We are 226,000 members in 82 forums discussing 158,562 topics.

Help with Abbreviations

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 2 of 34 (1,001 results)

Posts 31 - 60 (1,001 total)

Log in to post a reply

Dec 6, 2011 11:02PM - edited Dec 6, 2011 11:02PM by kittycan

Chickenlegs, I could be your sister. no symptoms, no genetic factors, no family history, breastfed my daughter etc. Lumpy boobs all my life, what they call "busy breasts".

In June I had bloody discharge from my left nipple, the milk duct was removed in surgery. Besides 2 small benign papillomas, ADH was found. After a few days of research and the knowledge getting off my nature-identical Hormone replacement therapy was not an option ( hot flashes from hell every 15 to 20 minutes 24/7 without it ), I made up my mind to have a PBMX. None of my docs thought I was crazy. It's been 8 weeks now since my surgery, it was really not bad, direct to implant expanders filled with 200 ml each. After 2 fillings I have a full B cup and will get my final implants in January with day surgery.

For the PBMX, I stayed in the hospital overnight, the surgery took 3.5 hours, and my BC and PS worked hand-in-hand. 

the first 6 hours were rather unpleasant, but then I was already roaming the halls, and even slept some that night without being drugged. Did only need 3 Vicodin in total and took half pills, and Ibuprofen after day Three. 5 mg of Valium at night for a week, then another week of 2.5 mg, as your breast muscles tend to spasm a bit getting used to the implants. Was walking a mile on my tread mill 3 days after surgery. The drains were annoying but easily stashed in a fanny pack. You want to have a couple of different bras to switch around while you still have swelling.

my boobs look great and are no longer a liability and I have regained trust in my body. Pathology found ADH in several other milk ducts on both sides, and it never even showed as calcifications in my annual mammograms. My BS said, she's pretty sure I would have had cancer within a few years.

I had no doubt at all through the whole process I was making the right decision 

Log in to post a reply

Dec 12, 2011 12:57PM mommy23kids wrote:

Hello ladies names Dee (deniece) 29 just got diagnosed with ADH. So far all i know is that im looking into having a mri lumpectomy and maybe a brac testing. :(

Atypical Ductal Hyperplasia 12/12/11 Lumpectomy 12/23/11
Log in to post a reply

Dec 12, 2011 05:43PM jenni8675309 wrote:

My journey started with a diagnosis of Adh as well when I was 37. I had a double lumpectomy for the most worrisome calcifications and the pathology cam back as more Adh and alh. I had my pathology slides from the lumpectomy re-read at MD Anderson and they said it was not Adh and alh, but grade 3 DCIS and LCIS and dirty margins. My heart sank as I had waited about 4 months to have the slides re-read and then had to wait another month to been talk to the breast surgeon. Since I had a " busy breast" full of calcifications and the pathology now coming back as of DCIS my only option was a uni-mastectomy, which I decided to do both because of my young age and living in fear that the good side would get it. I had the BMX Nov 30 th and have no regrets. The months leading up to it and the worry, anxiety, and sleepless nights were worse then the recovery. I have tissue expanders in now which are not comfortable, but at least the ticking time bombs are gone. I am glad I did have my slides re-read by a cancer institute because if I had not I would have been sitting here doing nothing letting the DCIS possibly turn invasive.

Dx 9/2011, DCIS, Stage 0
Log in to post a reply

Dec 12, 2011 06:56PM mommy23kids wrote:

I will definitely have get a second opinion on my slides and pathology once the lumpectomy is done.

Atypical Ductal Hyperplasia 12/12/11 Lumpectomy 12/23/11
Log in to post a reply

Dec 12, 2011 08:48PM jenni8675309 wrote:

Better to be safe than sorry..good luck on your lumpectomy.

Dx 9/2011, DCIS, Stage 0
Log in to post a reply

Dec 13, 2011 10:20AM Likeachickadee wrote:

I wanted to come back to the club with the results of my wire guided excisional biopsy done on 11/29.  Unfortunately there were two areas of DCIS, one was intermediate and one was high grade and an area of IDC 13mm.....so that all was hiding between the 2 areas where the core biopsies were done earlier in November.  Now in the pipeline for lumpectomy and SNB and waiting for results of MRI.

Good luck to all....

