We are 193,623 members in 81 forums discussing 143,537 topics.

Help with Abbreviations

All TopicsForum: High Risk for Breast Cancer → Topic: ADH Club

Topic: ADH Club

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 30, 2011 11:45AM - edited Aug 13, 2013 09:21AM by Chickenpants

Chickenpants wrote:

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.

Surgery 9/22/2011 Lumpectomy: Right Dx 12/4/2011, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 12/23/2011 Lumpectomy: Left Radiation Therapy 4/10/2012
Log in to post a reply

Page 27 of 28 (818 results)

Posts 781 - 810 (818 total)

Log in to post a reply

Jul 7, 2017 05:30PM scoutyboy wrote:

I am thinking of you both, Sherr and Mariita. This is a great place to get affirmation and support. Thank you for sharing your stories.

It does seem that opinions by surgeons/oncologists vary greatly. I was diagnosed last fall with ALH and something just short of ADH (some kind of atypical changes but not full blown ADH) and no BC. Yet, my surgeon suggested bilateral MX as a preventative measure given my high risk status (ALH, my mother's BC at 55 years old. atypical cells). Also, I imagine, they're never 100% sure they got everything. I haven't had genetic testing but I'm on Evista (postmenopausal). I haven't experienced any side effects from this medication, but since it's preventative, I forget to take it! I'm also doing the bi-annual screenings with MRI/Mammo. I agree, the more info you have the better. I, too, prefer to take an aggressive approach. It's a personal decision. I'm not sure about bilateral MX just yet, but it's helpful to hear what others are thinking. Thank you for sharing your decision making thoughts.

All the best to you both. I hope all goes well.

Log in to post a reply

Jul 7, 2017 07:16PM Kaso wrote:

Scoutboy I wonder where you are from? It bothers me so much that my renowned surgeon recommended not removing the breast even with adh and cancer cells and your renown surgeon is recommending a full mastectomy

Why are you taking Evista? Is that by chance addressing extra estrogen in your breast? Was there a recommendation for radiation of the breast? After my current diagnosis I went for genetic testing being an Eastern European Jew. They rushed the brca 1/2 results and both were negative. Because I had a cancer diagnosis receptors were done. I'm her negative, 100% estrogen positive and low positive progesterone.

Unlike you there is no known breast cancer history. Sherr

Dx 7/5/2017, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Jul 7, 2017 09:21PM scoutyboy wrote:

Hi Sherr,

I'm from Minnesota. Sorry for not explaining better. I'm sorry you feel bothered by the discrepancy in opinions between the two surgeons. But I think the fact that your surgeon had a different opinion than mine was not necessarily because one is right and the other wrong, but that there's a wide range of opinions, philosophies, opinions by surgeons. I don't think there's an absolute correct answer. Personally, I think mine may be too extreme. And each person's situation is unique. So I trust and hope your surgeon is considering what's best for you. But it comes down to our own judgment, ultimately.

To clarify, my surgeon did NOT say I "should" get a mastectomy, i.e. there was no urgency; in fact, she reassured me that the news is relatively good given no actual ADH or DCIS. But she recommended the mastectomy IF I wanted to lower my risk factor down to normal women. Apparently, there is still a chance of developing BC even after mastectomy, but a normal amount of risk. And you may have read other posts here where high risk people have elected to get a mastectomy as a precaution, so I think it's an option for some people. Ultimately, I was grateful for the surgeon's willingness to answer a lot of questions and go over all the options with me. I hope you can get all the information you need from your surgeon. Or perhaps get a second opinion? I'm taking Evista as a preventative. No recommendation of radiation or anything else other than the 2xyear screening.

I wish you the best.

Log in to post a reply

Jul 7, 2017 11:46PM MariitaM wrote:

Hi Sherr, no I never went through fertility treatments.

I actually don't fit in any mold. I was never on birth control pills, I did not get my period early and I am not considered directly linked to having BC history as it was my aunt that passed away and dealt with BC and not my mom or sister.

All these tumors, with the exception of 1 fibroadenoma, have come out in a matter of 6 months which has me very puzzled.

My doctor says it is normal, for fibroadenomas to show up when one goes through hormonal changes. I have felt every time I've gone through hormonal changes though. This last one, exactly at my 40th bday has been the toughest. As much as I've researched, I do think I got breast disease because of my hormones and not related to anything else. I cannot confirm that though as the doctors have not told me this. I keep forgetting to ask them, but I will next time.

