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Topic: ADH Club

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 30, 2011 10:45AM - edited Aug 13, 2013 08:21AM by Chickenpants

Chickenpants wrote:

Can we start a thread on ADH (known as atypical ductal hyperplasia)?  There may be one already existing, but without a lot of hunting around, it's not easy to locate and may not be recent.

I'm 51 and have (had) no risk for BC other than being a female - non smoker, no immediate BC in my family, I'm fit, I exercise, eat well, maintain healthy weight, breastfed babies - all of that.  I feel like with every diagnostic test I endure, I keep squeezing through the skinny risk gates and have now landed with the ADH diagnosis (only 4% of women with atypical cells fit into the ADH group) and now I am at high risk for BC of some type, although DCIS is the more common association, I am also at risk for invasive.

My journey started June 28th, 2011, very typically with an (every 2 years) screening mammo, followed by diagnostic mammo for calc cluster (2mm of concern, but 9mm spread).  US found multiple cysts, but no lesion associated with the calc cluster, so on to the stereotactic VA core needle biopsy.  Results showed ADH and I'm scheduled for a meeting with the surgeon on Sept. 8th and this will proceed a further surgical biopsy - I'm thinking excisional, but I can't recall.  I will get clarification on the 8th.

Here's the dilema - from my extensive research, this conditon is like a ticking time bomb.  It's likely that I will endure future biopsies over the next 15 years as my risk just shot up 4-5 times that of unaffected (normal) women.  Anytime some more suspicious calcs are seen on a mammo, then the only way to determine what they are is by biopsy.  I will likely be on a short recall for follow up.  This for me, is more of a mental disorder.  I have small breasts to begin with, so there will definitely be constant reminders - scars and chunks missing.  The reality of this diagnosis is that there will be more to come - so stay tuned.... a large grey area indeed.  I totally understand why women would opt for a preventative double mast in this case.

Anyhow, that's some of my thoughts on this diagnosis.  I want to open up discussion around this and share links to interesting articles.  Oh, I know my chances are good that I'll never have anything more than what I have today, but still... like I mentioned, it's the mental aspect of this one - nothing concrete and always waiting for the other shoe to drop.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Aug 30, 2011 11:46AM banana111 wrote:

Chickenpants- I have the same fears that you do about recurring funky mammos followed by multiple biopsies.  I am 47 and my background is a little different than yours.  I was already at an elevated risk for BC.  My mom was diagnosed when she was 49.  I am only 1.5 years from that age now and it has weighed heavily on my mind.  My grandmother (mom's mom) also had ovarian cancer.  I have never given birth, started menstruating before age 11, have very hard-to-read dense breasts and now have an ADH diagnosis.  I have been having screening mammos since I was 35 at the suggestion of my mom's oncologist.

I had my stereo core needle biopsy Aug. 17 and am scheduled for an excisional biopsy this Thurs. (Sept. 1).  They had a very difficult time with the needle biopsy.  My dense breast tissue kept moving the area they were trying to biopsy.  I ended up with a large hematoma and am very bruised.  The excisional biopsy will be done as out-patient surgery at a local hospital. 

I have already discussed a BMX with my husband and he is very supportive.  The surgeon, on the other hand, thinks I am crazy.  I have already decided that if my diagnosis is changed due to the excisional biopsy (like DCIS), I will pursue a BMX. 

The surgeon keeps telling me that the statistics show that "survivorship" numbers are no better by having a preventative BMX, but like I told him my quality of life is much more important to me than survivorship numbers.  The stress that this has already caused me and my family is just too much to go through every time I have to go for a mammogram. 

I completely understand the stress you are going through.

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Aug 30, 2011 12:00PM momoschki wrote:

Chicken, I have no real wisdom to share with you other than to say I am in the same boat.  Dx'ed with ADH this Feb.  I am 54.  No family Hx, no other particular risk factors.  Remember that the 4-5X increased rate of BC occurence is not calculated from the 12% risk the "average" woman has, but rather from the theoretical woman with no risk factors, so in my case, I was told my risk over the next 15 years is somewhere between 20 and 25%.  It's still scary, and you are absolutely right-- it does feel like a mental disorder.  It's hard not to think about anything else, but nevertheless, here is how I have dealt with it so far:

1.  This doesn't sound like I viable option for you, being small breasted, but I had a prophylactic breast reduction done by an oncoplastic team here in NYC.  This procedure is not well known or endorsed by the general medical community, but there is promising research from Europe and Canada.  No guarantees, of course, but my surgeon thought it reduced my risk in the neighborhood of 50%.  Went from a D to a B cup.

2.  I started seeing an integrative oncologist.  In my case, he determined that tamoxifen or evista would only reduce my relative risk about 4%, so it didn't seem worth risking the SE's , IMO.  This doctor has me on many supplements, so I am hopeful that they will have a further preventive effect.

