For Those with Dense Breast Tissue

This is a very helpful thread, thank you, ladies!  Thanks, Rocket for "Are you Dense" - great site!! My right breast isn't dense at all, but my left is in that 51-74% category with two spots of increasing density.  After being BIRADS 3 and being told to come back in 6 months for another diagnostic (why, if we can't see in there????) I fought to be seen at a breast center and finally was seen on Wed. Waiting for them to tell me if I'll have an MRI.  Fingers crossed, I know it isn't pleasant but we really need to look in there.  It's the same breast I already had a ductal excision on with ADH noted.  Apparently, not convincing enough.  Thanks to all of you for your insight, stories and support. 

I think if you go to the areyoudense.org site you will find helpful information on how to get the process moving to change the laws in your own state.  I agree that what we have been through is maddening.  Some doctors act like there are so few of us with dense breasts, that it isn't important to do additional testing.  Well I may be in the minority with multi-centric breast cancer, but I'm still worth being cared for appropriately.  If I were the doctor or the doctor's wife, sister, or mother, I might be treated differently!

The other day, I asked for copies of any previous mammograms my surgeon had ordered. I wanted to see what they said about density. While the clinic didn't have copies of all my mammograms, the three they had did not give the percentage density (unlike the one I had done this past December after finding the lump and being referred to a Rapid Access Breast Clinic). One of them said my breasts "remain very dense" (unfortunately I don't have the first one and subsequent ones refer to comparison with previous mammograms) and that this "significantly reduces the sensitivity of mammography". So why keep sending me for them? And why not recommend an alternative type of screening? Especially in light of the risk issue. What a combination: high risk plus low probability of detection.

Earlier this week I had a targeted ultrasound of the breast I just had surgery on (because of something else found on an MRI pre-surgery that apparently didn't look malignant). I thought it was just a routine-rule-it-out thing but I am now having to go for a core biopsy of that area. Ugh.

Aug242007, I completely agree that information on the risk associated with breast density should be widely publicized. I too am telling other women about this.

Dereelium - sorry for your worries but good for you for keeping on top of things. If there's any question about the "thing" when you have your next ultrasound, you might want to ask for it to be biopsied. That's an easy procedure and would give you a definitive answer about the thing (which even an MFI won't -- but an MRI is helpful for identifying areas of concern that don't show up on mammograms). Just a thought.

Deerelium

Sorry for what youre going through now. I would DEFINITELY push for an MRI. Did they give you any specifics on what they saw on the ultrasound? Can they tell you it's not a solid mass? Not suspicious, and explain why? Good for you for pushing.

Rachel

Afterf having a diag mammo and US earlier this week, I did my own research. While doing so, I came across this forum. My hats off to you all for sharing your stories and informing those of us who know very little. My conern: while having the mammo, I asked questions which lead to the woman allowing me to take a peak at the monitor. I saw a very white breast on the screen. I inquired about where the lump was and she reported she doesn't look for it. Understood. This followed with the ultrasound. The woman performing the US told me she was going to "talk behind my back in front of me to share with the student" who was beside her. She discussed that my right breast has no "fatty tissue," but is instead "very dense." She was in and out of the room, meeting with the Dr. and then returning for more readings. Afterwards I met with the Dr. and ultras woman. I was told several benign cysts found, get an MRI now followed yearly (or every two year - I forgot which) with another MRI. I asked if she was going to put that in the Dr. report, the utras lady told her it would be. They never spoke with me about very dense breast tissue. I went home, did my research, and yesterday met with my Dr. who said the report stated benign cysts, get mammo next year. Nothing about very dense breasts and the need for the MRI. I am so baffled. I only knew of the dense breasts because I paid attention. The doc discussed perhaps if biopsied nothing would show, insurance won't pay. My father's mother died of breast cancer. I've been told, and have a photo that proves this, that I look very much like my grandmother. Where is the line drawn as to what genes I inherit from her and which I don't. After discussing with the Dr. what I researched, she suggested I go to a breast specialist. It took my research to get to this point. So in April I visit the specialist. I'm hoping I'm doing the right thing. Your posts are what lead me to push. How do we make it clear that we need to be informed of dense breasts and that our GP docs need to be told? I'm so upset with the doc at the hospital. I'm also wondering if I need to go back and request this information be put in the report. Will the insurance company get the same report as my doctor? If so, it will definitely question why I'm heading to a specialist. At this point I'm hanging on to the assumption that the US results are fine and true. But this chat room and the fact that the radiologist Doc. told me to get an MRI gives me strong reason to question my assumption. Thanks for sharing your stories!!

