Focal Atypical Duct Hyperplasia

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    I was diagnosed with LCIS in Sept 2003; given a 5 year risk  of 4.6% and a lifetime risk of 36.6% (but I think it might be as high as 50% due to family history; oncologist admitted he really didn't know exactly and it was just an estimate). I decided to go with the tamoxifen (which I tolerated well and just finished my 5 years in October) and close monitoring. I do digital mammos alternating every 6 months with MRIs and breast exams on the opposite 6 month schedule, so I'm "seen" essentially by some method every 3 months. Fortunately, I haven't had any further problems. I'm now taking Evista for further prevention.

    Anne

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  • KarenT17
    KarenT17 Member Posts: 46
    edited April 2009

    Dear Sammy21,

    Thank you for telling me about your situation.  I haven't had too many people cheering for the Tamoxifen so that's why my decision has not been easy.  I am interested to know if you experienced any bad side effects on Tamoxifen and if so what?  When you say you "had" dense breasts do you mean that by taking the Tx it significatly reduced your breast density?  I appreciate your advice and hope that I'm making the right decision as well.  

    Thanks again, KarenT17

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  • bwes1234
    bwes1234 Member Posts: 9
    edited April 2009

    Hi Karen,

    I am in your shoes. I had the same diagnosis last August 2008 after having a lumpectomy for suspicious microcalcifications. The radiologist was unable to get them through stereotactic biopsy so I had the lumpectomy. Turns out, I had the ADH and was told I didn't really need to do anything (by my surgeon) and just to go for a diagnostic mammogram in one year. Truthfully, I didn't think much more of it although I was told I was at 6-8 times increased risk of developing breast cancer.

    I decided to have my mammogram last week (8 months since diagnosis) just to be safe. The radiologists found suspicious microcalcifications in my OTHER breast. I had a biopsy 2 days ago and will get results this afternoon. Now, I am panicking and feel I too must explore this condition and possible treatments. I too am not too crazy about taking Tamoxifen. I would love to correspond with you as we try to figure this out. Thanks!  Anna

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  • kle
    kle Member Posts: 317
    edited April 2009

    Hi Karen,

    Here is what I am doing.    I had a single mastectomy for DCIS.  They put me on Tamoxifen, since I am high risk for the other breast.   At my first mammogram post mx, they found ADH. 

      I also was not happy about Tamoxifen, the side effects...etc...but after the ADH findings I feel better that I am doing what I can so that the ADH does not turn into anything more.  As I say, my pill goes down a little easier now,  knowing about the ADH.

    For me the Tamoxifen has some manageable side effects, like the night sweats and hot flashes. If for you the side effects are to much, you can always decide to stop taking the pill.  But maybe you will decide it is worth a try.

    kle

         

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    Hi bwes1234-

    Before you get freaked out about the 6-8 times increased risk of developing breast cancer - know that is NOT NOT NOT 6-8 times ~13% (the lifetime risk of the average woman in the US), but 6-8 times the risk of the average woman without any significant risk factors.   That's a very different number.  I've seen a variety of different numbers for this, usually ranging about 3-5%.  

    Actually, I've not seen 6-8 times as a factor for ADH.  For example in this study, it gives ADH an odds ratio of 3.1 rather than 6-8. http://www.ncbi.nlm.nih.gov/pubmed/17154175

    This site quotes 4-5x, with up to 10x if there is a family history. http://www.pathologyoutlines.com/breast.html#adh

    But, in any event, know all these statistics are very soft figures if you are looking to make decisions about YOUR chance of getting breast cancer.

    "Mayo Clinic researchers tested the Gail model in 331 women with atypia who had benign breast biopsies at Mayo Clinic between 1967 and 1991. Of these women, 58 developed cancer during an average of 13.7 years of follow-up. In contrast, the model predicted that 34.9 women would develop breast cancer in that period.