T/C x4 starting 3/19/12. BMX 2/7/12 w DIEP Flap reconstruction. Dense breasts with microcals, Right breast: ADH, ALH, LCIS, DCIS, IDC, multifocal. Dx 12/7/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/7/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 3/19/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/15/2012 Arimidex (anastrozole) Surgery 10/10/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
Log in to post a reply

Dec 13, 2011 04:45PM momoschki wrote:

I have a question regarding the 6 month screenings-- I posted this a while ago and didn't get much of a response, so I am trying again here.  Just started on the 6 month circuit following an ADH dx.  Had my first post-surgical mammo last month and my BS said the protocol would go as follows:  the mammo (the one I just had), then in May an US, then next November another mammo, and then, in May of 2013, an MRI.  It seems this differs from the usual routine, which appears to be simultanous mammo + US, followed by an MRI 6 months later, repeated annually.

 I have just emailed my BS this question, but wondering if anyone here has had a similar situation to mine or could perhaps shed any light on this. 

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
Log in to post a reply

Dec 13, 2011 06:17PM jenni8675309 wrote:

Momoschki- when I had my lumpectomy back in May before I knew in had DCIS and just had the Adh diagnosis my schedule was mammo and ultrasound every 6 months for the first year. Then at 1 year MRI. She she said she would start spacing things out. I didn't ask what the second year schedule was though. After I had my slides re- read the second hospital changed my diagnosis and I had to have a BMX. Hope this helps.

Dx 9/2011, DCIS, Stage 0
Log in to post a reply

Dec 13, 2011 09:49PM momoschki wrote:

Jenni-- so you were scheduled originally to have the mammo and ultrasound together at 6 month intervals? Or you had a mammo, and then 6 months later, an US?

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
Log in to post a reply

Dec 13, 2011 10:06PM jenni8675309 wrote:

I was supposed to have them at the same time at 6 month intervals. They were also watching a complicated cyst on my good side, so I am not sure if that was the reasoning or standard protocol.

Dx 9/2011, DCIS, Stage 0
Log in to post a reply

Dec 14, 2011 08:19AM calilisa wrote:

I had two areas of ADH removed in July.  Leading up to the surgery I had a mammo in May, US and MRI in June, and surgery in July.  I've been told to come back next July for all three, mammo, us and MRI.   When I asked my surgeon about a 6 month rotation, he said he likes them done all at once so they can compare them at the same point in time and 1 year is fine unless I notice any changes.  Honestly I am still so confused as to what I should be doing.  I'm on tamoxifen also, and struggling somewhat with it.   So momschki, it doesn't seem that what my doctor has recommended is standard protocol, but I thought I'd let you know what I'm doing.  (at least for now ... I do wonder if I need to switch doctors, as he is a general surgeon)    I still have one complex cyst in my "good breast"  that they feel we can just watch.  

Log in to post a reply

Dec 14, 2011 09:09AM JanetM wrote:

I have been doing mammos every 6 months for the left breast that has LCIS, ADH and ALH.  Annually we do a mammo and ultrasound on the left and just the mammo on the right breast.   Haven't had an MRI yet.

Lumpectomy 5/24/11 - LCIS, ALH and ADH and SAH/BSO - 8/10/11 Dx 5/10/2011, LCIS, Stage 0, 0/0 nodes
Log in to post a reply

Dec 14, 2011 09:21AM - edited Dec 14, 2011 12:57PM by momoschki

Thanks everyone for your feedback. I like my BS a lot and she is very well respected in her field, but I am still a little perplexed, since it seems like most high risk women get mammos 2x year. I put in my questions/concerns to her nurse navigator, who of course is on vacation until the middle of next week. Why do I never think of these questions in the moment when I am actually with the doctor in the same room??

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
Log in to post a reply

Dec 14, 2011 10:15AM calilisa wrote:

momoschki - I never think of all my questions either ... I try bringing a list, but I still think of something as soon as I walk out.   Thanks for bringing up this question regarding follow-up, because I've had questions of my own as to what is standard and I'll follow the replies with interest.  Best wishes to you.

