Good Advice?

[Joe]

I found this on the National Breast Cancer Coalition's website and beg to differ. In 1990, my wife Christine discovered a lump in her breast while doing a self exam in the shower 2 months after having a clear mammogram.
Nine years later in 1999, she discovered an enlarged node in her neck again while taking a shower. She had to fight with her primary physician to obtain a referral for a breast surgeon. The node was biopsied and found to be malignant. She was restaged and found to have metasthesis to her chest wall and several metastatic brain tumors. She was treated and is still in remission today.

I am just curious, how many women on this board discovered their tumors through a breast self exam?

Regards
Joe


Myth #1: Monthly breast self exams save lives

FALSE. The evidence actually shows that breast self-exam (BSE) does not save lives or detect breast cancer at an earlier stage.

For decades, women age 20 and older have studied shower cards, read pamphlets, watched videos and prodded silicon breast models to find a hidden lump - each resource teaching BSE as a life-saving personal responsibility. Seems to make sense. 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.

Many organizations share NBCC’s viewpoint on BSE. The National Cancer Institute (NCI) no longer prints a BSE guide; the U.S. Preventive Services Task Force states that "the evidence is insufficient to recommend for or against teaching or performing routine breast self-examination"; and the American Cancer Society is phasing out materials that focus only on breast self-exam.
For more detailed information and specific clinical trial evidence analysis, read NBCC’s position paper on BSE (http://www.stopbreastcancer.org//index.php?option=com_content&task=view&id=505&Itemid=180). Learn how to make a difference in the world of breast cancer at StopBreastCancer.org.
Get OUT of the Shower, Get Angry, Get Educated, Take Action: download NBCC’s breast self exam shower card (http://takeaction.stopbreastcancer.org/showercard) and learn more.

[Joan M]

Joe,

I did. I had two tumors -- one DCIS and one infiltrating. The DCIS was a lump (which is unusual, apparently), but unfortunately I ignored it for about two months since I would always have a lot of cysts. But after awhile I thought it was strange that the lump was still there.

When I first started having cysts I would run right away for a mammogram, but after several years I started to drop my guard. To add insult to injury, I was behind that year in my annual mammo by about four months, which was a first.

Joan

[rl2]

I think a lot of premenopausal women find them that way, especially younger, because while a lot of docs send women 40 plus for screenings, there are still questions about whether mass screenings for women under 50 are of great benefit.

Never mind the millions of women who are uninsured.

[Mgarr]

Discovered my own lump in the shower and yes, I did have the exam card hanging on my shower.

Mary

[hutchibk]

That is pretty disturbing. Speaking for myself, my lump was found by me... in the shower.

I have two stage I friends who both found theirs during self exam.

I think their position paper and new wave of poo-pooing self exam is dangerous beyond comprehension.

[rl2]

oh and yes that is how I found mine too (in the shower). Know a woman who was found to have 4 tumors in one breast at 28 and her docs tried to convince her at first it was just cysts that she had found.

[Barbara H.]

I found mine myself.
Barbara H.

[ammebarb]

I was 35 at the time I found my breast lump myself. My doctor convinced me to wait for three months, before doing a mammogram. (Mine was not HER2 tested....this was twenty six years ago).

Barb A.

[yankeebikachic]

I did. At 34 years old.

[Becky]

I felt my lump too - in the shower. Thank goodness too - it was almost 2cm as it was and a positive node

[Faith in Him]

I was 37 when I noticed a lump. Also, I felt a heaviness in my breast when I was lying down at night. Mamo was clear but on a fluke my dr order an ultrasound which discovered a mass. By then my mass was 2.5 cm with 18 positive nodes. I would have not made it to 40 (for screening) if I hadn't discovered it myself.

