For Those with Dense Breast Tissue

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    we have to send letters to the politicians...I am disgusted with some of the journalist who have had breast cancer...and there are a lot of them and they have not stood up for anything.

    first... dense breast and mammograms

    second.. lymphedma treatment and sleeves that the insurance co may not cover... It is diplorable.....

    and also that PTs need to certified in LANA before they touch us.. Doctors need to more educated about the side effects of lymp node removal etc... quality of life!!!!!

    It is too much of a reaction to what happens afterwards instead of having game plan before surgery... meeting with a PT .. understanding the lymphatic system etc...

    I think the ACS  should do more!!! than hand out folders to be organized!!!!! I will not give them a dime for anything .. I think this organization needs to be investigated!!!! Sorry but that is what I am thinking!!!

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited July 2011

    Had dense breast tissue,couldn't get an MRI (in 2003) paid for...ended up Stage 2B in 2004... Just sayin...

  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    Soccermom were you able to get reimbursed from the insurance company?  just wondering

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited July 2011

    My insurer (back in 2003) would NOT pay for an MRI so I never had one. If I had been covered it is likely my cancer would have been caught at an earlier stage.Fortunately things have gotten somewhat better re: MRIs being covered based on breast density, family history personal history,etc.

    Marcia

  • CinLAlex
    CinLAlex Member Posts: 3
    edited July 2011

    At what point should you decide you need more than a mammogram? I was called back for a repeat digital mammo in May. I requested a copy of the report and it says the views demostrate somewhat nodular moderately dense fibroglandular tissue. No persistent mass, architectural distortion or grouping of pathologis micrcalcifications.  BI-Rads  right 3   left NA    follow up in 6 months

    I have always had my yearly mammograms and always got the everything is fine call, until this year, now I'm reading about breast density and I'm can't stop thinking, do I need more.... Please tell me smart ladies what would you do? Wait the 6 months or request the ultrasound or mri???
    Thanks, Cindy

  • bdavis
    bdavis Member Posts: 6,201
    edited July 2011

    Ultrasounds are cheap (by comparison) and don't need precertification so at a minimum, I would ask for US of the suspaect areas... My cancer did not show on mammo, but was crystal clear on US.

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited July 2011

    Springtime is right....my BS said my insurance company would never pay, I said, well let's at least TRY...and they did.  But I had to really fight her to request the authorization.

  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    Fearless one GOOD GOOD GOOD!!!! Good for you!!! This matnra of, "insurance won't pay" is bunk. 

    Cin - Can you find out from your Doc or Radiation doc how DENSE your tissue is? There are varying degrees. US is another good option, as BDavis says, but I can tell you, mine was invisible to ultrasound too, though, maybe this is not always the case. If it was me, I would push for the MRI. My sister-in-law had some abnormalities on her first mammogram, and was told to come back in 6 months. She pushed for the MRI and now knows, behond a shadow of a doubt, that she is clean. PEACE OF MIND. 

  • CinLAlex
    CinLAlex Member Posts: 3
    edited July 2011

    Thank you sweet ladies! Peace of mind is priceless!

    My mom just died in June of ovarian cancer after a 11 year battle... and I have lost one of my children and a sister to non-hogkin lymphoma, sometimes I feel like I'm waiting my turn...

    When I called the doctor's office about my report I ask the nurse what catagory the density is, she said it's not catagorized...The report says "moderate", from what I've been reading that's in the 50 - 74 percent ? I did receive a call from my GYN after she received the report and she said at this time we shouldn't be overly concerned.... I've never done self breast exams on myself regular but now I'm doing them every day, this is on my mind constantly! The report also said somewhat nodular, I'm feeling these nodules and something that feels like a ridge, am I over-reacting? What to do, what to do???  
    Thanks for listening, chat with you later and I'm wishing the best for all of you!! Cindy

  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    If it was me, Cin, I would insist on a breast MRI. I would be insisting with this doc, and if she didn't help, I'd go to another doc. You could try and ask for an ultrasound in between, but that didn't work for me. Just sayin. 

