Mrs. Edwards on mammograms...

RobinP · 04-06-2007, 06:57 AM

I applaud Mrs. Edwards for coming out and stating that her suggestion for cancer prevention is to get your (yearly) mammograms, something that she neglected to do. However,I fear that people will think that mammograms are a tell all for early diagnosis, which they are not. Mammograms are NOT 100% effective at detecting cancer early. From what I understand, mammograms are only 10-15% effective in detecting cancer in women that are menopausal and ONLY 70% effective in detecting cancer in premenopausal women due to hormonally denser breasts. Unitl something better than mammography comes along, mammography with Self Breast Exams and biopsy of all suspicous lumps are necesaary for early breast cancer detection. I can't tell you how many times I have read of patient and physician related bc delayed diagnosis due to overreliance on mammography. That's right even physicians overrely on mammograms, leading to a misdiagnosis of a breast mass, and that's one of the DARK SIDEs OF MAMMOGRAMS. What every woman needs for early detection of breast cancer is not just yearly mammograms, but self breast exams with biopsy of suspcious lumps and removal, or at least re-biopsy, of persistent and enlarging masses.

Yorkiegirl · 04-06-2007, 07:15 AM

Mine was not detected by mammo, or by self exam by me or the Doctor.

The Mammo showed 1 area thought to be a cyst, so an Ultra Sound was done. I was told it was only a cyst, BUT if wanted to have a biposy to go ahead. The Radioloist looked me straight the eye's and told me by looking at the Ultra Sound NO IT'S NOT CANCER!!!!

When the surgeon also looked at the ultra Sound he thought it was just a cyst. WELL Big surprize, I had 3 tumors, two of them were hiding and couldn't be seen on Mammo or Ultra Sound.

Sheila · 04-06-2007, 07:39 AM

My cancer was detected by mammogram...a tumor too small to feel or see via ultrasound....there has been alot in the news lately that mammograms properly read are still the best tool for detection...it just depends on the reader! I was getting mammograms every 6 mos. when mine was detected (due to family history). I can't say hoe thankful that I had a great radiologist reading mine!i

Sandy H · 04-06-2007, 08:23 AM

Being IBC, mine was not detected on mammogram. I had been having them every 6 months for several years. Even when we knew what I had it still never showed on the ultra sound. I have read that MRI is the best but because of the cost they will not use them for this purpose. I don't think this is the real reason because it seems lots of money is being spent on other testings. IBC is s lymphathic disease so scanning is almost useless here but it is still being done. I think its each one's responsibility to do what they and their doctor feel comfortable in doing. hugs, Sandy

caya · 04-06-2007, 08:58 AM

I'm sure I have posted my story before, but I think it is relevant once again:

Had a mammogram and breast ultrasound on June 29, 2006 - showing NOTHING!!
Had a breast reduction on Oct. 16, 2006 - my plastic surgeon found a 1.7 cm. tumour in my right breast and cut it out separately
Had a breast MRI in Nov. 2006 - another tumour "lit up" in the right breast.
MRM Dec. 17, 2006 - 1.0 tumour
So the story goes - because of my dense premenopausal breasts, I should have been getting breast MRIs all along. You can bet I will be vigilant with my daughters - Hopefully with newer technology ( I have read about 3D mammos which are almost as good as MRIs) things will improve.
I think the density issue is very important, regular mammos just aren't good enough.

