ADH Club
Comments
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Faith_Hope_Love,
Your story sounds very similar to mine. ADH with very strong family history and extremely dense breast tissue. I know I will be having the mastectomy done as well. My surgeon suggested I don't rush into it and wait and see how my next MRI goes. How did your surgery go? I hope you are recovering well. Hugs.
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Hi Beesie and other ladies,
I was wondering if any of you have come across any research on "ADH/boarderline DCIS" or "ADH approaching low grade DCIS"? And what's the general consensus about how to deal with that kind of dx? Or perhaps it's just a term when the pathologist can't decide one way or the other?
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Horse,
When all this started for me 3 years ago, a needle biopsy first found DCIS - I went on to get 2 more opinions on my slides from 2 other hospitals. One came back as borderline ADH/ DCIS, while the third one came back as pure ADH. After questioning both my BS and onc about these discrepancies, I have learned that thesecpathology interpretations are often subjective and not at all clear cut. The pathologist may find ADH features along with others that border on DCIS. It's very confusing to me still, but I have also been assured that no matter which one of these dx's may be most accurate, my tx and prognosis would remain the same. When I had an excisional biopsy, all the tissue removed was benign-- the needle biopsy removed all of whatever it was.
Maybe Beesie can weigh in on this one?
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Horse,
I found this to be helpful...I have been thinking about this, too.
http://surgpathcriteria.stanford.edu/breast/dcis/differentialdiagnosis.html
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I am 70 years old, found microcalcifications on routine mammagram and now after needle biopsy, 7 mammograms, an excisional biopsy on Tuesday and just heard from the doctor that I have ADH but fortunately no cancer. I now am joining the anxiety inducing period of waiting between mammograms to see if it returns. I have my follow up appointment with the surgeon on the 21st so hopefully he will shed more light on the ADH diagnosis and what steps I need to take to improve my odds. I have already cut back on my nightly glass of wine and also vaginal estrogen which I thought was safe and not systemic. The 25% increased odds certainly increases the anxiety. I have no family history of breast cancer but when I was in my 20's and a new teacher it was required that we have annual chest X-rays if we had a positive tb Mantoux test. You wonder if that radiation exposure has not come back to haunt me.
I read the entries from so many younger women and certainly have empathy with the ADH diagnosis at that young an age. Waiting to speak to the surgeon
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Hi everyone, posted this under different topic, no answers yet, so I am trying here!! Going crazy waiting for my appt with BS for wire/biopsy, my core biopsy showed ADH columnar and papillary types , does anyone know much about these subtypes and if they increase the chance of it being DCIS? I have been doing a lot of reading as I wait, but can't find much regarding subtypes of ADH (only DCIS). thanks everyone!
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Hi Kmajovi, I can't answer about the ADH subtypes. I do know that I had a diagnosis of ADH and ALH 18 years ago, which was listed as "severe" ADH and ALH. In other words, the pathological changes were probably borderline to DCIS, or at least a more aggressive looking ADH. I had the slides re-read by a pathologist at Memorial Sloan Kettering, and the pathologist concurred with the report of the original pathologist. This diagnosis was based on a surgical excisional biopsy, not a stereotactic core biopsy, as they didn't even do those back then. The radiologist had been fairly certain that it would be DCIS, because of the linear nature of the calcifications. I had several intervening biopsies, all on that same breast, but in different locations, and no DCIS was found until 2012. My stereotactic biopsy in 2012 found ADH, again called "severe". Six pathologists from the same hospital read the slides and agreed it was ADH and not DCIS. I had the surgical excisional biopsy several weeks later, and what they found was DCIS, high nuclear grade, and lots of it, so the ADH was actually adjacent to the DCIS. I went for a second opinion (again at Memorial Sloan Kettering), and they agreed that the stereotactic core biopsy showed ADH and the surgical biopsy showed DCIS (extending into the lobules). So, I had a very long run without any DCIS found, although at some point it was developing, because they found over 5 cm of it. Anyway, I hope that your surgical biopsy doesn't find anything other than the ADH (or maybe even that the ADH was removed during the core biopsy). Best of luck.
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Thanks ballet12! I appreciate your response, kind of scary everything is so dependent on who or how the pathology is interpreted!
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Hi everyone,
Anyone out there with multiple ADH?
