Posted on: Aug 30, 2011 11:45AM - edited Aug 13, 2013 09:21AM by Chickenpants
Can we start a thread on ADH (known as atypical ductal hyperplasia)? There may be one already existing, but without a lot of hunting around, it's not easy to locate and may not be recent.
I'm 51 and have (had) no risk for BC other than being a female - non smoker, no immediate BC in my family, I'm fit, I exercise, eat well, maintain healthy weight, breastfed babies - all of that. I feel like with every diagnostic test I endure, I keep squeezing through the skinny risk gates and have now landed with the ADH diagnosis (only 4% of women with atypical cells fit into the ADH group) and now I am at high risk for BC of some type, although DCIS is the more common association, I am also at risk for invasive.
My journey started June 28th, 2011, very typically with an (every 2 years) screening mammo, followed by diagnostic mammo for calc cluster (2mm of concern, but 9mm spread). US found multiple cysts, but no lesion associated with the calc cluster, so on to the stereotactic VA core needle biopsy. Results showed ADH and I'm scheduled for a meeting with the surgeon on Sept. 8th and this will proceed a further surgical biopsy - I'm thinking excisional, but I can't recall. I will get clarification on the 8th.
Here's the dilema - from my extensive research, this conditon is like a ticking time bomb. It's likely that I will endure future biopsies over the next 15 years as my risk just shot up 4-5 times that of unaffected (normal) women. Anytime some more suspicious calcs are seen on a mammo, then the only way to determine what they are is by biopsy. I will likely be on a short recall for follow up. This for me, is more of a mental disorder. I have small breasts to begin with, so there will definitely be constant reminders - scars and chunks missing. The reality of this diagnosis is that there will be more to come - so stay tuned.... a large grey area indeed. I totally understand why women would opt for a preventative double mast in this case.
Anyhow, that's some of my thoughts on this diagnosis. I want to open up discussion around this and share links to interesting articles. Oh, I know my chances are good that I'll never have anything more than what I have today, but still... like I mentioned, it's the mental aspect of this one - nothing concrete and always waiting for the other shoe to drop.
Posts 61 - 90 (1,003 total)
Jan 12, 2012 10:20PM mystified wrote:
I wonder how such pretty little things we see on our mammograms...like little starry galaxies....can cause such harm?
NO RISK FACTORS...age 52...no family history of BC...large families with longevity...breastfed babes at 21 & 23, late period at 15, early menopause/ovarian failure/zero estrogen at 36...
But recent diagnosis of ADH and IDC (microcalcs on screening mammo)....SURPRISE!!!...
WHAT????... 5 yr. risk of only 0.9% compared to ave. of 1.4%....that means 99.1% chance of not getting BC...
Anxiety/depression issues for years, major anxiety over this, BUT...found the more I read & the more knowledge I acquired, the less anxious I have become about all this...not sure if that helps any of you, but it sure settled me down.
Don't fear the statistics....just as I was so unlikely to get BC....any of us could just as easily have the good fortune of being on the "good" side of the statistics too!!!
Jan 15, 2012 09:47AM pinkrose1958 wrote:
In regards to your Nov. 9th, 10th posting. In 2004 I had an excisional biopsy/lumpectomy for ADH borderline DCIS. I was screened every 6 months with mammogram, ultrasound, mri. Now, seven years later, I have not had anymore lumps...some calcifications which required more magnified views turned out benign.
I was screened at the City of Hope with a specialized MRI-Rodeo which screens one breast at a time. It's difficult to go have this done two days in a row, but I did. During this time I was told I have several areas of concern. To this date, I have not had another biopsy, lumpectomy. I did however take Tamoxifen for two years after my excisional biopsy. Could be the standards have changed for tamoxifen therapy.
Although at this point in my life, I feel that my healthcare provider is not monitoring me well enough. I have an HMO-Kaiser...they do not monitor well enough in my opinion.
If you would like to discuss this further, please private message me.