  • tamtam
    tamtam Member Posts: 70
    edited July 2011

    The last three mammos I have had in the past six years have all said I have Moderately dense breasts and a large amount of fibroglandular tissue, the increased density of the parenchyma reduces the sensitivity of the mammo ( I am a D cup). None of the cysts ever showed up on the Mammo but having Ultra sounds combined with the mammo have shown multiple cysts in the past six years and now there is also multiple complex cysts showing up and these do not show up on Mammo at all. I have a MRI coming up in a month and after reading the posts here I am glad I am getting one. Thank you for sharing this information.

  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    TimTam, I am very glad you are getting one - Did your doctor suggest this? What state are you in, (if you don't mind me asking). Fingers crossed for a good result. Please let us know what happens. 

  • tamtam
    tamtam Member Posts: 70
    edited July 2011

    Hi Springtime

    My doctor only suggested it because it was written down on my report from US that I go have one done. I have never been able to talk to him about any of the lumps over the past six years, you are aloud two questions per visit then your told to make another appointment ( He is on antidepressant's and his mood swings swing from one end to the other) and it wasn't just with me it was with all his patients. He has now left town and i am left with no doctor. 

    So far all I know is I have very dense breasts and each report I receive back is written different :(

    Report said: I have numerous lesions in both breasts which appear to be a combination of simple cysts and Multiple complex cysts. they are much more numerous on the left side than on the right side and they have increased in amount in the left breast since  the previous study. In addition I have multiple cysts in both axillae. They want an MRI done to exclude the possibility of a tumor process. 

    Each report I receive from them shows moderate parenchyma bilaterally and it sais it is very difficult to fully evaluate the breast parenchyma when they contain so many numerous cysts.

    I havent been diagnosed with anything yet but I think that is were the MRI will show anything. Out of all Mammos I have had no cysts ever show up on there, it also shows large amount of fibroglandular tissue. The mammo in 2006 did say within the axillary region of the right breast there is a 8mm nodule with a fatty hilum likely representing intramammary lymph node.

    Again on the ultra sound from 2006 within the upper quadrant of the left breast are 2 well defined hyperechoic lesions with the larger lesion measuring 2.4 cm in length, it may represent  large lymph nodes.(suggest correlation with more recent mammograms)

    and now the new one done in June 2011 shows cysts, multiple complex cysts and again it talks about the lumps in my armpit. 

    Each test i had on the mammo gram states it has a hard time to read my breasts, I kept pushing my doctor about it and he just walks out of the room. I cant fire him because there is such a shortage of doctors up here so your stuck with the one you have and if you have a doctor here count yourself lucky. I had a surgeon remove one cyst back in 2004 came back ok, since then my cysts have multiplied and many women get cysts I know but now the complex cysts are moving in lol. Not once has any of the techs or my doctor ever told me that the Mammo doesnt work well on dense breast tissue :(   I was able to get my hands on my reports of which they keep telling us were not aloud to have them. 

    Its been very frustrating to say the least and it feels like i am a ticking time bomb waiting to go off.  Now I will be going for an MRI with dye on Aug 17 and I am scared they might find something worse that the mammo didnt pick up. 

    Now any of the cysts I have the normal cysts and the complex cysts havent been aspirated and no one has mentioned that I should. Now if I do ask for that  do I ask them to take samples of each cyst? or only the complex cysts ?

    Side note: I am 45, I have had a hysterectomy 2 years ago do to loosing to much blood with my periods and iron deficiency (I also had two cervix's and a wall down my Uterus very rare I know so I was pretty much a guini pig for that lol ) so a few miscarriages and finally had one healthy son and I was 30 years old when I had him. Not sure if any of this is even pertinent but I did have cysts in my uterus before the hysterectomy. The stuff I had to go through just for that has made me not have to much faith in doctors :(  long story :( 

    Sorry for the long story and I wish i could post all the reports on the mammo and US so someone could see the time line up until now. I have read a lot (not good I know) but for me knowledge is better than the unknown.