3.  I started seeing a psychiatrist.  This was especially helpful at the beginning stages of Dx and all the angst and anxiety which accompanies that.  I also decided that meds were in order:  Klonopin for anxiety (I wasn't sleeping at all at night--- now I sleep very well), and just last week, we decided to add a low dose of an antidepressant, since it seemed like my level of upset was just not propotional with my circumstances.  Too soon to say whether that is working, since I have only been taking it for 5 days.

4,  My breast surgeon was vehement at this point that I was NOT a candidate for a PBMX (I had only one very small lesion of ADH which was totally removed by the needle biopsy-- excisional biopsy and path report from the reduction surgery came back totally clean), but if, down the road, I had repeated biopsies, more ADH (or worse), I would go down the mastectomy road just not to have to worry about it anymore.  Of course, I would like to avoid that, but I have to see how the 6 month checks go.  First one is in November, and I am already nervous..

 Anyway, you should have a clearer picture about how to proceed once you have the excisional biopsy.  I think that now you are in the most difficult part of this whole nasty process-- lots of uncertainty about the future and not knowing what your game plan is yet.  As many have said before me, it is very likely that once you know what's what diagnostically and have a Tx plan in place, you will feel somewhat better. 

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Sep 1, 2011 08:02AM writingabook2 wrote:

Hi ADH Club

I wanted to add to the discussion about nerves.  I was diagnosed 7 years ago with ADH and LCIS.   I had another calcium cluster two years later.  Since then I have just been watched closely.  A mammogram every year and an MRI six months afterwards.  So I get checked every six months.  In the beginning I did feel like a ticking time bomb and it was all I thought about.  Seven years out I can say it is on my mind but the panic is gone.  I am 49 and feel like we are always at risk of some health issue.  I've lost family members to AIDS, leukemia, breast cancer, ovarian cancer, . . .    I was told the prophylactic mastectomy was no guarantee that I was cancer free forever and opted not to do it.  I have high family history, mom, grandma, aunt, great aunts, cousin, all had breast cancer,  but negative after gene testing.  If the gene testing had come back positive I would have had the mastectomy.  Anyway, I was on tamoxifen for 5 years and am on Evista now.  I agree with the woman who saw a psychiatrist and I am also on a little Klonopin and antidepressant.  It has helped.  Life has no guarantees.  I enjoy each day and deal with issues when they come up.  I always expect them to find calcifications and am relieved when they don't.  I do wish the insurance co would pay for 100% of my MRI.  It's a $500 for my 20%.  Does anyone have any suggestions about that side of the issue?

 I would like to add that we need to get a doctor to invent a more humane option for the horrific wire localization procedure.  I have dense breasts and it's like trying to poke a thin wire into a brick.  I almost pass out every time.

Thanks for the support!

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Sep 1, 2011 08:49AM vmudrow wrote:

Hi,

Just wanted to add my 2 cents.  I was diagnoised with ALH at age 49, same as ADH except its in the lobes instead of the ducts.  Because of strong family history (mom, aunt, cousin, grandmother) my mother was tested for gene - negative. Genetic counseling figured my risk was 40% to get breast cancer at some point.   I have been having mammograms since age 30 -at my mom's surgeons instructions.  The last ten years I would have a lump, calcs or something that needed to be biopsied.  I was getting so tired of the worry.  So after being told I had ALH was sent to an oncologist - he strongly recommended Tamoxifen.  After discussing with surgeon (who was very understanding) - I asked her what she would do as I was strongly leaning toward masectomies - she said she was a worrier and would have masectomies.  So that is what I chose.  Is it perfect - no, I am happy I did it - absolutely.  Is still do self exams and see the surgeon once a year because there is a 5% chance something could show up - but it would be very close to the surface.  If anyone is considering this and has any questions, please let me know.  Oh and since it wasn't cancer I was able to have nipple/skin sparing surgery. 

Hugs to you all - it's hard worrying all the time,

Valerie

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer
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Sep 1, 2011 10:48AM Chickenpants wrote:

Thanks for the replies - it's good to see some newbies as well as some more seasoned ladies.   I wanted to participate more in this discussion, but I'm on vacation right now with limited Internet.  I will re-check some interesting articles I've read and post the links when I have a chance.

Maybe we should call this the "short straw club" as that is what I keep drawing every time I go for a test or appointment.  My optimistic attitude is taking a hit...

Anyhow, I hope more ladies come along and offer words of wisdom.  Thanks again gals!

