For Those with Dense Breast Tissue

LtotheK

There are actually four categories of density based on percentage.  Ask your doctor to be specific. Mine was in the third highest, meaning, more than 75% of my tissue is dense.

Rocket

Mine were categorized as "Extremely Dense".  I'd had normal mammograms for 9 years and had pointed out a large lump and two thickened areas to my doctor for at least five years.  Each time he reassured me that it was fibrocystic breast tissue, despite the fact that my left breast didn't feel thickened like that.  Nine months after my last normal mammogram, I saw a PA at my gyn's office because the lump had begun to hurt.  She thought it was a cyst that needed to be drained.  It wasn't!  So at age 49, and 11 days before my son's wedding, I was diagnosed with cancer.  I ended up having three tumors (all three areas that I had pointed out for five years), none of which was small.  The three tumors in my right breast were in three different quadrants making them multicentric and were 1.7 cm, 2.1 cm and 3.9 cm.  I had a 70% chance that they had spread to my lymph nodes (fortunately they hadn't).  I was completely devastated by the diagnosis.  I was always very careful with what I ate, getting my regular checkups, never smoking or drinking, wearing my seatbelt, etc.  How could this have happened?  How could they have missed it?  I have been angry about this for the last year.  It completely astounds me that doctors don't exercise more caution where dense-breasted women are concerned. Have you ladies seen the website http://www.areyoudense.org/?  The woman who started the site was instrumental getting the laws changed in CT.  I recommend you look at it.  There is a great PDF http://www.areyoudense.org/pdf/color-two-page.pdf which I have shared with a lot of women prior to their receiving mammograms to give them the information they need to speak with the radiologist or their referring doctor.

I often wonder if I'd been diagnosed five years earlier, what treatments I may have been able to avoid.

LtotheK

Rocket, great links.  As for why the medical community is cavalier, this is where the statistics don't work in our favor.  Statistically, fibrocystic disease is rarely cancer.  No conclusive studies have been done on breast density and cancer, though clearly if you come to these boards, there is a relationship. If I hear one more time "80% of lumps are benign" I'll go postal.  But I think this is what rules the doctors' heads.

I also realized my ultrasound has been tracking my tumor for at least a year as "probably benign".  Meanwhile, they've been biopsying fibroadenomas to no avail. And yes, I also wonder what would have happened had they paid attention to this growth or given me an MRI at age 37 when my dear gynocologist declared it was time for me to start screening, as she was totally unclear on what was what in my breasts.

SarahsMom

I had to fight for an MRI for my dense area, as well (only on the left side, not on the right), despite having previous breast surgery on that same side and biopsy with atypical hyperplasia. The "come back in 6 months" thing just didn't set well with me this time and I dug in. Come back in 6 months for what, so we can all stare at the obscured area and hope it goes away? Send me away with more angst and concern? I don't think so. Thanks to all of you for the education, data, personal case history, this helps me so much!

kira1234

You know reading all this has me wondering why my BS hasn't wanted to check anything from my MRI from last year on my good breast. My MRI came up with a brads rating of 3 on that breast, and a 4 on the bad one, and that was 9 months ago.

Rocket

All I can offer is that 9 months prior to being diagnosed with bc, my mammogram was normal and my gyn drained a large cyst (which turned out benign) right next to the smallest of the three cancerous tumors.  I pointed the three areas out to him at that time and he said, "Yeah you have three in there and estrogen is driving these things." He thought they were either cysts or fibroadenomas.  They were ALL palpable and he never offered to check into them further.  I should have insisted and knowing what I do now, I would have been diagnosed years earlier because they were palpable at that time as well.  I had not changed doctors of imaging centers in the five years prior to my diagnosis.  It still sickens me to think about it too much.  I still struggle with anger over it.  I'm learning to forgive, but it is a process.

feh

Good post, Lynn.

feh

I have been reading about tomosynthesis for breast imaging.  It makes rational, practical sense to me - if we should push for this - and you should do your own research on it - then let's push.

SarahsMom

Rocket - thank you so much for your post. We are all learning out here, so I appreciate you visiting this board and sharing your story. 

Here is one of my favorite quotes. I've had some things happen in my life that have made me very upset - nothing like what you've gone through, of course - but I hope this helps!

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned. ~Buddha

kira1234

Thanks Rocket for the good post. I think I will be asking some questions at my visit with the BS next week for my first mammo since surgery.

eileen1955

I can relate to the issue of anger about delayed diagnosis.  when I collected all my mammo films/reports after my 2003 bc diagnosis, I read comments (year after year) about my extremely dense breast tissue.  My cancer should have been found before it was invasive. It was DCIS for yrs said my BS.