[Ruth]

Found my lump and swollen lymph nodes myself after going to lacation specialist and general dr for problems with nursing who told me warm compresses, cabbage leaves and other creams would help me with my problems. Knew something was wrong and made appointment with my Gyno who felt my spots and immediately left the office with me to walk me downstairs himself to a general surgeon who did a needle biopsy without even a mammo or ultrasound. AND Gyno waited in the waiting room until I came out and wanted to see if the GS got any fluid out. He is amazing needless to say and, well, I think he knew I was in shock and by myself. Had to force hospital to do a mammogram since I was nursing the following day - totally against policy. Wasn't really needed and had punch biopsy done on nodes and lump in breast same day too. I was 36 then.
Hugs ~ Ruth

[Sherryg683]

Must be something about showers or bath tubs here. I found mine in the bath tub. I had just had a breast exam done my my GP a week before and he did not report feeling anything. He did the little circular motions that they show you to do. I felt my lump by running my hand straight down and around my breast. I have always had lumpy breasts and never thought I would be able to feel anything but this little lump jumped out at me, that and it hurt (they say cancer doesn't hurt either). Later my breast surgeon said that they are now saying that you should indeed exam yourself in this manner but was surprised I could detect a lump that small by myself. What that study says is pure BS if you ask me and it is steering many women in the wrong direction..sherryg683

[Paty]

I found my lump after taking a shower and four months after I had had a deep check up in my clinic with my family phisician, the lump had grown very fast...

[sassy]

I found mine...in the shower. It was so small, neither my gyno nor my surgeon could feel it, but I could put my finger spot on it for the mammogram.

Good thing I found it, it was stage 3 with five positive nodes.

[Mary Anne in TX]

Me too. Found my lump in shower! ma

[Diane H]

I found mine myself sitting at the computer and running my hand over an itch, still remember the sick shock of it... I knew instantly it was not right. It is a painful memory.
So I beg to differ too. I know too many women where a mammo did not find their lumps.

[Chelee]

I found mine myself also. I was late for my yearly mammo by three months. I still swear to this day mine showed up almost over night. I always did BSE and felt nothing till one day I was standing in my bedroom & crossed my arms up around my chest and felt this lump. Seems most woman I've spoken with found their own lumps by BSE.

Chelee

[SoCalGal]

I was 38 and found mine, too. Also in the shower - that's the most convenient way to do a monthly self-exam.

On another note of irritation - I had a solicitation from my Allstate insurance agent trying to sell me "CANCER INSURANCE" - all neatly packaged in a PINK envelope. I would be more specific except I fed it right into the shredder.

[bejuce]

Joe, you must have been reading my mind before posting this! I received an email today from the NBCC and then visited their web site where I found the myths they're posting daily for the month of October. They will post 31 myths - one for each day.

I read the 9 myths they have posted so far and was confused and frustrated with some of their postings, especially the one you mention here. I, too, found my lump (under the armpit) in the shower and after much insistence with my doctors was finally able to get an MRI/mammo 6 months later. Had I not been so diligent and persistent, I don't know where I would be today. I strongly believe that self exams do save lives, more so than the doctors suspect. I think we know our bodies better than anyone, and can tell much earlier whether something doesn't feel right. Isn't this how many symptoms are found anyways - with the patient herself reporting feelings and sensations to their doctors?

It's a total disservice to women to shy them away from their self-exams..

[Karen W]

Yes, I did find mine while in the shower doing a SBE.

Karen

[Brenda_D]

I also had a clear mammo and found a lump myself 6 months later. By then it was almost 4cm with satellite nodules and a positive IM node.

[momo]

I had a clear mammo, then 5 months later found a lump in shower, by chance. I sat on it for 6 weeks thinking, well, I had a clear mammo so it can't be cancer, I won't bother anyone about it!

Decided to mention it while at GP's for something else and went on to find it was an aggressive stage 3 and had gone to 2 lymp nodes.

Mammograms are crap!

[Susan]

I found my lump myself too while applying sunscreen. I had a clear mammogram 8 months prior.

[DanaRT]

Age 45- found mine in my sleep at 2 am. Woke up ran to the bathroom and located it again. I was having a very vivid dream about Robin Roberts. This 10 months after a mammogram! Later, I was told they could see traces of the tumor in that mammogram but choose not to mark it as a watch.

[jhandley]

Hi Joe
I found mine...6 weeks after I stopped breast feeding which I am fairly sure suppressed its growth. By the way my recurrence which I felt 4.5 yrs later did not show up on ultrasound and only a tiny microcalcification showed up on mammo. A core biopsy showed it was however a malignancy.
Cheers
Jackie (down under)

[Jyber]

Elizabeth Edwards also found her own lump in the shower (described in her first book).