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Sep 1, 2011 10:57AM SpecialK wrote:

Just wanted to add my story.  Had a BMX last Nov. for a 2 cm IDC in my right breast.  I elected the BMX even though I was a lump candidate because I have been followed for the last 20 years or so for dense and fibrocystic breasts. I knew I would be a basket case if I just did the lump, waiting for the other shoe to drop and thinking every new lump was another cancer.  I had half a dozen cysts in each breast, and self exam was like feeling a bag of marbles.  Turns out that BMX was the correct decision.  IDC and DCIS in the right breast, and ADH and ALH in the left.  Mammo, ultrasound, and MRI all failed to detect the DCIS, the ADH and the ALH - oh, and my two positive nodes.  They were all found on post-op path.  Even though BMX does not eliminate all of my risk, I can definitely sleep better at night.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Sep 1, 2011 01:57PM JanetM wrote:

Thought I would add my 2 cents here as well.  I have been doing the every 6 month follow up after having a them see something on my first mammo at age 53.  I had a sonogram that was ultimately followed by a sonogram guided fine needle biopsy because it was so close to the chest wall.  Since then I have had a mammo or sono or both every 6 months.  Most recently the mammo showed significant calcifications that resulted in a mammo guided stereotactic core biopsy which showed ALH and LCIS.  Two weeks after the core biopsy I had a lumpectomy which removed ALH and LCIS but also showed ADH.  So now I am scheduled for a new baseline mammo of the busy breast in November and after that I will have to consider the options.  In my last conversation with my breast surgeon she said there's alot going on in there and we will need to follow you closely.   Not sure I like being on this merry-go-round.

Lumpectomy 5/24/11 - LCIS, ALH and ADH and SAH/BSO - 8/10/11 Dx 5/10/2011, LCIS, Stage 0, 0/0 nodes
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Sep 1, 2011 02:21PM Sherryc wrote:

I'll jump in on this as well.  I had ADH 14 years ago and had a lumpectomy.  Fast forward to last year and they thought my calcifications were cancer but after trying to get a biopsy which failed they did an MRI to rule out BC and found a 1.6cm IDC hiding behind the scar tissue of my last lumpectomy.  Had another lumpectomy and rads.  Ended up with permanant nerve damage from rads and am waiting for my body to heal so I can move forward with a BMX.  14 years ago they did not use tamoxifen for prevention and it never occured to me what a high risk I was.  I guess that was a blessing because I never worried about it and I am a worrier.  So my BS does not tell me that if I have a MX i don't have to do rads.  After it is all over and I am seeing the BS again for the nerve pain and find out I have to have yearly mammo's and yearly MRI's alternating every six months.  And also after talking to my MO and finding out the rads does not destory ADH cells only cancer cells.  I did not like the thought of that rollercoaster I also realized that my yearly MRI's with deductible and 20% was going to run me 2K a year and I told them I cannot afford that for the rest of my life and this rollercoaster suks.  So then she talks to me about getting a MX.  She only wants me to do the one but after visiting with the PS and the amount of damage that I have from rads and my history he is suggesting that I do both and he wants to do the BMX and reconstruction himself with no BS as he does not want them to damage any of my blood vessels which is fine by me.  I know that this will be the best for me emotionally as I am a worrier.  At some point I want to go back to the yearly appts and not have all the reminders of BC everytime I turn around. 

Sherry--lump left breast 9/30/10. No chemo, Zometa-6tx over 3 years.Oncotype score 23 with 14% recurrence rate. 34 rads. No family history, BRCA neg. 48 years old @ diagn. BMX/TE 3/26/2012, Exchange surgery 8/21/12, Revision surgery 11/27/12 Surgery 5/12/1997 Lumpectomy: Left Dx 9/27/2010, IDC, Left, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 12/3/2010 Hormonal Therapy 2/7/2011 Surgery 11/3/2011 Lumpectomy: Right Surgery 3/26/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Surgery 11/27/2012 Reconstruction (left); Reconstruction (right)
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Sep 1, 2011 02:50PM JanetM wrote:

I officially hate this land of limbo and 6 month followups......

Lumpectomy 5/24/11 - LCIS, ALH and ADH and SAH/BSO - 8/10/11 Dx 5/10/2011, LCIS, Stage 0, 0/0 nodes
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Sep 1, 2011 03:51PM momoschki wrote:

Can I say that  I officially hate the 6 month follow-ups when I haven't even started them yet??

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Sep 1, 2011 04:02PM JanetM wrote:

Sure...the more the merrier.  At least we can keep each other company.

