Focal Atypical Duct Hyperplasia

hrf

My understanding is that if insurance pays for mx, they are required, by law, to pay for reconstruction. You may want to check out the FORCE website as there is a lot of information there about reconstruction. Good luck with your decision making

KarenT17

Thank you so much for the information, I will check it out.  

KarenT17

leaf

Unless you are BRCA positive, or at least have a strong family history of breast cancer or ovarian cancer in first degree relatives (mother, father, sister, brother, daughter, son), I think many insurance companies will hesitate about covering mastectomies for ADH.  My bs won't consider doing it, and I have LCIS. But for other LCIS patients, their bs has suggested it.

KarenT17

Leaf,

I just spoke with a genetic counselor on the phone and she too asked me about my family history.  I only have one relative, my father's mother who deleloped bc in her 60's and I know of no one with ovarian cancer.  I am going to talk with her next week, I got an appointment right before my visit to my surgeon.  I've never been to a genetic counselor so it should be interesting.  I hope to god I don't have the gene because that would mean I could have passed it to my daughter, right?  I will ask the counselor that as well.  If I do the test, I will submit it to my insurance company for approval prior so I know where I stand.  Thank you for the info and I welcome all the advice I can get.

karen9516

I was negative for BRCA 1 and 2 and my insurance paid for the whole thing. I only had ALH, a benign Phyllodes tumor and very cystic breasts. I also had another benign fibroadenoma removed. I didn't have a strong family history, but that was Humana and I din't know about other companies.

Desertgal

Hi Karen,

I had atypical ductal hyperplasia on one side and have been taking tamoxifen for about 2 1/2 months. (Family history: both grandmothers had BC.) So far I have had absolutely NO side effects from the tamoxifen. (My oncologist said the side effect she sees most often is hot flashes.) So for me, it's worked out very well. I just wanted to weigh in on that; I know that tamoxifen can have side effects, but not everyone gets them.

KarenT17

How did you know you had ADH, did you have surgery or a biopsy?  I have ADH on the right and just found a beign papiloma on the left which after a biopsy they want to take out surgically.  I'm not happy about it to say the least and that is exactly what I'm afraid of.  I don't want to get biopsy after biopsy because they question every little thing from an MRI.  My surgeon says it's all about liability now a days, they must remove and test everything they see.  I think my oncologist is concerned about my state of mind because he called the surgeon and the surgeon called me last night at home!  A doctor's never called me at night to "talk" before.  He thinks that I should take out the papiloma and take the Tx to see if it will work before I go to extreme measures.  He says a mastectomy is a big operation and that I should try medication before surgery.  Easy for him to say, does he really think any woman wants to remove her breasts!  I'm just looking down the road, I mean I'm only 42 and I don't want this to be a recurring issue throughout my life.  I don't want to worry all the time waiting for mamogram and MRI results to see if something else appears.  I will of course weigh all of my options before I rush into anything and talk to as many people I can so I can make the best decision possible for me and my family.  I do appreciate the positive info on Tx, at least there are people who are doing well on it.  

KarenT17

Hi all,

Just wanted to keep you up to date if you are interested in my progress.  I had a biopsy over two weeks ago now and the results are a beign pappiloma with radial scar.  I saw the surgeon yesterday and of course they want to remove it.  It will have to wait a while before the biopsy heals so maybe a month from now I will do this all over again.  They will do the wire localization but this time I have a marker so they know where to go and maybe it will only be one wire instead of 3 like the last time.  Anyway, they are re-testing the slides just to be on the safe side before they do the surgery.  The surgeon suggests I don't do anything drastic yet (mastectomy, etc).  He thinks I should remove this and take the Tamoxifen and see what happens.  I think that I will see a plastic surgeon in the meantime to also get another opinion.  I mean I don't want to keep having biopsy after biopsy and additional surgeries.  Maybe this won't happen anymore or maybe it will.  Who's to know, I just want to know what my options are.  If anyone has had reconstructive surgery and you were happy with your results and your located on Long Island please contact me. I am looking for a good doctor, one who does the nipple sparring as well.  Please send me any advice or questions I should ask of a reconstructive/plastic surgeon.  I welcome all input.