Jan 18, 2012 09:33PM jade127402 wrote:
I want to thank you for putting this forum up. I was diagnosed with ADH four years ago at age 44. I was referred to an onocologist and was put on the drug Tamoxafin but could not take this drug due to the side effects so I opted not to take it. I went in last year for my routine exam and they found very large calcifications and this worried me since they were not present the year before, my onocologist sent them to my surgeon for her to review. She felt it was nothing and I requested to at least have another mammogram in 6 months but she did not feel this was necessary. This is the same surgeon that didnt feel the first biopsy was necessary. So I will be going in March for another diagnostic mamogram so hopefully it will turn out to be nothing. But I really don't think I was asking too much to have another mammogram in 6 months even though the calcifications were large. What do you think?
Jan 18, 2012 09:59PM kittycan wrote:
honestly? I would raise hell. You need to be your own advocate. If you don't stand up for yourself, nobody will. See another surgeon for a second opinion, maybe you can get a female surgeon.
Personally, I would want that out, but of course, you need to play with a whole deck of cards.
Also, I'm kind of very pragmatic, having had a bilateral prophylactic mastectomy 3 months ago, after ADH was found in one milk duct. More was found in both breasts after they were gone. Getting my permanent implants next week, then it's only just a bad memory...
Jan 18, 2012 10:36PM awb wrote:
jade-----I'm wondering if by "large" you are referring to the actual size of the calcifications themselves, or do you mean a large amount of calcifications? Because there is a significant difference. Large calcifications (macro) are most often benign; it's the small (micro) ones that are sometimes problematic. (if clustered or linear). A large amount of calcs can be either, depending on the size of the calcs themselves. Even having ADH, you can still have other areas of calcs that are benign.
Jan 19, 2012 02:53PM vmudrow wrote:
kittycan - I'm glad you feel like you made the right choice with PBMX ( same here) Good luck with your surgery next wek - piece of cake compared to the PBMX!!
Jan 20, 2012 09:43PM SelenaRG wrote:
I am so glad this thread was started! Two years ago a lump was found under my right arm. Diagnosis ADH. Set up for MRI/Mammogram every six months by my oncologist. Last year another site was found (papaloma) with surgery in August. MRI done in Dec and report shows additional nodules adjacent to site of last surgery and list them as benign. So every year I am having one or two procedures which does make it quite a roller coaster. I was not raised by my bio parents but have learned that my moms sister died with bc and all brothers died with cancer. No idea what my mom died from. My dad died from leukemia with cancer in his family history. Medicare will not cover BRAC testing and I am left with the "waiting game". Any suggestions from those that have gone through numerous diagnosis of ADH and surgeries?
Apr 16, 2012 12:57PM momoschki wrote:
I am taking the liberty of reviving this thread, since I am now creeping up on my 2nd 6 month screening (an US this time) and I can feel the anxiety ramping up. From a rational point of view, I know the chances of finding anything bad are small, but then again, I keep envisioning scenarios of more biposies, surgeries, etc. I'm finding it problematic to plan anything after the Big Day (5/3), since I am always "what iffing" myself. Need someone to tell me that this gets easier with time. Even with meds (anti-anxiety and antidepressant), I don't seem to be able to talk myself off the ledge. I have a very over-scheduled May, with important events and a trip planned right after the US on the 3rd and I can already feel myself veering onto the proverbial ledge. Ugh.
Apr 17, 2012 10:04PM sparkynfiesty wrote:
Can I join the club? Not that I really want to in all honesty but alas here I am. I was diagnosed with ADH and other area's of atypia (not sure what that means?) on 3/31 after having a mammo, us, mri and then stereotatic biopsy. I was supposed to meet with my BS last monday to discuss an excisional biopsy but they cancelled my appointment. They decided to send all my info to an expert breast radiologist for a second opinion. I guess the BS and the BR messaged back and forth for a couple of days about my case and I'll find out Thursday what the plan is. I get the feeling this is not standard protocol so now I'm very concerned about why they felt the second opinion was needed and what else they are going to find. The only known bc in my family is my great aunt and her daughter on my mom's side, my dad's family is a mystery. I'm only 35 with 8 kids that I breastfed for an accumulation amount equal to almost 10 years. I'm so torn on how to feel. I can't imagine going through the testing and waiting every six months, I think it will make me insane. I'm not sure how I feel about PMX.. part of me thinks it may be the only way I sleep comfortably again but I'm afraid to do something so radical if it's not necessary too. I can't wait for some answers!!
