For Those with Dense Breast Tissue

Fearless_One

My doc told me 15% risk of mets, and 2% risk of recurrence if I get a prophy.   MX has no bearing on risk of mets.

bdavis

Right.... I knew that MX wouldn't affect risk of mets... just hadn't heard 15% risk of mets. Isn't that saying that we have a 15% risk of getting stage IV cancer? even with chemo?

bdavis

And Fearless... I see you did lump/rads and then MX,,, so why did you do MX? To get your local recurrance rate down to 2%?

Anonymous

I think this is a very personal deision for each of us.  For me, I'm tired of the weeks that are taken out of my life with biiopsys followed by the waiting for the results.  I do believe, as my new BS said to me, it's a qualitly of life choice.   If going through the close watch (MRI's, Mammo's ultasounds and the needle biopsies when needed) isn't an issue for you, then prophylactic BM is not indicated.  If it is, then it's something you should considrer and talk with your BS about. I certainly don't have the answer-or even "advice" for anyone making this decision-it's very personal.

  I am  willing to talk about my decision with anyone that is struggling with this. Please remember, I am pre PMX, so I can't give you any information abouut what it is like.

bdavis

ReHM046... I struggle too with this and am 97% sure I am doing PMX in July... even have my surgical date, and skip rads and NOT do the wait and watch... just wondering why others choose this route... It helps me to confirm what I am thinking... My newest issue is with that 15% met risk and why I hadn't heard that before this week... I met with my BS on Tuesday specifically to discuss MX and that's when this all came up

.

Sherryc

bdavis-did you have a onctotype dx done?  I think I would listen to your MO and be very specific with % chance of distance recurrance(mets, stage IV) and % of local recurrance or new BC.  The way I understood the oncotype dx was calculating distance recurrance.

I too am consider a DMX because of quality of life issue which my BS is comfortable with.  I can't see being watched and tested every 6 months for the rest of my life a very good quality of life.  With all that testing I know that there will be more biopsies.  Not to mention the expense that comes along with all that.  And I also have nerve damamge that was caused by both surgery and rads so my BS can deal with that issue during MX.

Fearless_One

BDavis, yes, I guess at our stage (IIA), risk of mets is 15%, at least according to my onc.   But I am not sure if that is pre or post treatment, I need to ask her next time I see her.

I had a MX because I have dense breasts and was afraid I would get cancer again (either a new one or a recurrence) and they wouldn't find it.    I have a high insurance co pay for MRI's and just can't get one every 6 months.   Mammos are worthless on me.

bdavis

No I did not get an oncotype test... My onc sais regardless of the score he wanted me in chemo and said it would be a gauge for chemo not distant recurrance... but maybe thats sort of the same thing... chemo can prevent distant recurrance.

juliem25

This is a very important and interesting topic - and my BS has never discussed breast density with me.  I was wondering - at what density level should you insist on further testing? Both of my reports always list both breasts as heterogeneously dense (51-75% fibroglandular). I also have a cluster of microcalcs in one that are being watched every 6 months. IF there ever was something sinister lurking in there - would a mammo even detect it? My center uses digital and I always get the callback for magnification views. However, I often wonder what they are looking for - just a possible change in the microcalcs? Also - this sounds like a dumb question - but, which is better? An US or a MRI?

Fearless_One

Juliem, if you are 51-75% glandular, that is most likely grade 3 which deems mammos pretty useless on you.   MRI's are much better, but also cost around 7K.   Ultrasounds are better than mammo alone, but not nearly as good as MRI.   U/S are cheap, around $250.00.  

Try to get MRI first.   If insurance won't approve, then get U/S.

vmudrow

Hi juliem25 - I agree this is a very interesting topic for those of us that got letters after mammos saying "very dense breast tissue" and something to the effect that because of dense breasts something might be missed.  Out of my five (benign lumps) removed only one was found with a mammogram - I felt the others.  Then I also had micro calcifications which they watched for a couple of years - then last year mammo showed they were clustering (so good the mammo picked it up), biopsy showed ALH - pre-cancerous.  After my PBMX several lumps were found that never showed up on any mammograms - thankfully all benign. 