    Using these and other data, researchers also calculated the model's performance for individuals using the concordance statistic (c-statistic), which reflects how closely the actual timing of breast cancer events aligned with model predictions. A c-statistic of 0.5 is observed if the predictions are no better than random chance; a c-statistic of 1.0 is observed if the predictions are perfectly concordant with the actual outcomes. In this study, the c-statistic was 0.5, reflecting that the Gail model worked no better than a coin flip in predicting which of the women with atypia would develop invasive breast cancer."  (emphasis mine)http://www.news-medical.net/?id=42503

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  • bwes1234
    bwes1234 Member Posts: 9
    edited April 2009

    Thanks so much, Leaf! You have a wealth of information and it's so important to

    deal with the facts. I really appreciate it. It's funny- I never researched anything after

    my diagnosis since my surgeon did not appear very concerned. It was only after this

    mammo last week that revealed these microcalcifications again that I started getting

    concerned. I think just waiting for the results (today) makes you feel like you want to do something which led me to this discussion board. Many thanks!

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  • KarenT17
    KarenT17 Member Posts: 46
    edited April 2009

    Anna,

    I'm glad you found me.  I never would have guessed in a million years at 42 I would be on a cancer website corresponding with other woman at risk or diagnosed with breast cancer.  I always felt so healthy doing everything I could to do the right thing, eat right, exercise, don't drink or smoke.  You see my mother had kidney disease and received a donor kidney 4 years. I thought if I did the right thing, maybe I could somehow escape getting sick.  Guess I was wrong.  I was so suprised when they said they found something suspicious and it needed to come out.  This was my first operation (besides wisdom teeth) and I am not fond of hospitals, needles or doctors.  When I was on the operating table they asked me if I had any questions, I said "Please just let me wake-up"!  I think no matter what, you should seek a second opinion as I did.  They both told me I should at least try the Tamoxifen and if it was not working to stop taking it.  I can't help but feeling like a guinea pig somehow since I don't think they really know enough about this drug.  I said to the last oncologist, "you know with all the money that is put into research-all the millions of dollars, this is the best they can come up with"?  I think she was suprised at my candidness but you know what, I think it's ridicious that there isn't a better cure for breast cancer or to prevent it in 2009!  I better stop now, I feel myself getting carried away, hope I didn't scare you??  I live in Long Island New York, where are you?  Let me know how you make out...

    Karent17

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  • KarenT17
    KarenT17 Member Posts: 46
    edited April 2009

    KLE

    Thanks for your input, I'm glad that you were able to manage the side effects.  Did you have any concerns about the possible blood clots or endrimetrial cancer?  Those were the ones that freaked me out.  I was told however, in my own situation that it would not be a factor, how do they know for sure I can't say.  No one has mentioned any possible problems with my other breast, I am going for an MRI at the end of the month to make sure there is nothing else going on.  I will make sure to post my results when available.  I wish you luck in the future and hope you don't have any more negative diagnosis.

    Karent17

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  • kle
    kle Member Posts: 317
    edited April 2009

    KarenT17,

    I am worried about all the side effects, but trying not to dwell on them, since I'm hoping the benefits will outweigh the negatives (my oncologist says they do) .   I try not to worry about every ache or pain I have, because you can't live with that stress either.  It takes a bit to get thru that worry , I've been on tamoxifen  for 6 months.  

    I was high risk for my other breast due, to a previous cancer diagnosis, that is why they suggested I take it.   

    Keep asking the questions, as you are, to figure out what is right for you.   

    kle

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    bwes--actually, ADH is 4 to 5 x the base risk (of 4 to 5%)==about 20 to 25%. It's considered a "moderate risk" unless you also have family history, then it is considered "high risk". The recommendation is generally to be vigilant with breast exams and mammos if ADH alone, sometimes tamoxifen is added if family history is involved.

    anne

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  • emanresu
    emanresu Member Posts: 60
    edited April 2009

    In 1992 had a lumpectomy in right breast. In 1994 left breast biopsy, focal atypical hyperplasia. Same breast 2003 breast cancer. My recommendation is do what protects you from getting breast cancer. You don't want to go through that. MG

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  • bwes1234
    bwes1234 Member Posts: 9
    edited April 2009

    Hi Karen,

    Sorry I am just now replying. I went for my results and the biopsy showed Benign so we were

    ecstatic. The radiologist did suggest that I may want to get a MRI simply because I have the

    fibrocystic breast/ proliferative breast disease. Not sure about doing this or at least I may wait a couple of months to recover from this last scare. I live in SC so a little ways from NY:)
    Hope you are doing well! I think of all of the ladies on this site and my heart is with you all!

