For Those with Dense Breast Tissue

Hi Ladies,

New to this thread, but unfortunately not new to this crappy disease.  And I too was the classic large, dense breasted woman who found my own 6.5cm primary tumor (smaller ones in same breast) that were NOT picked up by yearly digital mammograms.

Of course, AFTER my dx I learned about a wonderful foundation called the Brem Foundation run by Dr. Rachel Brem out of GWU in Washington DC.  She (a bc survivor herself) started this foundation to provide screening for the needy, as well as provide cutting edge diagnostic tools for women, especially those with dense breasts.  She too is a firm advocate for women that fit the certain criteria (dense breasts being one---and yes, you can have small but dense breasts) to push for MRI's until something better is found---that mammography is not good enough for those certain women. She also is researching BSGI---Breast Specific Gamma Imaging as a potentially life saving tool. See www.bremfoundation.com/bsgifacts.php.

I also have visited a WONDERFUL site www.1Uponcancer.com, whom I see the creator is also a visitor and bc sister here on bc.org.  I have found her site to be very informative and refreshing.  Not all the gloom and doom we find ourselves on "Dr. Google" as I like to call it.  

I was very sad to see, however, the extreme negativity towards RachelKa---specifically from Beesie here on this site.  From what I can see Beesie, RachelKa is just providing us with tools; just like it seems you are attempting to do.  We can all use whatever tools we want in our personal journey, and if we don't agree with what someone has to say we can politely disagree.  I have read several of your posts Beesie and find the exact critcisim you make of RachelKa's information in your very own posts.  For example in one you start out by saying in bold letters "Women with dense or extremely dense breast tissue are a higher risk of getting (sic---I thought we "developed" didn't "get" BC as it is not a communicable  disease) breast cancer", etc. without supporting documentation.  That seems a bit like what you are accusing RachelKa of.  Not that I'm disputing that statement, it very well can be true, but what resource did that statement come from?  And ironically after looking back over some older posts, you Beesie are stating some very similar facts that you are accusing RachelKa of supplying as being "unsupported, and inaccurate speculation."  Maybe your numbers may be different by a percent or two, but you both are stating the same message.  I have found RachelKa's site very informative, and frankly refreshing.  And she seems very supportive to the other ladies on BC.org.  Why so much negativity?  Did I miss something personal directed towards you?  Seems as though we are all here for the same reason.

Take care all,

Sharon

Hi ladies,

 I just want to clear up one thing: about Dr. Deborah Rhode's presentation on dense breasts and digital mammorgraphy. There is a comment in this thread that Dr. Rhodes is saying that DM has improved detection in dense breasts from 40% to 60%. That is not what she is saying. She is saying that with digital mammorgraphy, detection is a low as 40% and up to 60%, in women with dense breasts, depending on how dense they are and varied factors. For instance, women under 50 and premenopausal with dense breasts are the only ones it benefits over film mamorgraphy, with the chance of it  being caught going up to 60 percent in these women. Also, Deborah Rhodes' main point is that other than this one subgroup, DM has made no difference for women with dense breasts and there are for more ladies in this subgroup than that one population. The  Univ of Carolina study shows the same. http://www.ncbi.nlm.nih.gov/pubmed/15288038

I sure don't want to scare anyone; it's just that I think it's important for us to know the truth so we can push for MRI, or at the very least, DM with MRI. And by the way, almost all mammograms are  digital and have been for several years - this is not a new, exclusive thing. I did not go for a mammogram until a month after I felt the lump because I had not realized that the DM I just had may very likely have missed what turned out to be a very aggressive  cancer that had spread to my lymph nodes. Besides, my breasts are always lumpy and I questioned whether I needed to run back to the doctor every time I felt something. My mistake, and now that I am more educated on mammography, I know better for the next time. If you listen to Dr. Rhodes, she gives more detail on dense breasts (various categories) and also explains why she believes we have been misinformed about the efficacy of DM.

Beesie, I don't think anyone wants you to leave - I know I dont feel that way at all; I think you want to help, just like everyone else here. I would just appreciate respect for me and  everyone else who's trying to do the same.

