Just diagnosed with Atypical Ductal Hyperplasia (ADH)
Comments
-
OarsUp - good luck on Monday! Mine wasn’t as bad as I anticipated, and other than pain and a grizzly looking incision a week out, it’s a breeze
I’ll probably follow up with my BS either now or at the very least when I go in again in 6 months. Especially if, god forbid, something else is found 🙄
0 -
SarBar22. Glad you’re feeling well! Do you think I will be able to return to work by Thursday? Keep us posted on your pathology report - when do you get it? Or, did you get it and confirmed AHD?
0 -
SarBar22 - was thinking of you. Did you get your pathology report from your lumpectomy
My surgery went well on Monday. Tried going back to work but got exhausted and only worked a half day today. I have a follow up appointment on Tuesday.
0 -
Hey! Sorry, I actually just moved apartments so it was a crazy couple of weeks on top of the surgery and everything. The lumpectomy was actually for what she originally told me was a papilloma and then on the phone told me was a radial scar so not sure which it actually was, and then the final pathology came back as having found ADH around that area. She told me she’ll see me 6 months from now and then we’ll see what else’s happens after that! Hope you’re doing better!
0 -
OarsUp - hoping for good news for you (I think you said your follow-up is today).
SarBar22 - sounds like you get a break from worry for 6 months! :-)
I just came back from my appointment with the oncologist to talk about taking tamoxifen as a preventative. She said my personal, current risk over the next 5 years is only 2.5% with the ADH diagnosis (not sure what method she used), so we talked about holding off and revisiting in a few years when age pushes the risk higher. Going from a 2.5% risk to a 1.6% risk sounds kind of small compared to all the side effects I see people complaining about. But when it's a 10% risk, going from 10% to 2-5% sounds more significant to me. She did talk about the 5 mg low dose taxomifen for preventative - she said the study is sound and that she would definitely be willing to prescribe it - that the cancer risk reduction is the same with 5 mg vs. 20 mg tamoxifen for ADH. She said the smallest size pill is 10 mg, so she recommends cutting in half. If that's too hard, she recommends taking the 10 mg pill on Monday/Wednesday/Friday/Saturday. Thought it was interesting. But I also was thinking that I want to focus on losing the weight and getting used to more exercise before throwing tamoxifen in the mix - that it might be easier to do before introducing tamoxifen.
Her biggest recommendation as a breast oncologist was to make sure to do the MRI alternating with 3D mammogram every 6 months and to make sure I keep my yearly visit with the high risk nurse. So I'll go ahead and do that, though I might call ahead to radiology and ask about the type of contrast reagent. Just so that they feel the pressure from all women to make things safer.
She also wants me to fit in 3 hours of exercise over the course of each week, lose 10 pounds to put me at normal BMI, and eat more fruits/veggies. :-) I just signed up for something similar to crop-share, where they deliver a crate of vegetables once a week, and where "you get what you get" to force us to eat different types of veggies - this week's crate has beets, parsnips, broccoli, carrots, collard greens, radishes, cucumbers, lettuce, bell peppers, onions, and tomatoes!
0 -
Hello ladies. Yup, Muffkin78, today was my appointment.
I really thought we were going to move on to the next stage .. Tamaxofen. I have DCIS. Definitely need surgery again. The surgery type keep the old vs. look like a model) depends on some new genetic testing. I am BRACA negative but he says there are new genetic markers that are now available for screening. If positive, they are high risk and would perhaps make me a candidate to consider masectomy. Likely, negative. I will know more around March 13. If the tests are negative, I need another lumpectomy to get clear margins and they will place a radiation marker followed by 15 rounds of radiation.
I am good. A little shocked and numb - I really thought I was done. I know that I am so lucky to have control of this. Because of my family hx, I always said if I got cancer - off with them. I really do not watnt to keep going through this although I know my doctor is recommending the right standard of care. He is concerned about my family history but says I can lower my risk level to a normal person's without mastectomy. Not sure I even like those odds. Lots of thinking to do.
Muffkin78 - this was the first year I did the MRI - I think it is critical for people like us. I also decided, I need to make some lifestyle changes (food and exercise).
0 -
OarsUp - I'm so sorry - that sucks. I'm glad they caught it. Reducing risk level to normal sounds good - it sounds like there won't be a bad choice, either way.