I cannot imagine the pain this surgery must of left and in addition the pain having to wait but hold strong, I'll be praying for you and may God bring healing to you! Please keep us posted on the results!


Log in to post a reply

Jul 8, 2017 12:01AM MariitaM wrote:

Thank you scoutyboy! It does sound relieving to hear that every doctor, who truly cares for their patient will give us their opinion as to how they see and study each case.

Most importantly it gives people like us, who still have to wait for results a better idea of what's out there.

It does boil down to how much study and statistics are truly out there and how much research on ADH is given for all of us to make wiser decisions along with our doctors. All I know is that each case is different and as long as we study our case, ask questions and are proactive, the ultimate decision we made will be the best one with what we have.

I'm happy to know that you have more peace of mind now that it's all gone. I'd be too. Keep us posted on to any changes. Hopefully never again though, only blessings! Thank you for your well wishes.


Log in to post a reply

Jul 12, 2017 07:46AM Sweet_Pea wrote:

It's good to have all of your stories, because up until a couple of weeks ago, my only option seemed to be a mastectomy because of the size of the área affected by ADH in comparison with the rest of my breast. And they wanted it out, to make sure that there was nothing else lurking in there.

I understood, but I was shocked and scared, to tell the truth. I was expecting a lumpectomy. So when this past week both tumor committees who are following me decided to get more information through testing before taking such an aggressive approach, I was relieved and thankful. I'll face the mastectomy if I need to, but I'm all in for more testing to, as my new gyno who specializes in oncology puts it, "find out exactly what those cells are doing in there." She says she'd like to know how active they are, how quickly they're changing (tomorrow will be a second MRI after a month, but not another biopsy, which I suspect might come soon), etc. Then they can decide whether they put me on a course of tamoxifen and check my progress after 3 months, for instance, and only do a lumpectomy, or whether it's really necessary to do a mastectomy.

I agree with you guys who say that the more information we have, the better, especially when it's about our own particular cases.

first ADH dx 6/2017, 2nd dx DCIS 7/2017 Dx 7/13/2017, DCIS/IDC: Mucinous, Right, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 8/29/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 12, 2017 07:56PM MariitaM wrote:

Hi Sweet_Pea, I'm sorry to hear about your case. I hope God gives you guidance into the hard decision you have to make soon. I'm curious to know how big is the area of your ADH? I thought that ADH is the beginning of formation of pre cancerous cells. I have read they are so similar to DCIS that the reason for surgery is to rule it out. How can you have pre cancer cells in a large area without it becoming invasive? I am confused as I thought ADH affects a small area because it is the beginning. If you or anyone can walk me through it, would really appreciate that.

Also, wanted to update you guys. I got a call from my doc today as I have my surgery scheduled for this Monday 17th. She told me that as she and my breast surgeon discussed my case, instead of removing 5 masses, which is one papilloma on each breast, 2 fibroadenomas on left plus a PASH on also the left, to only remove 3. The reason they gave me was because my left breast, since has the 4 masses to be removed, will completely deform. I wasn't prepared to hear that as they had told me prior that i would see a change but not deformity. There is no reconstruction on tumor removal plus I truly don't have the means to pay for an implant. I guess I feel sad because we are used to seeing ourselves in the mirror and to know that will change is hard, but I also know that if I leave the rest in, I'll have to be monitored every 6 months. I've been monitored for the past 6 months and now all this happened. I spoke to my husband and my closest and we all agree that health comes first and the rest takes care of itself, if God allows, in its time. I am considering just leaving the PASH because there's not much info out there only that they are benign and that they don't become cancerous. Do any of you know or have more info on PASH? I also went to read on the forum for benign breast conditions and PASH but there's not much there either.

Thank you so much to all who have responded as we are all in some way or the other walking in the same path.

Mariita

Log in to post a reply

Jul 23, 2017 12:57AM mystic88 wrote:

Hi everyone,

New here and new to the fun that comes along with fitting into this group. A little background- I am 29 and was diagnosed with ADH earlier this week. I felt a lump on my right breast a year ago, GP told me to watch it as "scary things" in females my age are "almost non-existent". And so I did. Over the last 3 months however, I felt the mass triple in size. I went to a new gynecologist who scheduled me for an ultrasound and immediately got me in for core biopsies. A few days later I get called in to review the results in person and sure enough, ADH, high risk. I do have family history and I am currently waiting on genetic test results as well as getting a consult scheduled with an onco surgeon.