KarenT17

Just wanted to update my info in case anyone is wondering what has happened lately.  Today I went to see a Genetic Counselor at the suggestion of my oncologist.  She was great, we spoke for about a half an hour going over family history and my situation.  She didn't think that with my family history that I would test positive for the BRCA 1 or 2 gene but I opted to be tested to be on the safe side.  Now I just pray that my insurance company will approve it because at $3,200, I can't afford to pay for it myself.  Anyway, I'm hoping that this is one more thing I can cross off my list and at least have some piece of mind if it comes back negative.  I also asked her opinion on taking Tamoxifen and she didn't seem too keen on it.  She says that because they don't know what's causing my problem, how do they know that Tx will be the solution.  Maybe my estrogen is not the problem she says.  I myself don't want to take it either but I am running out of options.  I did discuss with her having my breast tissue removed and replaced with implants.  I figure since I've seen every other doctor, I might as well get a reconstructive surgeons' opinion. Although it might seem a bit of an extreme measure to take, I'm still going to explore it as an option.  The only condition is that I must keep my nipples, that's not an option.  Anyway, the Genetic Counselor also said that Tx has serious side effects that should be taken into account.  Lastly I told her that my surgeon wants to now remove this latest papilloma.  She then suggested I get a second opinion to see if I can just monitor it or if it has to come out.  So in two weeks if all goes well I will have the results of the BRCA test, seek a second opinion on the next surgery and confirmation on retesting my slides to confirm the latest area in question is benign.  If anyone has any input or information for me, please let me know as I am open to all advice.

leaf

Before you sign 'on the dotted line' for extensive surgery, if that is what you choose, you may want to check on your insurance coverage.  Most of us do not need more unexpected expenses in this economy.

These are difficult decisions.  I'm glad you're getting multiple opinions.    Best wishes to you.

karen9516

KarenT17 My geneticist said that only 5%of breast cancers are from the known gene BRCA1 and 2 and 25% are probably from anknown gene and 70% are sporadic. If you are negative that doesn't mean you are out of the woods, If you are positive you know there is are very large chance you will get cancer in a lifetime in your breast and a slightly smaller chance you will get ovarian cancer. Tamoxifen has only been used for prevention for 6 years and it does have allot of side effects. Keep those things in mind when making your decision. Whatever you decide you need to feel good about it.

ladydocsings

Hi Karen,

Similar situation...abnl mam (microcalcs) 7/08. Rad said get stereo on this "one" lesion in LB.  Saw BS... she found another in LB and addn'l in RB.  She asked a 2nd Rad, then i had 2 stereos done...one on each breast.  one was "usual hyperplasia (the first suspicious one in LB), & the one on the RB was ADH.  Slides sent to Vanderbilt for over-read... LB read as ALH there and RB as ADH.  But before i had the second reading, i was concerned about the other microcalcs on the LB... she concurred since it looked very similar to the RB... so THAT was Bx by stereo (yippee! - I told the techs i purchased the FASTpass because i wanted to "ride" again, LOL) and also came back ADH.  MRI negative.  Three Excisional biopsies - no cancer.  But that's THREE ADH (excisonal biopsies showed ADH in all three spots).  BS said i was very high risk.  I found research out of May Clinic (Stratification of Breast Cancer Risk in Women with Atypia: a Mayo Cohort Study... J Clin Oncol 25:2671-2677 July 1 2007) and quoted in a medical search engine that my husband subscribes to (Up-to-Date) that stated "multifocal lesions (3 or more foci), especially multifocal lesions associated with histologic calcifications, increase the risk [of developing invasive breast cancer] ten-fold (>50% risk at 20 years). And family history had no bearing on changing the risk with these women. I'm sorry i couldn't find it again to include a link, i just have a print of the article.

Anyway, i was offered surveillance, surveillance plus tamoxifen, or BPM.  Since Tamoxifen decreases the risk by 50%, that would drop me to only 25% which still put me at moderately high risk.  Also the research suggests as pointed out (either by Beesie or leaf) that it is inconsistent in ADH.  And, after seeing so many women comment on having BBD (Benign breast disease) who were followed and then developed DCIS or IDC, I decided I personally wanted to reduce my risk the best way for me and that was for the BPM...I am now almost 6 weeks post exchange and very happy i made the decision that i did, especially since on the mastectomy specimen, the right breast (post excisioal biopsy) still had a fair amount of ADH that i could just see growing and progressing to cancer in a site previously biopsied which would mean distortion on mams and potentially difficult diagnosis in the future.