0 -
Hello Everyone,
I feel like I am on a rollercoaster ride, but it has meant so much to read your stories and feel like I am not alone in this journey. I'm 39, married, with two kids under the age of 10. In December 2018 I began to have a heavy, tight feeling in my right breast. In January 2019, I would wake up with blood on my nightgown and on my sheets. I couldn't figure out where it was coming from. With pressure, nothing could be expressed from my nipple. I kind of pushed it to the side because I was going for my annual exam the same month. My ob-gyn started to do my breast exam, and blood squirted out everywhere. It wasn't until then I realized I had palpable lumps and they were tender. She told me it was probably a papilloma. I was then scheduled for my first mammogram and ultrasound.
The results were to just monitor the lumps and I wouldn't need another mammo for a year. A recommendation was made for a surgical consultation due to the bloody nipple discharge. I waited a few weeks for my doctor's office to get back with me, but I heard nothing. I finally contacted my ob-gyn only to find out my results had never been sent over from the mammography office. At that point I scheduled with a breast surgeon, but the appointment was weeks out.
In the meantime, I continued to have spontaneous bloody discharge and an achy breast. One night I bled so intensely, my husband called the breast surgeon's office himself to have my appointment moved up. Because nothing was coming up on the mammo or ultrasound, she scheduled me for MRI and core biopsy. The results came back on the continuum for ADH and DCIS, so I was recently just sent for another MRI with vaccuum-assisted biopsy.
I am still awaiting results. My nerves are kind of shot and I feel like I have experienced a gamut of procedures and emotions in the past 3 months. At my list visit, the breast surgeon mentioned lumpectomy with reduction or even mastectomy as a possibility. My mind is just reeling. I just need answers so I can start living my life again. As a mom of a 1st and 2nd grader, as well as being a teacher, I am pulled in so many directions and this time of the year is especially hectic.
I am trying to be positive, but it's all a bit much for me right now. My kids are too young to to really tell them anything. My husband is supportive in that he drives me to appointments, but as his own mother passed from ovarian cancer when he was only 5, I think he is living in the land of denial and avoidance. My own mother passed from complications from diabetes 10 years ago. I am a only child and although I have a close relationship with my father, it can be awkward to speak with him about my boobs.
I feel isolated right now, so I am so happy to meet you all. I am praying for all of us and I appreciate any advice you may offer.
0 -
TXteachermom, we're so sorry for the circumstances that have brought you here, but we're glad you've joined us. It can be really scary and confusing right now, but just know that you are not alone! You may find some helpful info in our section for Atypical Ductal Hyperplasia and Ductal Carcinoma In Situ (DCIS).
Please use this community for support and encouragement and keep us posted on how you're doing!
Bets wishes,
From the Mods
0 -
TXteachermom - I'm so sorry. The "waiting for results" phase seemed like the hardest to me. My kids are in kindergarten and second grade, and we didn't mention anything to them either (although my husband had to bring them to pick me up from a surgical biopsy at the hospital once, so they knew I had a small surgery). Is your work supportive of the doctor appointments? It must be hard when you're a teacher, to deal with doctor appointments. I, too, found it easier to get support on this site - even just reading about other women in similar situations made me feel calmer. I found the fears harder to explain to my friends, particularly because, technically, everything has been benign.
0 -
This thread has not been active for some time but I will see if it starts up again with my post! I was dx ADH on 6/3. I have dense breast tissue and distant family history, I see the medical oncologist in 2 weeks. I need to lose weight and exercise, so I am prepared for them to tell me that. I am confused about my pathology report, which does not explicitly state ADH, but instead says hyperplasia with atypical focus, which I guess is the same thing but never mentions ducts at all. I will have to ask the MO for clarification.
I just want to know how long it takes before I stop freaking out. I am so anxious now and can't stop thinking, "What if there is more to the dx than this, what if it isn't just ADH, what are my actual chances of getting cancer?' I am nervous and feel like my body is now completely outside of my control.
0 -
I had ALH 10 years ago, and honestly didn't think too much about it. My BS recommended an excisional biopsy, but I thought long and hard about it, and did a fair amount of research. There's about a 20% probability of finding something a little nastier nearby (which they did not). I can tell you it's important to keep up with your regular mammos. I was about 18 months late when I got my 2016 dx. While I don't think it would have changed the dx, I do think the area involved would have been a lot smaller. I'm not sure I got the message back then that I was at increased risk for BC. All things considered this is not a big deal. Just do make a point to stay vigilant going forward.
0 -
onceabird - I felt better by the time I spoke to the oncologist. I went ahead and had the excisional biopsy, which didn't reveal anything further. And certainly now (after 6 months), I don't think about it every day. Or even every week. Or even in the past month. I did change my diet and exercise, but that feels like a lifestyle change now and not something that reminds me of ADH. I had my 6-month MRI a week or two ago, and didn't feel apprehensive until I got to the appointment (though they scheduled it within 24 hours of the time I called for the appointment, so there wasn't any time to think about it). And even that turned out to be easier than expected.
