critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

a mammogram found my first cancer but I wish there was some way that didn't need radiation

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

http://www.radiologyinfo.org/en/safety/?pg=sfty_xray

Dear Sara,
I hope the following link of patient safety will help ease your concerns a little. Mammograms have the lowest (see the list).
What is vital is that your aggressive HER2 cancer was discovered early by the exam. Your way ahead.
Which I am happy for you dear sister you will be celebrating 10 years very soon.....
hugs Jean

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Thanks Jean,
Actually 14years from the first time around when I wasn't given anything - no herceptin, nothing, just surgery!
It's just that the radiation after the recurrence has caused several problems - heart artery collapsed = heart attack, angioplasty and stent and then fibrosis in lung = breathing problems, huffing and puffing up any incline, tire easily. But I was, at that point, in great danger so I think they felt better give her the full dose!
However that said, yes, a mammo saved my life and I do appreciate every single day. and of course I thank Herceptin!
be well
hugs sarah

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Mammogram and ultrasound missed my 1.7 cm. tumour only 3 months before it was discovered by my plastic surgeon as he performed a breast reduction on me.
Very dense breasts may have contributed to the miss.
All the docs say how lucky I was to have my tumour discovered in this unlikely way, as I was stage 1, no nodes involved. Breast MRI previous to my mastectomy found another 1 cm. tumour in the same breast.

I think the issue of breast density must be addressed as a very important risk factor.

all the best
caya

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Caya, here's a national map for those of us in the USA, indicating where this issue stands in regard to each state as of this past January. I agree with you, even though it is just a start toward addressing the problem. Most women doing routine mammograms have no idea that density is an important issue.

http://www.diagnosticimaging.com/bre...nteractive-map

P.S. Please be sure to read the information listed below the map, as it also is relevant.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Thanks for posting that map, AA.

My state is colored yellow, but I was getting the dense breasts warning wording added to my letters some ten years before I found my lump. Similar to:

“You’re receiving this letter because your breast tissue is dense. Dense breast tissue is very common and is not abnormal. However, dense breast tissue can make it harder to find cancer through a mammogram” is a common explanation in some state’s notification letters. Frank pointed out that these lines explain why it might be a good idea for this woman to undergo other imaging techniques. “And then the letter goes on to say something else: also dense breast tissue may increase your risk for breast cancer.”

So, I just want to point out that it can be a matter of the policy of the medical center prior to state law going into effect that dictates the dense breast warning in the post-mammogram follow-up letters.

I did not realize at the time, that it was not the norm to get that wording if one indeed had dense breasts.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Hi StephN,

You are most welcome. Sadly, Alaska is even further behind.... (time to apply more pressure to the behind!)

I would guess that the reason for your early warning was similar in its origins to the original testing for HER2 positivity, in that the large cancer centers were more reliable for this issue, too.

I didn't get any warning about density on the mammogram that detected my cancer here in Alaska, but at least it was detected despite the density. And ever since diagnosis, my imaging has all been done at a major cancer center.

A.A.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Thanks for posting this, A.A.
I have no idea what the protocol is here in Canada regarding advising women about their breast density. I doubt anything as regulated as in some of your states.

I found out later, when I knew about how important a risk factor density is, that I had dense breasts, and this was noted on my mammo reports. But no one ever told me, no one ever commented - until I was diagnosed. My G.P. told me she had noticed over the years that many of her patients, especially the pre-menopausal ones, like me, who had been diagnosed, had dense breasts.

I do my best, and tell everyone I know about this issue. Every year on FB when I announce how many years out I am as a survivor, I bring up the issue of breast density.

all the best
caya

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Caya,

You are in Ontario... British Columbia is closer to me... here is one possible indication of where Canada is (or was) as of April, 2014:

http://www.ctvnews.ca/health/breast-...hers-1.1763026

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

A.A.

Thanks for posting this. I did further investigation, and to my surprise and delight, Bill C-314 - the Breast Density Awareness Act - was passed in our federal Canadian parliament on Oct. 16, 2013. I note the date because I use Oct. 16th as my diagnosis date - how ironic!

The Bill has been stuck in our Canadian Senate since then, and the latest reading was in January 2015. I am going to look into this further, and see what the hold up is. I did read the Bill, and once it passes, it seems that breast density will have to be addressed to the patient and options given for other imaging, treatments etc. because women just do not know the implications.
This will be for all Canadians, not just individual provinces, because it was passed at the federal level.

Good news indeed! (once it passes!)

all the best
caya

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Inch by inch... Step by step.... Very nice, Caya!