Of course, my surveillance isn't over.  Since i opted for silicone implants i am part of the FDA study and will get routing MRI screening per their protocols.  Also my BS said that i still have to have biannual clinician breast exam because whatever breast tissue is left behind is still high risk. Sigh.  But at least i feel i can breathe easier.

geysermom

Karen T17,

I had an excisional biopsy which showed ADH 12/07 and was told that nothing further needed to be done.  I was never referred to an oncologist and Tamoxifen was never mentioned.  My mammo a year later resulted in 6 core needle biopsies being recommended.  Since I felt that these would lead to the need for several excisional biopsies, I opted for PBM and have no regrets. 

I don't know in hindsight if it was better to think that everything was ok and go and live my life for another year.  I kind of wish I had been referred to an onc and been offered Tamoxifen.  I guess I will never know if it would have helped.

I have extrememly dense breast tissue which have always been difficult to image on mammos.  I started having biopsies at age 31.  My only family history is my father's mother who had breast cancer several times in her 70s and 80s.

I agree with Peggio, not making a decision is making a decision of sorts.

Take care,

Julie

KarenT17

Julie,

I can't believe that you were told to do nothing when they found the ADH.  Didn't you question what it was or what you should do about it?  Did you research it at all?  So you didn't do the needle biopsies?  I'm still new at all these terms, what is PBM?  Can you explain what you did a little more?  Right now I'm doing everything I possibly can to make the most informed decision.  I'm waiting back on results from the BRACA test I took.  I haven't heard anything so I'm assuming my insurance company approved the test.  Now I wait on the results and I will go from there.  I'm also waiting on the retesting of my slides from my biopsy which was benign and I hope they find nothing more!  When I spoke to the Genetic Counselor she said how can they tell you to take Tamoxifen if they don't know what's causing your problem.  She made sure that I understand that Tamoxifen is a serious medication and that I understand the side effects.  I'm really running out of options.  I spoke to a reconstructive surgeon and was told that they are out of network.  Meaning if I use with them I pay upfront and then I will have to try to recoop money from my insurance company.  This will not work as my insurance company will not pay money for an out of network doctor.  I am going to try another doctor who is in my plan and discuss my situation with them.  I am also still waiting for my biopsy to heal.  It's been a month today in fact and I'm still bruised up with a hemotoma that is slowly reducing in size.  This has been difficult for me these last few months, I stress myself out very easily just thinking about what is to come or what decisions I have to make.  I'm glad that I've found this site and can ask questions and get feedback from others who have been down this road.  I'm also sad at what I read and feel very upset for others struggling with worse diagnosis than mine.  I would appreciate if you provide me with more info, you can send me a personal reply if necessary.  I look forward to more input from anyone who can help me. 

KarenT17

HelloFromCT

Hi Karen,

I've been through something very similar to you.  I had a mammo beginning of April that showed calcifications.  I had a re-screening, then was scheduled for a stereo biopsy.  The results of this showed ADH.  Then I had an MRI screening which was okay, then a surgical biopsy in May to make sure there was nothing else going on.  The surgical biopsy showed ADH.  The path report said margins unremarkable.  (I didn't get a detailed report as many seem to get.) 

I met with the onc a couple of weeks later and he scared the heck out of me.  He put my dx along with my risk factors into a computer and came back with my risk which was around 28-30%.  He was really pushing the tamoxifen.  He brushed off all of the possible side-effects and said if I were his wife or daughter, he would want me to take it.  Still, I was not convinced.  At that point I was afraid to take it, but afraid not to take it too.  So I told him I had to think about it and I made another appointment for two weeks later.  During that two weeks I did a lot of reading about tamox and also the accounts of many women on here who had similar dx and how they dealt with their situations. 

Eventually I came to the place where I decided I want to have a PBM (prophylactic bilateral mastectomy).  As you said, what women wants her breasts removed?  None!  But I also know myself and I would never have a moment's peace if I took tamox.  I don't like the potential fatal side effects, but I also don't like the quality of life side effects.  And even with the tamox, I would be worried that the ADH would eventually become a bc dx.

This is a tough decision, but once I decided I felt peace about it.  All of my anxiety and fear really seemed to disappear.  I think that's because it's the right decision for me.   It may or may not be the right decision for you.  Some people have more anxiety over the surgery than the prospect of a bc dx.  It just depends on the invididual. 