0 -
Onceabird I was diagnosed about a month after you. Did you have genetic testing at all? That's what is giving me anxiety right now. I'm going to be having surgery in September to remove a larger area where they found the ADH. Anyway I thought I would check in and see how you're doing.
0 -
I hesitate to reply to this thread dont want to scare anyone, but in my case my adh/alh at 1-2 oclock was pointing to ILC/lcis at 3oclock. The cancerous ILC area only showed on 3D mammo as a small area of distortion not a mass, nothing showed on US and the ILC did show as enhanced on MRI. MRI showed nothing special in the way of enhancement around the adh/Alh. I am heterogeneously dense also and have bc family history. Just keep up with screenings and be sure to get 3D mammograms. This was my first one (3D mammo i mean-good thing!!! That said the 2d views did show my adh/alh as they were microcalcifications. Dont want to scare anyone but this was the first time any mammos picked up anything of concern. I am 46 years old. Youngest in my family with a bc diagnosis by 12 years. I thought I had more time. My aunt however had adh ten years ago and is fine since as far as I know. I got genetic testing-waiting for results prior to surgery. My mom had bc and was negative for all mutations. The geneticist told me despite family history, only 10-15% of breast cancers are due to hereditary genetic mutation and she doesnt expect me to have one based on my moms results and lack of cancers on my dads side. I asked why see bc so much in certain families then who have no hereditary mutations, and she said there is a common exposure to something environmental maybe, or factors we do not yet know. Besides my mom, most of my bc family history was beyond my mothers generation....my grandmother and her sisters and a few cousins on my grandfathers side.
0 -
I had adh show up last January. I just had a pet/ct for something else and my breast lit up. They did an MRI and saw nothing. Does anyone know if ADH lights up on a Pet scan? I have extremely dense breasts and mammograms never show anything.
0 -
definitely do not feel bad for worrying whether or not you've had an actual diagnosis. That's absolutely normal. I too am a “special case" as you put it, though they call me their “problem child" in my surgeons office and my breast clinics office lol. A title I do NOT want!
My experience with my girls was when I was 38. my mom had just finished up her radiation treatments after having been diagnosed with DCIS or stage 0 BC. Her first symptom was bloody discharge. At 38 I began having a bloody discharge as well. So we kinda freaked given what she'd just been through. That ended up thankfully being a benign intro ductal papilloma. Whew right?!
A cpl yrs later... And here's where things get REALLY weird! I woke up one morning and my nipple felt strange like pressure or something. So I looked and it was kinda red and standing on end looking like a pimple ready to pop. I pressed around on it and lots of blood started coming out. I was SHAKING! I think i was 41 or 42 by this time. I ran to get paper towels in kitchen and tried to stop the bleeding but I saw something else through the blood. I squeezed a tiny bit.... and.... BRACE YOURSELVES LADIES.... Something came OUT of my nipple with tons of blood! By this time I was ready to pass out from being frightened. I managed to keep enough of a level head to get the tweezers and a ziplock bag and put this pink mushy thing into it.
I called my mom sobbing and told her what had happened. She said get it immediately to the dr.
so i took in my own biopsy, only to see several medical professionals mouths DROP. Which made me more anxious because ofcourse NOBODY had seen anything like this before.... lucky me.
Pathology came back on that as a papilloma fragment with ADH. Now I was REALLY freaking out!
my surgeon ordered an MRI. Ofcourse it revealed ANOTHER papilloma in the OTHER breast too.
so at that point I'd had one removed in left and tissue pop out on left and now one in right too. Had both removed same day.
Fast forward a cpl more yrs. last January TWO more babies! (Papillomas) Both in right. My insurance was going to end the last day of January. So I was able to squeeze in a biopsy... ON the last day of January. 😬
Both came back benign papillomas so I thought ok that bought me some time to get my insurance going again AND time to finish preparing for my sisters wedding here on our family farm where I live. She got married in October so after that was over i decided i better start the boob stuff back up again so we could check on those two papillomas. I got my yearly MRI and a diagnostic mammo... my two yearly staples now unfortunately but thankful they're available. All sorts of junk lit up in mri. IM LIKE GREAT!
