Focal Atypical Duct Hyperplasia

Girls do the right thing and take the tamoxifen.  I was diagnosed with ADH and did NOT take the dr's advice.  I thought I was doing the right thing.  My thinking was-- why treat myself for something I did not HAVE YET.  BREAST cancer ~ and risk other side effects with the tamoxifen.  Low and behold 3 years later I had breast cancer.  Be vigiliant with your self exams, have a mammo every 6 months, alternate with an mri 6 months later for several years.  Early detection is key here.  Exercise, eat healthy, limit your alcohol and PRAY ~  I know you will be alright !

Alicia

Hello,

I hope you all don't mind me joining this thread...I have been following for a while.  I had a 10 year ago dx of ADH...went to BS for annual memmo and exam.  Suspicious feeling in left breast close to the area they found the ADH in.  BS did mammo, exam and US...all inconclusive.  I was given the choice of waiting six months or having an excisional bx and just get it out and make sure it is "nothing".  I questioned about having an MRI but she said they could be inconclusive and the only for sure way was to cut it out as it is not just one little area.  She said she would be proactive and get the pathology done asap...she was not horribly concerned but ...

She also ran me through the computer that told her I had a lifetime risk of invasive cancer of 25.6%.  They are suppose to call on Monday to schedule the surgery...needle bx are not as acurate as excisional in this type of dx apparently.  Any input would be greatly appreciated.

Thanks!

younggrandmom-----with your history of ADH, it's probably wise to have the excisional biopsy to make sure there isn't anything more serious in there (like DCIS, LCIS or invasive bc). Do you have any family history of bc? They often recommend only close monitoring for ADH, but sometimes recommend the addition of tamoxifen if there are other significant risk factors, such as family history of bc in a primary relative (mother/sister/daughter). I was diagnosed with LCIS 6 years ago (a step further along the bc spectrum with double the risk of ADH) and I have family history of bc (mom had ILC), so I took tamox for 5 years to decrease my risk of invasive bc. I tolerated it quite well with minor SEs (mainly hot flashes) and now take Evista for further preventative measures now that I'm postmenopausal. I also continue with high risk surveillance of alternating mammos and MRIs. Even though MRIs can be inconclusive, it would still benefit you to have one at some point.

anne

If your female relatives were diagnosed with breast cancer when they were postmenopausal, they would be less likely to have a BRCA mutation.

Atypia can be multifocal (multiple spots in the same breast).  But its a weird condition.  Atypia puts both breasts at some increased risk - even the parts of the breast that look normal. 

The vast majority of people with atypia  (and nothing worse) will never go on to get bc.  But some do.

Its a balancing act how you want to proceed.  No one path is right for everyone.

Hi there,

This thread caught my eye as I was logging on.  I TOO had ADH....Found in august 2006.  I was 41.  It was technically my first screening mamo.....and what motivated me to not procrastinate anymore  was one of my 4 sisters(who is 13 years older than me had just finished treatment(lumpect and rads) for DCIS.

I am NOT going to advise you.  My MO is NOT to promote fear, or pontificate.  I am going to say YOU have to do what is right for you!  I did not read ALL the pages in between your first post....mostly the first and last.......BUT....YES, you are now high risk.  I too chose not to take Tamoxifen initially.....I was born late in life to my mother(who did NOT have BC)....and at the time I had a hot and heavy boyfriend....childbearing was NOT out of the question.  Also, my BC sister had previously had a DVT and my dad pulm embolism....and don't let me forget the sister who was going thru real menopause and was literally stark raving NUTS!  Diagnosed bipolar...then later second opinion said not bipolar....she had lots of other issues some chemical, some bad marriage, etc....

Ok, sorry...If you read my history/profile....I think it is all spelled out.  I did everything right too, was diagnosed w/ the ADH when I was at the top of my game, had never looked better felt better, in great shape, etc, etc........what does that mean?  who knows?  I had been following the food pyramid pretty religiously for mos before and do question a lot of the nutritional stuff and dairy controversy...nonetheless, I digress again!.... 2 years later I was diagnosed w/ stage 1 grade 1 IDC in the other breast and ONLY visible on MRI, requiring MRI guided biopsy.  At the time I cursed myself for not taking Tamoxifen.....HOWEVER, to be perfectly honest w/ you and I guess here comes that word!  This is part of my "journey"....sorry if that sounds......?.......I think to get where I am now....which is SO much happier and at peace I had to do all the other stuff first.....It was a process and continues to be. 

I've said this before on other threads....and truly do NOT mean it to be threatening....BUT Early detection is great.....BUT, no matter how many pink ribbons, cheerleaders, or?... it is NOT prevention...technically there is NO prevention. So we HAVE to trust great minds and the miracle of modern technology and quite frankly go in KNOWING that when we sign consents for mamos, MRI's etc...we are asking them to find something before it turns into a bigger problem.  If they find nothing GREAT!  but for me going thru that was torture.  I had a choice to liberate myself...2 issues in 3 years was enough for me...tHANK god both were found small and early.  Yeah yeah yeah on self breast exams......nothing I had was EVER visible or palpable except by mamo(adh manifested as calcifications) and the IDC only by breast MRI.