Am I glad to find you all? :-)
I am a 48
year old mother. I have two kids (11 and 14). During my annual mammogram
last December (2013), they found several-several microcalcifications on
my both breasts. At the end, I had to have 5 core needle biopsy, 3 on
right,and 2 on left (left one actually is 6 cm large area). It lasted 3
hours with one doctor and 3 nurses. I have no BC in my family.Result:
All are atypical cells, on right one Atypical Ductal Hyperplasia, on
left both (the entire area) ADH. I also have EXTREMELY dense breast with
tons of microcalcifitions.I have seen 3 surgeons, First two
strongly recommended bilateral mastectomy due to number of ADH I have,
dense breast have a much higher risk of getting BC sometime, of they
would do wired excisional biopsy.Third surgeon this "non-sense"
said. She wants to an excisional biopsy on the large area on my left
side and go from there.. I may already have stage 0 DCIS on left and
she will figure out treatment, right breast will be monitored no
additional biopsy even though I have one ADH. If everything is only ADH
then I will have to see her next 5 years every 6 months and use
tamoxfin.I AM COMPLETELY CONFUSED NOW. I know that I do not want
to leave in fear and go through this every 6 months. I do not feel my
breasts define who I am, and already pre-menopuse,.Can you please share your own experience and choice with me?
All the best,
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I am 51 and had surgery to remove ADH from the left breast last summer. (All testing negative -extremely dense breasts... BS went in due to discharge that tested pos for blood.) I have the discharge again from a different duct, same breast but I am waiting in an MRI in June. Just MY PERSONAL opinion....if the doc found ADH all over, then DCIS in one breast I would do the BMX. But, it's just a personal opinion. Please, let us know what you decide and how you are doing.
XO
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Thank you momcat. I was hoping to find other ladies in my situation but no luck (it is actually good :-). I have not see anyone with multiple ADH at the same time.
I will probably go with BMX, and let you know my final desicion.
All the best,
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lucky,
I just posted to you in another thread. I have both ALH and ADH in both breasts. I also have FEA in my left. It is frustrating to say the least. My biggest question to all my doctors has been how much higher is my risk with both ADH and ALH in BOTH BREASTS? No one has the answers.
I wish you peace in your journey.
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Cinvee,
I read your other posting, thank you. I also have FEA in my both breasts, That's why first 2 surgeons and the radiologist who ordered my 5 biopsies think that I am destiny to develop BC.
Wish you the best,
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cinvee----your risk doesn't increase if you have ALH in both breasts,: the risk is the same whether you have it in one or both breasts as it is a bilateral condition. I'm not sure if that is the same for ADH though.
anne
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I have experienced similar frustrations with my doctors not being able to answer my numerous questions, although my dx was just ADH in one breast. No one could tell me just what the risk was of the ADH returning after the excisional biopsy; no one could tell me just how much my risk would be reduced by the combination of things I am doing to try to stave off eventual BC, no one could tell me if the tiny amount if ADH found would decrease my risk from the usual 20-25% risk usually quoted for an ADH dx. Both my BS and my onc told me that this is because statistics are not kept on ADH the way they are for BC. Kind of like stumbling around in the dark with my fingers crossed. Frustrating and scary.
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What have you been doing last 3 years?
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Been seeing an integrative oncologist who has me on metformin and a variety of supplements. Seriously upped my exercise and lost 25 lbs. Used to drink a glass or 2 of wine a night-- now I limit it to 2 a week. Read labels on cosmetic products to avoid parabens and other chemicals, eat only organic meats (when I do eat meat, which is rare), and dairy, produce when available.
The most controversial thing I did was to have a considerable breast reduction. Many doctors do not subscribe to the idea that this cuts risk- however, I did my research and found an oncoplastic team in NYC that was on board.
I get some type of screening (mammo, US, or MRI) every 6 months.
I was perimenopausal when dx'ed (at 53) and did not want to take tamoxifen (I have had some endometrial issues.) Onc was supportive of this decision. Now I'm menopausal and onc thinks risks of taking either Evista or an AI would outweigh the benefits in my case. Not sure my BS agrees.
All I can do is hope the choices I've made have been wise and that I will be ok. Three years have passed though, and all this still makes me anxious.... alas.