Even though I know this is not truly cancer, I am pretty terrified. Based on what my gyno said, it seems that I have a much higher probability of developing true BC given my age and degree of tissue changes. And now I have a new mass on my other breast too.

I try to be strong, to focus on work, and to take it one day at a time. My husband keeps telling me to stay calm and that everything will be ok, and I just want to scream that no, everything is NOT ok and that this sucks!! I was just diagnosed with Chrohn's earlier this year, finally got my epilepsy under control a few years ago, and now this. It is never ending and I just want a full body transplant.

Thanks for reading my rant :)

Log in to post a reply

Jul 26, 2017 11:27AM Lmh8203 wrote:

Hello everyone,

Thank you in advance for reading my post. I am new here.... A little background, I switched PC the end of April and he asked if I ever had a mammogram, I said no, I will only be 37 next week! He said, well, some of us drs like to get early baselines at 35 so I said that is fine, the next week I went and had my first ever mammogram. I got a call 2 days later that I needed to come in for an ultrasound because they found a suspicious spot and needed to look at it further. After US they found it was a solid nodule and scheduled me fore a core needle biopsy. I had that and the nodule showed it was benign but the cells that form it are not. So I was diagnosed was ADH :(. I met with surgical oncologist and surgery was scheduled for lumpectomy. I am 2 weeks post op from lumpectomy (still in pain, more days than not ).... I met with Dr last Thursday to go over pathology and thank god everything came back benign. But I am still scared,..... I don't feel relieved the slightest, is there something wrong with me?? I have just been told I do no have BC but something isn't sitting right... I am scheduled to see the oncologist to discuss preventive medication but reading the horrible SE I am not sure I want to go this route, I have no idea what to do or think. Everyone keeps telling me I am fine and not to worry but ADH never goes away does it?? I will always have in the back of my head, is it this time or not... mammograms every 6 months sounds exhausting.....

Am I wrong to think like this? In the last 6 weeks I have underwent emergency gall bladder and a lumpectomy on my left side. I am doing a thyroid uptake scans today, my thyroid as been over active for a while and we are tying to get it straightened out. I feel terrible always... I suffer from severe depression, I took myself off all my meds, it will be almost a full year of managing it on my own and was doing fine until all this other stuff starting coming up and not I feel like I am drowning and no one can save me...

Thank you for listening to me, I have all these people that say they are here for mebut no one truly understands how I feel or what I am going through and it sucks!!

XOXO

Log in to post a reply

Jul 26, 2017 01:36PM Moderators wrote:

Dear Lmh8203,

Welcome to the community. We are sorry about your worry and all that you have been through. We are glad that you reached out to our members. As you can see from this topic there are others who share your situation and concerns. We are sending you a link to information on our main site about ADH and perhaps it will help you to develop questions to pose to your oncologist about prevention and the risks and benefits. Stay connected here and reach out to others with ADH possibly via PM for their thoughts as you have done here. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Jul 26, 2017 04:23PM wonderwoman101 wrote:

Mystic and LMH,

I'm sorry you've found yourself in this community. I can relate as I'm also 37 and we found my ADH by accident. I also have PASH and ALH and from what I understand, they don't really know exactly what my risks are of getting BC in the future. I also have anxiety and have dealt with depression in the past so I understand how hard this can all be!

There are a few things that have helped me find more peace in the situation. 1. Exercise. I find myself having less anxiety and depression and just feel better in general when I take my Pilates and Spin classes. I used to run and weight train 5-6 days a week until I found out I have a herniated disc so that's out for now.

2. Realizing that beyond being healthy (exercise, eating well, taking care of my body) I don't really have any control about what's going to happen to my boobs! This has been hard and I still struggle with this sometimes. In fact the past couple weeks it's been on my mind a lot as I can't tell if I have something weird happening with my nipple and of course my mind wanders to BC.

3. Trying to stay involved in my daily life. If I have a lot of free time, it leads me to worry more. If I focus on being present with my kids, and seeing my friends, and having meaningful conversations with my husband it really helps me.

4. Lastly, one of the biggest things that's helped me has been talking to other people who are in the same or similar boat. I had people in my extended family tell me I was overreacting because everyone has pre-cancer. They don't understand our situation and I choose to not discuss anything with them because it just frustrates me.

I hope any or all these things are helpful to you as well. Know that you are not alone!! We are all in this together!!