Went in for ultrasound and thankfully one spot was a cyst, but sure enough one was NOT. Another suspected papilloma! In right as well. Thankfully the 2 from last January measured the same and looked the same. So I thought ok, I got this... had biopsy on the new one and was sure I'd be told I had my 6th papilloma. Next day nurse called and she was literally stuttering... which made me EXTREMELY nervous! 😳
She told me they couldn't diagnose it. I'm like huh?
she said ya were scratching our heads too because yet AGAIN they'd NEVER had this happen before. 🤷🏻♀️
she said the report said the tissue didn't survive processing. I said all 4 samples?!! Yes she said apparently so. She said we were all sure doc got good samples. Doc was sure too. Luckily my cousin does my mammograms up there so I've grown to know all her co workers and I get all the small details lol
She said radiologist recommends getting that whole area out. I said ok i was getting the 2 from last yr out anyway so what's one more right?! 🤦🏻♀️ I sorta wanted to know going into surgery for the 3rd time though that it infact was another benign papilloma. But no such luck this time! Back in November they had sent my tissue to a new risk assessment study. They tested my tissue against 4 different cancer markers. I didn't score well!
I was NEVER a good test taker! Lol
5.5 and above was considered high risk which Ive already been considered forever given the ADH and my moms cancer and these papillomas which my surgeon calls papillomatosis but my radiologist says I'm not even close to. I scored a 7.3. The people in their study 5.5 and above had a 72% chance of diagnosis within 5 yrs.
In my surgeons words “THATS PRETTY DAMN HIGH"!
She also said she doesn't know if she believes it or not but that after this surgery, she's sending me to Atleast talk to the oncologist to discuss taking the tamoxifen which up until now I've refused when my surgeon has mentioned it. So i said ok, I'll talk to her. My THIRD breast surgery at now 45 is a week from TODAY. Sadly, it almost feels routine to me anymore, I don't even get nervous anymore about MRI's or biopsies... and not near like i used to about surgery even. But IM OVER IT!
after 7 yrs. DONE. So I've been researching my butt off!
I'm a get to the root of things kinda gal. I don't just do whatever one dr says... after several say the same... maybe. I get myself INFORMED ALWAYS.
Don't really WANT to take tamoxifen (my moms STILL on it 7 yrs later). Definitely really don't want a mastectomy if I can help it. The stats from that study also said ninety some percent of being diagnosed within 19 yrs. yikes.
Ive asked my Obgyn, my surgeon, radiologist, anyone i come across in the medical field... 1. If a hysterectomy would STOP these papillomas and 2. WHAT CAUSES THEM! I've gotten the SAME answer to BOTH questions
“Maybe & We really don't know".... 👎🏼
That's NOT good enough for me. I'll go ahead next week get these 3 removed pray pathology comes back ok and I'm actually picking up ALL my records from the very beginning to now tomorrow and I'm looking for a great integrative doc as well as a great second opinion doc to share my case with and get more takes on things BEFORE I decide which path to take... if any.
After that study i too feel like I'm simply waiting around to be diagnosed and that's just not acceptable to me. i know what Gods called me to do here on earth, I'm actively beginning the process of all that and because of that i know that I'm being hit hard with junk from the evil one to try to stop me from my calling. It's just not possible though. Im gonna follow Jesus wherever he leads. I know he's got me. I have zero doubt about that.
He's going to provide all the information and the people i need to get through this and get to the bottom of.
I might also mention at 38 i had begun noticing signs of peri menopause. My mom was a early bird too. And now at 45 I'm HOT into it! Like MAJOR! My mom was fully into menopause by 50. Done. I'm headed there!
So do I think hormones have a lot to do with the development of papillomas? I believe yes. Do i believe they CAUSE cancer? No. NOTE: My mom had her hysterectomy AFTER her BC and surgery//radiation and starting tamoxifen. She's 7 yrs out now and been PERFECTLY clear! 🙌🏼 She's 68 now. But looks 50. Lol
I'll be your special case sista! 😅😂0 -
I am having a lumpectomy March 9th after they found ADH on my MRI. There are so many questions I wish I had asked my surgeon and some I'm sure I haven't thought of yet. Like, do they take out the whole duct, how large of an area will be involved, what will recovery be like and what do I need during it. It's so hard to get those answers now. I wonder if I should try to make another appointment before the surgery. Any tips anyone?
0 -
I’m a worrier myself. I’m just sick I didn’t get more information. I’m going to have a lumpectomy for ADH, I wish I would have asked more questions. Knowledge about any condition is a good thing.
0 -
veehow. They will just excise the spot where the adh is and try to get clear margins around it. The surgery is not hard to recover from at all. I went back to work after 1 day. If you have questions, maybe you can e mail them and get some answers.
