ADH Club
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Hi everyone! My name is Grace and I have recently been diagnosed with ADH at the age of 21. I had a lump for a while that took me a while to get checked out, but when I finally did, we found more lumps. I had a biopsy, where we discovered it was ADH and an excisional biopsy to remove 3 precancerous lumps. It has left me with many cosmetic issues, like my right breast is dimpled and flat on the bottom and a lot smaller than the other. My left breast only dimples when I lay on my side. I am currently waiting on the results of my genetic test. Its really hard to find answers online because no one has ADH at the age of 21 that I have found.
I have a family history with cancer in multi-generations, prostate, uterine, and breast.
I do not want to take tamoxofin especially because of my age. When I ask about a BDM, everyone looks at me like I'm crazy, but i feel like being on surveillance would be waiting for cancer.
I should find out within the next week and a half the results of my genetic test. The counselor said she would not be shocked if it came back positive. Basically, has anyone else been diagnosed with ADH this young? How did your treatment go?
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momoschki, I don't think the risk necessarily goes up over time, though it does look that way. I think it's more like it's a 30% lifetime risk. Some percentage of that will happen sooner rather than later. And I think they check every 6 months for 2 years to check the area that was of concern. If it doesn't change in 2 years, then it's not as much of a concern anymore. I don't know. I can do math, but I was always bad at statistics. I should ask my kids. My doc has recommended yearly MRIs in addition to yearly mammos (once I'm allowed to go back to yearly mammos), so I'd be checked twice a year. So far I've declined the MRIs. Just seems like more false positives and injecting bad stuff into your body. But it would be a check of some kind every 6 months.
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graceeallen, I'm so sorry you're dealing with this at such a young age. My daughter is only a year younger. I'd hate for her to have to go through that. I would wait for the results of your testing, but the cancer in your family is a concern for sure. I don't think surveillance is waiting for cancer, but everyone has to do what makes them feel best.
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Morning! Yesterday I met with a new Breast Surgeon because my old one doesn't take my new insurance. She was awesome! An expert in the field and leading new research at Cedars Sinai in LA. I finally feel like I'm in the place I'm meant to be. That being said, I've never actually met with an MO because my previous Dr felt I wasn't a candidate for Tamoxifen. So this new Dr asked me why I'm not on it. Then she calculated my risk which is much higher than I imagined it would be. How do you guys deal with that? I mean I knew I was high risk, but had no idea it was almost 50% chance. I have 2 little kids and I'm only 38. I know I just need to be diligent about screening, and I know that BC is definitely able to be treated with GREAT outcomes. I guess it's just all really sinking in even though I was diagnosed in end of 2016.
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hi All! My story... I'm 48. Years of biopsies in calcifications. Came back benign. Two years ago small amount of dcis and lots of adh found. Had lumpectomy. No radiation. Was put on tamoxifen. The original adh was left there as it was too much to take out with lumpectomy. Last feb. two more biopsies. Benign and adh. I decided to do mastectomy. Im brca negative..
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I was diagnosed with ADH after my excisional biopsy for a radial scar / complex sclerosing lesion last week. I am 58 years old and my breast surgeon decided not to put me on any A.I. medication or Tamoxifen due to my history of having had a blood clot during pregnancy, serious back problems and a sister who died of uterine leiomyosarcoma diagnosed at age 37. He is planning on having me do mammograms and MRI exams every six months I believe.
He also acted like this diagnosis wasn't that big of a risk for future b.c. I'm a little worried. My husband thinks I'm overreacting.
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I am so thankful that i found this thread. I guess i need to join this club, and I am looking for advise and guidance from this community. Here is my story:
51 year old, very healthy, no family history of cancer, had one child (breast-fed), normal mammogram for the last 10 years so so, no lumpy breasts, no lumps found at all, no pain, no discharge, etc. I did the screening mammo at the end of May, and was expecting normal results as usual. But got call back the next day re: several areas that the radiologist saw that I needed to do diagnostic mammo and ultra-sound. Completed both on 6/4, and they found microcalcifications on the left that are suspicious and two suspicious masses on the right that i needed to do stereotactic vacuum biopsy on the left and ultra-sound guided biopsy on the right. This came as a total surprise for me given my healthy history, no issues with past mammo, and no palpable lumps, no other issues with my breast. I did the two biopsies on Wednesday and received the "FINAL" pathology report yesterday. The left side shows "ADH". I thought ADH is good news, not cancer, but I am confused about the report. I have an appointment with my breast surgeon this coming Wed, and i would like to be better educated re: my situation before i see him. I would very much appreciate your help in providing some insights and guidance.
