misread the films and missed my recurrence 4 years straight. Unless 'we' are vigilent, 'human errors' and 'machine malfunctioning' will continue to make this disease a No. 1 killer.

[Morgan]

I also found lump myself aged 45, 10 months after clear mammogram it was 2.75cm, grade 2 with one node involved, also seemed to come from nowhere. I was having mammograms every year due to family history, but now know I'm not BRCA 1 or 2 +. In the UK you don't go for screening until 50........

[michka]

Joe there seems to be many cases of women like me who had had a mammogram but finally found a tumor shortly afterwards by themselves. Is it a HER2 characteristic?
Michka

[Kim in CA]

Hi Joe,

I found my lump (in the shower) 9 mos. after my last mamogram. I shudder to think how big it would have been had it not been discovered until my next mamogram. It was growing very fast and probably would've metastisized even further, possibly changing the favorable outcome that I've had. I'm even still embarrassed that I didn't find it sooner myself, as it was over 4 cm!

Kim

[Joe]

Michka,

Her2 breast cancer is very agressive and the tumors grow more rapidly than other types of bc.

Regards
Joe

[michka]

Joe, I know HER2 is aggressive although I never read any precise report about it's proliferation. If there exists aggressive types of tumors that are life threatening, then the prevention strategy should be changed. Dr Burstein in Dana Farber, in answer to my question "how come the mammo did not detect it a year ago", answered: " we have to ask GE to make better machines". And nothing about HER2 growing faster than others. Anyhow, it just reinforces how important it is to educate women and the importance of self examination.

[Ursula]

We don't have mass screenings for women under 50 in Finland. I found the lump by myself at the age of 42.

[Nancy L]

I found mine and so did my sister. We were both stage III and had mammograms less than one yr prior to finding the lump. So you can understand why I feel annual mammograms are not a security blanket.

[tricia keegan]

In Ireland women are only screened from age 50 also so I had no mammo before I found the lump.
It really did seem to appear within days if not weeks, it makes me wonder just how fast a her2+ tumour grows??
Most Dr's still say bc has been growing for years!

[kimber]

I found mine. A mamo confirmed and found a second tumor!

kim

[sally]

Yes, I also found my own lump about 7-8 months after a routine check from Doc. It had spread to 8 lymphnodes and my liver at that point. Sally

[whatz]

Found mine investigating a dull ache in breast. Mamogram six month earlier was clear.

[hutchibk]

I forwarded Joe's/our concern over this to the Feel Your Boobies Foundation on Facebook...

Here is their initial response today to my post: "...well, this used to trouble us too -- but what they are actually say is that "feeling your boobies" is just as effective as the step by step process suggested in the Breast Self Exam...meaning that most women who find their lumps are just doing daily routine things....NOT breast self-exams.

Having said that, i feel that this research has been promoted in a way that makes it seem like it's not important at all to feel your boobies -- when actually what it should be promoting is basic breast awareness and being proactive about knowing your body."

************************************************** ***************


This is not the first they had heard of it and here is an essay written in Jan 2009 by Leigh Hurst, Feel Your Boobies Founder/President:

Recently there has been a lot of press questioning the effectiveness of the breast self-exam (or BSE). The stir began when the analysis of a rather large study was released and stated that the research showed there was no benefit to performing a BSE, and, in fact, that in some cases there was increased harm due to unnecessary biopsies on non-cancerous lumps.

Wow – are you kidding me? When I read this, I initially saw red and thought – how can this be?? A BSE is what saved my life. How can anyone say that we shouldn’t be doing them and why would we discourage proactive habits by so publicly proclaiming them ineffective? And then I took a deep breath, regained my composure, and poked around to understand this a bit more.

As it turns out, the study wasn’t actually saying that BSE’s were ineffective – it was saying that BSE’s, the formal procedure known as a “breast self-exam”, is no more effective than basic breast awareness. It reflected that those women who were simply “feeling their boobies” were just as likely to find a lump as women who were doing formal BSE’s. It also mentioned the idea that many women who find their own lump say that they found it through BSE’s when actually many of them were really just “feeling their boobies.”

And so, my heart rate decreased, my face regained its natural coloring and my mind became peaceful again. After all, my personal experience actually parallels that of the findings publicized from this study. I was not doing a BSE when I found my lump, though, for lack of a better term, I might have labeled it as such initially. In reality, I was simply showering and getting dressed, and, through the course of my daily routine, noticed a change because I knew what was normal for me. I was “feeling my boobies”, which is the whole reason Feel Your Boobies ® (FYB) began. My goal was to repackage the idea of BSE’s using language that makes it feel less like a formal process and more like something you already do.

For those who read this recent press, please don’t confuse the research findings for promoting passivity because that’s far from what was said. The point was whether you breast self-exam (BSE) or “feel your boobies” (FYB), you’re just as likely to find a lump. So, while some of you gals may continue to BSE and others, like me, may prefer FYB, the important thing is that you do it. Are you doing it?

[Sandra in GA]

I wish I had continued the regular self breast exams I did when I was younger. I also wish I had known that 80-85% of women diagnosed with breast cancer have NO family history! I had become complacent even though I did have my yearly momograms. I found my 3 cm lump 10 and 1/2 months after my last mamo. There was a burning sensation that night in my left breast and when I ran my hand over my breast I very easily found the lump.