Lumpectomy 5/24/11 - LCIS, ALH and ADH and SAH/BSO - 8/10/11 Dx 5/10/2011, LCIS, Stage 0, 0/0 nodes
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Sep 3, 2011 04:41PM mvspaulding wrote:

I can also join the ADH club.  I had an excisional biopsy in June 2010 and the lump turned out to be a fibroadenoma but they also found ADH cells around the lump.  So I was put on the every 6 month follow up and was recommended to take Tamoxifen.  I chose not to take the Tamox at the time because I also have endometriosis and I was looking at knee surgery in Nov and didn't want the added risk of blood clots.  So I went back for a mammo on Dec. 2010 and everything was clean.  I was sooo relieved after the year I had with 3 surgeries in one year I didn't think I could take one more thing.  I was told to come back in June of this year.  Which I did and I was clean again!  woo hoo.  Now my BS feels comfortable with me going back to yearly exams and mammos.  Which I was very happy about at the time, but now I feel a little apprehensive about going a year, this is just the worrier in me coming out.  I still have not taken the Tamoxifen and I am hoping that I won't end up regretting that.

Dx 9/21/2015, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR-, HER2- (FISH) Surgery 10/26/2015 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/2/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/6/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/26/2016 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Sep 15, 2011 04:33PM Chickenpants wrote:

Sorry, I haven't nurtured this topic I started, but I have been away - took a vacation from BC - also didn't have Internet on holidays, but anyhow, I'm back and I want to share articles on the subject. 

Since someone on another post thought that excising ADH cells via surgery might be overkill, it is a sneaky condition and one that we have to learn to live with.  We just don't know who will progress on to cancer and who won't.

Anyhow, I thought this case study was interesting:

Abstract

Background: The purpose of the current study was to compare the prevalence of invasive or in situ cancer at excisional biopsy in patients with image-guided core needle biopsy (CNB)-proven atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH), or lobular carcinoma-in-situ (LCIS). Factors affecting the upgrade rate to malignancy were also identified.

Methods: Patients diagnosed with ADH, ALH, or LCIS on image-guided CNB (stereotactic or ultrasound) from 1995 to 2005 were identified through radiologic and surgical databases. Patients who subsequently underwent excisional biopsy of their lesion were included in the study. The imaging, medical records, and pathology of these patients were reviewed.

Results: Ninety-six patients with either ADH (61/96, 63%), ALH (19/96, 20%), or LCIS (16/96, 17%) on image-guided CNB proceeded to excisional biopsy. Malignancy was detected on excisional biopsy in 31% of patients with ADH, 16% of patients with ALH, and 25% of patients with LCIS. There were no significant differences between the 2 groups in terms of age, parity, hormonal status, or previous benign breast biopsies. The presence of a mass on mammography was associated with an increased upgrade rate to malignancy, while biopsies performed using vacuum-assisted devices, larger gauge biopsy needles, and greater number of cores were associated with a lower upgrade rate.

Conclusions: Our data suggest that excisional biopsy is warranted in all patients with CNB diagnoses of ADH, ALH, or LCIS to exclude the presence of cancer. © 2006 Excerpta Medica Inc. All rights reserved

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Sep 15, 2011 05:38PM vmudrow wrote:

Chickenpants - very interesting study!!

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer
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Nov 4, 2011 11:34AM - edited Nov 4, 2011 11:37AM by MariaB2010

I was dx'ed with ADH in March of 2010 on my right breast, (at the same time my dad was on his death bead, he passed away may 2010).   I had the biopsy and the excitional biopsy and they took everything out (pre-cancerous cells, that is).  I have been following up every six months.  3 weeks ago had my routine mammograms, they found something suspicious on left breast. had sonogram done.  still they can't tell me exactly what it is. the suspicious thing is way behind the breast area. had to reach it.  I had mris done last week, well I have to repeate that today because supposedly there was too much hormonal activity in my breasts and the results are not clear.   (yes i was on my period when I went last week). they never asked me, however, I did write it down on the paperwork they give you to complete.  anyways, i'm going back this p.m. to have MRIs done on both breast to try and figure out what is the suspicious thing on the left breast.  for purposes of background.  I have two aunts on my mom's side of the family that died of breast cander and my grandma on my dad's side of the family died of breast cancer.  I took birth control pills for 20 years, so I guess I'm consider high risk.  :(

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Nov 4, 2011 01:44PM thatsvanity wrote:

I had a PBMX because of an ALH biopsy and my younger sister died of breast cancer 4 months before my mastectomy and reconstruction. There is no way a woman should wait and see what happens with an atypical biopsy, all imaging was useless in my dense breasts. I felt in my heart it was the best choice PBMX for my health.

Atypical lobular hyperplasia(11/11/10) PBMX NS mastectomy on 5/26/2011 Dx 11/11/2010, Stage 0, 0/0 nodes
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Nov 4, 2011 01:49PM thatsvanity wrote:

Definition

How cancer develops
Atypical hyperplasia is a precancerous condition that affects cells in the breast. Atypical hyperplasia describes an accumulation of abnormal cells in a breast duct (atypical ductal hyperplasia) or lobule (atypical lobular hyperplasia).