I had to give up the anger b/c I needed to apply that energy to healing my body. Some other bc survivor said that to me yrs ago, and it stuck with me.

So I use my anger to do productive things; but otherwise it's a waste of my energy. Works for me; so I thought I'd pass it on. our anger is totally justified but we need to let it go IMHO>

Lee7

I also need to let it go and just concentrate on getting through the tx ahead of me. 

I will remember your quote, Rocket, thanks.  

clariceak

You can also channel that anger into postive action on behalf of the women coming after you.  I was extremely frustrated with care I received at my local hospital.  I wrote a letter to the director of outpatient services detailing my experience and what I perceived as gaps in their care.  I received a personal phone call a few days after it was received and met with the directors the next week. 

I encouraged them to educate the providers on risk factors of bc including family history and dense breasts.  I was continually asked if there was a family history of bc during routine check-ups (big yes on both sides) yet this information never changed the care I received.  No MRI or ultrasounds were offered. Only mammos which, of course, are often useless with dense breasts.  Nothing will change my prognosis, but I felt better that I was possibly helping others avoid the same fate.

Fearless_One

Few insurance companies are going to pay for an MRI on a woman with no breast cancer history who happens to have dense breasts - and contrast MRI's where I live cost 7K).   The best most can hope for is an ultrasound with your mammo (u/s are pretty affordable).

It is sad and it angers me, but that's the reality of it.   That is why self-exams are so important.   

evelync

Eileen, 

thank you very much...I am breathing...I haven't looked at the mastectomy thread, I will today.  I have just waited trying to figure out what is okay and not okay to ask I think.  I have had 4 lymph nodes removed. 2 on the right and 2 on the left.  It was preventative since I felt as though I was just biding my time for the inevitable. I lived in fear every single time I had my mammo and u/s.  Every 3 months was getting old far too quickly.  I don't regret the decision, looking back; It came at a good time.  It has been hard waiting for my energy level to be more than it is but I am being patient.  Thank you again for the direction and advice.  I really appreciate it.  

mom3timz

Thanks for starting this post. I've been told ever since I started getting physicals where they checked my breasts (late teens I guess?) by docs that I have dense, lumpy breasts. Well, they ARE the only ones I've felt so I didn't think much of it.

When I was 38 my current doc did my yearly and after examining my breasts informed me I was getting a screening mammogram they were too dense to really feel properly.

I went with nary a thought. Then I got the call back for dx mag views for a microcalcification cluster. I requested my reports.

Since I've started being followed there is always a line about 'extremely dense glandular tissue pattern in the superolateral quadrant regions.... etc etc etc with a tiny cluster of miscrocalcifactions.' Short term interval followups 4-6 months.

One radiologist said 'moderately dense fibroglandular pattern' out of 4 dx mammograms. The others said extremely in the one area.

I've really not given it much thought until recently. I knew it was being watched etc. Now I'm waiting for the call from path for my mother's biopsy. (Surgeon and Radiologist said they felt it was most likely malignant.) Over the past few weeks I've been reading more and more about dense tissue etc.

I will speak with my OBGYN when I see her in a couple of weeks about her thoughts and more screening for this area since they continue to point out how dense the tissue is there specifically.

Thanks again  for the post. 

3monstmama

A friend's wife was just diagnoised with BC. It is already at the bone mets stage.  She has very dense breasts and all of her very regular mamograms were always perfectly normal.  She was only diagnoised because she was having back pain and they did a scan.  There is no history of BC in her family.

If I wasn't a firm believer in being pushy about advocating for ourselves before, I am now.  Were I in the situation, I would push for more than a plain mamogram. 

toni30

Thanks ladies. Very helpful thread. Does anyone know what an MRI costs?

bdavis

Think about $1000

bdavis

Just looked it up from my claim... $2000 for the MRI... but my MRI guided double biopsy (same breast) was over 5K

Linda_M

I agree that the cost of the MRI is a factor--my insurance initially refused to pay for it on the premise that there was no family history of breast cancer.  I said 'well history has to start with someone!"  The nurse in the office said "I" should call the insurance myself--I told her "No, the doctor should call the insurance herself, and explain things to them of why I need this".  The doctor did in fact call and spoke to the doctor/surgeon on the insurance review board and it was approved.  These MRI's are very expensive, but I also pointed out 'do they want to pay for years of cancer treatment for me, or for this MRI?'  Having to jump through hoops to get the care you need is insane, but you have to be protactive at all times I believe.