Apr 18, 2012 08:47AM momoschki wrote:
Sparky, I think that a second opinion on your case can only be a good thing-- the diagnostic criteria for ADH as opposed to DCIS can be fuzzy and somewhat arbitrary. In my case, I had my slides analyzed three times! I was only dx'ed last year,so I am relatively new to this 6 month merry-go-round of testing, and yes, it is thoroughly infuriating. So hard to know whether this will ever turn into anything else or not. You should be aware, though, that if after the excisional biopsy, your dx remains pure ADH, very few BS's believe that a PBMX is warranted, particularly if it is unifocal. In any case, I hope you get some information soon so you can start the ball rolling-- it is waiting and not knowing that are the hardest!
Apr 18, 2012 06:37PM sparkynfiesty wrote:
Well the doctors office called today and they want me to cancel my appt tomorrow and go for another stereotatic biopsy before they do an excisional... reason behind it is they only biopsied a small section and because of the size of the mass and my smaller bust size I'd lose over a third of my breast in an excisional biopsy. I'm even more confused as what to do now.
Apr 18, 2012 06:58PM julz4 wrote:
I guess I'm here for now too. I was having pain, achyness, occasional itching deep inside my left breast. Half my nipple had also turned red. This all was taking place in my left breast in the same area of a stereotactic needle core biopsy. I'd had 4 years ago for micro calcifications seen in my second mammo at age 41. The past year or so I have had more achyness that would come & go in this area. Lumps that would come & go too. As not having a uterus from a hyster, but still having my ovaries. I'm never quite sure where I am in my cycle. Anyway the red nipple showed up on a Saturday with pain & visible lumps like a blocked milk duct. Nursed 4 boys....but it's been about 12 years since I did that last! Called my GYN on Monday even though the redness & lumps in nipple were gone. She didn't feel anything but was able to send me for a diagnostic mammo & US. 2 days later I had them & the findings were complex asymmetrical cystic mass in left breast at 1-2 o'clock 9 inches from my nipple near the axillary area. Was told to see a surgeon about a biopsy. Went back to my previous BS who did a US guided fine needle biopsy hoping it was more cystic & would just disappear. It wasn't! It was a solid mass. Results came back yesterday. Pathology report says....Atypical Ductal epithelium with apocrine features, cannot exclude atypical Ductal hyperplasia or intracystic Ductal neoplasm. BS's plan is to an MRI. I go in on the 24th. He is doing a Bilateral MRI with & without contrast. He wants to make sure nothing is hiding. So he will hopefully only have to go in once. He will be doing a wire guided incisional biopsy to take out the whole 10mm mass. Tiny which is good! Hoping nothing else shows up on the MRI or beyond with the biopsy. More waiting!
Apr 18, 2012 07:02PM Sherryc wrote:
sparky welcome even though I hate that you have to join us here. I can't tell you what to do but I can tell you my story. I'll try the short version. I was diag with ADH when I was 34 years old. At the time the Internet was not what it is now. My choice was removal or mammo's every three months to monitor. I choose to have it removed and go for yearly mammo's. Over the years I had a few times that I had to have diagnostic mammo's but then radiologist would say everything was OK. I have to say I really did not realize how high risk I really was so I really did not worry about it. Which I guess was a blessing. What I did not know is that I had very dense breast tissue which made mammo's very hard to read on me. So 14 years later at age 48 I was diag with IDC. It was in the same general location as the ADH, but mammo did not find it. Mammo showed suspicious calcification's that caused me to have a MRI. The MRI should the calcification's OK but a tumor that never showed on my mammo's. I have no family history of breast cancer. I have come to make it standard procedure for me to get second opinions. I won't go into that story but I learned the hard way that not all Dr's tell you what all your options are. Before I had my BMX I met with three PS's before I decided on who I would use. 2nd opinions will either make you feel great about your first Dr or make you question what they have told you. Even though you cannot always rely on the internet I find it gives me things to question and my MO loves that fact that I research and ask questions. Good luck on what you decide to do once you hear back from the Dr's.
Apr 18, 2012 07:16PM julz4 wrote:
Oh forgot to mention that a lymph node was felt by my BS's palpable exam which hurt. Also reviewing last years mammo views there was a visible node on my mammo. But because there was no changes to my mammo from the year before. The BS thought it was just a response to something my body was fighting. He will be looking closely at my lymph nodes in the MRI.