Atypical hyperplasia isn't cancer, but it can be a forerunner to the development of breast cancer. Over the course of your lifetime, if the atypical hyperplasia cells keep dividing and become more abnormal, your condition may be reclassified as noninvasive breast cancer (carcinoma in situ) or breast cancer.

If you've been diagnosed with atypical hyperplasia, you have an increased risk of developing breast cancer in the future. For this reason, doctors sometimes recommend more frequent breast cancer screening and careful consideration of medications and other strategies to reduce breast cancer risk.

Symptoms

Atypical hyperplasia doesn't cause any specific signs or symptoms.

When to see a doctor
Make an appointment with your doctor if you have any signs or symptoms that worry you.

Atypical hyperplasia doesn't cause signs and symptoms, but it's usually discovered during a breast biopsy to investigate breast signs and symptoms caused by another condition or an abnormality found on a mammogram.

Causes

How cancer develops
It's not clear what causes atypical hyperplasia. Atypical hyperplasia forms when breast cells become abnormal in number, size, shape, growth pattern and appearance. Location of the abnormal cells within the breast tissue — the lobules or the milk ducts — determines whether the cells are atypical lobular hyperplasia or atypical ductal hyperplasia.

Atypical hyperplasia is thought to be part of the complex, multistep process by which breast cancer develops. The process begins when normal cell development and growth become disrupted, causing an overproduction of normal-looking cells (hyperplasia). Atypical hyperplasia occurs when the excess cells stack upon one another and begin to take on an abnormal appearance. The abnormal cells can continue to change in appearance and multiply, evolving into noninvasive (in situ) cancer, in which cancer cells remain confined to the area where they start growing. Left untreated, the cancer cells may eventually become invasive cancer, invading surrounding tissue, blood vessels or lymph channels.

Complications

Increased risk of breast cancer
If you've been diagnosed with atypical hyperplasia, you have an increased risk of breast cancer in the future. Women with atypical hyperplasia have a risk of breast cancer that is about four times higher than that of women who don't have atypical hyperplasia.

Being diagnosed with atypical hyperplasia at a younger age may increase the risk of breast cancer even more. Women diagnosed with atypical hyperplasia before age 45 have a greater risk of developing invasive breast cancer during their lifetimes, compared with older women, especially those older than 55.

Preparing for your appointment

If a mammogram reveals a suspicious area in your breast, your doctor may refer you to a breast health specialist or a specialized breast center.

What you can do
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well prepared. To prepare for your appointment, try to:

Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
Write down key personal information, including any major stresses or recent life changes.
Make a list of all medications, vitamins or supplements that you're taking.
Consider taking a family member or friend along. Sometimes it can be difficult to absorb all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
Questions to ask
Your time with your doctor is limited, so prepare a list of questions ahead of time. List your questions from most important to least important in case time runs out. For atypical hyperplasia, some basic questions to ask your doctor include:

Can you explain my pathology report to me?
Do I need more tests?
Will I need surgery for atypical hyperplasia?
What treatments do you suggest?
What can I do to reduce my risk of breast cancer?
What signs or symptoms of breast cancer should I watch for?
How often should I have a mammogram to screen for breast cancer?
Should I also have an MRI to screen for breast cancer?
What would you recommend to a friend or family member in my situation?
Are there any restrictions that I need to follow?
Should I see a breast health specialist? What will that cost, and will my insurance cover it?
Should I consider genetic counseling?
Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared, don't hesitate to ask other questions that come to mind during your appointment.

What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time later to cover other points you want to address. Your doctor may ask:

Do you have a family history of breast cancer?
Do you have a family history of other types of cancer?
Have you had a breast biopsy before? Do you know the results of previous breast biopsies?
Tests and diagnosis

Atypical hyperplasia is usually discovered after a biopsy to evaluate a suspicious area found on a mammogram or during a clinical breast exam. During the biopsy, tissue samples are removed and sent for analysis by a specially trained doctor (pathologist). The tissue samples are examined under a microscope, and the pathologist identifies atypical hyperplasia, if it's present.

To further evaluate atypical hyperplasia, your doctor may recommend surgery to remove a larger sample of tissue to look for breast cancer. A diagnosis of atypical hyperplasia may lead to a surgical biopsy (wide local excision or lumpectomy) to remove all of the affected tissue. The pathologist looks at the larger specimen for evidence of in situ or invasive cancer.

Treatments and drugs

Atypical hyperplasia is generally treated with surgery to remove the abnormal cells and to make sure no in situ or invasive cancer also is present in the area. Doctors often recommend more frequent screening for breast cancer and strategies to reduce your breast cancer risk.

