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Atypical Hyperplasia
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Atypical Hyperplasia

My biopsy shows that I have Atypical Hyperplasia. I am 37 and have a family history of breast cancer. My grandmother died from invasive breast cancer. All of my grandparents except one had cancer. My mother had a melanoma removed from her leg at 26. I also have a cousin who has been diagnosed with mestasis breast cancer. I am very worried. I am very greatful that I had no malignancy with my biopsy. The AH has me confused. I truly do not understand what all of this means. From what I have read with my family history and the AH lots of women choose mastectomy with reconstruction. I go back to the Dr. Wed. and he will check my incision and go over my report. Does anyone have any helpful info on this and the questions I should ask my Dr. What are my chances of developing breast cancer? I guess like everyone the unknown is very scary!! Thanks for any info you can give.


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Avatar_n_tn
Dear mackenzi:  Atypical hyperplasia is associated with an increased risk of developing breast cancer.  Having first degree relatives (mother, sister, daughter) with breast cancer also increases the risk.  Given your situation, you may benefit from a discussion with a genetic counselor or breast specialist who can better quantify your personal risk and make recommendations for surveillance.
41 Comments
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Avatar_n_tn
I just got diagnosed with ADH, now they want to do a surgery to remove the area concerned in my right breast. I am freaked out to say the least. Worried its going to make my breast look weird and scar me up. I have stopped talking to my friends about it as no one seems to get it.
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Avatar_n_tn
I understand exactly what you are saying. It is very hard for people to understand what you are going through. I had the area removed and am very small breasted. I am still swollen so I will not know until the swelling goes down how it will look. The incision was larger than I expected but I think it will look ok once I have healed. I really do not understand what all this means for me. What did your Dr. say that all of this means for you? I truly hope all goes well for you. I am thinking of you. Anytime you need to talk I will be glad to talk to you. Friends are great, but sometimes they think you are over reacting or need to move on because it is not cancer. But it is very hard to move on when something that personal is going on with your body and you are unsure of the end result. Hope you do well. Let me hear how it goes.
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Avatar_n_tn
Hi,
I too was diagnosed with Atypical Hyperplasia.  Had two biopsies done in one year.  Cancer runs in my family so my doc referred me to oncology to have me put on Tamoxafin.  Also have to have mammograms every 6 months, in fact my next one is this Friday. I too understand how friends and family tend to make it sound like everthing is fine because its not cancer.  In my head it is the step before cancer and I feel as if I am just waiting for that bad news.  I think of this whole situation each and every day and I pray that the Tamoxafin is doing what it is supposed to do.  The side affects really stink too, but after 3 months on this stuff, I think my body is actually getting used to it now and the side affects seem to be getting a little better.  I know how scared you can get with this type of diagnosis.  My prayers are with you.  My best to you.
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Avatar_n_tn
Hi: I was diagnosed with Atypical Hyperplasia in June with the first biopsy. However when I had surgery to remove it the tissue results came back benign. But I know since they found it the first time, it is there. My surgeon said they must have gotten the lump out  with the biopsy. I was also told that this type usually comes back . If that happens then I will have another lumpectomy. The lump was very deep and before and afterwards very painful. I did learn that after it finally drains (for a day or two) you feel a lot better. I had to wait for 2 weeks before mine started draining.  After about a month I was okay as far as feeling ok. I have a large scar but then it was very deep. My doctor told me to put Vit. E on it every night to help the scar go away. I have done a lot of research and am going to fight this from every direction. I am starting a homeopathic remedy, an anti-cancer herb, and use the "zapper" by Dr. Hilda Clark to kill off the virus. Plus I am trying to improve my diet. I have to get mammograms every 6 months. They haven't put me on Tamoxifin (tamoxifen) yet for this but have mentioned it. Hope this helps.
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Avatar_n_tn
Hi!
I was diagnosed with Atypical Lobular Hyperplasia from stereotatic and sono biopsies last week. I had a galactogram today which showed a duct blocked.  They have recommended open biopsy which I do not want to have at this point. Lumps-scars for something than might be positive. I would rather wait a couple of months to see if there is a change but nobody understands.
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Avatar_n_tn
I understand what you are saying. But if you get it out then what does the doctor say will happen next?
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Avatar_n_tn
Surgeon said 25% chance it will be positive.  If positive treatment would be Radiation and Tamoxafin.  If not positive monitoring.  Surgeon said ALH diagnosis has high risk for both breasts.
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Avatar_n_tn
When a radiologist or doctor says "Atypical" about anything, what does this mean?  Does it mean "the usual thing" or "not very usual"?  Is "Atypical" good or bad?  A bit confused here.
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Avatar_n_tn
Here's how it was explained to me.