Caya

Mary Jo · 04-06-2007, 10:10 AM

Mammography wasn't the tool for detecting my breast cancer either. I found my lump. It was very prominent and could have been felt by anyone. Hardly even had to press to feel it. Anyway, I was due for my yearly mammogram and wasn't concerned at all as I had a lumpectomy in this same area 14 years prior so I thought it was just scar tissue as it always felt "funny" in that area to me. So, went in for mammogram and I wasn't even going to mention the "lump" as I figured if they found anything they would let me know. Boy, would that have been a mistake. I decided to mention the lump to the tech. who marked the area with a sticker. They did the mammogram and found nothing their. They took more concentrated pictures of the area (and only because I felt a lump) and still found nothing their. Because the lump was felt they opted to do an ultrasound. I wasn't the least bit concerned because I was sure if a mammogram didn't see a lump in an area they were specifically looking at there surely couldn't be anything their. Well.....................long story short there was a 4.5 cm tumor. Actually at the time they were measuring it at like 2.5 but at surgery it was 4.5 x 2.something. It could have grown and my surgeon said you never really get the actual size till you remove it.

So I now tell all women to PAY ATTENTION TO YOUR BODY. Never assume anthing. Mammograms surely aren't always the answer BUT still a great tool and should be used. BUT if you notice anything at all suspicious make sure it is checked out thoroughly.

Mary Jo

ExpectAMiracle · 04-06-2007, 10:43 AM

I couldn't agree more with Mary Jo. Paying attention to your body is important.

I had a mammogram in 11/05 and nothing was noted on the report. I had a physical 7/06 and pointed out a small "bump" I had recently felt in my left breast, very close to the surface. My PCP said it was "nothing to be worried about" so I left it at that. Had my next mammogram (routine) in 1/07 and got THE CALL. The radiologist saw something in the left breast. He thought the "little bump" I felt was a cyst and wanted to aspirate it. I thought it was harmless as did he. Turns out it was IDC, 15mm in size, grade 3, HER2+.

I basically wasted 6 months of treatment time because I relied on my PCP to tell me to go see about the lump. If it feels different to you, have it checked out. If they want to keep an eye on it, tell them to do so in a jar on their desk!!!!!

Becky · 04-06-2007, 10:48 AM

I had had my yearly mammogram 8 months prior to finding my lump and it was clean (no microcalcifications etc). The mammo I had when I found (and my PCP confirmed) my lump clearly showed the lump on mammo (and the adjacent cyst). I immediately had an ultrasound that showed the lump and cyst. The ultrasound confirmed a fluid filled benign cyst and a suspious solid lump. So much for earlier detection of an almost 2cm lump. And they "say" bc grows slowly!

RobinP · 04-06-2007, 11:08 AM

What every woman needs for early detection of breast cancer is not just yearly mammograms, YES and MRIs for high risk, but self breast exams with biopsy of suspcious lumps and removal, or at least re-biopsy, of persistent and enlarging masses.

Let me assure everyone here that there is no way to get a 100% diagnosis from the following:
-breast MRIs- doesn't identify calcifications
-Breast mammograms- only70-90% effective at detection
-breast ultrasounds-even if a cyst is identified, even cysts have a 1% risk of being malignant, according to Dr Love.
-breast exam- only 50-70% accurate
-breast biopsy- may be subject to error by poor sampling or by pathology misreads.

Every patient's doctor should give the patient full disclosure of the error rate of the above procedures when they are being performed so that no one is mislead into thinking that their breast lump is benign when it may not be. What every doctor must be careful about is that many of the diagnostic tests above do detect cancer, however, theses same tests can also falsely assure that cancer doesn't exist when it does, resulting in a DELAYED rather than early diagnosis.

Becky, yes, they say breast cancer grows slowly. However, what they don't tell you is, if you are under 50 years old, the doubling time is 90 days, as opposed to 180 of women over fify years old. Also, I wonder how many mammograms are misread and falsely assure that no cancer is present.