Anonymous

my yearly MRIs are about $2300. My oncologist has to submit the reason for it each year (high risk due to LCIS and family history of ILC), so the insurance will cover it.  Last year,  they only allowed about $1900 of it, and I only had to pay about 10% of it (about $195 I think). But without my mom's history of bc, it may not have been covered so readily.

Anne

Fearless_One

Are these prices you ladies are quoting for MRI's with contrast?   Mine was $7,000.00 (with contrast).  

pinkrose1958

Hello ladies,

Recently, I have been pricing ultrasounds...prices have ranged from $120.00 to over $300.00. I cannot get my HMO to pay for an ultrasound even though all my previous mammograms read extremely dense breast tissue. Hard to read with Mammogram. Recommended follow up in 6 months with Mammogram or Ultrasound. I was diagnosed with ADH and microcalcifications about 7 years ago. There's also a family history of breast cancer at a young age.

Previously, I worked as a collector for an Infusion Pharmacy company...collecting from the insurance company when claims were denied. I found out during that time that if you request a discount because you are a cash pay customer (let's say an ultrasound), clinics and hospitals will give you this discount. My suggestion is shop around. Recently, I was surprised that this hospital near me has a well established breast cancer center and I was quoted $120.00 for an ultrasound-both breasts.

As far as an MRI, this won't happen for me unless I have a PPO insurance. Currently, PPO's are quite expensive here in California.

Happy Day to all,

Pinkrose1958

Lou10

Posted this on another dense breasts forum, but then found this one, so sorry for the duplication...While I was told that I had "very dense" breasts (I now know they are >75%), which made reading mammograms and ultrasounds more difficult, I was never told this also put me at higher risk of breast cancer. I am 51 and have moderately large breasts (C/D cup).Talk about being a sitting duck while having diagnostic mammograms since my first mammogram in 2006! After my first mammogram I had an ultrasound of my right breast, then continued to go back for diagnostic mammograms. Found the lump in my right breast this past November, about 6 months after a diagnostic mammogram apparently was "fine".Was diagnosed with IDC in December. Had surgery in January and the cancer has spread to my lymph nodes with extranodal extension. The surgeon told me I can expect to have more surgery, plus chemo, radiation, herceptin therapy, etc. Will see an oncologist in about a week.I am so ANGRY no one told me about the higher risk of cancer with very dense breasts, or suggested an MRI (I had an MRI just before surgery that found a second suspected malignancy, which was removed, and a third, less suspicious, area of concern that will be investigated shortly). The anger is undoubtedly putting more stress on my body, so I better get a grip (hard enough dealing with fear and sadness). I'm now getting copies of everything and will ask for copies of my earlier mammograms to see what they actually said.

Rocket

Hi Lou,

I'm sorry you are having to deal with all of this.  I understand your anger well.  The thing that surprised me most about having BC, was the anger that I felt.  I was not only angry at my former gynecologist for not recommending any other tests (he kept reassuring me that the lumps in my breast were fibrocystic breast tissue), I was angry at myself and my caregivers.  I just didn't know how to handle all of it.  Eventually as I worked through the treatments, I became less angry and have been able to forgive my former doctor.  It has been a long and difficult process though.  Please let us know how you make out. 

Lou10

Thank you Rocket. I'm glad I found this site and will definitely come back (think I've reached my newbie post limit!)

fortunate1

Hi all,

No one ever ever told me that my dense breasts were a problem. I actually thought...."Great, firm breasts, no sagging!" Mammograms didn't find the tumor. My tumor, the "sneaky" lobular kind, formed a nice big atypical lump that I found myself. Confirmed by ultrasound and MRI. Who knows how long it was there. But I'm sure an MRI would have found it years earlier. I tell every woman I can to do those self exams.

I was just given an MRI at 2 years out. It was to examine a persistent benign lump on the reconstruction and enlarged lymph nodes on the non-mastectomy side. But really, I think it was because the Oncologist (and I) just wanted to be sure. It helped.

bdavis

FEARLESS... yes with contrast....

chele

I too had dense breasts.  My mammograms were always followed by sonograms.  When I found my lump I went in for a screening mammo, followed by a diagnostic mammo, followed by sono.  They all confirmed my lump.  It wasn't until I went in for an MRI that two more spots of cancer were found.  The mammo I'd had two years prior to finding my lump did not detect my tumor.  It ended up being 2cm.