Suggestion Box

JanetinVirginia · February 2011

Moderators, I have a suggestion.

Having read posts for nearly 9 months, several issues stand out that I think Breastcancer.Org should publicize & display prominently to better educate women and dispell some common misconceptions. So many women (including me) could have been better advocates for themselves if only they had access to accurate information - especially regarding screening failure rates.

1. One of the first things newly diagnosed women say over & over with shock is "..But I have no family history of breast cancer." Yes genetic mutations carry high risk. But family history accounts for only 5-10% of BC. Yet 90-95% of women are lulled into complacency if they have no family history because it is emphasized so much in public information.

2. The statistic that is quoted by many breast cancer organizations is that 200,090 women are diagnosed each year. That, in fact, is misleading because that statistic refers only to invasive cancer. According to NCI, a total of 261,100 are diagnosed each year (invasive cancers and carcinoma in situ or CIS). Reporting only 200,000 underestimates the risk & number of cases by 26%. I think if you ask any woman with DCIS or LCIS, they would object to being uncounted in the incidence of 'breast cancer.'

http://www.cancer.org/Cancer/BreastCancer/OverviewGuide/breast-cancer-overview-key-statistics

3. Approx. 8-10% mammogram results are false negatives (missed cancers). At first, that may not sound like a lot, but according to the BC Surveillance Consortium, 7,869,022 mammos were performed between 1996 and 2008 (13 years). Eight percent of false negatives would equate to 48,425 missed cancer cases each year on average. That's HUGE. And in 1-3% cases, there were false negatives for both mammograms and ultrasounds. 34% of false negative mammograms are due to dense breasts. If women with dense breasts knew this, they could demand an MRI and many could have found cancers while still in situ.

http://breastscreening.cancer.gov/data/mammography_data.html

Thank you.

imbell · March 2011

Bump

luv_gardening · March 2011

Here here. Many with ILC have false negative mammograms. My US and Mammo were both negative and I didn't even have dense breasts. There was not a firm lump either, just a thickening. I had a 4cm tumour and 9 nodes, stage III and it worries me when just about every article or media piece on BC assumes 1) Mammos will pick up lumps and 2) firm lumps are the norm, with no mention of ILC symptoms or IBC. How many women will die through lack of information or misinformed doctors?

Moderators · March 2011

Thanks for the input!

thefuzzylemon · March 2011

This is great information!! Nice job.

Moderators · April 2011

Thanks so much for your helpful suggestions. The statistics and information you discuss is very important. On the breastcancer.org site information on the statistics can be found at

http://www.breastcancer.org/symptoms/understand_bc/statistics.jsp

Information on different screening modalities and strengths and weaknesses can be found at

http://www.breastcancer.org/symptoms/testing/types/

I hope this helps and greatly appreciate your highlighting these critically important topics.

Debbie

JanetinVirginia · April 2011

Thanks so much for taking the time to respond & the links. I found the statistics on the first link. However, I could not find any info on the screening link about the percentage of false negatives from mammograms. I clicked the link in your post, then clicked several deeper and still didn't see anything. I realize that there is still a need to encourage women to have mammograms -- but I also believe women need to be aware that the limitations are not insignificant & become an advocate for themselves for additional testing.

If the information is somewhere and I just missed it, perhaps that info should be bumped up to the testing or mammogram landing page. So many women on these boards (including me) had false negatives for probably years while cancer was growing - all the time thinking everything was OK. I had absolutely no idea how many cancers are missed by mammograms.

My general impression in all the awareness campaigns (Komen, etc) is that the relatively high rates of false negative mammograms are not publicized for fear that it would give women an excuse not to get mammograms. Personally, I find that unacceptable and paternalistic. This is an opportunity for BCO to take the lead and warn women about this issue. (Again if it's on the site somewhere and I missed it, I'd suggest moving it up. If I missed it, I would assume others do also.)

Moderators · April 2011

Thank you so much for your input and suggestions on the topic of false negatives associated with mammography!

Debbie

dogsandjogs · April 2011

JanetinVirginia:

I was told by my surgeon 28 years ago that Mammograms miss 15 percent of cancers. Maybe the percentage is a little less now, but both my cancers (in 1982 and 2010) were missed by mammograms, even though I've had them annually for 30 years.

I found both the lumps myself so I tell everyone it is absolutely imperative that you check yourself every month. Many women I talk to don't bother because they trust mammograms completely.

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