I am hoping to schedule my surgery for September.  I spoke with my onc and my bs office about it, and both felt it was a valid option for me.  My bs office said I shouldn't have any problem with insurance covering it.  I am hoping to get the DIEP procedure, but we'll have to see once I meet with the PS (soon).  I'll keep everyone posted.

I wish you all the best in your search for answers.  I know this is a really stressful time.  Please let us know how you are doing.

KarenT17

Hello in CT,

Can you tell me what is involved with a  PBM/DIEP procedure?  Can I be so bold as to ask if you are going to be able to keep your nipples?  I was told since I do not have cancer that I would be able to keep them.  That's the only thing about this that concerns me, I don't want to be without them!  Also, let me know what kind of implants they suggest, what is the safest and most durable.  You know it's kind of funny in a way to me that I'm considering this.  I always thought women who got implants were crazy, I thought they weren't safe and why risk it for a bigger chest.  I still don't want bigger breasts, I'm fine with my small chest.  I just don't want to be cut up repeatedly and have all these scars all over my chest.  The one I have now is still very upsetting to me each time I look at it.  Now they want to do it again to me on the other breast as soon as my biopsy heals.  My surgeon thinks that I should take the Tx but as I've said, I don't want to.  I'm going to make an appointment with another surgeon and a ps to get all the information I can before I make a final decision.  As I've said before, I don't like hospitals, needles, doctors or anything medical so all of this is a very big stresser on me.  I certainly don't want to continue with this sh$t my whole life so that's why I've come to this decision.  I'm very glad for this site even though some of the stuff I read is difficult and I really feel for the other women.  Just curious, where are you located and how old are you.  I live on Long Island and I'm 42.  Please keep me posted on what happens as I will continue to do the same.  I appreciate all the imput I get from everyone, I wouldn't know half of what I know if it weren't for this site.  

Karen

HelloFromCT

Hi Karen,

Here is a link to the Center for Restorative Breast Surgery in New Orleans.  You will see a lot of women on this site refer to it as NOLA.  http://www.breastcenter.com/procedures/diepflap.php  This describes the DIEP procedure, then at the top left there is a button that says 'Results Photos' and then a page where you click a link to see the photos.  This particular place in New Orleans seems to have the best info and the most reconstruction photos so you can get a better idea of what your results might be.  I may try to go there if I am not completely satisfied with my consultation with a local PS.  I'm still in the beginning stages of planning all of this.

As far as nipple-sparing and skin-sparing, yes, I am hoping for the same thing you are.  I haven't had that discussion with the PS yet, but I plan to and I'll keep you informed as to what I find out.

I've spent a lot of time online looking at different places and procedures and reading the many accounts of many women who have gone through it.  You will see that there is a big variation in results from one doctor to the next, so it's important that you are comfortable with your PS.

I am 52 and I live in Connecticut.  My BS is Dr. Manasseh, who is the director of the breast center here.  She is really great.  She works primarily with Dr. David Passaretti, a local PS, and from what I've read, his patients are extremely happy with their results.  I am hoping to meet with him soon and discuss all of this.  The issue for me will be whether or not he does DIEP and how many he's done, etc.  I really think I would prefer it to implants if it's a possibility for me.

I hope I answered some of your questions.  I'm by no means an expert and I am just getting started with this procedure myself.  I just want you to realize that you can have this surgery and be whole again.

Beesie

Karen and CT,

Nipple sparing mastectomies usually are possible for women who are having prophylactic mastectomies but they do come with some risks.  The more of your natural breast that you keep, the greater the risk that you might develop breast cancer.  Generally those who have non-nipple sparing bilateral mastectomies have about a 1% risk of developing BC; I don't know what the risk would be if you have a nipple sparing mastectomy but that's probably a question you should ask your doctors.  Additionally, when you have a nipple sparing mastectomy, often the procedure involves the removal of your nipple and then the placement of the nipple in the correct location on your reconstructed breast.  The risk here is that the nipple might not "take".  This has happened to some women on this site.  Lastly, even if the nipple does take, with no breast tissue and no nerves below the nipple, you of course lose all nipple sensation except possibly some surface feeling.   