I'm still looking too.... Here's where it looks like the U.S. federal government is with it:

http://www.asrt.org/main/standards-r...t_Density_Bill

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Excellent, A.A.!

all the best
caya

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

Wanted to clear the record. I have been treated at two different large,well-known (but associated) medical/cancer centers.

HOWEVER, my early mammograms and initial diagnosis all took place at a SMALL neighborhood medical center. The letters I referred to in my post above were from the smaller center. Again, a matter of policy and perhaps more enlightened leadership.

And I am very grateful for that. My lumpectomy, node resection and port placement were all done by a surgeon at the smaller center.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

From NZ and Australia, (no idea about any legal dense-breast-informing process here: will investigate) I saw on my mammogram and ultrasound reports that I had dense breasts, which I naively read to mean they were relatively firm. Nobody ever translated the complicated medical terms, and my GPs just said "No Nothing" Nobody ever said you need better checks because of your dense breasts. I was soon ignorant about breast pathology, and breast cancer etc So I thought I was fine. I just realised this week that the cyst that took me in to have a check was actually just a cyst, but it was sitting just under the IDC which was in a high-grade 6cm DCIS field that had tell-tale calcination etc. I wonder now whether I would have found the IDC if I had not had that cyst.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

I'd say that is a fair guess, JessicaV.

With the variations in radiologic practices and locations and facilities, I am wondering what is commonly done on a very widespread basis (no matter what facility or country) at the very least for mammograms that show the breasts are dense and don't show any abnormality. What I'm wondering is, is it already general basic common practice to add an ultrasound for dense breasts with no noted abnormality, to see if the ultrasound picks up anything abnormal?

Or perhaps if the mammogram shows dense breasts maybe it is at least standard basic practice for them to change from a screening mammogram automatically to a diagnostic one (perhaps adding an ultrasound)?

If we knew that.... at least we would share a better sense of what to accept and what not to for the time being as a higher standard to go by, rather than the vague concept of the recommendation for some kind of "further testing" for breasts that are dense.

I know "further testing" most likely refers to additional radiologic imaging. But I have wondered if perhaps what the value might be of instead or in addition having patients with particularly dense breasts have a CA 15-3 or CA 27.29 done as just one more possible indicator -- even though they too are not absolutely reliable for everyone.

A.A.

P.S. StephN - thanks for the clarification on your mammo.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

My cancer was picked up in a routine mammo. It was small...but very aggressive . Never felt a lump. If not for that mammo...I believe I would not be writing this today.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

The routine (first one ever?) mammogram found the 1.2 cm cancer on my right breast in 2003 and I thought we had gotten rid of it using surgery, chemo and radiation. But the following 3 years all the mammograms gave me the false negative because the recurrence was misinterpreted as 'scar tissue'. I know this because after the mammogram I requested a month early on the fourth year, the technician declared, after seeing the image on the screen, "O, scar tissue!"

But it was not 'scar tissue'. Because I had requested this mammogram through the original surgeon, she/they were able to tell that the cancer had recurred right where it was.

Re: critics cry "foul" to DO MAMMOGRAMS SAVE LIVES STUDY
 

A diagnostic mammogram AND an ultrasound and later an MRI missed EVERYTHING I had ... too numerous to list again here, see my signature. My nipple discharge, which turned out to be Paget's Disease, was misdiagnosed as an "infection" by everyone including the breast center's docs who came in to examine me during the ultrasound and gave me the all clear in both breasts. Thank goodness for my surgeon (and he is NOT a breast surgeon, btw) who insisted I have the "infected" nipple removed. That's when the tumor in my right breast, which was not HER2+++, was found.

The ONLY reason my HER2+++ tumor in my left breast was found was because I insisted on a double mastectomy even after an MRI said there was nothing wrong in my left breast. UM ... wrong AGAIN.

I have no faith in mammograms, or ultrasounds, or MRIs at all as far as breast tissue goes. I was telling my story to an ultrasound tech and she said, "Yeah, they miss stuff 20% of the time."

That is a pretty big percentage in my book. My first oncologist told me the invasive lobular carcinoma I had (HER2 equivocal) had probably been growing for 9-10 YEARS.

I was 56 when I was diagnosed and had been religiously having a mammogram every year since my 30's due to dense breast tissue/fibrocystic breasts. So she was really telling me the tests just kept missing it year after year.

I guess there is an argument that 1.0 cm HER2+++ tumor sprang out of nowhere in the 4 weeks between my MRI saying I was clear in that breast. I guess we'll never know.

I am just glad I made the choices I did. And thank goodness for the Paget's Disease. Without it, I would've just kept going on my merry way with the standard "You're fine, we'll see you in a year" letter I received after the diagnostic mammo and ultrasound.

Carol Ann