If only I had been more aware, this devil could have been found MUCH earlier!

[Debbie L.]

Joe and all,

This is not "advice". This is evidence. Saying that BSE is not a useful tool is not saying that there's no value in finding our breast cancer. The value in finding our breast cancer is that treatment works (saves lives) for some of us. Many of us found our breast cancer by some kind of palpation. That is not the same as saying that formal BSE makes a difference to survival from a breast cancer diagnosis. It does NOT make a difference - at least two excellent studies say that. FINDING a breast cancer is not the same as SURVIVING a breast cancer, alas.

As many in this thread will attest to - finding their breast cancer did not r/t to saving their life. If someone has stage IV breast cancer, the hard news is that they are likely to die of that disease. The good news is, of course, that they are likely to live many good years WITH that diagnosis. But the hard truth, that is often not recognized in the October hype, is that there is no cure for stage IV breast cancer.

It gives me no pleasure to say that. I am not trying to stir up controversy. I am trying to stir up interest in promoting more research so that more lives can be saved. If we buy into the complacency and easy message of "early detection" (which is becoming more and more a misnomer, as we learn that it's much more about the biology of the cancer than about the SIZE or even perhaps the SPREAD (as far as axillary nodes)) of the cancer, we are settling for status quo. Status quo is that many of our members are DYING, of breast cancer. They are dying because we do not (yet) know enough to prevent these deaths. We would of course first choose to prevent these diagnoses - to somehow learn how to prevent the development of breast cancer altogether. That's probably the most unrealistic goal - cancer is part of life, and would occur occasionally in even the most sterile and environmentally pristine world. But we can certainly reduce the incidence by cleaning up our world, and learning more about best-practice lifestyles.

Then there's diagnosis and treatment. We are making small steps toward personalized and less-toxic treatment but we are so far from really achieving that goal. Martine Piccart-Gebhart's opening address at ASCO/Breast last Thursday so clearly assessed where we are with "individualized" or "personalized" treatment. NOT THERE YET. She advised "modesty" before we make that claim. She used HER2 as her example - we claim it's a marker for Herceptin yet only 1/2 of those who receive Herceptin benefit from it.

No one is saying that it's not of some benefit to find a breast cancer tumor and begin treatment. But if you were a lay person listening to the October hype, you'd assume that between BSE (which has NEVER been shown to improve survival, despite good studies) and mammography (still an area of great controversy as to its value) breast cancer is under control. We on this list KNOW that it's not under control. If it were, we would not be hearing stories like Marie and Ed's, or any of our stage IV sisters who struggle to live with metastatic cancer. We would not be hearing from "early" diagnosed people who struggle daily with the great unknown - the threat of recurrence.

I am immensely grateful that so many are living so long and so well, with a stage IV diagnosis. But I am so sad that we do lose some of these valiant people. Aren't you sad? Aren't you a little angry? Don't you want it to be better, for all of us?

If you want it to be better, then you have to stop looking at it through your own personal lens. It's NOT about "I found my breast cancer yada yada yada". It's about breast cancer still kills people. Until we can say that it doesn't, we need to push for better research and less hype. Can't you see that the pinkwashing of October is an attempt to jolly-up the "state of breast cancer"? Can't you see that the hype of October leads the public to believe that it's all under control and that we survivors are a wonderful, strong, vibrant group of people who are happy and thriving? Well, yes -- for the most part we ARE that. But we are also a group of survivors who face the uncertainty of our future, who suffer the losses of our peers, and who know that for us and for others -- BSE did not save our lives.

FINDING a breast cancer does not (alas, yet) equate with SAVING a life. The pinkwashing of October would have you believe that it does. NBCC is working to evaluate the evidence, and pushing to find better answers. I support them in that effort. If it were not for NBCC, we might not have Herceptin. I cannot believe that they are not better supported on this Herceptin-worshiping list.

I want fewer people to die of breast cancer and if I have to be a wet blanket here, to do that - well I will keep harping.

Warm and curmudgeonly regards,
Debbie Laxague

[StephN]

Dear Debbie -
You are so right on many counts. Thanks for the update from the ASCO/Breast meeting.

I think what many of us (including Joe) are reacting to is the following statement cited by Joe:

"In reality, there is no scientific evidence to prove this is true. In fact, the studies that have been done show an increase in potential harm from monthly, regimented BSE including elevated anxiety, more frequent physician visits and unnecessary biopsies of benign lumps."

Then there is the exhortation at the end of the bit to "get out of the shower" and try to make a difference in other ways.

The fact that they are ending their program of printing materials to foster self exams IS self indulgent and reactionary. Perhaps it does lead to a lot of unnecessary testing, BUT if you are a person who has breast cancer - in my mind there is no test that is unnecessary whether it confirms or rules out a cancer.

I did not do a self exam on the dot each month - maybe every 3 months, but I was familiar with my own breasts from having done that.

If we are not proactive and wait 5 years or more for a mammogram (in the case of women under the age of 45 or 50), what alternative to they have?

Marching around with signs like uppitty women will not find those cancers.