Dereelium,

I agree that it would be good to have an MRI as well to make sure there's nothing else of concern, and to get a baseline against which future scans can be compared.

I had an MRI before surgery that showed two additional areas of concern (besides the tumour I had had biopsied that was malignant). One of newly identified areas was considered by the MRI radiologist to be malignant; the other not. The radiologist recommended a targeted ultrasound of the area considered malignant, but the surgeon didn't want to delay surgery and said she could remove it as it was in the same quadrant of my breast as the tumour slated for removal. A couple of weeks after surgery, I had an ultrasound of that other, benign-looking area, and now have to go for a core biopsy as it looks "possibly malignant" to the radiologist who examined the ultrasound. Ugh.

Go to a new doctor!!!! Do NOT wait!!!

This was it's own post but have re-posted here as it's all about being 'dense' so to speak.

 I have had mammo's + ultrasound for the last 6 years due to being high risk. In 2009 in australia the government brought in a rule that those considered high risk were allowed to have mri as well under medicare. So for that reason I decided to go to the high risk clinic as that's the only place that would qualify me for this under medicare.

No-one before had mentioned density but I knew they were because I keep my mammo's and I could tell (after much googling). That being said, no-one ever recommended anything else and it was only from my own searching on the internet that I knew about the new medicare rule and asked to be referred to that high risk clinic.

The radiologists there were like "she is going to have an mri isn't she?" they didn't seem to enjoy reading my mammo's at all and they weren't happy to sign off on them unless the boss Dr confirmed that yes I did qualify for an mri so obviously they are very aware of this issue which is great.

After that I was told that they wanted another radiologist to look at my films and would ring me if there was a problem but in the meantime to book the mri.

That's when they said not to get concerned if I get a call-back after very first mri because they don't have a basline yet so they will want to check everything they see.

So I'd like to do a survey on how many dense breasters got call-backs after their first mri that were false alarms?

High risk, (2 mat aunts, 1 sis) dense breasts.. never an MRI or ultrasounds for 10 yrs.  After discovering my lump, mammo was clean- tumor not seen.  Finally got my MRI. I have met women recently who are having MRIs because of the density.  My one sister recently complained of issues with left breast, Obgyn ordered MRI due to high risk and it was approved!!  Is it possible that if more of us were aware of this issue we would have pushed for additional tests?  I know I would have.

Hello I had very dense breasts.  My mother has had breast cancer two times, each breast. My grandmother and her sister also had breast cancer.  I had biopsies and calcification's.  I had to have MRIs and Mammo every six months on rotation. I needed two physical exams a year, of my breasts and the doctors recommended Tamoxifen as a preventive...well I choose a PBMX instead of living that life and I do not regret my decision.  I felt as if I was just waiting for "my turn".

Char: Sorry not to respond sooner - I've been out of town.  What I did here was to get a copy of the Connecticut bill from the folks at areyoudense.org.  Then I contacted my state breast cancer coalition - I bet Illinois has something like that.  If not, you would have to find a symnpathetic member of the state legislature (probably a woman since Obama is now in another job) and contact him/her about whether they would sponsor the bill. Or start with your own state senator or state rep.  We are at the early stage in Pennsylvania, but I'm going to keep pushing!

I posted this on another thread--those with dense breast tissue should go to a place that has a digital mammogram machine.  Here are two pages I found that shows the difference in the imaging between the digital and traditional film. 

http://www.cancernews.com/data/Article/210.asp

http://www.umm.edu/breastcenter/digital_mammography.htm

The other factor for mammograms is that the analyzing radiologist's experience makes a huge difference in the results.  I had a digital mammogram and my IDC was caught early (tumor turned out to be 2mm).  My surgeon said that many places would not have even caught it.  Look for a digital mammogram machine and make sure the doctor reviewing the mammograms has a ton of experience in breast imaging.  After the initial mammogram,  I went back for a second one and an ultrasound.  Then two biopsies--then meeting with the surgeon who ordered the MRI to make sure nothing else was found. 

I found the MRI rather uncomfortable myself--I didn't realize I needed an IV beforehand and that I had to be still for 30 minutes (thought it would just take a few minutes)--plus all the banging noises!  But worth it for the results. 

bdavis-I am sorry to hear you are dealing with all that crapola...my breasts were also too dense for the digital mammos.

Thanks, Bril - great sites.