If you have not already done so, I'd suggest that you read the posts in the reconstruction forum. You'll learn a lot there about the reconstruction process.  Most women who have reconstruction end up happy with the results, but for many, it's a long process with many steps. This isn't to discourage you but just to ensure that you make this decision with all the facts.  I remember when I went through all the years of call-backs and biopsies, I sometimes thought that it would be easier to just remove all my breast tissue and replace it with an implant.  Having now had BC and a mastectomy with implant reconstruction, I can say from personal experience that reconstruction unfortunately is not anywhere near that simple.  And I'm one who's had it quite easy with no real complications.  

Good luck to you both!

Stonebrook108

KarenT17

I sent you a private message

Take care

Ann

KarenT17

Hello everyone,

Just wanted to update my status.  Today I received the good news that I did NOT test postive for the BRACA gene!  Hoorah!!  That was short lived as my surgeon called me an hour later to confirm a date for my second surgery, what a downer.  I don't know if I'm going to get a second opinion as I spoke with my oncologist today too who said it was a good idea however he feels the outcome will be the same-I need to have it removed.  I don't know if I'm ready to have another surgery since the last one was only three months ago and the biopsy last month.  I mean the thing is benign so what's the rush, maybe he's looking for some extra cash to take to Vegas perhaps??  I'm also still considering doing a mastecomy as Ann was nice enough to call me last night to discuss her outcome since her surgery in January.  This is a very big decision and I just need to get some more information before I go ahead with either of these surgeries.  Between work and my daughter off for the Summer, it's been difficult with all these doctor appointments.  On the 8th the Genetic Counselor wants to discuss the result of the BRACA test.  I don't really understand fully what it means.  I mean I didn't test postive but I can still get breast cancer anyway someone told me?  Does anyone understand how that works, then why did I do this test to begin with?  If someone can explain it, please let me know.  Anyway, thank you again Ann for all the information and I will let you know how I make out.  Thank you also Bessie, I will check out the reconstruction sites.  If anyone has any updates on their status that has contacted me in the past, please let me know what's going on with you too. 

KarenT17

Stonebrook108

Karen,

I'm so happy for you about the BRCA test. If I was you I would still get a second opinion from the BS I gave you. Why go thru another surgery if you don't have too.

Keep us posted and best of luck,

Ann

LISAMG

For those with MULTI-focal ADH, your risk for invasive cancer may be higher than previously thought according to a very reliable large population study completed by the Mayo Clinic, especially if you are under the age of 50 and even more so if you are are under the age of 40.

With regards to nipple sparing, it has gained huge popularity for preventative surgery as well as very early staged BC when meeting certain criteria! Recent research supports the cosmetic outcome out-weighing the oncological risks. There is also no reason to have them moved and/or grafted, unless you have very large breasts where this procedure may not be recommended at all. You must seek experienced/highly skilled breast surgeons as well. Remember, surgeons who do not perform nipple sparing will not recommend this for their patients. Seek different opinions to get what you want!! Bottom line is doing whats best for you!! We must all decide what risks we can live with for ourselves. Best wishes. 

KarenT17

Hi,

Thanks for the information.  I don't have multi-focal ADH, just plain old ADH and so far no breast cancer.  What is the difference between multi-focal ADH and ADH, can you explain because I don't know the term you are using?  My left breast recently has shown a benign papilloma which has nothing to do with the ADH and I was told that even if I had taken Tx that it would not have prevented it.  I will continue to do my research and if I go ahead with a bilateral mastecomy that I would definately want to keep my nipples!  I will seek out only the best doctors if I happen to purse this course of action in the future.  As for right now, I don't think I am leaning that way just yet.  Let me know the details on the multi-focal ADH as I like to well informed about my health as much as possible.

Karen

Anonymous

Karen-----that's good news on the negative BRCA . Multifocal just means it was found in more than one spot.