Here is what the pathology report said:
Pathology Outcome Section: High Risk
Pathology Result Section: The pathology for the left breast stereotactic biopsy is benign, yielding ADH in a background of proliferative fibrocystic changes with associated microcalcifications. The pathology results are concordant with the imaging findings. Surgical consultation is advised. The pathology for the right breast at 11:00 and 11:30 o'clock is benign yielding fibroadenoma
Impression: left stereotactic-guided vacuum assisted core biopsy completed. An addendum will be provided when the pathology results are available
BI-RADS Path: Addendum Report will be made available when path results are available
Here are my questions:
1. If i interpret it correctly, both sides are benign, which is good news. If that's the case, why is surgical consultation advised for the left side. Isn't the finding benign, not cancer, and the end of the story?
2. I am not understanding the verbiage under Impression and BI-RADS Path. It only mentioned the stereotactic biopsy completed on the left. It made no mention of the US guided biopsy on the right. Is this report incomplete? Also, why does it say addendum will be provided when the pathology results are available? Same for the BI-RADS Path section that reference addendum report will be available when path results are available? Did they not already have the path results to publish this "FINAL" report and ruled both sides benign?
3. From reading this thread, it looks like folks are diagnosed with ADH initially, but then it later found out to be DCIS or IDC. Isn't the needle biopsy supposed to be very accurate? Why did the needle biopsy not pick up the DCIS or IDC pathology?
4. For ADH, what treatment options/plans can I expect down the road? OR do i need treatment at all or no actions needed, just watch and monitor?
Sorry for so many questions. But my mind works better with information and knowledge.
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Elsa, yes, your biopsy findings are benign, but surgical consultation is indicated because ADH is generally removed. It’s possible that the needle biopsy did not remove the entire area, and in addition, the excisional biopsy (essentially lumpectomy) is wise because in about 20% of cases, DCIS or IDC is found. So the needle biopsy results may possibly not be the whole story (although the odds are definitely in your favor), and in that sense your pathology results are not yet final.
In terms of future treatment, there will usually be increased screenings (every six months), with some combo of mammograms, MRIs and perhaps ultrasounds. There are also preventive med options that can increase your chances of remaining cancer free: tamoxifen, raloxifene , or an aromatase inhibitor (the latter 2 if you are post-menopausal). After you get your excisional biopsy results, a consult with an oncologist can be helpful.
Feel free to PM me if you have more questions- I’ve been dealing with this for over 7 years.
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Hi everyone,
I'm 46 years old and my story is not different than many of you. Thought I would share and ask couple questions and I'm hoping to help others too.
After my yearly mammo (BIRADS 0) in May; I was called back for further images or Diagnostic Mammo, due to 2 areas of Calcification.
I had my Diagnostic Mammo (BIRADS 4) and was asked to come back for stereotactic breast biopsy again for 2 areas of Calcification.
During the biopsy they were able to biopsy only one area because I was taking asprin (80mg) and stopped only 3 days before. I was bleeding a lot. They had to stop. It came benign but fibrocystic changes and PASH.
Then I was scheduled for the 2nd biopsy for 2 weeks later. This time the biopsy results came benign but ADH and they recommended I see a breast surgeon.
I have been reading about ADH and trying to educate myself as much as possible before my appointment w/ BS on Wednesday.
The protocol is to have lumpectomy and sometimes some medication and/or in some cases radiation?
Anyone who had 2 areas of calcification one being ADH and the other normal?
I'm also interested in exploring natural supplements to keep immune system strong any reco's with supplements that you'd like to recommend for ADH will be great.
Thanks everyone and have a great Sunday!
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Futura, they don't do radiation for ADH. You might be offered Tamoxifen if the benefits don't outweigh the risks
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I just went to the follow up appointment with the breast surgeon today after the CNB biopsies last Wed. He spent maybe no more than 5-10 mins with me letting me know that it is benign, and the left side is ADH. He said to do surgery and that will cure it. After that, it is just regular mammo in 12 months. He made no mention about high risk, or discuss options of taking tamoxifen, or more frequent screening needed, or anything like that. Is this right? Am I just over-reacting to the ADH diagnosis?