I too had a paternal gmom  whom we are pretty sure had BC...BUT she died in the 40's...I did all sorts of research and found there was no cause of death listed...more than likely she had no medical care either...just the stories my mother used to tell about wrapping the breast, orange peel skin, etc...yes, my Dad was like me...late life accidental child......he had  2 bros, no sisters SOoooo due to that and my age I was brca tested ....and honestly that truly does open up another can of worms......ehtical ones.....if you are tested you REALLY must be prepared to cope w/ deal w/ the results.........Mine were negative which also sot of gave me more false sense of security?  I know that sounds nuts.....OF COURSE it was good news....except I still remained high risk.

I should probably read more because not sure about what you decided about Tamox.  It took some time for me to sort all out.  I never really had the typical side effects except emotional......BUT All sort of came about 2 mos after finishing my initial treatment which also is apparently prime time for depression to hit cancer pts.  I am happy to say I am doing well now w/ tamox and pray that I continue to do so for 4 more years!

Please feel free to pm me as I have been there!  And I'm doing famously now!  So will you!

cheers! 

I got the call this morning...my excisional bx is scheduled for Dec. 4th...I guess I have a while to wait.

Karen, please know you're in my thoughts and prayers.  This is not easy and it IS a process.  Please know and REMEMBER my dear you ARE being proactive.....you found a problem before it turned into something worse................but honestly..............and I SO remember saying and feeling................... it still SUCKS!!!!!!!!!!!!!!  All the pink ribbons, cheerleaders, etc don't make it go away.  Give yourself permission to grieve because it IS a greiving process too.....If you're too down, talk to a professional, esp if you can find one who deals w/ cancer pts.  KNOW that some letdown and YES depression are VERY common BUT they are temporary and very treatable.  There is a positive side to all this and I PROMISE once you choose what is right for you things will be brighter and you'll even be able to move on.

Cheers! xoxo my dear!

I was told I had ADH over five years ago.  I went on Tamoxifen for a full five years.  I had little side effects from the  medicine.  I get an annual mammo and an annual MRI to check on my status.   I to have a grandmother on my Father's side with BC.  I also had 2 aunts on my Mom's side with BCso I decided to not risk it and went on the medicine.  Glad I did.  It gave me some peace of mind.  Since I am high risk I want to stay healthy as long as possible in hopes that further research finds a way to beat this once and for all.

I have spent hours reading these emails when I should be working.  I am thrilled to see people discuss atypical hyperplasia.  I had told my breast surgeon that while breast cancer survivors had a "club" to support themselves, those of us with ADH were alone.  I had blood come out of my breast at 40 (but had several mammograms in my 30's due to concerns.)  There were some abnormal cells but my doctor did not see anything else when she went into the duct with a camera.  She thought it may have been the result of breast changes due to a miscarriage.  I had my second child at 41 and nursed for 11 months until we felt I had to stop in order to be checked.  I have been going to this breast cancer surgeon since I was 36.  No problems until 46, when I had a surprise pregnancy and miscarriage, followed by blood out of the same breast a few months later.  This time she removed a good portion of my breast and I got the ADH diagnosis.  Shortly thereafter I was told to start Tamoxifen and see an oncolgist, who agreed.  It took me a long time to try it, and when I did I became extremely depressed.  Evidently about 30% of women on Tamoxifen get depressed.  I was also dealing with a difficult job situation, and a husband who has end stage kidney disease, which means he will be getting a transplant at some point.  I stopped the tamoxifen so that I could manage our lives and get another job.  My new job is great, and I decided to try again a year ago, but got so depressed within a week or two I felt that I could not function.  I also could not handle my kids and husband very well.  I stopped again.  Last September I started Effexor, which is supposed to manage the depression and hot flashes.  A few weeks later I started the Tamoxifen. I have been on both since, and hate them both.  The Effexor helps the depression, but not fully.  It also makes me tired and constipated.  I get naseaus sometimes, and have major hot flashes which wake me up every night.  I forgot to take them both yesterday, and woke up with a severe headache today.  I just discovered on-line that withdrawal from Effexor is so bad, especially the longer you take it, that there are people trying to get it taken off the market.  I cannot believe that no one told me that there are severe side effects fromr Effexor withdrawal.  I am now 48 years old, and want to get off both.  My paternal grandmother had BC in her 70's.  My mother had a situation at 39 where she had blood come from her breast.  The doctor said that the mammagram looked to him like she had breast cancer.  She went to a healing mass the night before the biopsy, and when the doctor went in, he could not find what was on the mammagram.  The bleeding stopped and never came back.  What this means for me is that she may have had breast cancer as a 39 year old.   There is a family history of colon cancer on her side.  Because my husband's life expectancy is at risk, and we have two young daughters (11and 6)  I feel I must do everything I can to stay alive.  I need to lose weight, and have actually gained weight since being on the effexor.  It seems crazy to think of bi-lateral masectomy, but I am scared and I need to function at a higher level than most.  I have a demanding job, and a husband who gets tired alot, and financial issues, and kids who needs me.  My breast surgeon told me that my insurance should cover the surgery since my risk is so high, but that she would not do it unless I talked with several women who had gone through it and my husband was also comfortable with it.  (By the way, the younger you are with the abnormal cells, the higher your chance of getting breast cancer.)  I know that removing my breasts will affect my sex life, but the Effexor is too.  I would appreciate the thoughts of those of you who have been through the surgery.  Generally I am an optimist and can handle most things in life, but Tamoxifen makes it difficult for me to handle things as well now.  If I did not get depressed on it, I would definitely take it for 5 years because I feel I need to do what I can to be there for my children.  Thank you for letting me put this out there.  I have not spoken to another person who understands this.  Just a friend who had breast cancer and a masectomy, but did not need chemo, radiation, or Tamoxifen.  She is not as understanding as I would expect because I have not gone through the actual cancer as she has.  Since I am supposed to take tamoxifen, I feel like I have greater risk than she does.  I do not see the point of getting the genetic testing, except for my daughters, as my risk is already greatly elevated.  My friend says I should get it so it could help me decide about the surgery.  I will be seeing the oncologist this month, so I need to be ready with questions.  Thank you.