Atypical Ductal Hyperplasia:

Atypical - not normal
Ductal - confined to the ducts
Hperplasia - over abundance of cells

Your body is producting more cells than usual & these cells are abnormal. As we all know, this is not cancer but it is a "marker" that we are at an increased risk of developing breast cancer in the future.

The only people in my family with bc was a maternal great aunt who had a double masectomy - she died several years ago, not from bc. I also have a maternal aunt who had a masectomy in her 60's, now in her 80's, she's still kicking with no reoccurence.

I have had two wide incision biopsies, one on each side they both came back as ADH. Had the first one 7 yrs. ago & the other one the following year. You can barely see my scars, I thought the incisions were huge but over the years they faded to fine white lines. I have mammograms once a year & an extensive breast examine twice a year by a health professional. I am extremely dilligent about making sure this is a priority for me. This is something you learn to live with & in time it won't be the first thing you think about in the morning or the last thing you think about at night, be kind to yourself, give yourself some time, take care of yourself & pray for our "sisters" who are not as lucky as we are.

You are all in my thoughts & prayers - Good Luck!
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127512_tn?1193745816
I agree with jlady and but atypia was cancer.
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Avatar_n_tn
How are you???Have seen any posts from you in awhile!
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Avatar_n_tn
Hey, Im so glad I posted here. It feels good to get heard and understood. My surgery is on Monday. I love my surgeon, he has spent a lot of time with me. He hung out for 45 minutes the other day joking and helping me feel calm and confident he will do a good job. He says its about the size of a golf ball, that seems huge to me. Even though my first biopsy came back ADH, there is a high percentage this can come back with cancer. Im not so afraid of cancer, Im afraid of how western medical doctors treat it. Radiation treatment scares me more than the cancer as does chemo. They are horrible. Anyway Im nervous about surgery as I have never had it. Im nervous of feeling vulnerable, a man cutting into my breast while I am asleep. Its all just too weird for me. I hardly ever have contact with Western Medicine.
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Avatar_n_tn
I am so glad to hear from you. I am glad that you are so confident with your Dr. Good luck with your surgery I really believe you will do great! I on the other hand went back to the Dr. on Wed. very discouraged with him. He told me over the phone I had AH, then in the office he told me I had ALH. He seemed unconcerned about my family history and he said he would watch me closer. He wants to see me in 6 mths. He never mentioned mammos so I did as he was walking out the door. His response was umm.. once a year. I feel like he was way to casual. I want someone who seems more aggressive about this. There is to much cancer on both sides of my family. I asked the nurse for a copy of my path. report. I got to the car and it says I have focal Atypical Ductal Hyperplasia along with other things he had not mentioned. He never went over the report with me. I have contacted another Dr. that comes highly recommended. I hope that I have a better feeling about the whole thing. What did your Dr. say about ADH for you?
I will be thinking of you on Mon. please keep me informed!
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Avatar_n_tn
Hello, My Doc says very little about ADH. I read my pathology report and hardly a thing in it. Benign ducts, fibrocystic breast disease and atypical ductal hyperplasia. Part of me wants to see my slides after reading about different grades etc. I would like to know how bad mine is and what it looks like. Im going into surgery totally relying on a pathology report. The doctor also. I doubt if he has even looked at the slides. I am beginning to see more clearly, what kinds of questions I need to ask. I feel ok today and my fear comes and goes. Thanks for responding to me. Its comforting to know you there are others out there dealing with this. I usually have a very supportive community and right now its hard to get support its kind of bizarre. blessings
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Avatar_n_tn
Good luck to you. I will be thinking of you. I will not tell you not to worry because I know myself that is not possible. Please let me know how you are getting along. Do you know when you will know the results of this? God bless you!!
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Avatar_f_tn
Is your surgery this week?  How are you doing? I will continue to keep you in my prayers. I've been following the posts but for some reason couldn't reply on my hubby's computer. Mine crashed!
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Is Ziggy having more surgery? I thought it was over with. Guess that's what you get when you have been away for awhile. What's going on with Ziggy?
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Avatar_n_tn
I had my small (3mm lump) and another small area of microcalcifications removed on August 31st. Path report came back with 3mm spot as malignant but calcifications okay. All reports for any spread was nagative. I am seeing an ocologist on Thursday, because no one is sure of how or if to treat me. Radiation is out because spot was so small and if I have it I cannot be treated with it again should anything show up down the road. I do not want tomoxifin (sp?). I watched the horrible side effects it had on my mother. Arimidex is an option but frankly I would rather not take anything and just be closely watched. What do you two think?
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Avatar_f_tn
Sorry about the mixup. Someone is having surgery Sep 29 and for some reason I thought it was you having a larger area removed. I hope they find a treatment plan you're comfortable with. I haven't had to deal with bc myself yet, so can't offer an opinion there.
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Avatar_f_tn
Some of you ladies are too much! It's cancer...if they recommend a treatment, then you should be ready to deal with the "side effects" if you want to live. I spent 5 years in the Tamoxifen trial...so we could have a drug that might help some of us. Yes, there were side effects, but at least it kept breast cancer from showing up in me for a few more years than my younger sister, who did not participate in the trial. If you want to live, you'd better be ready to fight.
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Avatar_n_tn
I am offended by your suggestion that I and other who choose to not take medication do not want to fight. We do not always get to pick our battles but the last time I checked, these were my options not yours.
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Avatar_f_tn
I apologize if I offended anyone, but all this woe is me about side effects from any treatments...get real...it's cancer...it can kill you.
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Avatar_n_tn
You go girl......fight, fight, fight!!!