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Thanks Melissa- good to know
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Anyone who had 2 areas of calcification one being ADH and the other normal?
Me. My latest mammo showed 3 areas of microcalcs of which 2 were concerning. They did a needle biopsy on both and one came back adh, the other benign. I had surgery to remove the adh.
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I just went to the follow up appointment with the breast surgeon today after the CNB biopsies last Wed. He spent maybe no more than 5-10 mins with me letting me know that it is benign, and the left side is ADH. He said to do surgery and that will cure it. After that, it is just regular mammo in 12 months. He made no mention about high risk, or discuss options of taking tamoxifen, or more frequent screening needed, or anything like that. Is this right? Am I just over-reacting to the ADH diagnosis?
He should have spent more time with you. You might want to consider another surgeon. As for tamoxifen, I think that's something an oncologist would talk to you about. I consulted with one after my first biopsy and decided not to go on it. My breast surgeon hasn't mentioned it. She did, however, do a risk assessment on me. After my last needle biopsy, I had to go for mammos every 6 months, but this time my breast surgeon (I wasn't under her care last time) said that I just need to go 6 months after surgery, and if that looks ok, then go back to yearly. She has recommended yearly MRIs though, so then I'd be getting checked every 6 months. I have so far declined to get MRIs. Not excited about the dye or the machine and lying still or the possibility of having more false positives, more biopsies, etc. But I might change my mind.
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Me too. I'm new here and just diagnosed with ADH a few days ago...trying to make sense if it all.
At my annual mammo they found two areas of calcification. Told me to come back 6 months later, where they found that one area had changed thus sent me for biopsy (April 2018). I wasn't told much other than they found abnormal cells and sent me to a BS to have excision biopsy (5/11/18). Had internal bleeding a week after surgery that had clotted; have been seeing BS for that (to drain & monitor) then 6/13/18 started having bleeding from 2 small holes at surgery site, which finally stopped 6/28/28 but had yellowish discharge until just a few days ago.
Anyone else have this type of complication after excision biopsy? It's been 2 months since surgery and only now seems to be healed, I hope!
Next, BS sent me to oncologist to discuss possibility of taking cancer prevention meds. Only then (few days ago) was I told I had ADH and it was explained to me. Thus still trying to process.
Doc said I'm high risk due to: 1) ADH, 2) my mom had breast cancer, 3) dense breasts, 4) had child over age of 30 (35 y/o)...thus recommends Tamoxifen due to high risk. My mom was put on Tamoxifen after her cancer treatment.
Anyone else with ADH taking tamoxifen? Doc says limited to 5 years. I'm 46 y/o, what if I am cancer free for 5+ years, then get BC, what can I take after treatment if Tamoxifen is limited to 5 years? I feel like i wanna wait tostart taking it...but doc kinda looked shocked and commented that my body is already producing pre-cancerous cells...kinda implied why wait? Btw: i also had a colonoscopy 5 years ago and they found & removed precancerous cells.
Wondering if i should take Tamoxifen. Oncologist set a f/u appt in a month where i need to tell her my decision.
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Hi, I had a diagnosis of a radial scar. My breast surgeon decided to do an excisional biopsy to remove it after my needle biopsy and a breast MRI. There were ADH cells found in the radial scar along with UDH cells. My breast doctor decided not to put me on any hormonal medication. I don't know why except that he said that there are a lot of side effects. I should mention that I'm 58 y.o. and post menopausal. I had a sister who died at the young age 40 of leiomyosarcoma of the uterus. I have read that Tamoxifen can cause uterine leiomyosarcoma. (my sister wasn't on tamoxifen when she was diagnosed with uterine leiomyosarcoma, it just developed spontaneously when she was 37 years old after giving birth, she was initially misdiagnosed with a fibroid, the dr did not send her for any imaging tests such as an mri, big mistake.) I also have arthritis very bad in my lumbar spine and have trouble walking (have had to use a cane for the last 8 years) and I had a blood clot in my leg when I was pregnant 26 years ago. Tamoxifen can cause blood clots. Needless to say I'm very confused about what to do. My breast doctor didn't seem to think I should be on medication which surprised me. (It's been 3 weeks since my exisional biopsy). I really didn't have any severe problems after the surgery which only lasted about 20 minutes, I was put under general anesthesia and had no problems other than a sore throat afterwards.
