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Topic: ADH Club

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

Posted on: Aug 30, 2011 06:45PM - edited Aug 13, 2013 04:21PM 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
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Feb 20, 2018 03:31AM momto3sons wrote:

Glad to hear you have yours scheduled!

Other than having a few dreams here and there about the biopsy showing cancer, I’m holding up pretty well. I cleaned the house this weekend, and my husband and I took care of grocery shopping for the next couple of weeks. I’m just ready to get this taken care of now

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Feb 20, 2018 03:10PM wildflowerjoy wrote:

Did your doctor put you on Tamoxafen? I had bloody discharge from me left breast. After an US they scheduled surgery and it was ADH. I read several studies that show this drug lowers the risk if taken for five years. BUT, I had to request to see the cancer doctor at my surgery followup visit. My cancer doctor was one I knew from my mom and two sisters so I felt comfortable asking just to see him and hear his recommendations. He was so excited that I self referred to see if there was something they could do to lower my chances. He showed me even more studies that suggest lowered breast cancer risk with the use of this drug. For now, I think it is the best decision. When I was first diagnosed I was panic but now I feel comfortable with the medicine and a wait and watch routine.

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Feb 20, 2018 04:48PM momto3sons wrote:

I talked about taking Tamox with my surgeon, but she feels like the side effects would outweigh the benefits for me since I'm just 42 and still pre-menopausal. I might re-evaluate depending on what my excisional biopsy comes back with.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Feb 25, 2018 06:19AM drala wrote:

Thanks

I'm scheduled for March 6th. The waiting driving me nuts. I wish there was a way to speed this process up.

I hope your are recovering well from your procedure.

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 2, 2018 12:47AM momto3sons wrote:

Good news - no cancer cells found in the biopsy! I do have ADH, along with intraductal papillomas, so my surgeon considers me high risk now. We discussed tamoxifen, but since I'm just 42 she isn't recommending it at this time. She did say I could follow up with a medical oncologist...not sure if I need to go down that road yet.

At least I get a bit of a reprieve - next mammogram will be in December.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 3, 2018 04:55AM drala wrote:

Yay!

So glad it was good news.

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 3, 2018 05:34AM momto3sons wrote:

Thank you!

I’m going for a consultation with a medical oncologist on 3/20. I figured I’ll have all my bases covered then.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 5, 2018 03:24AM drala wrote:

You're welcome.

How is healing? Did you go back to work the next day?

I'm thinking of taking the day after the procedure off of work. Do you think it's necessary?

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 5, 2018 04:19AM momto3sons wrote:

I would recommend taking the next day off. I was still really sore the next morning, and still trying to shake the anesthesia.

I’m doing okay...still have some pain if I push it and do too much.

Good luck on Tuesday

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 7, 2018 07:59AM drala wrote:

I had my lumpectomy today! It wasn't so bad. The wire localization was the worst of it for me.

I did ask for an extra day off like you suggested Momto3sons. Thanks for the validiation. Sometimes I feel guilty missing work.

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 7, 2018 12:19PM Robinda2970 wrote:

Anyone have extensive adh and years of biopsies and decide to do mastectomy?

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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Mar 7, 2018 03:54PM momto3sons wrote:

drala - Glad to hear the biopsy went well! I agree - the wire loc part was the worst of it.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 7, 2018 07:35PM drala wrote:

Thanks!

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 12, 2018 06:44PM SAAdvocate wrote:

Welp, here I am. My co-workers would likely feel that this won't help me maintain a positive outlook, but sometimes you just need to connect with people that really do "get it."

I've been having yearly mammograms since I was 25, as my mom had a very aggressive breast cancer when she was 40 and the doctors recommended early screenings for her daughters. Well, a couple weeks ago my screening mammo found some calcifications. I had a diagnostic mammo done a few days later and the doctor recommended we do biopsies - given how the calcifcations presented and the family history. I had the biopsies done last Wednesday (wow! That was anxiety inducing) and Friday I got my results. I have ADH.. and will be referred to a surgeon at our local Breast Center.

I'm trying to focus on the fact that it's not cancer. But it's hard knowing it's *so close* to cancer. My mom actually had ADH years before cancer showed up. I'm just a little freaked out, and thought it might be beneficial to get connected to people who understand my fears.