I'm with you all the way!
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Avatar_n_tn
I also had surgery on my left breast on 8/24/06 and it too showed mild atypical ductal hyperplasia with no evidence of malignancy.  I work for my gyn and he reassured me along with my surgeon that I do not have cancer.  I have a feeling that now someday I will get cancer.  I can't dwell on this, it will make me crazy.  I have been thinking about having bilateral mastectomy before I do end up with problems later on in life. I mentioned it to a couple of girls at work and they think I'm crazy.  I will be 54 in a few weeks and I have no history in my family that I know of.
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Avatar_f_tn
It's hard for others without our problems to understand how worried we are, even when the doctor assures us there is no cancer. Sometimes getting as much info as possible on the problem helps to ease our worries. Finding others with the same problem helps, too. I hope you can find answers that will ease your worries.
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Avatar_n_tn
I was just diagnosed with Atypical Hyperplasia yesterday and I am scheduled to have surgery on 10/16/06, they will remove a benign mass and some of the tissue around the mass. This is scary stuff to have to go through. My first biopsy a couple of years ago was for micro calcifications which is another type of precancerous tissue. I have had 3 maternal aunts and 2 cousins that have had breast cancer, none with my mother yet. I have also had cancer of the cervix in 1996 and had a hysterectomy.
It is nice to have someone to talk to who is going through this also. Family and friends don't think it is serious because it isn't cancer yet but they need to understand that this is what leads to cancer.
How long are you usually sore after this sort of surgery?
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Avatar_f_tn
Had double mastectomies 12/03. Didn't get to heal normally due to infections. It felt like someone beat me up or I worked out way to hard and was sore for a week only to have 2 more surgeries 21 and 45 days later for the infections...so being sore was long term.
My friend just had  a mastectomy last week. She was down for 1 day. Off the painkillers the next day. God bless you and keep you. Let us know what happens.
Carme
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Avatar_n_tn
Hello, I was recently diagnosed with AH. I am so happy I found this site. I am feeling very nervous about the outcome of my next biopsy, but have gotten little support from friends who think it's no big deal! Everyone is quick to say they have had irregular mammograms as well and it's nothing to worry about. Should I be worried? LP
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Avatar_f_tn
Unless they've had AH my guess is that they really don't understand what you're going through at all. My breast problems don't include AH, so I can't give advice. But, I know all about the worry that goes with biopsies. Hang in there.
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127512_tn?1193745816
Maybe you could ask the dr. here what AH is. I am not sure either but this is what my first biopsy said and mine was cancer.
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Good evening!  My nightmare started on September 19th with a mammogram.  Since then, I have been through 2 ultrasounds, needle aspiration, mass biopsy, 2 MRI's and am now scheduled for another ultrasound and mammogram.  I was diagnosed with AH and have been told that the MRI showed up some questionable "radiant" areas in both breast.  Also during the MRI, it was discovered that I have cysts on my spleen for which I had an abdominal ultrasound for today.  The doc says that they are trying to come up with a plan and that there is a possiblity of the "C" word.  He also says that I will be having a lumpectomy for sure but again, they are trying to come to a conclusion as what to do.  How does someone get through this mentally?  I just turned 40 a few weeks ago and feel like I am falling apart at the seams.  There is no history of any kind of cancer in my family so I am really scared at this point.  Thanks ladies for being here!
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Avatar_f_tn
It is hard to deal with the possiblity of cancer. You have been through a lot in a few weeks and I'm sure your mind is swimming. I've found prayer, support of friends, keeping busy, and dwelling on the happy things in my life really helped me. Keep us posted. I'll keep you in my prayers.
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127512_tn?1193745816
We are all tormented here when we find things like this out. Hard to imagine hell being worse. You will make it. I cried for weeks, vomited day and night, and lost my appetite (but no weight LOL) and prayed like never before. People here are great to talk to. Most of have been where you are. Finding as much info as you can on your situation will keep you busy, well informed and your mind somewhere else for a time. breastcancer.org is also a great site. Do you have the results of your biopsy? I believe you can have cyst in many parts of the body without it being cancer. Hopefully yours will not be.
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Avatar_n_tn
The doc called me as soon as she got the results from the aspiration and biopsy and said that they tested positive for atypical hyperplasia and needed to refer me to a surgeon.  Between her and the surgeon, they are continuing to put me through tests, which as I said, I have a mammo and ultrasound scheduled for 11/27.  I asked the surgeon point blank if this was cancer and he says that he would like to be able to tell me no but at this point, he can not.  Before the MRI's, he was only planning on doing a lumpectomy but now that those have come back as not satisfying to their likings, he says that the lumpectomy is definitely coming but I just have this feeling that there is more to it.  Waiting is the hardest part...I was told that the MRI's pin pointed the exact coordinates of the issues but more issues were identifed on the MRI's.  Please keep me in your prayers and I am going to hold strong.  I just keep thinking that there are people out there who have it worse than I do!
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I got my results back today for the ab ultrasound.  It was found that I have a 8.7 cm cyst on my spleen and am being referred to a surgeon to discuss the plan on Friday.  I don't know what's going on but I've always been the type of person that when I do something, I ususally do it big.  I can't wait to see what they find next.  Keep my in your thoughts and prayers and I will keep you updated!
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Avatar_n_tn
I just happened upon this site and sympathize with what everyone is going through.