0 -
I understand how you feel. My head was spinning with information at the time of my diagnosis. I kept hearing “It’s not cancer, but...”.
I had a lumpectomy for ALH. Much of the area was removed during the biopsy and then the rest along with surrounding margins removed during the lumpectomy. The recovery wasn’t too bad. Felt sore for about 3 days, nothing Motrin couldn’t handle. I had it done on a Friday and went back to work went back to work on Monday, but left 1/2 day. Took a lot more out of me emotionally than I thought, but I was feeling pretty normal at a week out.
Best of luck and be kind to yourself
0 -
Thank you. I will e-mail the surgeons office if possible. It is hard to get any more information by phone
0 -
Hi AlI,
I have already posted a few times, hopefully in the right places and not asking the same questions. I have only seen a radiologist and surgeon. I am waiting for a lumpectomy. I have very dense breast tissue.
I’m wondering what treatment and doctors have been suggested to others. I thik I would like to see another specialist other than those two.
I hate to think of going for extra mammograms when they haven’t found anything but cysts with them and I don’t want the extra radiation.
I want to be prepared to ask my surgeon and pathologist about these thing when I see them.
Risk level, treatment going forward....other then waiting and having tests done. Looking forward to getting the lumpectomy done and finding out more.Hope everyone is doing well‼️
0 -
Hi VeeHow
I was diagnosed with ALH (Oct 18), I had excision biopsy, recovery wasn't bad. The Dr wanted me to take tamoxifen, I refused. Plus, I have history of leg blood clots. I am on 6 month mammo/mri surveillance since ALH/ADH is considered high risk. You could always request mammo/ultrasound or just do ultrasound as your surveillance. I also have HD breasts, and typically always get call backs. One breast specialist said my boobs look like swiss cheese from all the cysts with ultrasound. Risk - will depend on your family history etc. I think mine is at 30-40% in my lifetime (one aunt with BC at 53)
I have implemented ALOT of lifestyle changes to try to help reduce xenoestrogens in my life, I have stayed consistent with some. I also have read ALOT of books and listened to podcasts etc. Please PM me if you would like any of the things I have implemented/books/podcasts etc.
0 -
hello, so I have architectural distortion 8cm 3 nidi and 7mm group of amorphous calcifications. Can someone explain what that is?
I did have a biopsy and the nurse called and said that it's atypical ductal hyperplasia and the dr will explain more at my next appt which isn't until 2 more weeks. Meantime I'm to have an MRI. Thx
0 -
XsiennaX, we welcome you here. When is your MRI. The waiting is the worst, we all understand. If you find it helpful, read more here: Atypical Ductal Hyperplasia.
Keep us posted
0 -
I have also just been diagnosed with some kind of hyperplasia in the right breast, I have DCIS in the left breast that I just learned is multifocal. I just received the results yesterday late in the day when I was at the airport so I don't know the details. However, I was told by my surgical PA that it could be controlled by endocrine therapy and excision was not needed. That said, the radiologist is recommending a MRI, which I now need to schedule. The surgical PA was negative about the MRI idea - she said it was ordered because they also found that my DCIS is multifocal on the left side and wanted to do additional checking (not because of the hyperplasia in the right, per my understanding), and said that the MRI causes a lot of false positives and will probably lead to more biopsies and needless anxiety for patients (I have had 3 biopsies at this point). I'm fine with more biopsies. But all this said, I am starting to feel like my small breasts (36A) are simply going bad at this point, and starting to consider the mastectomy route, which I have avoided up until now. The more they have to cut out from me, the less breast tissue that i have, which is very little to start. And with the side effects of the endocrine therapy, I'm starting to wonder if it's worth trying to save the little breast tissue that I have.
Has anyone had the experience of a lot of false positives from the MRI? Was the MRI helpful in pinpointing any additional issues or lack of new issues?
0 -
I had MRIs for several years. I never had a false positive. My breast tissue was extremely dense so MRI was the only thing that could see anything. I decided on the prophylactic mastectomy after ADH\ALH was discovered and also due to my family history. My breasts like yours were up to no good. I've never second guessed the mastectomy decision. I was glad to have them gone.
1 -
I’m 42 and have been diagnosed with ADH C3 by FNAC.
I’m scheduled for my excisional surgery next week to have a better picture of the lesion (a mass of 5mm in my L breast) and rule out DCIS or IDC.
I’m really scared and setting my mind to have prophylactic double mastectomy.
I have a very dense breast with multiple fibroadenomas and cysts.
So tired of this stress of monitoring and wait that something bad could happen.
Did you regret your mastectomy? Hiw was the post surgery? Any complications?
0
