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Old 08-13-2012, 10:59 AM   #1
jacqueline1102
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Dense Breasts

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
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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Old 08-13-2012, 04:12 PM   #2
JillaryJill
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Re: Dense Breasts

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.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 08-13-2012, 04:49 PM   #3
jacqueline1102
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Re: Dense Breasts

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
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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Old 08-14-2012, 10:40 AM   #4
taiga
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Re: Dense Breasts

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.
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Old 08-14-2012, 03:36 PM   #5
Becky
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Re: Dense Breasts

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!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-19-2012, 01:12 AM   #6
michka
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For everybody in fact.

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.
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 08-19-2012, 06:57 AM   #7
Ellie F
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Re: Dense Breasts

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
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Old 08-28-2012, 08:48 PM   #8
evergreen
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Re: Dense Breasts

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!
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 09-17-2012, 07:47 AM   #9
shari
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Re: Dense Breasts

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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Old 09-17-2012, 10:25 AM   #10
StephN
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Re: Dense Breasts

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.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-18-2012, 09:31 AM   #11
Ellie F
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Re: Dense Breasts

Ditto Steph, I had my mammo re- read by more 'experts, and the tumour still didn't show!
Ellie
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Old 09-22-2012, 01:14 PM   #12
LeahM
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Re: Dense Breasts

Agreed. I had dense breasts too. Mammo and u/s never showed my tumor.
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
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Old 10-14-2012, 10:21 AM   #13
jacqueline1102
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Re: Dense Breasts

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
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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Old 10-14-2012, 11:29 AM   #14
karen z
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Re: Dense Breasts

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.
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