Best,

Christiana aka Wonderwoman

Dx ADH, ALH, FEA, PASH after excisional biopsy on Dec 28, 2016
Log in to post a reply

Jul 27, 2017 04:28PM Lmh8203 wrote:

Thank you so much for your reply.... it helps so much to talk to others that feel the same way as me!! I as reading though your reply again and 1. I wish I had the energy to exercise. With my thyroid being so out of wack and recovering from two surgeries in 6 weeks I can barely get up some days. I was doing so well until all this hit me, its like I have this black cloud over me and it wont go away.... 2. You are right, we don't have control over anything and its so hard to wrap your head around 3. I have three kids so I am trying to stay involved in their daily lives the best I can. I put on my happy face and pretend I am fine every day, some days are harder than others. 4 thank you again for replying and talking with me, I have found a friend through the BC support group on Facebook and she is on the other side of the US so we talk daily on messenger. She has been a god send, honestly, I don't think I could have gotten through the last couple months without her!

I had my thyroid uptake scan done yesterday and today and the results are already back, I have no clue what they mean, I go on Monday morning to talk to the dr and figure out where to go from here but its going to drive me crazy not knowing what is going on, lol...

Hope you have a great weekend!

XOXO,

Lisa

Log in to post a reply

Jul 27, 2017 05:09PM mystic88 wrote:

lmh:

I completely understand how you feel. I have always been an active person (I was planning on my fourth Ironman and first 100 mile race) this year and now I barely have motivation to leave my bed.

Knowing you have no control over what is happening in your body really sucks. After spending so much time thinking and crying and anguishing about it, all I can do now is laugh.

I do agree with you in that reading stories in this forum and talking with people going through the same thing really helps. Even though we don't belong in the "scarier" groups the process and possibilities are scary all on their own. So having someone to speak to who is going through the same thing really puts me at ease.

Wonderwoman:

Thanks for your kind words and support!! I too have issues with my family- some freak out more than even I am, while othere tell me I am being crazy and that I don't need surgery at all. It makes a tough situation even more difficult.





Log in to post a reply

Aug 7, 2017 03:09AM Lmh8203 wrote:

Hello friends....

I need someone to talk to.... not sure if you nave read my previous post, I know a couple have an have and replied and thank you in advance for reading this. I am at a loss right now...Last week Monday I saw the oncologist to get his opinion of going on Tamoxifen. I really really liked this Dr. he was so caring and compassionate, I broke down in my appt, I am not going to lie, My husband was with me and I was just telling the Dr what I was thinking and what I have talked to my husband about the last couple weeks and Iscared and have no idea what the right decision is to make about taking this med or not taking it, He did all the calculations on the American cancer webpage but I still have questions and concerns so I am going to see a breast oncologist hopefully in the next couple weeks. My calculations came back very low for developing BC in the future but him just pitting in my age, and pregnancies, age of first period, if my mother has BC, and the only family history we have is my aunt on my dads side along with her aunt on my dads side as well but the Drs don't see that as a concern.

I am just having a really hard time understanding everything and figure out if I should take the med or not... I am a red head and everything they say is so true about everything, so the side effects scare me because I just know my body and I know that I will experience some of them. And my luck probably all of them. I am currently on HRT since my hysterectomy in 2011 so I would have to go off of that and that scares me.

As you can see I am a worrier, and I don't know how to change that... the what if's are scaring the heck out of me.... My aunt and I talked and she is on the Tamoxifen right now and she would suggest me to go on it as well if that's what the Drs are telling me is best.

Then I have those people that say, I can't believe they are recommending this med just for ADH... AHHH!!!

So anyone out there have any insight of what they did with the Dr saying its up to you, here are your percentages its up to you to decided what you think is best....

Parts of me just want to say screw it and if it comes back it comes back (being another solid nodule) and another surgery, but of the meds will give me certainty that it won't come back then.... what??

I have three kids I need to be here for so I don't have any idea what to do!!

I'm sorry, I feel like I just went in circles but that is how my brain is working at the moment. Thank again for reading and I am open to any suggestions or recommendations you may have for me.

XOXO

Log in to post a reply

Aug 7, 2017 10:22AM mystic88 wrote:

Hi Lisa-

I understand your frustration and uncertainty about this situation. Unfortunately for us, there is no clear cut treatment plan... there are so many variables to consider that making a decision feels more like a shot in the dark. I have been breaking down and just like you. I just met with the BS last week and left with more questions than I had going in. It doesn't help that my husband keeps telling me everything will be ok and that I have nothing to worry about, over and over again. He almost seems dismissive of the situation. Whether he is doing this to try and not show concern around me or because he really believes it, I don't know.