And I'll rise up ~ I'll rise like the day ~ I'll rise up ~ I'll rise unafraid ~ I'll rise up ~ And I'll do it a thousand times again ~ And I'll rise up ~ High like the waves ~ I'll rise up ~ In spite of the ache ~ I'll rise up ~
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Mar 12, 2018 07:16PM momto3sons wrote:

Welcome SAAdvocate! I'm glad you found this forum, although I'm so sorry you're already having to deal with the worries.

I don't have the same family history you're dealing with, but I get what you're saying about being connected to people who understand your fears. I always get the "well, it's not cancer" from people - I'm sure they mean well, but even being in the high risk category is a bit scary...it's like I'm walking on egg shells and have been hyper-vigilant about SBEs.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 12, 2018 07:33PM SAAdvocate wrote:

Thank you Carolyn! You're right, I'm sure everyone has the best of intentions, but sometimes you don't need people to be overly sunny and optimistic. Sometimes you just need people to acknowledge that it sucks. Part of me is like, "sweet, we caught things early now we can 'do better' in life and try to reduce risk" and the other part of me feels such resignation to such a high likelihood that I'll develop cancer. It's an odd feeling, being stuck between the two.

And I'll rise up ~ I'll rise like the day ~ I'll rise up ~ I'll rise unafraid ~ I'll rise up ~ And I'll do it a thousand times again ~ And I'll rise up ~ High like the waves ~ I'll rise up ~ In spite of the ache ~ I'll rise up ~
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Mar 13, 2018 03:25PM momto3sons wrote:

You summed it perfectly! I'm optimistic by nature, but there's still that worry in the back of my mind.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 13, 2018 04:52PM momoschki wrote:

I agree - having dealt with this now for over 7 years, I think it’s fair to say that we are caught in a grey area that most don’t fully grasp. We hover somewhere between “great news, no cancer!” bandnot completely in the clear either. The 6 month monitoring is still very stressful. My BS suggests that at some point (when? She won’t say) we will go back to annual monitoring, and while in some ways this would be a huge relief, in other ways I would worry that I wasn’t being watched closely enough. While I don’t think about my dx on a daily basis anymore, it still is like the proverbial shoe over my head, waiting to drop.

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
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Mar 13, 2018 09:10PM teachermomfl wrote:

Starting Tamoxifen tomorrow(if I gather the courage). I have the bottle, but waiting until AFTER my date night with hubby tomorrow. Anyone else here on it? How have you fared so far? I also posted in the hormone therapy group, but I'm curious about my fellow ADH friends. :)

Diagnosis: ADH-12/26/17
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Mar 13, 2018 09:18PM - edited Mar 13, 2018 09:19PM by Robinda2970

how extensive is your adh? I have a large area. HAd a small amount of dcis 2 years ago. Lumpectomy on tamoxifen. Just hD another biopsy. I decided to do a mastectomy. I've had 5 biopsies. Can't take it anymore.

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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Mar 14, 2018 12:20AM momto3sons wrote:

Good luck teachermom! I am not taking it at this time, but I'll see what the oncologist recommends after my appointment next week.

Robin, I can't imagine the stress you've been going through with all the biopsies! When are you doing the mastectomy?

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 14, 2018 04:37AM Robinda2970 wrote:

I plan on doing it in June. I’m a teacher and will have the summer off..

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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Mar 14, 2018 04:38AM - edited Mar 14, 2018 04:39AM by Robinda2970

Teachermomfl...I’m on it. Very few side effects!!

Robin Dx 2/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+ Surgery 7/1/2018 Mastectomy: Left, Right; Prophylactic mastectomy
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Mar 14, 2018 07:19PM drala wrote:

Hi momto3sons,

I received the results from my excisional biopsy today and unfortunately it showed DCIS. I'm kind of in shock.

I'd done research, so I know the prognosis is very good. Now I'm waiting for results of genetic testing and then my BS and MO will discuss the treatment plan.

Thank-you so much for your encouragement! It helps so very much to be able to communicate with others going through this ordeal. I don't know what I would do without it.

How was your appointment with your MO?

I hope all is well.

Dawn

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 14, 2018 07:33PM momto3sons wrote:

Oh my goodness - I'm so sorry to hear that! That was my fear for my biopsy - and honestly, I sometimes wonder if they could have possibly missed DCIS with the biopsy. I'm glad they caught yours when they did, though!