Follow-up tests to monitor for breast cancer
Your doctor may recommend you undergo follow-up tests to screen for breast cancer. This may increase the chance that breast cancer is detected early, when a cure is more likely. Talk about your breast cancer screening options with your doctor. Your options may include:

Self-exams of your breasts to develop breast familiarity and to detect any unusual breast changes
Clinical breast exams by your health care provider once or twice a year
Screening mammograms every year
Screening breast magnetic resonance imaging (MRI), depending on other risk factors, such as a strong family history or a genetic predisposition to breast cancer
Ways to reduce your risk of breast cancer
To reduce your risk of developing breast cancer, your doctor may recommend that you:

Take preventive medications. Treatment with a selective estrogen receptor modulator (SERM), such as tamoxifen or raloxifene (Evista), for five years may reduce the risk of breast cancer. These drugs work by blocking estrogen from binding to estrogen receptors in breast tissue. Estrogen is thought to fuel the growth of some breast cancers. Another option for certain women may be exemestane (Aromasin), which decreases production of estrogen in the body.
Avoid menopausal hormone therapy. Researchers have concluded that combination hormone therapy to treat symptoms of menopause — estrogen plus progestin — increases breast cancer risk in postmenopausal women. Many breast cancers depend on hormones for growth.
Participate in a clinical trial. Clinical trials test new treatments not yet available to the public at large that may prove helpful in reducing breast cancer risk associated with atypical hyperplasia. Ask your doctor if you're a candidate for any clinical trials.
Consider risk-reducing (prophylactic) mastectomy. For women at very high risk of breast cancer, risk-reducing mastectomy — surgery to remove one or both breasts — reduces the risk of developing breast cancer in the future. You might be considered at very high risk of breast cancer if you have a genetic mutation in one of the breast cancer genes or you have a very strong family history of breast cancer that suggests a likelihood of having such a genetic mutation.
But this surgery isn't right for everyone. Discuss with your doctor the risks, benefits and limitations of this risk-reducing surgery in light of your personal circumstances. If you have a strong family history of breast cancer, you might benefit from also meeting with a genetic counselor to evaluate your risk of carrying a genetic mutation and the role of genetic testing in your situation.

Coping and support

An atypical hyperplasia diagnosis can be stressful, since it increases your risk of breast cancer. Not knowing what the future holds may make you fearful for your health. With time, every woman develops her own way of coping with atypical hyperplasia and her increased risk of breast cancer. Until you find your way of coping, consider trying to:

Understand your individual risk of breast cancer. Breast cancer risk statistics can be overwhelming and frightening. Breast cancer risk statistics are developed by following thousands of women and can give you an idea of your prognosis, but the statistics can't tell you about your own risk of breast cancer. Ask your doctor to explain your individual risk of breast cancer. Once you understand your personal risk of breast cancer, you can feel more comfortable making decisions about your treatment.
Go to all of your follow-up appointments. If you've been diagnosed with atypical hyperplasia, your doctor may recommend more frequent breast cancer screening exams and tests. You may find yourself distracted with worry before each exam because you're afraid that your doctor will find breast cancer. Don't let your fear stop you from going to your appointments. Instead, accept that fear is normal and find ways to cope. Relax, write your feelings in a journal or spend time with a close friend who can lift your spirits.
Maintain your health. Make healthy lifestyle choices to keep yourself healthy. For instance, maintain a healthy weight, eat a healthy diet full of fruits and vegetables, get enough sleep so that you wake feeling rested, and limit the amount of alcohol you drink, if you choose to drink alcohol. You can't control whether or not you get breast cancer, but you can keep healthy so that you're well enough for breast cancer treatment, should you need it.
Talk with other women in your situation. Talk to other women who have been diagnosed with atypical hyperplasia. Ask your doctor about support groups in your community. Another option is online message boards. Breast cancer organizations, such as BreastCancer.org, offer message boards for women with a high risk of breast cancer to connect with each other.
References
DS01018 Oct. 1, 2011
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Atypical lobular hyperplasia(11/11/10) PBMX NS mastectomy on 5/26/2011 Dx 11/11/2010, Stage 0, 0/0 nodes
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Nov 4, 2011 02:41PM calilisa wrote:

thatsvanity - thank you for posting the ADH info.  I linger around these boards trying to learn more about my ADH diagnosis and you provided some great information.  I vacillate between thinking I am totally overreacting - ie taking tamoxifen for "just" ADH, compared to feeling that I'm underreacting, as in I should have a PBMX because it is just a matter of time.   I read that you have already had surgery and I just wanted to thank you for sticking around and posting information for others.  