anne

KarenT17

Hello All,

Just wanted to let you know that on the advice of my oncologist, radiologist and surgeon I have decided to have the benign papilloma removed for precautionary purposes.  I had my slides retested from the biopsy and it doesn't show anything more then the first time.  I'm not happy to have another surgery in less than 4 months but I don't want it hanging over my head anymore.  My next step is to try to get someone at Sloan Kettering's high risk facility to talk to me even though they don't accept my insurance.  They had sent me a form but I didn't pursue it because of the insurance situation.  I'm also going to a holistic "doctor" on Thursday and I'll see what she can offer me.  This was not a recommendation by any of my doctors for my breast issues but it was offered to me to learn how to relax, nutrition advice and how to deal with stress.  Even though I eat right, I'm open to suggestions,  I know this is probably silly but I saw an article in Self Magazine that said a study was done on mushrooms and that by eating them everyday reduced the chances for invasive breast cancer by 64%.  Take that for what it is but if it means eating a bucket of mushrooms every day I'd do it if it keeps me away from my surgeon!  With that being said, I'm going to do everything in my power to stay healthy.  I'm also going to the Genetic Counselor this week and will discuss my situation further with her.  I would appreciate anyone who has had good results with Tamoxifen to contact me as I am still on the fence with that as well.  I'm leaning towards not taking it but don't know if I will regret it later.  Does anyone have a crystal ball I can borrow?  Anyway,  I will continue to update my story and please contact me if you have any information that I should be aware of.  Ladies as always, thank you for being there...

Karen

Anonymous

Karen---I took tamoxifen for 5 years (I am high risk due to LCIS and family history) with pretty mild SEs--mainly hot flashes--talk with your doctor about the pros and cons--- some don't recommend it with ADH alone, but do if there is also family history of bc in the mix. Just be sure to get a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries if you do go on tamox.

Anne

KarenT17

Hello Everyone,

I had my surgery on Thursday to have the benign papilloma removed.  This time I knew the drill which I think was both good and bad.  I was there at 7 am, wire in at 10:00 and finally was taken to surgery at 12:30.  It was a long time to wait, my surgeon was behind.  Anyway this time I didn't get sick from the anesthesia, I had a great anesthesiologist who made sure to give me anti-nausua medication. What a difference from the last time, I woke up and clearly remember the recovery room.  I just hope that the pathology comes back with the same results, benign as I was told from the biopsy.  I had a different radiologist that put in the wire this time and I picked her brain for as much advice as I could.  We talked about organic foods, Tamoxifen and how I shouldn't be so quick to get any more MRI's.  She said that I don't have a high risk for breast cancer and the more MRI's I have the more likely they will want to biopsy something.  My surgeon said the same thing and I am going to stick with mamograms for the time being.  Maybe next year I will do an MRI.  This will also be my last surgery for a while, I'm pretty whipped from all of this over the past 6 months and I'm ready for a break.  I'm also not going to take Tx for now as I want to take a wait and see approach.  If something more invasive should occur, then I will have no choice but I think for now I will hold off.  Since I was feeling pretty good I even walked on the treadmill for an hour, probably won't tell the surgeon but I needed to exercise.  I'm so used to being active it's very hard not to.  I will go for my follow up visit next week and get my results.  I will post them when I find out.  That's it for now, I wish everyone nothing but the best.

Shappy

Hi Karen

I read your story and share some of your sentiments so I had to write to you.  One, I am hysterically afraid of anything medical, tests, results, etc.  I had to get moral support just to get a mammogram this year.  Of course a few days post mammogram  I got "the call" left on my answering machine by my radiologist--to call him followed by another message from the scheduler to call their office for an appointment. I immediately had a major panic attack and felt like I was going to vomit.  I was lucky and got fast-tracked, got the call on Monday, diagnostic mammo on Tuesday morning, stereotatic biopsy on Thursday and got the biopsy result Friday morning- it was benign with no atypical cells.

I'm also feel like a total baby since most of the women on this forum have gone through so much and seem so brave.  I feel embarassed to post this.  I'm not so sure why I fall apart so easily.

Anyway you mentioned about the mushrooms and being silly etc--I've also been looking for anything to prevent or lessen my chances of BC.  I can't change the fact that I began menstruating at 10.5, but I've done everything I could to counteract that - 4 term pregnancies, breast fed all 4, no bc pills or hormone replacement.  So I did some investigation and stumbled upon the theory that wearing a bra increases the chance of bc.  Don't laugh, the breast lymphatic system can be constricted and the lymphatics are tied into your immune system and the lymph system helps rid the body of toxins much like the liver and kidneys.  Besides that, not wearing a bra doesn't have any harmful side effects. Certainly don't wear a tight underwire!

So maybe it's not a matter of toxins just entering our bodies, maybe we need to be sure our lymphatics aren't constricted so the toxins can get out.   We know exercise decreases breast cancer risk--exercise, movement also help circulate lymph fluid, which is more passive than the circulatory (which obviously has the heart to help pump it along.) 