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Hi everyone,
I really would like to hear from other ladies with
a similar experience. I am completely confused/scarred now. My brief
history is;
I am a 48 mother of two who diagnosed with several multiple atypical
ductal hyperplasia in both breasts. I have no family history. After
consulting with 3 surgeons I decided to have bilateral mastectomy. 2
surgeons were for it one was against it. I have no family history. My
MRI came back clean. I am having the surgery next week.
The
surgeon recommends that I ought to have her remove not more that 3 lymph
sentinel nodes from each side. I have read and discovered some unpleasant
possible side effects of the procedure. She is not saying I must but
just to be on the safe side. On my left breast the area with ADH is
about 6 cm. Entire area is ADH. On the right side I have one ADH and 2,
atypical cells.
Would you please share your experience of the
procedure? Have you had any side affects? I do not want to end up with a
life long side affect because of an unnecessary treatmentAll the best
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Luckymother - I responded to your post on another thread. I elected to do the SNB with my prophylactic mastectomy. I realize that there are those who think PBMX is a drastic choice, let alone SNB with a PBMX. But for me, personally, I know I did the right thing. I understand the risk of lymphedema - it was all explained to me. My BS is the director of the lymphedema program at the hospital. In addition, it was explained to me the potential risk of not doing the SNB, should a malignancy be detected in the pathology from the surgery. It was explained to me the reasons why I would be a good candidate for the procedure, and some factors that further reduced my risk. The hospital I went to has a multidisciplinary tumor board to which all cases are presented. Doctors from the various specialties discuss the case and formulate a recommendation for the patient. They recommended I have SNB, and despite the potential risks, I am glad I did. As far as the procedure - it was nothing. I had a radioactive dye injected into my boobs the day before the surgery. Most of the nodes were removed through the same incision as the MX, but I do have one additional (small) scar on the right side where a node used to be. I have not experienced any negative effects from the procedure, although I am only 8 months out from the surgery and I know that the effects can potentially come down the road. I am honestly not worried about it - I'll cross that bridge when/if I come to it. You need to do what you think is right, what will give you peace of mind. Did the other surgeons you consulted with give you an opinion on the SNB?
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My BS said that that's my choice. She does not think I have BC, however, she says :"I ought to". I will have to have on my both arms not one. Everyone I talked to has told me that I can not use my arms for blood pressure, and blood drawn. My BS did not explain to me this, I kind of pulled out of her mouth.
How many they took from you? Can you get you blood pressure and blood work done?
Best,
nalan
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Hello ladies - I feel very fortunate to have found this forum. I am 50 years old. My sister had BC and is a 21 year survivor. I don't know what type of BC my sister had, but it was "encapsulated." I was recently diagnosed with 2 "high risk" lesions in my left breast: Pseudoangimatous stromal hyperplasia (PASH) and Flat epithelial atypia (FEA) with Atypical Ductal Hyperplasia (ADH). After a recent MRI, the radiologist informed me that something "lit up" with the contrast enhancement - "irregular enhancement with indeterminate curve" in the area adjacent to the PASH lesion. Surgical excision of both sites was recommended. BI-RADS 4
Yesterday was my double lumpectomy. Just prior to my surgery, I needed to have two trace wires inserted to the areas where the marker clips were placed - this (to me) was worse than the actual surgery. The surgeon said the procedure went well - the specimen was sent to radiology to be sure the marker clips were removed and that I would probably get my pathology results next week.
My concern is if there is a possibility of DCIS. I have been doing a lot of reading online since the call-back after my annual screening mammo was done as well as after the subsequent diagnostic mammogram, Ultrasound, US-guided biopsy, stereotactic biopsy & MRI. From what I have read, ADH is sometimes concomitant with DCIS. I probably should not be worried about this unless the pathology report comes back that DCIS is indeed present. Truth is - I have been worried with each step of this process. Typically, I am the type of person who doesn't worry about anything...so why this??
Thank you for reading my post and thank you to all of you who have posted before me - I have gained knowledge through your experiences.
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Hi Ndahmer, best of luck on what must be a stressful time for you. I had the ADH diagnosis twice. The first time, based on an excisional biopsy (lumpectomy) and no DCIS was found. The second time, they did find the ADH on core biopsy and the DCIS on excisional biopsy (lumpectomy). So, it can occur concomitantly with ADH, as you said. I kind of didn't expect it, because I'd had only ADH/ALH previously. I didn't have an MRI until after the DCIS diagnosis, so your surgeon is being very thorough.