My breast surgeon wants to follow up in 6 months with a mammogram (that will be in December). He then wants to do follow up MRI's.
Other than a 2 inch scar above my left nipple/areola I had no complications after the lumpectomy but I dislike looking at the scar or touching it. It feels "lumpy" underneath it which makes me nervous. I only had bruising after the surgery, it's pretty much cleared up now except for the scar tissue.
I have an anxiety disorder and all of this stress is not helping it. I really don't want to take any of those medications but then I think what if I should get a second opinion?
I hate this disease. I feel like I'm going to get cancer eventually and have to go through more traumatic treatments. I watched my sister die from cancer 16 years ago and I'm still angry about what happened. Her son was only 6 when she died and she was very sick for 3 years of his life. I feel as though he has ptsd from losing his mom so young.
Also my mother is 80 years old, never had a bad mammogram. I also had 2 grandmothers who lived to be 88 and 89 and neither one of them was ever diagnosed with b.c.
One more thing, I also feel as though this whole b.c. tx thing is a crapshoot. They need to find a vaccine or something to stop it from happening to begin with or at least to reduce women from getting it. I doubt that is going to happen in my lifetime if I make it to be 90! Many cancers are caused by viruses, I wonder if some of these breast cancers are caused by viruses.
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It's nearly that time again for my appointment with my breast surgeon which has been going on every six months for nine years now. All started with micro calcs on mammo at age 50. Had excisional biopsy and results were the same as my core biopsy which was focally severe ADH and to lesser extent in other breast ALH. Still had large area at six month MRI but surgeon said he already took out 2/3 tissue so we will watch closely. Biopsy again showed ADH. After each yearly MRI the area that lit up has gotten smaller and now shows again much less conspicuous. I passed up on my yearly MRI in February. My breast surgeon was not happy. My breasts now after meno are no longer dense and as I said all looks well on mammo and last nine Mir's. I just can't take the Mir's anymore. I get anxiety laying there and always end up with a headache I think from the air blowing to cool machine or something. But I could handle all of that until I read there is research going on regarding the safety concerns about even one MRI never mind years.Research is showing that the gadolinium agent is retaining in tissues and brain even without kidney disease. Has not yet been determined what future health concerns might occur. Here is a article with the names of the most worrisome and least worrisome contrast . Just found this and will call up my radiology office and find out what they use. Anyone else do yearly MRI's and worry about this. ?
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Patti, my BS has ordered MRIs every 2 years since my ADHdx in 2011. I think I have had 3 or 4 altogether (I’ve lost track). I’m due for one this spring. Like you, I have read about the potential dangers of the contrast agent and brought this up at my last appt. I am 61 and, like you again, breasts are no longer dense. I wondered whether alternating 3D mammos and US at 6 month intervals would be adequate. My BS balked at this. My PCP agreed with me. I’m really in a quandary about how to proceed...
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Hi Momo..I tried that one on my surgeon too with suggesting the alternating US instead of the MRI's and he wasn't happy with that either. lol He makes me feel guilty and goes into how severe my ADH was etc. I have no history of breast cancer in family and like both of us no longer have dense breasts that would obscure reading a mammo.At my last mammo I asked to speak to the Dr. who reads all my mammos and who also did all my biopsies. She said no need for MRI and just get my yearly mammo and if I want instead of MRI get an ultrasound. But I feel like I'd insult my surgeon by telling him I asked for second opinion on my screening . I do trust that he's following protocal for high risk and maybe after all these years I'm wrong in letting my guard down? I'm wondering if I even continue seeing my surgeon anymore if I don't have the mris' anymore. I guess just for the breast palpatation? Please let me know what your decision was. I'll write again after BS appt. next month . I'm from NY also. Oh and I also didn't get a chance to call the radiology place about the kind of dye. Think that will make my decision and at least I can validate my reason for concern. to BS.
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Hello all. My first post.
Before I put my story out there, I have to say that I feel for all of you with this "Oh, it isn't cancer BUT it needs to come out immediately AND your risk for bc has now doubled and you will be closely followed up every 3-6 months and maybe you should take Tamoxifen but really, don't worry about it." I have had cancer. I know how it can change your world. It is horrid and frightening (to say the least.) My heart goes out to anyone/everyone who has a cancer diagnosis, now or in the past. I'm here, 32 years later and you can be too (unless you're an AARP member ... you may not live to age 100!