Log in to post a reply

Dec 14, 2011 10:50PM traycal wrote:

Recently told I have ADH in right breast after going through a mamo, unltrasound, biopsy and then a partial mastectomy. On my 40th birthday I was told no cancer, but ADH with and my path report was very busy. Now they want to put me on anti cancer meds (blocking estrogen) for five years. I meet with the Oncologist on Friday. I can't see myself taking drugs for 5 years. I exercise like a crazy person and eat right. I am thinking I may have a double mastectormy with reconstruction. I would rather do that, than take meds for 5 years. I just want to make the right choice and be around as my 5 year old daughter grows up. Anyone else trying to make a difficult decision like this?

Log in to post a reply

Dec 14, 2011 11:22PM awb wrote:

I'm just the polar opposite---I would rather take the meds than do  BPMs. But we're all different and have different reasons for our choices, so you have to do what's right for you. I was diagnosed with LCIS (the next step up from ADH with double the risk) 8 years ago and my risk is further elevated by family history of bc (mom had ILC). I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, took tamoxifen for 5 years and now take evista, and tolerate both meds well with minimal SEs. The best to you whatever decision you make.

anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
Log in to post a reply

Dec 14, 2011 11:27PM traycal wrote:

Dear Vmudrow,

Thank you for your post. It really helps hear someone else do what I am thinking of doing. I worry that people will ask why, since there is no cancer. I can't see myself taking cancer meds for 5 years and holding my breath with every mamo. I worry way to much. I have had lots of sleepless nights thinking about what I will do. I meet with the oncologist on Friday to hear what she has to say.

Thank you again for your post. You have know idea how much it means to me right now. 

Log in to post a reply

Dec 14, 2011 11:30PM traycal wrote:

Anne,

 Thank you. It is a hard choice. I am a drug rep and sell medications, but I don't like to take anything. The PIs on meds are scary, so I try my best to take my vitamin and nothing else. I don't know if I could do 5 years of any type of medicine, espeically one that can be mood altering.  

Log in to post a reply

Dec 15, 2011 08:25AM vmudrow wrote:

traycal - when I met with the oncologist he told me most ladies don't have many side effects from Tamoxifen.  I contacted three ladies that I knew were on it (friends of friends) - all of them hated it and wished they could go off, but didn't dare because they did have breast cancer, one did stop it anyway.  So that helped in my decision, plus I was tired of the constant worry - it was the right decision for me (PBMX), not for everyone though.  Let me know if you have any questions!!  If you would like to call me I could send you my number too.

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer
Log in to post a reply

Dec 15, 2011 09:27AM farmerlucy wrote:

In my last excisional biopsy they found ADH and ALH. This one was needle guided and the breast care center was excellent. Before that I had been going to a notable high risk screening dr for almost twenty years. I'd had unilateral spontaneous sero sanguinous nipple disharge and the old doc and surgeon did two galactograms and an excisional biopsy two years ago, but ended up taking out the wrong duct, so the issue persisted. When I went in for my annual screening this year to the old doc and told the ultrasound tech I still had the discharge, she wrote it all down, then when I went to see the old doc, she had NO clue I was still having the discharge and obvious had not read the chart, and was ready to pass me off for another year so she could get to a meeting. That is when I knew in my heart I had to make a change. So I scheduled a consultation with a new radiologist (just a consultation), The nurse took down all my info and with in 1/2 hour I'd had an ultrasound and a galactogram and I was looking at the interior of the correct duct on the new Dr's computer screen. I had an excisional biopsy a few days later and that is when they found the ADH and ALH. What is my point? You have to be your own best advocate. If something doesn't feel right to you regarding your care it probably isn't.

 After the path report came back I went to a Risk Assessment Doctor affliated with the same hospital. We looked at my family tree and my personal breast issues (very dense and busy breasts) and he assessed my risk of developing BC at 50%. If I took meds we could knock that down to 25%. but I am in the in between stage of tamoxifen and reloxifen (sp??) since I am 51 and still have periods. He was surprised when I brought up the possibilty of a PBM, because it is not the choice for most women. I'd decided long ago that if something ever came up, that is what I would do. I plan to have that done early next year.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

Dec 15, 2011 09:41AM farmerlucy wrote:

momochki - the protocol for the high risk surveillance from the Risk Assessment Doc would have been 6 mo mammo, six month later MRI, to be repeated for life (I guess)..