In terms of the Tamox, I really do not have experience with it. My aunt who was diagnosed with DCIS just had sx and radiation, and she is doing well 5 years later. I asked my dr about this and everyone says to just wait after the MRI next week before we make any more decisions. It sucks not having concrete answers to all our questions ans concerns.

What I would say, is listen to your dr's advice. I am glad you found a good dr that is compassionate and takes the time to listen to you. If they think tamox is the best option to decrease the chance of further atypical growths, I would go for it. That being said, these are all very personal decisions.

I feel like the diagnosis of ADH just leaves us in the limbo where we are not normal yet we are not critical enough to be addressed with urgency. It's like the worst of both worlds. I am so grateful for everyone on this site and the overwhelming support we get from each other. I think I would have lost my sanity without all of you.

Hang in there and keep us updated!!


Log in to post a reply

Aug 9, 2017 12:57AM Lmh8203 wrote:

Thank you Mystic88 for all your support with this..... my husband is here on min then checked out the next. He says he's here for me but when I need him he is not...

Do you have any recommendations on questions to ask the Breast Oncologist? I hope to see him in the next couple weeks.... I just need this to be done and try to get on with my life and stop be in constant worry. I can't sleep, I am up all night worrying about everything. I feel terrible about my children, they have had a horrible summer since I have been so sick.

And your right, having this diagnosis of ADH is just so terrifying, yes we should be thankful tha we haven't been diagnosed with full blown BC, but the fear of the unknown is killing me.... The what if's are just eating at me..

The nurse I spoke to today, I had to go in and get a stitch that was sticking up from the inside, which I thought they were supposed to dissolve but of course mine didn't, it is poking up and causing a lot of red and swollen. They said its not infected but to me it looks terrible. But they are the professionals, lol...

I am very thankful for all of you ladies who understand ADH an what it does to us and can really be myself...

Much love,

Lisa

Log in to post a reply

Aug 9, 2017 01:17AM wonderwoman101 wrote:

Lisa I feel you. Especially right now!

I saw my gyno yesterday for something else and she was checking my breasts and felt something in my "bad" breast and isn't sending me for ultrasound. She spent a lot of time and also mentioned a lymph node seemed possibly inflamed. It hasn't even been a year since my first discovery. I keep thinking about how hardness the 2 months I spent last fall in pretty much much constant worry. My husband was working non stop at that time and I had no choice but to take care of my 2 little kids. I didn't realize how scared I was.

Anyway have you asked your dr for anti anxiety eds? I did and they helped me sleep sometimes. Also I would suggest therapy. It really helps.

Re questions I would say write down everything you think of. Then each day you can make edits if you need to before appt. definitely bring someone with you because you probably won't remember everything. Or ask if you can tape the audio.

Also ask how you can contact them after your appt because I always have follow up questions.

All my thoughts are with you. Keep us posted.

Dx ADH, ALH, FEA, PASH after excisional biopsy on Dec 28, 2016
Log in to post a reply

Aug 9, 2017 01:55AM mystic88 wrote:

Hi Lisa,

My husband is the same way. If anything he is very dismissive of the situation and insists everything will be fine.

Don't worry too much about the suture though- they are meant to be absorbed/dissolved by the body but depending on which type they used, it can take up to a month. If it is painful and inflamed definitely have them remove it. They more often cause a localized swelling (called suture reaction) versus true infection.

I'm sure your children understand- and if not now, they will in the future. It's important for you to focus on yourself through all of this. After all, if you don't take proper care of yourself, you won't be able to care well for them either. Take it one step at a time!

These are some of the questions I asked my BC/onco-

- Do you recommend lumpectomy or mastectomy? Do I have the option of opting for a prophylactic mastectomy?

- Given my age (29) how much risk do I have life long of developing true BC?

- Given the histopathology ambiguity of my biopsy sample (they were unable to "definitively exclude carcinoma") and aggressive look of my tumor on ultrasound (highly vascular and very irregular) what are the chances of being upgraded to a higher malignancy?

- After finding a lump on my other breast (which ultrasound showed as a dilated duct and thickened glandular tissue)- how often do you see changes in the contralateral side once diagnosed with atypical changes?

- Is there a reconstructive surgeon you recommend?