My own was found in a routine clinical exam by my primary doc.

[hutchibk]

One has to wonder what the agenda is that fuels this kind of bunk within the organizations that are supposed to be our advocates.

[tricia keegan]

I found mine in the shower also at age 46!

[freyja]

Yup, me too. Found mine at age 31. My doctor told me it was probably nothing to worry about and come back in a month if it's not going away. Had ultrasound two months later and immediate biopsy and by that time was stage IIIa Her-2 +++.

[Laurieanne]

Me too! found my first lump at age 36 in the shower. Found
my second at age 44. Laying on my bed doing self exam.

[Cannon]

Me too, although I had nipple discharge before I found a lump. I was 43 and had not had a mammogram since baseline at 38 (had thyroid cancer, fibroid, hysterectomy, and Crohn's surgery in those intervening years, I swear mammogram was next on my list!). My gyn had done a physical exam 6 mos earlier and felt nothing. I was stage 3.

[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.

[Lien]

I found my first lump at age 25. It turned out to be a cyst. After 12 years of regular ultrasounds and one biopsy, I had a baby and stopped the checkups. At age 44 I felt a new lump, so I had a mammo. The radiologist didn't like the looks of my old cyst, so did a biopsy. It looked okay, but both the pathologist and the radiologist had a funny feeling about it. So we decided to remove both the new lump and the old cyst. New lump turned out to be b9, but the cyst held a 6 mm. spot of IDC and there was some DCIS as well. Thank God for BSE and Thank God for doctors who trust their gut feelings.

My sister (an actress and singer) was invited to a Pink Ribbon Gala last week and we grabbed the opportunity to tell the press how I found my lump by BSE. And how important it was for younger women to know their own breasts.

Here in the Netherlands mammo's start at age 50, which would have been too late for me.

Jacqueline

[michka]

I found mine while I was dressing myself (3cm, node invasion). I had had a mammogram 12 months before. The next one was scheduled for a few days later.I had a mammogram every year since age of 40 because of my family history. It was a shock not to have discovered the tumor smaller despite the mammograms. And they always told me my breast were easy to read because quite transparent.
It seems that there is a problem with the mammograms for some tumors. Or the machines or the setting? There are more failures than what they admit and this is dangerous because women might only rely on mammos and not do enough self exams.
Michka

[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

[cafe1084]

I found my lump also and had I not, it may have been found too late. I was only 35, low risk, and no recommendations for an annual mammo because of these reasons. I say in 10 years they do another study, only they poll women who took them seriously and stopped doing monthly BSE's and find out how many did NOT find their own breast cancers. Of course, the damage is done and they can't take it back and say "OOPS! We may have been wrong."

I thank God daily I had the good sense to check mine. From the day I was diagnosed I have told everyone, from the gas station clerks, to co-workers, to random announcements at several meetings, to do BSE's. Yes, some of them think I am crazy (or stupid), but if I can enlighten that one woman out of 8 who will get breast cancer, I feel like I have done something spectacular from the horror that was my breast cancer experience.

[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?

[DarleneM]

Mine was actually discovered by my husband. I was 28 and had never had previous lumps or mammos. I'm all for self exams, especially for young women.
Darlene

[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.

[hutchibk]

Re-read this too (that I posted earlier):

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?

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

I think that DL is correct on so many levels... however, there has to be a much more appealing and visionary way to promote the "new" info. I think the NBCC has done themselves and the bc community a great disservice by proposing the info in such a manner...

[jones7676]

I did monthly exams and found mine while on vacation in Washington D.C. (doing my monthly exam in the shower)

[Colleen007]

Had a baseline mammogram at 35 (normal) and found my own lump when I was 38 and pregnant with my daughter...I had not had any other mammograms as they weren't recommended until age 40. I was not doing a BSE. I rolled over in bed and my hand brushed against the lump.

[Ora]

I also discovered my lump myself

[Rich66]

Somewhere I heard that many breast cancers have been there for years before becoming detectable by palpation. So the relativity of "early" detection should be considered. Very dense breasts can hide lumps as well, probably better with an MRI in that case. My mom's wasn't picked up by mammo because of location. I wish PET scans and MRI were cheap enough to be included in regular physicals. Could help with many types of cancers.