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  • bwes1234
    bwes1234 Member Posts: 9
    edited April 2009

    Hi emanresum-

    I am just curious after reading your post. DId you have a lumpectomy after your 1994 biopsy revealed the focal atypical hyperplasia? Sorry you have been through so much!

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  • emanresu
    emanresu Member Posts: 60
    edited May 2009
    bwes1234 wrote:

    Hi emanresum-

    I am just curious after reading your post. DId you have a lumpectomy after your 1994 biopsy revealed the focal atypical hyperplasia?

    HI, there

    I did not have the lumpectomy done at that time.

     Had I known better, I would have rethought a lot of stuff.

     I developed cancer in that breast with the hyperplasia, in 2003. I had a lumpectomy, chemo and radiation.

    But in the back of mind and a little piece of information that I had found, which I kept, and still have it, gave me a sneaking suspicion after all those years that I would get it again. Because in the little article and it wasn't even an article it was a list, I just kind of knew. Thanks. mg

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  • KatieT
    KatieT Member Posts: 35
    edited May 2009

    Thanks for all the comments.  My surgeon called this week w/ a referral to an oncologist.  (stereo and surgical biopsies were ADH.)

    Given that my mom is having health issues and I'm down to the last month or so of school (with exams looming!), I decided to wait until school is out to see the oncologist.  There is no way I can digest what he would have to say right now.  Not on top of all my mom's medical stuff.  It would be overload for sure.

    I have no idea of this doc favors tamox or not, but I'll have to wait until June to find out!

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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

    KatieT,

    I'm glad your results were negative, I'm happy for you.  I'm going for an MRI on Wednesday the 6th just to make sure there is nothing else going on.  I'm also hoping that they find nothing, I don't want to go to another doctor for a while.  On top of this, I went for my yearly skin check and they took a mole off for testing too!  I just can't get a break lately.  Are you still deciding weather or not to seek another opinion to possibly take Tamoxifen or will you wait on that??  I will let everyone know how my MRI goes, not happy about doing this as it's the closed one not the open MRI.

    Karen

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  • KatieT
    KatieT Member Posts: 35
    edited May 2009

    Ha-ha!  I have lots of moles and will be seeing a derm, also when school is out.  I've had moles removed in the past and all were OK.

    Not sure if I'll seek a second opinion on the tamox.  It's just to much to contemplate right now. 

    My mom had knee replacement on April 16th (a week after my surgical biopsy), has been readmitted twice - a- fib, infectious diarrhea - and is currently still in the hospital.  Once she's out, we have to line up rehab.  She lives w/ us, so much of the responsibility falls to me.  I have brothers in the area, but being the only daughter . . . Wink

    I teach middle school, which I love, so between work and mom, it's about all I can manage until school is out.  Then I'll see the oncologist, dermatologist, have my pap redone, and my 3 month mammo.  It's always something . . .

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  • Kimber
    Kimber Member Posts: 384
    edited May 2009

    KarenT17,

    I was dead set against tamoxifen in the beginning as well.  I was ready to have BPM because I am at very high risk - strong family history (mother, sister at a young age, aunt) and then my diagnosis of LCIS, which was multi-focal and required a second lumpectomy.  I have been on tamox for almost 15 months and have done amazingly well.  The only side effect I have is no period.  I have no night sweats, no hot flashes or anything.  I'll be 45 tomorrow and I was pre-menopausal.  My breasts are a lot less dense and I do not have the monthly changes that I had before with a period - my boobs would get huge and sore and felt like a huge bag of marbles. It is definitely worth a try.  Good luck with your MRI.  I am constantly monitored with MRIs and mammos, I know how stressful it is.  Let us know how it goes.  ~Kimber