- Should my younger sister be tested/screened? What age? (important if you have daughters!)

- How often should I be monitored after surgery?


These are just what I came up with. As wonderwoman said, if you are able to take someone with you to the appointment it will help have another perspective on what the doc is saying and recommending. If your husband is not quite ready to go with you, have a good friend accompany you. Taking notes is a very good idea as well- you don't need to jot down word for word, but a general idea of what they are recommending. Lastly, you can always request a copy of your appointment record so you have it in front of you and can read everything your doc discussed. My doc's office has an online patient portal so you can access everything at any time. It helps me to read things over and over and know exactly what the plan is and what the next steps will be.

I am getting my MRI done on Friday so we can plan for surgery probably late this month or early next month.

If you need anything don't hesitate to send a private message!

Log in to post a reply

Aug 9, 2017 01:02PM - edited Aug 9, 2017 01:57PM by Tinkerbell49

Hi Lisa

I was diagnosed with adh in 2015, like you I was scared out of my own body. I still have some ptsd from all of this. My oncologist did the Gail score model and I scored lower than 1.6 so tomoxifen was an option but my benefits did not out weigh my risks. I hope I said that right. So I opted not to take it. I struggled with the decision. I am 51 years old and probably going into menopause soon. Then maybe I'll consider taking Evista. I go every 6 months and I won't lie, about a month before my appt My nerves and anxiety start. I go now in Sept and it's like I wonder is this going to be it. You are much younger and every case is different I would ask the oncologist do your benefits out weigh your risk if you take tomoxifen. The decision is hard but you have to come to terms with whatever you decide. I'm OK with not taking it. You have gotten great advice from mystic88 and wonderwoman ask lots of questions and yes ask for anxiety meds if needed they do help. Sending you hugs and prayer. It will get better once you sort it all out.Hug

Dx: ADH 9/15 Surgery Lumpectomy: Left
Log in to post a reply

Aug 10, 2017 08:04PM mystic88 wrote:

Hi again ladies

So over the last two to three days I've been having these weird pain/burning/itching sensations on my breast. It has been overt 2 weeks cince my CNB so I really don't think it's related to it. Moreover it's not exactly close to where this was biopsied. And now i have sone one nipple discharge too.

I'm waiting on a second oppinion of my histopath (ADH vs DCIS) still. Hopefully the MRI tomorrow will give me some more answers too. The waiting sucks.

Log in to post a reply

Aug 11, 2017 07:11AM Neverforgetme1986 wrote:

wow I just now decided to start looking up info on mine because I was diagnosed Jan 2013 at 27 with atypical hyperplasia fibroadenoma. I haven't been able to afford to go back to the doctors to get it checked again as they removed one over an inch out of my right breast, and still have one in my lower left breast almost below my breast. Woke thinking about it at 4am... maybe I should try to get insurance and get them checked again. I wasn't able to feel the only on my left before and now I can big time.


Log in to post a reply

Aug 20, 2017 01:01AM mystic88 wrote:

Hi guys! Just wanted to update on my progress. MRI results are back and I am happy to report the only abnormality was the one mass we sampled. Yay! Birads 4 so no new information there. The second consult on my histopath came back as ADH as well, although not the "typical atypical changes" so have to wait on lumpectomy results.

I tried getting a hold of my surgeon for about a week without getting as much as a call back from anyone in the office. The receptionist told me there was nothing she could do and that I would have to wait until next week to get any information back- so I took it upon myself to call the imaging facility directly (5 times to be exact) and got the MRI report back after everyone was tired of talking to me. Pays to be persistent! So anyway I called my gyno and requested a referral to another surgeon. If she doesn't have time to discuss results with me, I don't feel comfortable with her cutting me.

So I have an appointment with the new surgeon on Monday, as well as a brain MRI as my prolactin levels are pretty elevated and they now want to assess my pituitary.

Hope you are all doing well!

Log in to post a reply

Aug 27, 2017 09:52PM Lmh8203 wrote:

Mystic88..... Hope your appt with your new surgeon went well! What did they say???

So I saw a breast oncologist at the University of Michigan last Monday the 21st.. I went in there prepared to talk to her about Tamoxifen and the risk and benefits of it. I had two drs here recommend that I start it and get off my HRT that I am currently on from hy hysterectomy in 2011.

Anyway.. come to find they did their own pathology test on my core needle biopsy and from my lumpectomy. I am so confused... she says I don't have ADH!! She said yes I have atypical cells and Hyperplasia cells but not the two together?!? I don't get it...