Hello Nancy,

I'm sorry you have had a rough time of it.  I had a bilateral mx in November for either widespread atypia or very low grade DCIS.  The pathology slides from my May 2009 biopsy were very hard to read, and pathologists could not agree on my diagnosis.  My September 2009 mammogram still showed a lot of calcifications, so many that if my surgeon went in to remove them all I would hardly have a breast left, and I would still be at high risk for developing cancer down the road.  My surgeon strongly recommended mastectomy because I am 48, and I was first diagnosed with ADH when I was 43.  The mx is a difficult surgery and I am in the process of "expansion" right now - when the plastic surgeon periodically injects saline solution into temporary implants.  My final surgery will be in March and I will be much more comfortable then.  I would say that the mx will have put me out of commission for 4 months, from mid November to mid March, if all goes well.  I miss my breasts a little bit (especially this week while we are in Maui and I have to see lots of healthy breasts every day!!!!), but I have to say that I have peace of mind.  And surprisingly enough, it hasn't affected my sex life in a significant way at all! I had been stressing since Feb 2009, when the radiologists first sounded the alarm, but now I feel as though I've done everything I possible could to avoid bc.  If you want to private message me, please feel free.  Best wishes with your decision.  You have several choices, which puts you in a position of power.  

Kristen 

Wondering about the actual experiences of some of you who have been taking Tamoxifen.

Also Evista . . . . 

 Decision time for me . . . 

June 2009 stereotactic and excisional bx confirmed dx Mild ADH R breast .Second opinion confirmed.  Fam hx -- my dad's half sister, on dad's side, died in her 60's in 1978. I am 54 yrs.  Hyst 6 years ago. Still have 1 ovary. I consider myself "menopausal"

Will have 6 mo visit in 2 weeks..  Doc will talk to me about weather I want to take Tamoxifen.  On the advice of a friend who is a nurse practitioner, I have been researching Evista.  Had dexa 5 yrs ago and "osteopenia". Taking calcium and Vit D ever since.

I really do not want to take unnecessary medication.  I already have night sweats and some arthritis pain and have worked hard to loose 10 lbs in last 6 mo.  Not looking forward to sx you all decribe.  But, of course I do not want to deal with full blown breast CA either.

Tell me more about what you have been experiencing.  Tell me that it will be worth it.

I have a question.  I was diagnosed with ADH a couple of years ago.  I met with an onocologist, they suggested tamoxifen.  I tried the drug and could not handle this drug.  I met with my onocologist every 6 months and had a mamagram and MRI.  I had my last mamagram almost one year ago.  I thought that they were going to screen me every 6 months.  However, when I had the last one the radiologist said everything looked good and I didn't have to come back for a year.  It was just my impression that I would be screened every 6 months because of the risk?  Am i correct about this or is this only for the first year after you are diagnosed with ADH?   I will be going in for my mamagram in a couple of months and just wondered if I misunderstood my onocologist.  Basically what I am asking is if you have been diagnosed with ADH is it correct that you should be screened every 6 months?

I don't have ADH, but I have classic LCIS , ALH, and ductal hyperplasia (not atypical).  I had a 2nd opinion at a major institution (NCI certified) in 2007, and they said their standard of care for LCIS patients is yearly mammograms, twice-a-year clinical exams, and the offer of tamoxifen.  (Some studies bunch ALH and ADH together for risk, and LCIS is usually thought to be a higher risk factor than ADH or ALH.)  They said due to by breast excision, I was not a candidate for MRIs because I have too much scar tissue.  I have a weak family history.  If you have a strong family history, then you may have other issues.

I had exams/biopsies/follow up mammograms/ultrasounds every six months for the first 1.5 years or so, then it got decreased to, as above, yearly mammos and every six month clinical exams. Different places differ; there is controversy how people 'should' be followed.