There is nothing like group support so thanks to the women who have put this together and who manage this little corner of the world.
Okie dokie.... here goes. I'm now 60. At the end of 2017, I had a callback that turned into a CNB after mammo. It found complex lesion/radial scar. CNB was non-malignant yet found ADH, ALH, FEA, papilloma. FYI, this showed up on mammogram but was non-palpable and didn't show up on U/S. I had an excision and it also didn't show malignancy. Still, ADH, ALH, FEA and several other acronyms. I also had 8 lymph nodes removed. (? on that one - I believe that they reallly thought that I had cancer.) FYI, I had some serious cording that started the week after an uneventful surgery. Thank god for physical therapists! That has resolved. I have a great surgeon and have seen a Plastic Surgeon, if needed.
This has scared the pants off of me, in large part because there are so many unknowns. I'm sorry but when I read that, going backwards, IDC comes after DCIS which comes after ADH (and ADH, depending on how it is read, sometimes is DCIS.) Going forward though, "Very few people with ADH get cancer." Ok, then why the hawk-eye survellience?
From reading the other posts from people with these "special" benign breast conditions, I see that many of you have been left hanging too with a lot of fear, a lot of questions. If anyone has come up with a good way to handle this twilight zone, please share!
I had lymphoma when I was young, no radiation, multi-agent chemo. I have UCTD (Undifferentiated Connective Tissue Disorder) because of Antiphospholipid Antibodies and some clot problems when I had lymphoma. I am on Plaquenil and baby aspirin for that. I've had 3 mo. Mammo. and will have 6 mo MRI this week.
What a shock when my sister (65) was diagnosed a few weeks ago with IDC, stage IIB and will have radiation after lumpectomy then 5-10 yrs of an AI. She has an excellent prognosis.
We both had mammograms a year prior to our new findings. We both have extremely dense breasts. I'm thinking that hers just wasn't seen last year. When I looked at my previous mammogram report, there was something possibly seen on the same slice (3D.) I had a call-back and ultrasound didn't show anything.
My bc risk is now: 5 yr: 6%, Lifetime: 26.1% so I am now officially at a high risk for bc.
In my quest to be educated and proactive, I saw an Oncologist. "You don't have cancer, You don't need to see an Oncologist, You should take Tamoxifen. Buh-bye" (Yup, I'm being cynical. I won't be seeing him again.)I can't take Tamoxifen for two reasons; The first is because of my clotting history. The second is because I'm on Plaquenil. Zikes but fairly new research has shown that an extremely small chance of blindness (retinal neuropathy) with Plaquenil is increased, I think 5-fold. (Freaky!) If I were to get bc (obviously, a huge fear for all of us), radiation could be a problem because of my connective tissue/autoimmune disorder. Aromatase Inhibitors would also not be in my cards.
I'm stuck. And scared. On the plus side, I know a lot more about how well bc can be treated. My sister's dx hurts my heart yet I feel that she will be ok.
My very stressed mind now says "IF I ever get bc, my treatment options are severely limited." Lol, I'm a very logical person. Perhaps that is getting the better of me? I know that having a mastectomy (a couple of them) will be rough with a recovery that is painful, takes a lot of time and a lot of work. I know people who have had them and, thankfully, they are happy and healthy. I am very much leaning in that direction. If my insurance won't pay for it, I'll use the medical financing. (I am now officially high risk so there is a chance.)
I am waiting for my MRI then the Dr. visit next week. I will get a 2nd opinion and possibly a 3rd.
I have typed out a post here about 5 times. I am having some "survivor's guilt." I've read many posts all throughout this forum. My best thoughts, wishes and prayers are with all of you.
I'm hoping for some clarity. (Yes, I will click "Submit" this time.)
Sorry for the very complicated post. You are all dealing with your own diagnoses so thanks for reading about mine. Does anything pop out at you? Am I missing something? Am I overreacting by thinking that having prophylactic surgery will give me the best chance (not 100%) of not developing bc.
