Dense Breasts

[jacqueline1102]

Hello all,

For those of us with dense breasts, I thought you might find this interesting. When I was going through ALL of my health records recently, I discovered that upon my first mammmogram at age 40, nine years ago. the results indicated that I had very dense breasts. I was never told this information. I would have been able to pay for the costs of my own MRI since we all know that insurance will not cover the costs of an MRI if the mammogram comes back negative. It would have been nice to have had the option. You may wish to pass this along to women you know. Something to think about, is having dense breasts, something we can't prevent, more of a risk factor than we have ever considered?


areyoudenseadvocacy.org/facts/

Take good care,

Jackie

[JillaryJill]

I am on a mission with the dense breast issue. I had mammograms every year since I was 40, diagnosed with Stage IIIc BC at 52. I went back and read my mammogram reports, only to find the following disclaimer verbiage on all of them.
"There is dense breast tissue which causes limitation with this study, and a small to moderate size mass could be easily hidden." Spread the word to anyone you know with dense breasts. A mammogram just does not suffice. I elected to have my left breast removed...no way was I going to rely on mammograms on that breast. Totally lost my confidence in mammograms.

[jacqueline1102]

Hello Jill,

It seems like we were in the same situation. I hope the link that I posted helps spread the word. There is actually a bill at the federal level which is taking on this issue. I hope others click on the link and support the bill.

Take care,

Jackie

[taiga]

I was in the same situation. I got all 10 of my reports - all were "extremely dense breast tissue". I had 2 mammograms while in treatment for ovarian cancer - you'd think someone would have at least thought maybe an ultrasound would be warranted, but no, got my "all clear" letter. All clear because you can't see anything they are sooooo dense! I had a mammogram in October 2011, felt a rather large lump a month later. My breasts are so dense it didn't show on the diagnostic mammogram and they really had to look for it with the ultrasound, and it was 1"! I'm in MO and they just passed legislation to include verbage on your "all clear" letter that you have dense breast tissue and to discuss it with your physician. I have told many, many people about the website areyoudense.org - a valuable piece of information that needs to be shared with all women getting mammograms.

[Becky]

Me too and I was ticked off my GP didn't tell me. I would have gotten an MRI or ultrasound. I changed GP's after chemo (wanted a doc to see me right away if I got sinusitis or something while on chemo). But - "gosh darn it" I was mad at the dense breast report year after year. Sometimes they said the tissue was so dense they couldn't see anything - go figure.

After my oopherectomy and Arimidex, my breasts are now "see through" - whew!

[michka]

I also had mammograms every year since I was 40 due to family history.
I was always told that my mammograms were very easy to read because my breast were NOT dense. I did not know at the time that mammos are not always reliable and that the best was mammo+echo+MRI. I would have done that. For years I heard Drs saying that mammos were reliable and they only had a 1 ou 2% problems. Now, at last they admit 15%. It is not a question of reading competency. Some tumors just don't show on one or another type of machine. The real breakthrough would be an improvement in one of the technologies (hopefully in MRI because no radiation).
So yes dose dense breasts need MRIs but don't leave out the other ladies.Give them the choice.

[Ellie F]

Totally agree. I got my letter that my mammo was clear the week before I found my 5cm stage 3c tumour. It never showed up on mammogram even after diagnosis. My next one after chemo pause was so completely different.
Stupid now I know but I actually felt reassured after my mammogram!
Ellie

[evergreen]

I am telling every woman I know about this issue. No-one told me, either, about the diagnostic challenges with a mammogram and dense breasts. This should be a standard part of a physical, being told about the challenges for folks such as us!

[shari]

Breast density is a major factor in the failure of mammography to detect breast cancer. Many states are now requiring that women be informed of their breast density along with their mammogram results. I am 42, pre-menopausal and have dense breasts. Just this summer I had an inconclusive mammogram along with a bi-lateral compression test and an ultrasound that were all unable to confirm the absence of cancer because of my density. I ended up having a BSGI/MBI test which is good for women with dense tissue. I received an injection of a tracer that accumulates in the cancer cells and makes them light up on the computer screen. This test is said to be comparable to an MRI and cheaper. I would definitely recommend it to anyone who is not comfortable with the results of their mammogram or ultrasound and wants to ease their mind.
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[StephN]

Add me to the group with dense breasts. I had my first mammogram at age 35 because of something suspicious that could be felt and it was just a little cyst that popped with a special needle.

The written reports for the last few mammograms I had contained similar verbiage Jill's.

Three months after my annual mammo I found my lump.
I was age 50, and trying to be more diligent about checking my breasts.

Keep the word on dense breasts hiding tumors spreading. My ocologist said the tumor looked like the rest of my tissue on the mammo. That was also in the days before digital and other better screening methods.

[Ellie F]

Ditto Steph, I had my mammo re- read by more 'experts, and the tumour still didn't show!
Ellie

[LeahM]

Agreed. I had dense breasts too. Mammo and u/s never showed my tumor.

[jacqueline1102]

Well ladies,

After I have been conducting even more research, there may be something we can do. The areyoudense.org website details which states have legislation in the works about the dense breast information to patients. Indiana is one of the states where nothing has been proposed as of yet. As a state, we are about 2 decades behind in many cases when it comes to health care, educational reform, and environmental causes. I wish I would have stayed in California when I was 21 :)

It is my intention to make this happen. I would encourage all of you who are well enough and have the current stamina and are passionate about this matter, contact your senator/house of reps after the election of course. Feel free to pm if you wish to have further information about how to do this. The advocacy website actually has letters drafted which contain language written in a manner that politicians may be more apt to respond to than "just another breast cancer woman complaining" I hope this is something that I will be able to bring to the boards as well as to women in my state.

Take care,

Jackie

[karen z]

I, too, am someone with very dense breasts. I am currently having a mamm. once a year (I am 7.5 years out) as well as an MRI. If the MRI stops being covered we will go to a mamm. once a year and a sono once a year. Thanks for starting this thread. All of this is important info for others.