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Thank you for your reply, ballet12.
My surgeon gave tremendous credit to the radiologist. As she put it: he was "hunting" for this.
After my wire placement, I saw the radiologist in the hall and thanked him for his persistence.
Once again, I am thankful for finding this site and this board.
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You are welcome. MRI's are notorious for showing false positives, so you'll just have to wait and see what they find on pathology. I was supposed to have an excisional biopsy (surgery) on the other breast, based on something found on the MRI. I went to another hospital for a second opinion and the rest of my treatment. They repeated the MRI. I went from a BIRADS4 (first hospital) to a BIRADS3, and after a 6 month repeat (BIRADS2). On the other hand, there have been people here where IDC has been found on MRI, so it has been a lifesaver.
Good luck. Keep us posted.
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Hello!
I'm new here. Just so you know, I'm dragging my heels a bit about being here, but must face reality. I was diagnosed on Jan 13th, 2014 with multi-focal ADH and had my lumpectomy on Feb 18th. So quick! It could have been faster as I was given the option of getting it done in a hurry with a Dr that didn't communicate much, or wait for the one that did. Well, I'm not sure this one truly communicated, but he was definitely entertaining!
Anyway, I have done a lot of reading about ADH and the high risk is scary. I can understand why so many are opting for double mastectomies.
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I was diagnosed with ADH in Sept/13 & had Core Biopsy & then Lumpectomy. Along with my ADH, they found Flat Epithelial Atypia (FEA), sclerosing adenosis which also raise the risk for breadt cancer.
I have 2 sisters who've had breast cancer & just this month found out my 43 year ild niece has invasive breast cancer.
Am I scarred, you bet I am. My lifetime risk is about 58% & could be even higher if if there's a genetic thing happening here.
We all need to figure what to really do for ADH. I'm thinking mastectomy. Good luck.
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Wow Faith Hope Love, that's a lot to be going through. In Sept/13, I was diagnosed with ADH, sclerosing adenosis & FlatcEpitheluwl Atypia which all raise my risks for BC especially the ADH though I'm told. Plus I've 2 sisters who've had BC & just this month now a niece with Stage 1 InvIasive. I did the questions for risk assessment & I'm at least 58% & could be more if there's a genetic component. Good luck to you
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Wow Faith Hope Love, that's a lot to be going through. In Sept/13, I was diagnosed with ADH, sclerosing adenosis & FlatcEpitheluwl Atypia which all raise my risks for BC especially the ADH though I'm told. Plus I've 2 sisters who've had BC & just this month now a niece with Stage 1 InvIasive. I did the questions for risk assessment & I'm at least 58% & could be more if there's a genetic component. Good luck to you
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I just saw the oncologist yesterday and I am in a quandary. Diagnosed ADH in one breast and I am trying to decide whether I should take Raloxifene to reduce my risk of breast cancer. I am 70 years old, in excellent health and I exercise daily. The side effects of this drug scare me and I question if it is worth the risk to possibly reduce my quality of life to reduce my cancer risks. The oncologist has left it up to me to make that decision and all of my research indicates that this drug may have more negative side effects than benefits. I would appreciate any feedback from others to assist me in this decision. At 70 I wonder if losing 5 years with the side effects of this drug would be worth it.
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My lumpectomy was done last week 2/18/14. Tomorrow I meet with my surgeon for a post-operative visit and to discuss the pathology results. The biopsies (2) showed PASH, FEA with ADH. When I had my consultation with my BS she recommended at that appointment that I meet with an oncologist and that I should consider taking Tamoxifen. I too have heard about the potential side effects. I am a dental hygienist, and (sadly) a large majority of my female patients have had BC. Today, one of my patients (who knows what I am currently going through) told me she was on Evista and only lasted 45 days. She claims a "hormone specialist" told her to stop the medication as she was experiencing bone issues (osteoporosis), hot flashes, severe headaches & vaginal itchiness/dryness. I also have a benign liver tumor (Focal Nodular Hyperplasia) and I was told by 3 different liver specialists NOT to take any type of hormone therapy. I know Tamoxifen & Evista are estrogen blockers, but I would need to speak with my gastroenterologist first before considering and of these medications. My sister had BC 21 years ago (at the age of 41) and did not take any type of medication - she did have 7 weeks of radiation. I am 50.
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