Rachel

Kathy: Thanks for posting your story. Since you are in Pennsylvania, like me, let me know if you know anyone who might want to help us get legislative reform. We are working with the PA Breast Cancer Coalition.

Bessie, thanks for the clarification. Thank you for your reasoned reply. Your words and thoughts and prespective matter as you are rightfully considered a bco great.



No question, a choice that's regretted can be devastating.



A couple of frequent posters on bco (not Bessie) are hostile and dismissive of mastectomies. Categorically referring to the option of mastectomy as ridiculous. This attitude is hateful, hurtful and rude. I suspect they poo-poo mastectomies to soothe themselves over their alternative decision. If that works for you kindly keep it off the page. Please, It's imperative to be respectful of women who choose differently.



Now, where were we.

Wow Msippiqueen,

I am VERY glad I wasn't on this thread when the person poo pooing mastectomies was here!  I might have said something I would have regreted later! .  I decided on a mx of the cancer side (really no choice there if I wanted to live), and propholatic on the other side (which ironically ended up having LCIS!!).  For ME I knew I would second guess not doing it FOREVER.  It was truly a peace of mind thing for me.  Not that I WANTED it in any way, shape or form.  Who would???  But I totally understand the women who decide not to have the mastectomy.  It's their body and they are the ones that are going to have to live with it, not me.  So who would I be to judge?

Take care all,

Sharon

Rachel: If you have any data on 3D mammograms, please pass along.

Hi Toni,

This was what I thought was the meat of what I've read about 3-D mammography:

• As part of the approval process, the FDA reviewed results from two studies on 2-D and 3-D images from more than 300 mammography exams. In both studies, radiologists viewing both the 2-D and 3-D images obtained a 7 percent improvement in their ability to distinguish between cancerous and non-cancerous cases as compared to viewing 2-D images alone.
• 3-D doubled radiation time but the increase in risk for cancer is less than 1.5 percent
• Appears in initial tests to be a little better for dense breast tissue

Here's a link to what I had thought was an objective, accurate source . Lots of information and bottom line is initial results look like 3D is going to be somewhat of an improvement, especially in identifying what's going on with overlapping tissue and possibly with dense breasts, and less false positives. But more research is needed.

http://emedicine.medscape.com/article/1970908-overview

Thanks Rachel!

Ditto - no blank screen, but I have to scroll down.

I too have dense breast tissue.  Had a B9 (ADH) lump removed 14 years ago.  Have had yearly mammo's and no detection of cancer.  Had a call back this last time recommended biopsy and the first biopsy could not get a good one so DR ordered MRI.  The suspicious area they were looking at was B9 but a tumor 1.6 was there that never showed on any mammo's and no one could feel it either.  I never new I had extremely dense breast.  After diag I started getting copies of everything back to the beginning and it was there in black and white but no one every told me.  They did stress my yearly check ups but no one every really stressed that I was at a much higher risk.  Maybe that was good in a way that I did not worry myself sick for 14 years, however if I had known I would have researched more and asked more questions.  So had a lumpectomy because my BS thought I was against a MX.  I have nerve damage from radiation and am having lots of pain and swelling so went back to see the BS and she wants me to have a DMX.  Can't do it yet because I am too soon out of rads so we are working on pain control now and will proceed in a couple of months.  She said with all my history and my age 48 I will most likely get another bc in my life time and that a DMX would be best for me. So I continue on my journey.

Sherry: So sorry for your story.  We hear these stories over and over.  I found my lump myself 5 months after a mammogram. The medical world needs to step up and deal with this.

bdavis yes we have spoken on some other threads and just PM each other not to long ago.  You told me you were going to NOLA to have your reconstruction.  Is this correct?

Moderator thanks It was a good article.  I just wish that I had been informed years ago that I even had dense breast and what that really meant for me.

Dense breast tissue plus a breast size *under* an A cup made mammography very difficult for me. It really wasn't helpful - the ultrasound is what led to my biopsy.

rehm- because of my dense breast tissue and my history.  I will have the close watching with MRI's as well which is really bothering me.  My BS is now recommending a DMX along with the fact that I have nerve damage from rads and surgery.  With close watching every 6 months how can you every live and put this behind you.  So MX sounds better to me.