Anonymous

I am so glad that this thread has continued and there is such excellent discussion and exchange of ideas.  I wish that this had been on the website in 2007 when I was trying to understand why digital mammograms showed none of my 2.2 cm IDC.  Go Girls!!!  Keep up the discussion.  Tell others about dense breasts.  Encourage everyone to visit the website AreYouDense.org.  Good luck to everyone.

vmudrow

Aug242007 - That website was eye opening.  I had no idea that dense breasts could be hiding so many lumps from mammograms!!

Towny

EVERYONE!! PLEASE WRITE LETTERS. SEND E MAILS!!

MAKE PHONE CALLS!! AREYOUDENSE.ORG NEEDS YOUR HELP

D.E.N.S.E. NY -NEEDS YOUR HELP

We are all women who had dense breasts!! Dx with late stage cancer and we are trying to get this info out to all the women!! Docs are not giving us information they have about our own bodies!!  Please go on facebook and encourage JoAnn Pushkin of DENSE NY and Nancy Cappello of areyoudense.org... all the states who are inovlved are on facebook!!! GET invovled!! Save someone from this nightmare we are all going through. I had a clear mammogram in June of 09 by Oct 09 I had a 8 cm lump that the mammo could not see and was never going to see it because of my dense breasts!! It is like looking for a snowball in a snow storm!!!!

please do something today!!!

Anonymous

 Julie Definetly an MRI is better than an ultrasound. and I was very surprised by the second opinion I got on the risk factor associated with having dense breasts.  My previous BS  mentioned that I had dense breasts every visit-but never said anything about it increasing  my risk-maybe I was suppossed to read between the lines?  But, as I've said previously, I've come to understand the prophylactic BMX was not on his "list" of options.  I've also come to believe that everything should be on the list and we should all be able/ allowed to make an informed decision.  We need to know what the risk factors are, how much it will decrease our current risk factors and what insurance will cover etc.  Without having ALL the information, you can't make an informed choice.  I was very impressed when the PS spent two hours with me going over what reconstrucion would entail-and being very clear that it was MY choice-he wasn't there to "sell" it to me.  That's what we all need in terms of physician care.

buffy

This information is soooo crucial to all of us out here who have or have had dense breast tissue.  I am so glad that the awareness is out there.  I had ALL normal mammograms...had a normal mammo at the end of May 2007 and was diagnosed with breast cancer the first week of August 2--7 because I found the lump myself and insisted on seeing a BS.  Then I found out I had dense breast tissue...Studies are so true -- breast dense tissue hides breast cancer.  A very good friend of mine who is a pathologist did say after the fact that that is true and if you are small breasted, the worse it is to identifiy.  I chose a Bilateral mastectomy/implants because I felt I was caught so off guard.  I have NO family history ANYWHERE in my family, i work out, had kids early, breast fed, etc etc..all the things you are supposed to do......it doesn't matter.  Everyone needs to be their own advocate and do the research and make your own decisions that you are comfortable with.  Everyone feels differently.  I am so happy I do not have to go through the anxiety every six months...we have enough anxiety in our lives, but it is all a personal choice!  Good luck everyone...this site is wondefrul for information.

bdavis

Buffy... Did you have recon??  and where?? Happy with the results now that you are past all that stuff?

Sherryc

I had ADH 14 years ago with a lumpectomy, had mammo's every year.  Had mammo in July and it found calcifications that needed to be looked at.  Could not get a good biopsy so did a MRI to rule out cancer which the calcifications were not cancer but I had a 1.6 cm tumor that the mammo's never picked up on.  I did not know that I had dense breast until I picked up all my films and reports for the BS and when I was reading the reports every single one of them refered to me haveing extremly dense breast tissue which no one ever mentioned to me. 

toni30

I am working with the Pennsylvania Breast Cancer Coalition to get the word out here - they are going to have  this as a topic at their fall conference.