My appointment is on 3/20. I'm definitely going to ask him if he thinks there could be a chance that cancer is lurking.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 15, 2018 01:03AM drala wrote:

Thanks so much.

In a weird way I am relieved. I was thinking I'd be waiting for the other shoe to drop forever with the ADH.

Now it's dropped, so I can deal with it.

I hope your appointment goes well.

Surgery 3/6/2018 Lumpectomy: Right Dx 3/14/2018, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Mar 15, 2018 05:30AM momto3sons wrote:

I can understand that - it’s similar to what I said to my husband after my biopsy. Keep us posted on how you’re doing

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right
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Mar 15, 2018 08:55PM SAAdvocate wrote:

How common is it after the needle biopsy showing only ADH that the larger surgical excision shows DCIS? I have my surgery consult on Monday...

And I'll rise up ~ I'll rise like the day ~ I'll rise up ~ I'll rise unafraid ~ I'll rise up ~ And I'll do it a thousand times again ~ And I'll rise up ~ High like the waves ~ I'll rise up ~ In spite of the ache ~ I'll rise up ~
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Mar 16, 2018 12:44AM cattledoglv wrote:

I guess I can be added to this unfortunate club. My journey started last year in March. I had been having pain in my right breast and nipple, like bee sting pains for several months. All of the sudden, one day, I felt a lump under my nipple. It felt pretty big. Went to my primary and she felt it and sent me for a diagnostic mammo. Mammo came back BiRads 0 needing more info. Had an ultrasound that day. Found lump. Dr didn't like the way it looked or the fact it had grown so fast and caused pain. BiRads 4b. Had a biopsy, where he took out many many samples that came back a fibroadenoma. Whew! I was relieved! It still caused pain tho so I asked if they could remove it. I was going on vacay and had stuff planned for the summer so they said they'd take it out end of August. I have the "lumpectomy"(that's what my dr called it) the end of August, and a few days later I see my surgeon for the check up. she sits down and tells me that she's shocked by my pathology. I had "atypia" throughout the tumor. It grew fast! She then used that stupid computer risk assessment tool for breast cancer and said my increased risk was ONLY 4%. I didn't know what atypia was and she's didn't explain any further. I just said glad I had it out and that was that.

I had to go in for my annual screening mammo a few weeks ago and then had to have diagnostic and US again for a lump and lymph nodes. Only then, did I start looking up atypia in breasts. Well, I saw two types that were specifically called atypia. FEA and ADH. I was hoping I had the FEA... Today, I finally asked my primary which one I had while she rushed around trying to get me an appt with my surgeon, who's booked for ages, since I guess I have three lymph nodes about an inch by just over half an inch big and another lump on the left that can't be seen by mammo or US. The lymph nodes are going on three weeks now and only got bigger. So I'm pisssed that this wasn't really taken seriously by my surgeon. I have implants and "extremely dense" breast tissue which makes mammos very difficult to read and the extremely dense tissue makes BC hard to see and makes me at higher risk for BC in the first place.

I spoke with my PS and he said he'll meet with me after I figure out what's going on with my nodes and and lump. He recommended an MRI. We talked about doing a breast reduction (I normally have a C cup without implants) and smaller implants to make reading mammos easier and to reduce my risk by lessening the amount of breast tissue. I read a report from the New England Journal of Medicine that is pretty recent, and their study on ADH said that overall risk for women with ADH is 30% of getting DCIS or IDC within 25 years after the ADH. That's A LOT higher than my dr said. If you want to read the study search ADH and New England Journal of medicine. Oh and I started this crappy journey at 38. I'm now 39 which I guess increases my risk even greater since I was diagnosed before 45.

ADH Rt 8/17 ADH Left 5/18 Surgery 8/24/2017 Lumpectomy: Right
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Mar 20, 2018 10:46PM momto3sons wrote:

I had my consultation with the MO today, and for now I'm staying on the same course I discussed with my BS - not starting on tamoxifen, and I'll be closely monitored. We didn't discuss any genetic testing at this point, but if I have any issues with my next mammogram I'll consider it.

Carolyn, mom to 3 sons - ADH, intraductal papillomas 3/1/18 Surgery 2/22/2018 Lumpectomy: Right

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