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Nov 4, 2011 05:29PM - edited Nov 9, 2011 11:58AM by thatsvanity

Of course your welcome--chicken pants. Mayoclinic.com is amazing wealth of easy to find information on just about anything.

Atypical lobular hyperplasia(11/11/10) PBMX NS mastectomy on 5/26/2011 Dx 11/11/2010, Stage 0, 0/0 nodes
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Nov 8, 2011 10:34AM Chickenpants wrote:

Thanks for your postings ladies.  I haven't been on the boards for a bit.  My ADH, upon excisional biopsy Sept. 22nd, ended up as 2.5 mm of DCIS and incidental findings of 3 mm LCIS.  All clean margins for both lesions, no sign of invasive cancer and off for my MRI today.

Because of this condition, one never knows who will get a recurrence or worse, and who will not, so I'm often torn between doing nothing from this point on and taking my chances, or doing everything such as PBMX.  I have to have a referral to the cancer clinic for consultation.  It is unlikely I am a candidate for radiation as the lesion was so small, but I'm not a drug person either.  Would opt for more surgery before having to take a hormone therapy.  Quality of life I guess is a personal decision.

Anyhow, will keep you all posted.

Take care.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
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Nov 9, 2011 10:17AM Likeachickadee wrote:

Thanks for all the great information!  I just received a call last night with results from a Stereotactic biopsy (2) last Wednesday.  I was told I have atypical hyperplasia and an atypical lesion and am referred to a BS for wire guided excesional biopsy.  I have the consult with the BS on Friday afternoon.  I'm trying to not freak out, but it's really hard!

This journey started last Feb when my annual mammo was flagged due to the micro calcs.  Had DX mammos in March and Sept. and the Sept round showed a suspicious change in one of the clusters.  They missed that cluster at first on the core biopsy and wound up having to biopsy 2 areas about an inch and a half apart.  They both came back with atypical results....that's the part I find most upsetting - that it seems to be widespread in that particular area.  Also have very dense breasts and lots of micro-calc clusters in both breasts.

Thanks for all the great information here.

T/C x4 starting 3/19/12. BMX 2/7/12 w DIEP Flap reconstruction. Dense breasts with microcals, Right breast: ADH, ALH, LCIS, DCIS, IDC, multifocal. Dx 12/7/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/7/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 3/19/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/15/2012 Arimidex (anastrozole) Surgery 10/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 9, 2011 10:39AM momoschki wrote:

Well, I am literally spinning in a cloud of anxiety today:  first 6 month mammo after dx of ADH and reduction surgery is tomorrow.  Just want to get this overwith and get on with life.  Although I am well versed in the statistics of incidence of future BC for women with ADH (20-25%), I cannot find any info that talks about how often the ADH itself recurs after being excised.  While this is obviously not nearly as dire as a BC dx, I just hate to think of years and years of future excisional biopsies ahead.  My ADH lesion was tiny, but I am terrified of it (or something worse) coming back.  I realize that the population on these boards is skewed in the direction of women who have had continuing problems (or why would they be hanging out here?), but wonder if there are any of you who got the ADH dx a number of years ago and have had clean mammos, US, and MRI's after your excisions?

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Nov 9, 2011 11:41AM Sherryc wrote:

momoschki it took 14 years from first ADH lumpectomy to getting IDC.  Had clean mammo's all that time, but I know that at least the year before was a false reading because I have dense breast tissue and IDC 1.6cm did not show on mamo. I just had another biopsy and that did not show on mammo either.  I don't know if you have dense breast tissue or not.

Sherry--lump left breast 9/30/10. No chemo, Zometa-6tx over 3 years.Oncotype score 23 with 14% recurrence rate. 34 rads. No family history, BRCA neg. 48 years old @ diagn. BMX/TE 3/26/2012, Exchange surgery 8/21/12, Revision surgery 11/27/12 Surgery 5/12/1997 Lumpectomy: Left Dx 9/27/2010, IDC, Left, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 12/3/2010 Hormonal Therapy 2/7/2011 Surgery 11/3/2011 Lumpectomy: Right Surgery 3/26/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Surgery 11/27/2012 Reconstruction (left); Reconstruction (right)
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Nov 9, 2011 11:51AM momoschki wrote:

Sherry, 

"Moderately dense" tissue, altho a mammogram did pick up a calcification cluster that led to the ADH dx.

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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Nov 9, 2011 01:49PM BritValarie wrote:

Hello Ladies,

This thread is very interesting!

I have a family history of breast cancer.  My maternal grandmother died of BC at 47, my mother died of BC at 38...and her sister, my aunt died at 41.

I have had several biopsies and surgeries all resulting in a diagnosis of ADH, ALH and LCIS.  I tested negative for genetic testing.  Even so, the stress of going through this every 6 months was just too much.  I really did not want to take Tamoxifen, so I am scheduled for a PBM with immediate reconstruction on December 7th.