Hopeful · 04-06-2007, 12:18 PM

I am postmenopausal with dense breasts that make it difficult to find masses. I had my 6 mo. follow up with my surgeon last week, right after the headline news about breast MRI's detecting contralateral bc. She thought I wanted to talk about that, but, thanks to a post on this board some months ago, I had copied an article from the website of a local hospital (with which her practice is affiliated) discussing a new technology called "Breast Specific Gamma Imaging" or BSGI for short. This is a nuclear medicine test, and is designed to see if the cells in the breast "behave" like cancer cells or normal cells, by measuring their uptake of the radioactive material injected into the blood. My doc was excited and pleased that I was interested in this test, said she liked it very much (well, she IS a surgical oncologist

) and said I could use it for screening alternating with mammograms at 6 month intervals. She said there was a trial in the works to compare BSGI with breast MRI's to determine if one was better than the other. Best news is, the doctor's office said they could get me pre-certified by my insurer for the test, the same as they get me pre-certified for my MUGA's. If this technology is comparable to MRI AND something my insurer will pay for (vs. MRI, which they likely would not) I think it is definitely worth doing. My bc was so "sneaky" that I no longer trust mammography alone to make sure I am disease free.

Hopeful

04-06-2007, 12:33 PM

My always lumpy breast felt lumpier right before I was due for my mammogram (first one in four years). I could see that my mammogram was going well and almost didn't mention the lumpier lump, but decided to anyway for peace of mine. After a number of magnifications and an ultra sound, I was issued a "probably benign," return in six months. My husband, who was due to leave for SA for seven weeks, said he was uncomfortable leaving me with such a diagnosis, so I went to see a breast surgeon and had a biopsy, which was DCIS. Surgery and pathology afterwards showed it to be DCIS and IDC. And, when I went to my primary care doctor, a woman, for my pre-approval for lumpectomy, even after we knew it was cancer, she felt the lump and said it felt like regular breast tissue to her. So, finally, it was a self-exam that did it for me and knowing my own breasts, and a stubborn husband. Nothing is proof perfect!

Mary Anne in TX · 04-06-2007, 01:05 PM

I guess God made us so intuitive; so that we could become "body detectives" when necessary! It really amazes me how much searching and pursuing is needed to get some answers! The 'ol body can really hide things from us. But it seems to me that it can't beat our intuition and "hard-headedness"! It is so encouraging to me to read how many of us just kept on keeping on to get an anwser when it didn't seem necessary to others! And it was my husband who pressed me to go get checked and discover that tumor! Mine was seen on the mammogram (4.5) and the radiologist came out to get me to make an appointment for a biopsy! He told me I had cancer right there! Scared me spitless, but got me to make that call to San Antonio to get help! I think sometimes it's a shame that we have to press to get checked in the way that best fits our case, but if that's what it takes, then that's what it takes! And it is all the stories here that keep me encouraged to fight for staying around a lot longer to fight for others who will face this battle someday.

Kimberly Lewis · 04-08-2007, 05:54 AM

I wasn't the only one who had a "missed" diagnosis. Yearly Mamograms were almost useless. By the time they saw anything they said it was a simple DCIS stage 0 - nothing to worry about. When the radiologist at Duke saw it she said and I quote "WHAT is that?!" So yes - a lot depends on the ability of the reader. I also had dense breasts - and a sister who insisted I go to the best surgeon I could find. Thank God I listened to her. I would have been missed again - 3 tumors, the largest being 3.8 cm.

I pray that women are listening and the word gets out....

Kaye · 04-08-2007, 06:25 AM

I was one whose cancer was missed by mammogram when I did have a "lump" which was a hardened area which was about 2-finger width's vertically by about an inch and a half in width that didn't show up on the mammogram. Since it was more in my upper chest there is the question as to whether the mammogram went high enough. However, I didn't feel it until AFTER the mammogram. I thought it was, perhaps, tissue damage or a bruise from the compression of the mammogram itself.

I have since read that if an area is cancerous that an injury to it may have some impact on it, and, perhaps even accelerate its growth. IF that IS true, couldn't a mammogram also be possibly detrimental--at least for some types of breast cancers, especially if they are more advanced?

In my case I had 2 earlier mammograms that should have been followed up with one of them about 2+ years before the last supposedly normal one after which I felt the hardened area. Maybe, if that hadn't been mis-read, my breast cancer WOULD HAVE BEEN caught early by a mammogram.