So she is saying no Tamoxifen and she also said even if they saw that I did in fact have ADH that she wouldn't recommend that I go on it because it might lower my chances of development in the next 5 years but my quality of life would be terrible and in the long term, my overall life, it wouldn't change anything. So the benefits don't out weigh the risks... Kinda like you said!

Currently, I am have severe pain in my left breast, not around my incision area the whole breast, a lot around my nipple and not sure why... I took a shower and just held my breast up and it just was throbbing in pain, I was in tears. I plan to call the Dr tomorrow just not sure which DR to call. Family Dr, Oncologist, Surgical oncologist???

I tried to reach out to the amazing women I found on a BC support page on FB but they kicked me out of the group because I was not give a "Breast Cancer" diagnosis:(. I am so sad about this... like you guys, they were women's that have gone through this and could give insite..

So now..... I just feel so alone! Thank you to you ladies for keeping in touch and talking to me!!

Hope all is well and hopefully you can update when you can!

Big hugs, xoxox

Log in to post a reply

Aug 27, 2017 10:12PM mystic88 wrote:

Hey Lisa!

I Just LOVE my new surgeon. She did a very thorough exam, took a long time sitting down with me and discussing all aspects of care, and was very empathetic. I feel so comfortable with her and her entire team. Since we last corresponded I developed really acute pain on my breast- just like you are describing. It comes and goes along with clear nipple discharge.

My brain MRI actually showed I do have a pituitary mass, 0.4mm. In the light of high prolactin they are calling it a prolactinoma, so now in addition to needting breast MRIs every year I need a brain MRI every 2 years. I will probably have to start on medications for this at some point, but I need to figure out my breast surgery first. These are almost always benign anyway.

I'm sorry you had such a confusing consult! It's super frustrating when drs can't agree on a diagnosis. I think the difference between ADH and atypical cells in addition to hyperplasia is that atypical cells are present in addition to normal excessive cells, but that there is no abundance of atypical cells. Which I think it redundant.. and not sure how much of a difference it makes. It sucks you were kicked out of that FB page. It's not like we are looking to be in this situation, and just reaching out to others who are in similar situations is very very helpful.

Anyway, my lumpectomy is finally scheduled for the 8th! I can't wait to get this done and move on with life.

Keep in touch!

Log in to post a reply

Sep 8, 2017 12:49PM gwen4444 wrote:

Thank you so much for posting this! Even though it was posted 6 years ago, it still gave me comfort to read this and to know I'm not alone in what I'm feeling right now.

My story is I had a stereotactic biopsy back in early August 2017 after going in about a lump in my right breast. The lump turned out to just be a cyst, but they saw architectural distortion in my left breast and had me schedule first an ultrasound-guided biopsy (didn't really work) and then a stereotactic biopsy. They found ADH, CCC (Columnar Cell Change), radial scar/complex sclerosing lesion. My partner and I had already planned a 2.5 week vacation long before any of this happened so I was able to put this out of my mind while we were gone but now that I'm back, my stress has come back ten-fold. I'm scheduled to have a breast MRI this coming Monday and then will meet with the doctor on Wednesday to go over the MRI results. It's really scaring me that I have no idea what they'll find for sure and I'm worried they'll find DCIS or possibly even ICD. I know I'll feel better come Wednesday when I'll be called with the MRI results before going in to see the doctor. In the meantime, I feel like I'm having to put my life on hold and ti's really stressful!

Log in to post a reply

Sep 8, 2017 01:07PM gwen4444 wrote:

-- Ha, just to be clear what I'm commenting on, I meant this in particular especially this part (posted on Nov. 4, 2011 by thatsvanity):

"Coping and support

An atypical hyperplasia diagnosis can be stressful, since it increases your risk of breast cancer. Not knowing what the future holds may make you fearful for your health. With time, every woman develops her own way of coping with atypical hyperplasia and her increased risk of breast cancer. Until you find your way of coping, consider trying to:

Understand your individual risk of breast cancer. Breast cancer risk statistics can be overwhelming and frightening. Breast cancer risk statistics are developed by following thousands of women and can give you an idea of your prognosis, but the statistics can't tell you about your own risk of breast cancer. Ask your doctor to explain your individual risk of breast cancer. Once you understand your personal risk of breast cancer, you can feel more comfortable making decisions about your treatment.
Go to all of your follow-up appointments. If you've been diagnosed with atypical hyperplasia, your doctor may recommend more frequent breast cancer screening exams and tests. You may find yourself distracted with worry before each exam because you're afraid that your doctor will find breast cancer. Don't let your fear stop you from going to your appointments. Instead, accept that fear is normal and find ways to cope. Relax, write your feelings in a journal or spend time with a close friend who can lift your spirits.
Maintain your health. Make healthy lifestyle choices to keep yourself healthy. For instance, maintain a healthy weight, eat a healthy diet full of fruits and vegetables, get enough sleep so that you wake feeling rested, and limit the amount of alcohol you drink, if you choose to drink alcohol. You can't control whether or not you get breast cancer, but you can keep healthy so that you're well enough for breast cancer treatment, should you need it.
Talk with other women in your situation. Talk to other women who have been diagnosed with atypical hyperplasia. Ask your doctor about support groups in your community. Another option is online message boards. Breast cancer organizations, such as, offer message boards for women with a high risk of breast cancer to connect with each other."

------

Me again--I've been reading through all the posts on here and everyone's posts have been REALLY helpful. I have GAD (Generalized Anxiety Disorder) so I'm already hard-wired to worry about things. I usually do better in situations where there's actually something real to worry about, but because I'm in limbo-land for now as I won't have the MRI until next week, I've got the "best of both worlds," in that I'm worrying both about what I know is true and also about the unknown. Sigh. So glad this thread exists!!

Log in to post a reply

Sep 8, 2017 06:32PM mystic88 wrote:

Hi Gwen, welcome to the site!

I'm sorry you're worried, but we all understand how you feel. Even though finding abnormalities is scary, it's great that it was found before the ADH turned into more concerning cells.

Everyone has different experiences with the MRI- for me it was just uncomfortable.

Try keeping busy while waiting for the MRI and let us know how things go!

Log in to post a reply

Sep 12, 2017 09:33AM Vbarstad wrote:

Hi Gwen, I am a very similar boat! I was DX with ADH and Radial Scar via CNB in July and just had my MRI last week (wasn't bad at all). The area, and luckily the only area did still show enhancement so next week I'll have an excisional biopsy to confirm. ADH and Radial Scar are tricky and I totally understand the anxiety and stress you are going through with all the tests and waiting. The bright side is, the odds are decent that it will remain ADH and they can get it out and monitor you closely. If it is something, then it has been caught early. Those are the two things that I come back to when my thoughts go dark. I'll be sending good vibes your way for tomorrow, keep us updated!

Log in to post a reply

Sep 12, 2017 04:02PM josieg wrote:

Hi all! Wondering if anyone has been diagnosed with ADH after IDC and DCIS? I had IDC/DCIS (diagnosed in June last year), had lumpectomy July, radiation August/September, and have been on Tamoxifen since October. Mammogram last week showed suspicious calcifications on left side (same side as DX) and I had to get a stereotactic biopsy on Friday. Results have just come in as ADH, and they are referring me to breast surgeon. RO thinks I may not even need another incision since the area was so small, but clearly with my history, and the fact that I'm taking Tamoxifen and have had lumpectomy/radiation I'm concerned I even got this diagnosis.

(ps - stereotactic biopsy was horrible! I have had them before lying down but this one was sitting up and I fainted in the middle of it - they let me do it again lying down).

Dx 6/30/2016, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 7/14/2016 Lumpectomy: Left Radiation Therapy 8/28/2016 Whole-breast: Breast Hormonal Therapy 10/22/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Sep 13, 2017 10:02PM gwen4444 wrote:

Hi All! I got the results of my breast MRI today--they didn't find anything else. Now the next step will be for me to have an excisional biopsy of the area with ADH and columnar cell atypia. I have an appointment with the doctor next week to talk about this and then schedule the surgery.

From what I've read, it sounds like there's only a very, very,slim slim chance that they could possibly find any DCIS after they take out the ADH area because the MRI is a MUCH more sensitive test than mammography. I'm going with the 'they likely won't find anything' thought for now, but has anybody had an MRI show no DCIS but after the excisional biopsy, some DCIS was found, and/or is this possible? Also, I don't know if there's a threshold of size for DCIS where it would need to be a certain size for an MRI to detect it. Just want to be aware of ANY or ALL possibilities, and it's not that I think that a slim chance would turn out to be my situation. I'm not that special.

Winking

Page 27 of 28 (818 results)