Plils

Hello ladies,

I am glad I found this post, I also have a story, for the past 3 years I have always  been called  back for more pictures or a ultrasound after my mammogram's and been told I just have very dense breast tissue, (I have the digital one which are suppose to be the best)??? so when I had a good one 7 months ago I was very happy as you can imange.  So around Sept/Oct my breast started to itch and driving me crazy only my breast, went to my Dr. and we just thought it was from my BP medician which I was diagnoised with last year, switch it a couple time and nothing work my breast both of them itched so she did another exam and found a lump (little) and did some liver blood work.  To my suprise I was diagnosed with IDC in March had Lumpemocy/SNB in April just got my Oncotype score which was a 17 yaaa, now just waiting on my BRCA results because my mother was diagnoised with breast cancer 7 months ago and her mom died with overian cancer and my other grandmother died of colon cancer.  Well now now more itching yaaa just cancer....Also when I was having my mammograms before surgery they keep looking at my other breast and said just dense breast tissue which makes me wonder, I have an appointment on 5/12 and should have all results so I can see what treatment will be, I will suggest a MRI now that I have read all of these post and depending on the BRCA results more surgery for sure I will have them remove my only ovary have let due to endometricosis I had a partical done in 1997.  I am so confused as to what to do... I just want to get things going and be done with it,..Thanks for being here.  

XOXOXO  Pam 

Fearless_One

"mammo" and "dense breasts" should not even be used in the same sentence.   They are ineffective.   We need legislation and insurance changes.   What good is MRI technology if insurance won't cover it or our co-pays are too high (my co pay is 10% which would be $700 - not doable on a working girls salary).

angelinac

Hi, I just had an MRI, my doctor said my breast tissue was dense so now they want to do a Mammagram and a breast sonogram which from my reading on this site seems backwards. Should I be worried here? Has anyone else had the same situation happen to them?

Towny

Yes it does sound backwards!!! Maybe you need to go see another doc. An MRI should be able to tell them what they need. You should get a biopsy as well. I am from Shelter Island NY... Where are you going?? Zwanger radiology is good one. Not sure how close you are to Stonybrook?? They have a breast center there as well. Good luck

Ask them to show you the films and explain everything!!! Second opinions are good too.

PM me if you want more info on docs

angelinac

Hi Towny, I went to Zwanger. I am now going for my mammogram and ultrasound tomorrow at LIJ in Islip. If I have any concerns with those testings I would like to strat going to Stonybrook. I got a copy of the MRI on a disc from Zqanger I will bring it tomorrow to the imaging center I am going to. My doctor was angry that they are ordering more results and concerned as to the motive but I am going to do it anyhow since it was recommended by the radiologist, this will be my first mammagram so maybe they just want theprotocol met and something to compare next years to.

On another note I have not been feeling well for a while now and I wonder if it is related to anything with this. I have been very tired, extremely lethargic and have very little stregnth, lack of energy and find it hard to do very strenuous stuff so I am seeing my regular doctor tomorrow night now to have some bloodwork done. I will definitely let him know about my preventive care in regards to my recent BRCA1+ results. I will ask him if I should get bloodwork related to any levels indicating concerns for BC and OC if their are any.

angelinac

The radiologist is the one who said I should now do a mammogram and a sonogram not my ob/gyn...

leaf

Ahhh, now it makes more sense - they did the breast MRI because BRCA + women are supposed to be screened with MRIs, according to this 2007 American Cancer Society recommendation. http://caonline.amcancersoc.org/cgi/content/full/57/2/75

Mammos and ultrasounds are being performed because they see different things than MRI.  MRI sees almost 'everything', including definitly benign things like inflammation.  So the mammo and ultrasound are being used to see if they see anything of note in the same area.  

All these screenings are also being done to establish a 'baseline', since you are having your first imaging done.

angelinac

Thanks leaf this helps alot.

Towny

Dear Angelinac

If you need a oncologist.. Dr. Vacirca from North Shore hemo/onc is who I am seeing right now. he does a lot of clinical trials. Good Luck

Dr. O'Hea at Stonybrook is a surgeon and comes highly recommended if you need to see one..

Hopefully all will be o.k. We all have to really go in with our guns loaded and know what is going on! So be prepard and take a friend who knows what is going on as well. Never hesitate to get a second opnion!!  I did not realize you were brac positive.. that does change the picture.. O'hea is very good for all of that as well. I had a friend who saw him and he did an excellent job and helped her through those tough choices...Good Luck

Anniemomofthree

HI - another perspective, not to scare, but to inform - I had multiple digital mammos, found Stage 0 DCIS.  Had breast MRI, they saw the DCIS.  Had a BMX, then in pathology found the IDC, which was sitting amongst the DCIS.  MRIs tend to see everything, in my case, they drs. only saw the DCIS and not the IDC.  I was quite shocked...done with chemo now.  All is well!

bdavis

And there is one more reason I am opting for a MX instead of just a lumpectomy... you just never know what's lurking.