The waiting is hard. The first time was almost 3 months from yearly mammo to biopsy results. I also did 2, 6 month follow up diagnostic mammos. Watching some micro cals that couldn't be seen well enough to biopsy. Now I'm into this a month already. It won't be till the 30th that I get the MRI results & set the surgery date. After about a month of waiting into the 6 month recheck. I thought of it less & less. By the 2 end 6 month wait it was even less as the fist wait -n- see was clear. But everyone is different & we handle this in our ways! NOT easy for sure!
Apr 20, 2012 01:26PM sparkynfiesty wrote:
Sherry, thanks so much for sharing your story. I think it helps a great deal to hear what others have been through.
Julz, sorry you are joining us too. It sounds like you have a good game plan though and hopefully the mri comes back with nothing else and the mass can be removed and ruled b9!!
My appointment yesterday went well I think. The doctor was very informative and patient. She answered all of our questions and explained everything in detail. We were in with her for well over an hour discussing options. They were considering trying to biopsy the other end to see if it was atypical as well, if not maybe we didn't have to remove so much. I told them it didn't matter, either way I want it out. I need to know that the entire mass has been removed and analyzed. That's the only 100% way to make sure all the ADH is out and there is nothing more sinister hiding. I'm now waiting for them to set me up with the plastic surgeon to discuss my options. The BS is not positive if there will be enough tissue left to rebuild from or if I'm going to need some type of more invasive reconstruction. I already feel such a huge sense of relief that the decision is made and I have a plan of attack. If it comes back with cancer in there then I'll tackle it, if it comes back that there was only a tiny bit of ADH and the rest was just fibrosystic well then I'll be estatic and know that I did the best I could to protect my health. I will say that I'm kind of saddened to be losing my breast or, at least my natural breast. They played a big part in my role as a mom for so many years nurturing and feeding my babies. I guess it did it's job and it's ready to retire now. LOL
Apr 22, 2012 02:11PM micho0806 wrote:
I came across this blog because I am trying to figure out how I can prevent my ADH from turning into actual BC. It's been a battle I've been fighting since I was 28. I was so young that they sent me away from Radiology the first time I went for a mammogram; they told me there must be a mistake. Of course there wasnt, and my mammograms were always followed up with ultrasounds. My first biopsy was that year and it showed Radial scar and some other abnormal stuff but I was assured it wasn't cancer. Two years later, another lump, another surgery scheduled. I canceled. I have small breasts to begin with and wasn't really happy with the prospect of having more cut out especially when this "new" procedure, needle biopsy, was available. I made an appt. at Mass General Breast care center and have never gone anywhere since. That lump was diagnosed as hammertoma. I followed up with regular visits for years, until finally I was told I could continue with my yearly exams at the OB/gYN office. this last yearly exam showed a lump that my nurse practitioner felt (I had not). After a core biopsy & a surgical excision, I now have the diagnosis of ADH, radial scar, and some fibro changes (?) . I have a high risk appt. scheduled in a few weeks. Now I feel this big unknown is just looming over my head. It's scarey, but I expected it for some reason..
Apr 22, 2012 02:32PM julz4 wrote:
I hear you loud & clear Micho! It's not that we want this, nobody does! But deep down in my gut after the only other biopsy I had 4 years ago. I just thought this is the beginning for me & this isn't over by a long shot. I have just been observant & cataloged symptoms in the back of my mind till something told me to sit up & take notice! I have had the same BS since the first biopsy. He sees me every year within an hour of my yearly mammo. Does a breast exam, answers ?'s, concerns & then goes over my mammo that I just had done. When I had a problem early this year he was there for me! It's like we wait for the other shoe to drop! You know it will you just don't know when! I'm sorry this has decended upon you at such a young age! But I'm glad your being so proactive about it. Please keep us posted as to how everything is going!
Apr 22, 2012 02:51PM julz4 wrote:
Sparky.....that's the hardest part of waiting for me! I want a game plan so I can deal with the avalanche of major medical issues that has besieged my family this year! I'm with you in that you need to know they got it all out! If your gonna do it don't do it 1/2 hearty!!! I'm with you on the latter I nursed my 4 boys & there job is done! Don't get me wrong I would feel a loss. Our breasts are a part of a womans identity! It's not who we are but makes us feel that part! Take away a part & we loose just a little of ourselves. I have no uterus so it's another chink missing. It doesn't change who I am but......it does how in some way?!