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

Dec 15, 2011 10:30AM momoschki wrote:

Traycal,

I am like you in that I had a dx of ADH in one breast only.  My breast surgeon was adamant that mastectomy was overkill and refused to do it.  Neither she nor my oncologist were adamant about tamoxifen, calculating that in my case, it would afford only about a 4% reduction in risk.  I see an integrative oncologist who has me on a lot of supplements, plus, I had an oncoplastic breast reduction, which further reduces my risk.  Still nervous though, of course... 

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
Log in to post a reply

Dec 15, 2011 10:52AM traycal wrote:

Momoschiki,
I agree, 4% is not enough to take meds in my opinion. I wouldn't be a good candidate for a reduction either since I'm really an A cup. Although, I wear B bras to make myself feel better. Lol. It is such a scary thing. I just want to get this meeting over with. Why do doctors have to space everything out? I got my diagnosis Nov 28th and I am just now going for my oncologist appointment.
Thank you,
Traycal

Log in to post a reply

Dec 16, 2011 10:42AM - edited Dec 16, 2011 10:43AM by kittycan

I didn't even see an oncologist. I got a copy of the pathology when I had the bleeding milk duct out, because my breast surgeon was 2 hours away. I did all the research ( had worked in the medical field as radiology specialist and been to med school for a few years), and concluded that for me the PBMX was the right thing. Then talked to my OB/GYN and asked her point blank if she thought I was crazy to want that and she said, not at all. Then went to my post-op app. with the breast surgeon and though she had first recommended Tamoxi and 4 months controls, I told her I wanted them off, and she said that if I thought it was the right thing to do, it probably was. 3 Months later I had my PBMX, now 2 months ago, and all's good. The PBMX pathology proved I had made the right decision, with ubiquitous ADH in both breasts

Log in to post a reply

Dec 16, 2011 09:43PM traycal wrote:

Kittycan and Vumdrow,
Thanks for your posts. Vumdrow, thank you for talking with me last night. I met with the oncologist today. I told her I was thinking if surgery after she talked about Tamoxifen. She was supportive. She is now sending me to genetics on Jan 4th. No real family breast cancer history, so I don't see genectic testing showing very much.

Log in to post a reply

Dec 16, 2011 11:47PM kittycan wrote:

the thing that kind of shocked me afterwards, actually, this was the only time I cried!- was that I had several ADH in both breasts, and my annual mammogram never showed anything. I felt like when you miss your plane and then it crashes.

And you wouldn't believe how nice my boobs look, and who needs nipples anyway, lol 

Log in to post a reply

Dec 17, 2011 04:13PM traycal wrote:

Kittycan,

All I can say is that would make me cry too and wow!! It is amazing how they push mamos instead of MRIs. It goes to show that these scans cannot pick up everything.  I talked with the Oncologist yesterday. Told her I would not take Tamoxifen and was thinking of removing my breasts. She said she understands as a woman and is now sending me to the genetic team for some testing. 

Log in to post a reply

Dec 17, 2011 10:28PM - edited Dec 17, 2011 11:07PM by kittycan

more power to you traycal, and good luck!

I have no BC in my family history, but my grandma died young from heart inflammation via strep throat,my mom had only a brother, smoked herself to death and I am an only child. So, there's not a lot of data to work with.

I breastfed my daughter for half a year, too 

oh and I have my last (day)surgery to exchange to permanent saline implants on 1/25. And then I'm done woohoo! 

Log in to post a reply

Dec 18, 2011 09:25AM - edited Dec 18, 2011 09:26AM by traycal

That's great news Kittycan. Hope the last step goes smoothly.
I too have no FH and breastfed for 6 months. Great grandmother one side died of ovarian cancer and the other side died of colon cancer. Lots of melanoma. One aunt died from it. My mom has calcifications, but nothing else. Not sure why the Oncologist wants me to meet with the genetic counselor. I'll do it though, if they think it will give me some sort of peace of mind!?

Log in to post a reply

Dec 18, 2011 10:21AM vmudrow wrote:

Tracey - It was good to talk to you the other night.  Glad to hear your appointment went ok and that the oncologist understands how you feel.  If insurance will pay for genetic testing might as well do it.  Then you know what you are dealing with.  FYI your blood will be sent here (to Utah) for testing as Myriad is the only place that does testing for BRCA.  Keep us posted.

Hugs, Valerie

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer

Page 2 of 34 (1,001 results)