[Unregistered]

For the record , found mine 3 mos or so after mammo, in the shower, IIB, HER2+. Not really looking for it but felt like something felt different when I picked my arm up. Guessing mine was missed as it was on the periphery of what might be seen on mammo. So I would not write off SBEs in favor of mammos.

Bev

[Karen Wheel]

Joe - wow - lots of stories here! I found mine - because I had a pain in my chest low - like in the ribs right at the bottom of the breast --- it woke me up (and at that point I was a sound sleeper!) in the middle of the night.... it kept me awake thinking and I was searching around and finally found what appeared to be something attached to the muscle near the rib. I knew immediately it wasn't good. Took me a month to get to the GYC, as I was in the US when I found it and then with Christmas ... so my doc said that a mamo and ultrasound were in order... did them 10 days later - and went straight after that to the Oncology....
I was so lucky as it hurt. If not, a normal - annual mamo would have never caught it - the doctor doing the mamo - had a really hard time getting a photo of it, even after he did the ultrasound, because of the position and it was almost 2cm...
AND - I had done 2 mamograms before - with "perfect" results - they said there was not even anything fiberous in my breasts (so it was the LAST thing I was thinking of!) and I know, I was bad, but I never did self exams, and had no shower card .... so without the pain, I would have not found it and with Her2 +++ I could have had a HUGE tumor by this time --- (6 months after surgery now!) and my lymph nodes were clear!

[Catherine]

Hi Joe,

I was 58 years old, when I found my lump while in the shower. I was never good at self exams. This was just a long, slow shower and there it was. Saw my OBGYN the next day, she felt it too. She sent me straight for a MRI. I was at an imagining clinic who could then do the ultra sound and the biopsy. It was a whirlwind of a day. Routine mamos every year. Mamo 11 months earlier had never found it. Count on yourself and believe.

Hugs to you and everyone on this site.
Catherine

[Carolyns]

I was finally diagnosed at age 33 (the first time after changing doctors to get a prescription for a mamograhm). I had stage I and learned that my gyno of 14 years said I had an obsessive fear of breast cancer. I found the lump and he pretended to follow me for a year.

The second time I was also stage I and 43 years old. That time I did not feel a lump.

At age 49 I was diagnosed with mets after finding the lumps. Both my oncologist at the time and surgeon blew me off. My OB/GYN ordered the ultra-sound that diagnosed me.

I am puzzled by this message. When I went to their conference in DC I met several leaders of grass roots efforts in the African American community. I learned that these women had a much greater risk of death from breast cancer. The reason as they explained it to me was due to a lack of awareness and the fact that most African American women were diagnosed much later and many at Stage III.

None of this ads up. I agree that more money needs to be spent on finding a cure but this message seems to translate into "awareness in not helpful in fighting this disease" and that translation is maddening.

Joe,
How can we get the Her2 Support group on that board? They need people like you and Christine. I was very saddened by their focus and lack support for metastatic women. I learned a great deal but it just seems like this is an extremely powerful and effective lobbing group with a narrow scope. They need a broader perspective. That said, I greatly appreciate the work that they do even if most of it will not benifit me or others with mets. They help keep breast cancer in the forefront of the leaders in DC and fight for funding from the defense department for research.

Love, Hope, Peace, Carolyn

[weety]

I found my own lump as well. I was breastfeeding my 3rd baby and just felt it one night when she was done nursing. It felt different than a clogged milk duct. It was very small (7 mm) and kind of felt like a little jelly bean.

[bikerchick]

Found mine in the shower also at age 41. Was due for my second yearly mamogram a month later. My doc thought it was a cyst too but decided to do a needle biopsy to be safe. Thank God she did.

[sarah]

2nd time around found a lump that turned out to be cancerous and had spread outside the breast - same breast as my mastectomy!
1st time was through a mammo.

[lyce]

first found on my first mamm in 1986, second, 2003, i found a month after a clear mamm...both invasive, second in other breast. knowing it was there it still didn't show on mamm..........and i read that self exam isn't worthwhile. these days from so many surgeries and radiation it is hard to tell what i feel. best, lyce