Maybe, mammograms are helpful for catching early breast cancer if they are read correctly, and maybe they are potentially harmful if done on more advanced breast cancers? In my case I had at least 3, possibly 4 (and maybe even 5) different types of breast cancer at time of pathology report. They included: invasive lobular, DCIS, inflammatory (which was described as a separate tumor in the nipple with dermal lymphatic involvement), and possibly Paget (since it stated "Pagetian spread"). In addition the worksheet used by the pathologist also had invasive ductal on it. That sure was a lot going on for someone who had regular mammograms and did regular self-checks.

If one were to evaluate my case, retrospectively or even anecdotally, I wonder if early breast cancer that IS left alone has the propensity to mutate into different types of breast cancer even if untreated? I suppose that my data could also be used retrospectively look at whether early intervention for small areas seen on a mammogram, accurately identified, does or doesn't 'cure' breast cancer.

Irregardless, most recent research suggests that MRI's are more accurate in identifying early breast cancer. Perhaps it would be more cost effective if every woman had an MRI at less frequent intervals than is recommended for mammograms? I wonder what % of women had mammograms that either didn't show their breast cancer or were mis-read?

dlaxague · 04-08-2007, 06:44 AM

What every woman needs for early detection of breast cancer is not just yearly mammograms, YES and MRIs for high risk, but self breast exams with biopsy of suspcious lumps and removal, or at least re-biopsy, of persistent and enlarging masses.

I'm here looking for something else but cannot resist mammography discussions. My concern with EE's statement about guilt r/t not getting her mammograms is that many will take her words to mean that if a woman has advanced bc, it's always due to lack of vigilance. Or the reverse side of that coin - if you get your mammogram you will not die of bc. It's so much more complicated than that.

IMHO, what every woman needs is not a mishmash of current screening methods, but something better. We do not have good enough methods of detecting breast cancer and even when we detect it "early" (dcis or ... argg .. what's the word? not atypia .. I'll remember it as soon as I hit send ) we don't know what to do about it. Right now we have to use what we have, but we should not settle for this - we need to push for better methods of screening and improved understanding of what to do with what we find.

BSE has not been proven to make any difference at all to survival. Even ACS no longer recommends BSE. There are no stats on CBE (clinical breast exam) either way - it may not improve survival either. Whenever this statement is made, women reply with "but Susie found her lump when doing BSE". Finding a lump does not necessarily equate with saving a life. Alas.

Debbie Laxague

bonnie · 04-08-2007, 08:27 AM

My mass was found during an annual gyn. appointment. When the dr. showed me where it was, I could feel it. I then went for a mammogram and and the 3.8 cm mass still didn't show. However, the ultrasound that was done did. Now I insist on having both a mammogram and an ultrasound.

Barbara2 · 04-09-2007, 12:11 PM

My 4.5 x3.7 cm tumor was not seen on the mammogram or ultrasound. 9 months passed from the time that I first noticed a "thickening," but my breast tissue had always been very dense.

Followed it up with a Dr.'s exam... it was missed again.

Had I known there was such a thing as an MRI for the breast, I'd have asked for the test.

DonnaD · 04-09-2007, 03:38 PM

My cancer was also found only by a yearly mammogram.
The 1.2 cm lump (1.7 largest point across after surgery) was near the chest wall. The surgeon, oncologist and radiation oncologist could not feel it and they knew what they were looking for and where it was.

What I missed was the enlarged lymph node. I only felt it after the surgeon showed me and it was obvious. Thorough self exams are sooo important. Don't forget the lymph node area!

momdeeco · 04-09-2007, 04:43 PM

I had a normal mammo in 8/05 and found a lump in 11/05. It seemed to pop up overnight. I am viligant about sbe, although almost hold my breath doing them thinking I am going to find something again. I am now requesting MRI's. This site is the first I've read on BSGI. Thanks for the info.