    So in the end it all boils down to Im scared that after all this time the MRI that i am finally getting will tell me something bad (gut feeling). I hope I am wrong. 

    P.S  Living in Canada we dont have to pay for the MRI or any other tests so I dont see why they didnt suggest going for one before this ? 

  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    TimTam, I am SO GLAD you are getting the MRI. For me, it lit things up like light bulbs. I hope there is nothing nothing nothing! But soon, you will know for sure. (Sorry the doc was such a jerk, SHEESH!!!)

    When do you get the MRI? Soon? Or a long wait?

    Hangin there, you're on the right track now... Spring. 

  • tamtam
    tamtam Member Posts: 70
    edited July 2011

    ohhh I could tell you a few horror stories from around where I live ..... none  of them are good Frown combination of small town, over worked doctors and not enough to go around and to much of a rush to care anymore I have seen to many people in this town  get pushed aside or ignored and ended up passing away from there illnesses because by the time they did find what it was it was to late :(  I dont want to be one of them.

    I am schedules for a MRI on Aug.17 and its the one with the dye and the surgeon i contacted that I had before said I could ask for the results to be sent to him since my doctor is no longer here so that is a bonus.  I thought the appointment was far enough away since its already been a few weeks waiting but the secretary at my surgeons office told me they got me in pretty fast because when she went in for a MRI for her breasts she had to wait three months OMG, I told her for me that could be a good thing or a bad thing lol long wait could mean there not worried and getting in fast could mean scary lol  we seem to have much longer waiting times here in Ontario so I am happy I was able to get in when I did. 

    I will be gone for a week next week so It will take my mind off it for a little bit at least. I will cross my fingers and cross my legs if I knew it might help hahaha. 

    I just want to say thank you for taking the time to reply to my messages Spring.

    Wishing you a great day Smile

  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    Good luck TimTam! Come back and let us know what happens. It's less than a month away!! Glad you are doing this. And hoping for very unremarkable results! for sure....

  • machfowler
    machfowler Member Posts: 33
    edited September 2011

    Towny, maybe this will make you feel better about journalists. Personally, I think these women have the right to their privacy the same as you and I. But here is one who made a public announcement and used her position to encourage women to be proactive.

    http://news.yahoo.com/blogs/cutline/nbc-andrea-mitchell-breast-cancer-191413850.html

  • vamom
    vamom Member Posts: 56
    edited September 2011

    hi ladies. i'm another one with "D B's" i went from 2 'fine' mammograms to 5 MRI guided biopsies, (which were done in 1 week) and im waiting to consult with surgeon. i am 39. i had a benign tumor removed 10 yrs ago, and have had mammograms annually ever since. i have a strong family history of breast & ovarian cancer. an aunt (50, never had any problems) recently had a BRCA test, and an elective bilateral mastectomy w/ reconstruction. at first i thought she was crazy. now, i'm thinking she had the right idea.

  • diana50
    diana50 Member Posts: 2,134
    edited September 2011

    of course, after the fact of having stage 3 cancer....my breasts are so dense.  10 years ago' all i got was mammo; now i have a breast mri every 6 months. i am sure if i was having mri's 10 years ago my cancer would have been picked up earlier.  sigh. 

  • kellygh
    kellygh Member Posts: 17
    edited September 2011

    The lump I feel has not been seen on diagnostic mammo or us.  When I asked the radiologist if there was anything remarkable about my mammo, he sort of chuckled and said "no" as if I didn't hear him say itwas normal.  He then repeated everything looks good & come back in a yr.  I started reading about dense breats & decided to go get a copy of my reports.  My mammo report states that sensitivity may be reduced due to breast density.  It later says "extremely dense breasts greater than 75% bilaterally."  In the summation remarks, he repeats, breasts are extremely dense.  So much for nothing remarkable to discuss, huh?!!  US report stated "palpable ridge presents entirely as normal tissue." 