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  • Kimber
    Kimber Member Posts: 384
    edited May 2009
    I just posted on the hormonal therapy thread....an apparent side effect is reduced vision.  I have noticed that I can no longer see anything without readers....  Side effect or old age????  Undecided
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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

    Hi Again Everyone,

    I haven't been on lately so I just thought I'd give you all an update on my situation.  I had an MRI suggested by the oncologist about a week and a half ago.  It seems now they see something on the left breast that they would like to biopsy!  So this Tuesday right after Memorial Day at 9:30 I will have an MRI guided biopsy to see what the hell is going on now.  I went for my check up at the surgeon today and discussed it with him.  He read the report and said that MRI's are notorious for picking up every little thing and not to worry.  Who me worry, why should I worry??  I just had surgery two months ago and now I have to do a biopsy, why should I worry?  What a nightmare, my stomach is in knots and it's all I can think about. I don't think I can do this.  I mean are they going to see something every 6 months that they want to biospy?  Soon you'll be able to play tic tack toe from all the cuts and marks this is leaving behind.  What a raw deal this is to say the least!  I was prescribed the Tamoxifen in April but haven't taken it yet.  I'm waiting to see the outcome of this before I venture into something else.  I will keep you posted on what the results are, please pray for me I can use all the good thoughts I can get.  And for all of those who are going through much more than me, I will hold good thoughts for all of you too.  

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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

    Hi,

    Just to let you know, my mole results came back negative.  They charged me $125 to take half a mole off, you think they could of taken the whole thing for $125 bucks!  Anyway I guess I can't complain it could have been bad news right?  Anyway, sorry to hear about your mother, I hope she gets well and then you can concentrate on you more.  Don't wait to get a second opinion on the Tx.  Every doctor I talk to says take it and see what happens, if you experience bad effects stop taking it.  They make it sound simple but I guess what other alternatives are there?  It's like being a sitting duck just waiting for someone to come by and shoot you!  Just for your FYI, I work at a private college on Long Island, Five Towns College.  I'm in charge of the Advertising for the college and assit the adjoining Performing Arts Center as well.  I love it and very thankful that they are very understanding and allow me to come and go to doctors appointments when I need to.  I'm just thankful for my work and my supportive husband.  My daughter always says I'm going to be okay, I hope she's right...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    Good luck tomorrow Karen with your biopsy!

    I will be praying and thinking of you!

    Cathy

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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

    Hi to everyone who follows my progress,

    I had my biopsy yesterday and it wasn't what I expected!  I thought that since I went through surgery 2 months ago it couldn't be as bad as that.  Boy was I wrong.  The biopsy was horrible, the MRI I can do no problem but the needles they stuck in by breast were so bad.  After the two hours of torture that was inflicted on me they told me I had to have a mamogram!  My breast wouldn't stop bleeding but yet they proceeded to crush my breast after the biospy for the mamogram.  Why I don't know since the spot they detected wasn't picked up by a mamogram but by the MRI I had two weeks ago.  When I left I just broke down in my husbands arms crying.  I don't know how much this was suppose to hurt, but I'd rather of had surgery again over this, that's how bad this experience was.  Anyway today I am feeling better and praying to god that I don't get bad results. I can't do this again, I just can't.  I'm not looking for sympathy, I just need an outlet because I don't want to constantly discuss this with my husband.  I don't want this to be the center of our marriage, he is a great man and very supportive but you can just listen to someone complain just so much.  I am usually the optomist in our marraige telling him to look on the bright side when things go wrong.  I want to stay positive but I can't stick my head in the sand, I have to be realistic with myself so I am trying to prepare myself for both the good and the bad.  I was told I will get the results by Friday, so until then I will be sick to my stomach.  Until then, I will try to hold good thoughts for myself and ofcourse, I wish everyone else the best in their own struggle.