Hugs to everyone for good path reports....well as good as they can be!
Apr 22, 2012 06:42PM Sherryc wrote:
Just weighing in on loosing the breast. After my last lumpectomy I decided to go forward with a BMX. I had been through so much and knowing that my radiated side might have a very difficult time I decided I was tired of being cut on and my breast have also done their job. Yes I want breast but decided if I had problems I could go without. Not my first choise but could deal with it if I had to. I was a very small A cup. I decided on TE's for reconstruction because I am a very thin person. I woke up from surgery with a little bit bigger breast than I went into surgery with. I go tomorrow for my first fill and am very pleased with everything so far. I have not grieved at all, seems I just feel a huge burden has been lifted and I have no regrets. Not sure how large I will go. I told the PS I wanted to be larger but not huge and look funny. He thought I would look best in a large B maybe small C so that is what we are going for.
Apr 23, 2012 02:42AM brendaks wrote:
Welcome to the ADH Club, Julz and Sparky **Hugs**!
I joined this club this past November with two areas of ADH found with a stereotactic biopsy, followed by an excisional biopsy which found rather extensive ADH in both areas. I can completely relate to your feelings of anxiety, anger, and frustration. I dread having to go back for my 6 month check up, even though we should be thankful for this technology because it helps the doctors determine the best course of action to help us. I've been told by some to think of these tests as my friends, but if that's the case I have some really mean friends lol!
Sparky, I hope all goes well with your upcoming surgery! I think I'd make the same decisions you've made regarding how extensive to go. I'm a large C cup and lost a fair amount of my breast that the excisional biopsy was done on since there were two areas, but I still have plenty there.
Julz, just to let you know, my BS ordered an MRI before my excisional biopsy because he said he wanted to make sure he was doing the right surgery and the right amount of surgery. However, my insurance company requires pre-authorizations for breast MRI because they are expensive (around $3,000 - $5,000). My insurance company denied mine saying ADH isn't a reason for a breast MRI because it hasn't been shown to save or prolong lives in clinical studies.
My BS said it's just been fairly recent that insurance companies are denying breast MRI's, so be aware you may run into the same issue, although I really hope you don't. He said he thinks I'm at high risk of my ADH turning into cancer, so he said he plans to do frequent monitoring so that if or when it does turn to cancer it would be found at a very early, treatable stage.
Best wishes to both of you!
Apr 23, 2012 08:50AM julz4 wrote:
Brenda.....Thank you for the heads up on the insurance. Very interesting too....Ironic maybe....My BS is getting ready to present his study of MRI before lumpectomy. He started his study back in 2003. My figures are going to be rounded to an approx. of what I can remember, not exact but close. But basically what his study compiled was some 450 plus lumpectomy's that he has done from 2003 to 2011. In the study he got around 330+ pre lumpectomy MRI's approved. Because he had the MRI prior to the surgery he only had to go back in a few times for clear margins. Where as the group of maybe 100 that were denied a MRI before the Lumpectomy he had to go back in maybe 30% due to dirty margins. Because of his study, which is the largest study ever done in the US for the use of MRI before a Lumpectomy. So he is able to detect where all the cancer is before he does his first & in most cases only surgery. Has been shown to save time, money, waiting, pain, & most importantly the worry, uncertanty for us women! You know the emotional roller coaster that is already bad enough without having to add to it more! Next week he presents his study to a big conference. He & his collegues are probably going to be written about in a major Medical publication. Not to mention the Insurance companies that are looking into his study. When he started his study he said he got approval about 50% of the time MAYBE for MRI before surgery. Now he gets approved 95% of the time! He has the data to back him up now. They did get it pre approved! I just hope it doesn't backfire. But I do trust him & he said he would call the insurance company personally for me to see to it! He believes this much in his study! Now don't QUOTE QUOTE me on these figures as it was round about figures but they are close by 10-20 plus or minus! I would love to get a hold of his write up & post it here! It may be months away though before it is published! I found it very interesting....somehow comforting! He really is here for Me & all the other women & men as he has done BC surgery on men too!
Thanks for thinking of me!