I had a excisional biopsy last Thur. Today I got a call that it was benign but there ais "a lot going on".  It is some type of  hyperplasia.  I am 35- no history of breast cancer in the family.  I have three boys 8,5 and 2 and am in a panic. I have an appointment with the doctor tomorrow morning. Any advice on questions I should ask?

Thanks.
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Avatar_f_tn
ts_the1 I'll keep on praying. You are going through a lot right now. Keep us posted.

lbsel - I don't know much about hyperplasia but will keep you in my prayers also.
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How did your appt go? Hope things went well. Please let us know.
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Avatar_n_tn
Happy Thanksgiving everyone!  Just wanted to update you.  I had an Abdominal CT scan last week and unfortanately my spleen is going to be removed.  They found an 8.7 x 8.7 cm simple cyst, a 2 x 2 cm complex cyst as well as a couple of unidentified areas within my spleen.  I also had a follow up mammogram and ultrasound on my breast yesterday and the results were not conclusive with what was seen on the MRI's so now I am going to have MRI assisted biopsies on both breasts.  They have now also found a nodule under my left arm area.  They are telling me that I will definitely have the mass in the left breast removed but they are now concentrating on a cyst in the right breast that showed lots of radiance in the MRI.  I don't know what's going on but I am most certain it will all make sense when it's over.  To the person who asked what is atypical - what I was diagnosed with in my original biopsies was atypical hyperplasia which is a marker for breast cancer.  Please keep in mind that is does not mean cancer.  But believe you me, it is hard to get past but what my docs tell me is that when you are diagnosed with this, if you do not get breast cancer within 10 years, then you are most likely in the clear.  It is so important to keep the faith, stay close to your family and friends and get support everywhere you possibly can get it.  And by coming to this site, you have just widened your support group.  Please keep me in your thoughts and prayers and I will be in touch again soon!  Trish
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Avatar_n_tn
Trish - Wow, you have a lot on your plate! I'm so glad that your friends and family are there for you. Going through this 'stuff' sure is a wake up call, isn't it? I pray for the best for you...each step of the way. I know for all of us on this site, we are very diligent about our health and stay on top of all follow up visits. You've entered that world too. We're all cheering for you!!
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