  • Sherryc
    Sherryc Member Posts: 5,938
    edited September 2011

    Kelly have you been to a breast surgeon.  If not you may want to make an appt and see what they say.  If you have good insurance covered I'd try to get an MRI as well.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Kelly, go to another doctor and ask for an MRI.  My breasts were very dense and I even had digital mamms that did not find my 2.2 cm IDC.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited October 2011

    Anne have to talked about getting an US

    My breast are very dense.  My tumor did not show on mammo or was it palpable.  It showed on MRi and then again on US.  Now my follow ups are to be yearly mammo's and yearly MRI's alternating every 6 months.  Just went to see my MO Friday and told him I just cannot afford these yearly MRI"s even with insurance my out of pocket is 2K and then I have other medical expensess and then what if something happens to DH.  So I told him I wanted another mammo and US of both breast instead of MRI and he said he was OK with it if I was OK with it.  I still think MRI is best but I will feel OK about the US.

  • vmudrow
    vmudrow Member Posts: 846
    edited October 2011

    This is a very interesting thread.  I had three benign lumps removed - two never showed up on mammogram, I felt them myself.  Every time my report would come back that my breasts were dense - it was like they were taking no responsibility if something were missed because my breasts were dense.  It was never recommended I have MRI or ultrasound.  I no longer have dense breasts because when my last biopsy for microcalcifications came back ALH I opted for PBMX - good bye dense breasts and the worry!!  Good luck to everyone - keep us posted.

    Hugs, Valerie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    I also never told during mammo that I had dense breasts.  That's the reason the "normal" mammo test looked the same as the "abnormal" mammo, which prompted an ultrasound & MRI.  Oh and don't think for one minute the MRI is accurate either !  It missed the size of my tumor by 4 cm.  and the tumor only appeared as scar tissue, nothing malignant.  If I've said it a million times, I'll say it again -- WE NEED better diagnostics.  Let's pour some of that pink money into that --

  • bdavis
    bdavis Member Posts: 6,201
    edited October 2011

    ALH is similar to ADH and I was told my chances of getting cancer was increased by 4-5 times... It took 14 years, but I did get cancer.. so even though a lumpectomy was all that was needed, with chemo and radiation, I opted for MX.. My cancer did not show on mammo, but did show on US... but US cannot be used as a fishing expedition.. I felt the lump so they knew where to look...The MRI was all foreign to me, but the best tool of all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Excuse me but what is ALH or ADH? 

  • vmudrow
    vmudrow Member Posts: 846
    edited October 2011

    ALH - atypical lobular hyperplasia   ADH - atypical ductal hyperplasia    I was told they were precancerous - the cells are growing kind of weird and kind of fast, either in the lobes or the ducts.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Again, I am so glad that this thread caught everyone's attention.  Pass the information to others.  Dense breasts means more breast cancer.  Also, now we know DES daughters means more breast cancer.  So for those like me, DES plus dense breasts increases your chance of breast cancer.  Again, wish I had known that!!!

  • Springtime
    Springtime Member Posts: 5,355
    edited October 2011

    I found out this information on some DENSE groups on FB who are fighting for change. Posting here in case you too would like to help the cause by sharing your story. I have sent an email with my story. 

    Send an email to - Shanika.Craig@fda.hhs.gov   (Ms. Craig)

    On Nov. 4th, the Mammography Advisory Committee (governed by the FDA) is meeting to discuss the Mammography Quality Standards Act. They are encouraging women who have dense tissue and ended up with breast cancer to share their story. I shared my story and strongly urged the committee to update the language in the Guidance Document.

    If anyone would like to see an example of a letter, see the DENSE CA group on facebook at the link below. There was a post today on this. 

    http://www.facebook.com/DENSECA?ref=ts

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