I mentioned this to a physician friend who came over yesterday and she says she always tells her patients to remove their bra when they come home from work.  There's so much we don't know about breast cancer cause/prevention/treatment we need to keep an open mind.

Personally I'm way too scared to get an MRI unless I have to.  The more tests, the more they can find.  BTW here's an interesting article in the NY times with that same spin:

http://www.nytimes.com/2009/03/31/health/31mamm.html?emc=eta1

Oh and like you I got a large hematoma post biopsy.  I guess I was terribly naive, when they said 'bruising' I didn't realize 70% of my boob would turn dark purple with a large hematoma at the insertion site.  I have just been putting heat on it and know it will take a long time to resolve.  I'm worried that the hematoma will cause some abnormal findings on my next mammo. 

Good luck in whatever you decide but don't make a rash decision.  There is a wealth of information here and I'm amazed at how thorough the responses were to the dilemma of taking tamoxifen.  The women on this forum are like gold and I feel so fortunate to learn from all of you.

BTW I am a hospital based  RN and work in women's health.  

KarenT17

Hi and thanks for the info.  I asked the Genetic Counselor about the mushrooms and she said it's because mushrooms contain Selenium.  She said Selenium has been proven to reduce breast cancer but it is also found in other foods as well.  It's available like any other supplement over the counter.  I have since bought mushrooms and I will eat them whenever I get the chance.  I like them so it's no big deal to add them to a salad once in a while.  Can't hurt right?  As I was told about MRI's the more you get them the more they will see and want to biopsy everything.  I didn't have to have this papilloma removed but it was suggested I do to prevent future problems.  I will not be getting any more MRI's or mamograms for at least 6 months at the very least.  If I continue to have problems, I will go straight to a plastic surgeon to discuss removing it all and be done with it forever.  I'm praying to god that I don't have to make that decision but I know it can be a possibility down the road.  As I said, I desperately need a break from all of this and hoping after my check up next week that I can put this all behind me for a while.  I just want to enjoy my husband and daughter and live my life like I did before this all began.  I wish you luck yourself and hope that you don't have to go through what I experienced.  Just so you know, it took me about 2 months for the hematoma to resolve itself.  Good luck to you and all who read these posts.

SelenaRG

Hi,

I am new to the forums and saw the posting about Focal Atypical Duct Hyperplasia.  I am hoping someone can help me to make sense of all of this.

Over a year ago a suspicious site was seen in my right breast on my mammogram. I was told by local radiologist to just watch it and repeat the mammogram in six months. When it was repeated, the same site was seen and again I was told to wait. I finally went to a surgeon and had him take a look at the mammogram reports. He recommended that we do a biopsy, which was done on May 21st. He tried the stereotactic route but the site was too close to the chest wall and under my armpit area.  Now mind you when the radiologist performed the needle localization he advised me that he felt my surgeon was being overly aggressive in his treatment because he did not feel there was anything there!

The results came back as "foci of atypical duct hyperplasia and columnar cell change in background of fibrocystic changes and duct ectasia with small early fibroadenoma and areas of distinct apocrine metaplasia" The report goes on to say there are "also foci of ducts showing a combination of columnar cell change and micropapillary projections in the lumina with microcalcification and pseudocribriforming."

The surgeon, after speaking with an oncologist, sent me to have an MRI which showed there was a nodule that was consistent with a lymph node on the right side. But in the left breast there was an enhanced lesion with irregular margins with type I dynamics. A sonogram was ordered but not performed by the same radiologist that did the needle localization!  It showed the area also so another surgery was scheduled.

On July 10th I had the second surgery which supposedly came back clean. During the needle localization the radiologist thought he saw another spot but then brushed it off as nothing. I say supposedly because when the oncologist read the report they referred to the right breast. The report was changed;and no one has said anything other than it was an unknown mass/lesion.

The oncologist I saw recommended Tamoxofin since I am considered high risk. I was not raised by bioloigical parents so medical history is sketchy but I was told that my maternal aunt died from breast cancer at age 56 (I am 55) and all of her siblings (males) died with some sort of cancer. My biological father died at age 45 with lymphacetic leukemia. 

My concerns are if there might be other ADH in other areas that have not been located.  And if I had a hysterectomy at age 35 with no hormones, how do I know that tamoxifin is right for me? There were no HER2 tests performed as they said the samples were too small.

I would appreciate input on other folks that may be experiencing the same problems, because I am thoroughly confused.