Apr 23, 2012 11:41AM brendaks wrote:
Very interesting, Julz - thanks for sharing that!
You may already know this, but a lumpectemy is the term used when cancer has already been found (usually on biopsy), and an excisional biopsy is when cancer hasn't been found yet but may be a possibility due to factors such as ADH. While the surgeries have a lot of similarities, they also have some differences. In excisional biopsies they don't care about clean margins (unless cancer is subsequently found in the tissue that is removed), and they don't test lymph nodes as they may in a lumpectomy.
The term you use above is lumpectomy, so I'm curious if your surgeon's research is only for women who have already been found to have cancer on a biopsy and will be having a lumpectomy, or if it includes data also for women who have ADH and will be having an excisional biopsy. The insurance standards are very different for these 2 scenarios.
Apr 23, 2012 11:59AM brendaks wrote:
"That's the only 100% way to make sure all the ADH is out and there is nothing more sinister hiding."
With ADH, it's actually not necessary to remove it all. ADH is a marker that we are at higher risk of developing BC at a future point, but if BC develops it may not develop where the ADH was, and even may develop in the other breast. There have been some studies done that have led to a suspicion that there is a hormonal change in our bodies that either leads to ADH or is caused by ADH, and once this happens we really can't turn it back.
The purpose of an excisional biopsy when ADH is found is to remove some of the tissue to see if there is some cancer mixed in. It's not necessary to get clean margins, and not at all necessary to remove it all.
My BS said that most likely I have many other small areas of ADH also, but they are not yet showing up on a mammogram. However, once the microcalcifications do show up on a mammogram in a certain type of clustered pattern they then need to do a stereotactic biopsy, then excisional biopsy again if ADH is found to rule out cancer being present.
I think it's a natural reaction to want cancer or precancer all out so that psychologically we can relax. However, ADH is kind of a no man's land where you don't have cancer, yet you're not normal either. Unfortunately, once you have ADH you may very well be in for a roller coaster of testing, surgeries, and emotional ups and downs. I don't like that I have ADH, but I'm starting to become at peace with it, and I realize that I still have a lot of good life yet to live. I don't look forward to going through all testing and such, but I'm coming to grips with that fact that this is now part of who I am.
Apr 23, 2012 01:31PM momoschki wrote:
It is frustrating to me that none of my doctors can give me any kind of estimate of how often ADH recurs, once it is removed. They all quote a lifetime chance of developing BC of 20-25%, but I am always curious: for the majority that never do develop BC, how many of them encounter more ADH down the line? I just hate to anticipate years and years of more biopsies and being progressively carved up. I read somewhere that there are no statistics on the recurrence of ADH because doctors do not compile records on this.
Brenda, I am interested in the research you refer to that cites ADH as most likely the result of hormonal changes (makes sense.) But I wonder-- if ones hormonal profile changes following dx, either naturally (menopause) or by means of medications/supplements, would the breast then be less hospitable to growing more ADH? I am referring to a significant drop in estrogen.
Apr 23, 2012 06:47PM brendaks wrote:
The reason they can't give you statistics is because there haven't been any significant clinical studies to determine how often ADH recurs. Clinical studies are often driven by profit potential, often by pharmaceutical companies. If there isn't a profit potential, then often those cases (like ADH recurrence rates) get ignored. BC needs to be treated and insurance companies will pay for that treatment, where as ADH doesn't necessarily need a lot of treatment, so BC is researched extensively whereas ADH isn't.
Also, keep in mind that the quote of a lifetime risk of ADH women developing BC being 20-25% means the chance of developing invasive BC. Far more than that go on to develop DCIS or LCIS, but again, there aren't any statistics on those rates that I'm aware of.
Regarding the studies that cite ADH possibly being associated with hormonal changes, I've read it in more than one place but don't remember the exact study. I know one is mentioned on a web site that I don't think I can mention here, where some experts from a large breast center in the US answer questions that people post in various forums. One of their experts is a BC survivor herself!
Apr 23, 2012 10:14PM julz4 wrote:
Brenda....sorry I only have a minute to respond as I work nights & am on my way out the door! But yes I meant Lumpectomy....Super short answer.....I think he wanted to make sure that nothing sinister was lurking anywhere before him going in....as there has been some issues with my nodes. Gotta run but I will post when I have some more time!