    Karen

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  • KatieT
    KatieT Member Posts: 35
    edited May 2009

    I'm sorry it was so awful.  Take care of yourself and let us know when you get results. 

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  • Peggio
    Peggio Member Posts: 274
    edited May 2009

    KarenT17 ~ I had the same type of experience with the biopsy that you had.  It was so awful - I feel your pain!  I just wanted to let you know that other women have felt the same way.  I told my breast surgeon I would never do it again.  I would only be willing to have surgical biopsies.  She said it's not a common reaction but it does happen to some women.  I've had friends who have said " Oh you mean that needle thing - it didn't hurt" and it's hard to believe.

    Anyway,  you will be in my thoughts and prayers.  I hope you get good results

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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

    Hi All,

    I received a call today from my oncologist saying my biopsy results were negative.  Great!  But they do suggest that I do surgery to take it out anyway.  What?  Why would I do that?  He asked that I come to see him today to discuss my options.  When I came to his office I told him I don't want to go down that road of having biopsy after biopsy simply because they see "something" on an MRI.  I mean where will it end, I could have a biopsy every year, who knows.  Maybe nothing will ever pop up again right?  Well I don't think that's the case.  I already have ADH in the other breast so I need to be realistic.  Afterall, I'm only 42 so chances are I'm going to have this happen again.  I'm thinking about having a double mastectomy and reconstruction at the same time.  I also visited the radiologist who did the wires on my first surgery since she was in the same builiding.  She suggests I speak with the surgeon and a plastic surgeon to get all of the information.  I told her that I will do my homework before I do anything.  I am not in a hurry to make this kind of decision and I welcome all of those who have had a double mastectomy with reconstruction to contact me.  Please help me so I can make this decision, pros and cons. This is a big surgery and I want to confident I make the right decision. 

    Thanks, KarenT17

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  • Peggio
    Peggio Member Posts: 274
    edited May 2009

    Karen ~ I sent you a PM

    Peg

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  • taraleec
    taraleec Member Posts: 236
    edited January 2010

    Hi KarenT17, I too am in the midst of trying to make a decision on having a bilateral mastectomy and reconstruction.  It's very difficult.  My Oncologist, gynecologist and surgeon recommend mastectomy, due to my having LCIS, Atypical lobular hyperplasia, atypical ductal hyperplasia, (and I also had radial scar, complex sclerosing adenosis, apocrine metaplasia and columnar cell change.) Good luck to you.

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  • KarenT17
    KarenT17 Member Posts: 46
    edited May 2009

     Taralee,

    I'm going to see my surgeon and a plastic surgeon in the next two weeks.  It's funny, the one thing I  said I would NEVER do was get implants and now I might have to.  I told my brother what I was planning on doing and he thought I was crazy but people just don't understand.  I mean I could never get another lump but who's to know.  I don't want to be sick to my stomach everytime I get a mamogram or MRI.  And waiting for the results is torture.  So many things run through my head, cancer, surgery, drugs, etc it's just a nightmare waiting to find out if you have something wrong with you.  I mean this papiloma is beign but they still say to take it out.  How many times will this go on in the future?  I do have several options right now, do nothing and see if the area gets bigger.  Do the surgery and just keep getting monitored for future problems.  I could also take the Taxoxifen but that's not without side effects as well.  I say there really is no happy ending here unless I wake up and this was all a sick joke!  Please keep me posted on what you decide to do and any information you can pass along and I will do the same.  I'm glad I have this site to help me express myself to people who are also going through the same thing.  By the way I have ADH in the right breast but that wasn't found in the left with this recent biopsy.

    KarenT17

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  • KarenT17
    KarenT17 Member Posts: 46
    edited June 2009

    Taralee,

    I was wondering if you had the BRACA test, my oncologist suggested I do it.  I don't know if I want to, I mean if I test positive that would really upset me.  On the other hand, that would force my hand to make the decision to go ahead with a double mastectomy.  Did you do it, just curious if they suggested it.  Also, do you know if your insurance would pay for the operation and reconstruction?  I don't know if my will cover both, I have to look into that as well.

    KarenT17

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