I know this is a very personal decision, but for me I did not want to go on wasting time out of my life constantly worrying when something worse might show up.  I was 11 when my mother passed away.  One day when we we home alone, she showed me where she had her mastectomy.  Not to scare me, but to make me promise that I would do everything not to go through what she went through.  I guess I'm keeping that promise with the upcoming surgery.

I have VERY cystic and dense breasts, so I feel a lot more comfortable doing this surgery

Take care,

Valarie

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Nov 9, 2011 02:03PM Sherryc wrote:

Valarie I don't blame you.  I had ADH then IDC.  Had a lump and rads and am now going through with BMX with reconstruction.  After lump and rads they then tell me I have to be scanned every 6 months and one year out found another lump and had to have another lumpectomy.  It was B9 but lot's of other stuff going on in the other breast.  I feel the same as you.  I want my life back and i just don't see every 6 months scans and worry being a very good quality of life.  Good luck with your surgery.

Sherry--lump left breast 9/30/10. No chemo, Zometa-6tx over 3 years.Oncotype score 23 with 14% recurrence rate. 34 rads. No family history, BRCA neg. 48 years old @ diagn. BMX/TE 3/26/2012, Exchange surgery 8/21/12, Revision surgery 11/27/12 Surgery 5/12/1997 Lumpectomy: Left Dx 9/27/2010, IDC, Left, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 12/3/2010 Hormonal Therapy 2/7/2011 Surgery 11/3/2011 Lumpectomy: Right Surgery 3/26/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Surgery 11/27/2012 Reconstruction (left); Reconstruction (right)
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Nov 9, 2011 03:04PM BritValarie wrote:

Thank you, Sherry!

When is your surgery?

Good luck!

Valarie

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Nov 9, 2011 03:29PM - edited Nov 9, 2011 03:30PM by Sherryc

Valerie---I have done radiation and have lots of damage so I cannot do implants.  I will be having diep reconstruction and I have to gain weight so right now I am planning on March 2012 as that works better with my work schedule.  I am going to get another opinion regarding the implants and I have that appt in 3 weeks even though I really do like my first PS.  But through this journey I have come to value 2nd opinions.  When are you planning yours?

Sherry--lump left breast 9/30/10. No chemo, Zometa-6tx over 3 years.Oncotype score 23 with 14% recurrence rate. 34 rads. No family history, BRCA neg. 48 years old @ diagn. BMX/TE 3/26/2012, Exchange surgery 8/21/12, Revision surgery 11/27/12 Surgery 5/12/1997 Lumpectomy: Left Dx 9/27/2010, IDC, Left, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 12/3/2010 Hormonal Therapy 2/7/2011 Surgery 11/3/2011 Lumpectomy: Right Surgery 3/26/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Surgery 11/27/2012 Reconstruction (left); Reconstruction (right)
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Nov 9, 2011 09:12PM Cherrie wrote:

I had IDC 9 yrs. ago with 34 rounds of rads. on left side.  Many aspirations, biopsies, MRI's later..............I had an excisional biopsy 4 wks. ago and was diagnosed with ADH.  I am now considering a BMX to bring my odds down and am in that shell shocked stage.  Many of you have given me lots of help as I decide btw. a LD flap, DIEP flap, or implants with alloderm sling.  This has been harder than my original diagnosis.  I hadn't even heard of ADH until Oct. 20.  My sister had BC so I have a family history.  This thread has helped for me to see that many people have been through this and have had similar struggles.  Thank you.  Praying to get stronger every day. 

Dx 10/4/2002, IDC, Left, 1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 10/21/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 11/14/2002 Breast Hormonal Therapy 1/10/2003 Surgery 10/11/2011 Lumpectomy: Right Surgery 11/12/2012 Prophylactic mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 10, 2011 04:23PM momoschki wrote:

Just wanted to post a follow-up today after my first post-surgical mammo:  everything came back fine!  What a huge relief... in fact, this was the first time in a mammogram history that I was NOT called back for more shots.  Consult with breast surgeon afterwards was pretty unremarkable-- she examined me and said she would see me in 6 months after an US.  Every year I will have a mammo, and then 6 months later an US alternating with an MRI.  This  will go on for 5 years, and then, if everything is still good, I can go back to an annual schedule.

 There was, however, one thing that did semi-freak me out that I had not been aware of before.  BS pointed out that my dx was "borderline ADH DCIS", which I had not been aware of (thought we were just dealing with ADH.)  No radiation or other tx was recommended to me, which leads me to wonder if I am undertreated?  No tamox or evista-- all doctors consulted said I would yield very modest benefit. 

ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left

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