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dense and denser...my long story (hope this helps). From my first mammogram 10 years ago I’ve had “issues”. First mammo showed suspicious calcifications which were biopsied, benign. Since then I’ve had areas that were followed that turned out to be nothing, more calcifications and biopsies. Then two years ago small amount dcis with atypical cells. Lumpectomy and tamoxifen. Last feb. more atypical cells. So after years of callbacks and 5 biopsies I decided to do mastectomy. Had it done July 2. Have expanders and recovering well. I could not deal with the stress anymore. I’m 48.
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Thanks, Robin.
This may sound odd but Congratulations on not having to go through all of that anymore. How great that you're recovering well. It hasn't even been a month! Here's to your expansion going well.
Because of my previous cancer, I started having mammograms at age 35. Last Dec. was my first biopsy. (I have had some cysts aspirated.) I've almost always had callbacks due to fibrocystic breasts. So, lets see, I've been doing this for 25 years now. As you all know, the call-backs hit the old Anxiety button. At least now it doesn't take a week to get results.
Once you get your implants and heal, will your followup exams be palpating by a Dr. Any regularly scheduled MRIs?
Cheers
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my surgeon said I will be checked by physical exam only. No mammos or mri.
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Hi there, Cherrybombs, welcome to our community! We know it's a scary situation to find yourself in, but it's definitely in your best interest to make that appointment with the breast specialist. There are options available to you to manage your ADH and lower your risk of developing cancer, and being proactive is the best course of action. Take it a step at a time, and remember, this community is here for you!
The Mods
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I sought a second opinion today from a breast oncology group. Having ADH puts me at high risk for breast cancer. My breast surgeon originally said should be put in tamoxifen. She was not an oncologist. In the second opinion because of no fam history of breast cancer, she mentioned tamoxifen side effects outweigh benefits for me at this time. She stated I will have breast MRIs and 3 D mammograms every six months which catch 98% of all cancer at Stage 0 at that point. She suggested maintaining healthy lifestyle: healthy weight, 150 min/ week of physical activity as well as a Whole Foods/ minimally processed diet. Just wanted to share and hope this info helps others with this diagnosis. I feel much better for now about my decision to hold off taking tamoxifen and opt for more frequent monitoring instead for now
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Kimc318- I am high risk due to ALH. My oncologist advised the same and felt very comfortable with me not going on T as the side effects outweighed the benefits in my situation. I am in my second year of increased monitoring. Nothing is guaranteed, but I feel very secure with the increased monitoring and visits with my surgeon and oncologist. It is interesting that my surgeon had stronger opinions about T than my oncologist did
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HI Everyone, I'm so glad to find a supportive community here! I learned so much by reading your postings. I had a core biopsy on Aug 10th on my right breast due to a suspicious spot on the Ultrasound although 3D Mammos were clear. I got the result a week later on Aug 17th: Atypical Ductal Hyperplasia. My family doctor wanted to refer me to a general surgeon from the same medical institution he is in (a clinic) to have an excisional biopsy. Here are my questions:
1. Shall I go with my family doctor's referral or shall I find a breast surgeon from our local breast care center? What if my family doctor cannot or will not refer anyone outside his institution? I may be able to find a breast surgeon by myself but that might be a long wait while I want to have the excisional biopsy as soon as possible.
2. Shall I insist on having a MRI done before the excisional biopsy (I haven't done it at all) to root out any other hidden suspicious spot? I was told I had extremely dense breast texture so mammos don't really help.
Any input is greatly appreciated! Thank you very much!
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Hi everyone, I'm new here. Could someone help me understand some of the terms in my breast core biopsy report? The diagnosis is Atypical Ductal Hyperplasia, but I'm puzzled by the following microscopic description:
1. the myoepithelial margins, p63 and SMMHC are performed and are positive
2. E-Cadherin is positive.
3. A Cytokeratin 5/6 stain reveals positive staining within nearly all of the ducts exhibiting hyperplasia. However, there is one duct showing a lack of staining.
Don't those positives point towards cancer rather than ADH? I'm so nervous and stressed out. I hope someone could come and help. Thanks.
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No, most are testing to confirm an absence of invasive disease or cancer. Positive E-cadherin confirms ductal (not lobular) cells
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Thanks MelissaDallas! You made me feel much better! I don’t know why but I still had a sleepless night—I feel my whole body so tense that I cannot relax. I’m not even tired—weird but frightening.
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