ADH Club
Comments
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Hello KLR63, that's exactly it. In around 20% of cases, ADH is "upgraded" to DCIS / invasive carcinoma. This was the case for me - I had atypical cells on core biopsy and DCIS on excision. As for the MRI, I consider it en effective tool if you have access to it - it's much more sensitive than mammo/ultrasound - which is great for younger patients, or patients with dense breasts. However some doctors don't like to prescribe it systematically since it yields a high number of false positives.
Hope all goes well with you and that they don't discover anything else hidden. Let us know how it goes!
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Hi I am new here and want to tell my story. My mother was diagnosed with BC at age 67 and is a survivor. In Feb of 2017 I went for my yearly mammogram and was called back for another screening. They explained to me that they have been watching a spot in my right breast for the last 3 years and the calcification were starting to cluster more and they thought it warranted a biopsy. Had a mammogram guided biopsy where I was diagnosed with ADH and my breast surgeon wanted to do an outpatient lumpectomy. I was schedule for that April 12, 2017. My follow up appointment we discussed my treatment. She wanted to do more frequent screenings. (MRI in 6 months then mammogram in another 6 months) We discussed Tamoxifen and the side effects vs the benefits. My BS was not completely convinced that I needed to start Tamoxifen. So I decided not to start taking it and just do more frequent screenings. On Oct 13th went for my MRI and my dr called with the results and I was clearly thrown off guard. My right breast MRI was clear BUT they found a 9mm mass on my left breast. So they wanted me back to do an ultrasound. The ultrasound and Mammogram showed NO mass. However, they wanted me to have a MRI guided biopsy but they were convinced it would be benign. The results showed that I now have ADH in my left breast and I am scheduled for another lumpectomy on Nov 22nd. My dr wants me to start Tamoxifen. I am scared of the side effects. I do not want to lose my quality of life if they are as bad as I have read on some of the blogs. Are any of you currently taking Tamoxifen? If so, are you having any severe side effects?
I also am concerned with the effects of mammograms and Ultrasound. Both of those showed no mass but the MRI found it. Had I not had an MRI would this mass of turned into cancer. I am consumed by the thoughts that every 6 months I am going to have to go through tests, biopsies and lumpectomies. Am I better off to get a mastectomy? or will that even be an option? Sorry for so many questions.
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Hi KLR63, I had three biopsies on both breasts which first two were ALH and third one benign. My BS said is not a cancer but is a high risk to became in the future. He also recommend surgery and 10/10/2017 I had on both breasts. My results were the same, Atypical Lobular Hyperplasia,no cancer Thanks to God. I have never had MRI so I cannot tell about that.
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Hi KLR63, I had three biopsies on both breasts which first two were ALH and third one benign. My BS said is not a cancer but is a high risk to became in the future. He also recommend surgery and 10/10/2017 I had on both breasts. My results were the same, Atypical Lobular Hyperplasia,no cancer Thanks to God. I have never had MRI so I cannot tell about that.
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Reposting this here...
Hello, All.
I haven't posted in a bit. (I have a long history of benign issues, surgery, Bx, etc. ADH in 2013 excised in left breast.) I had bloody nipple discharge on the right side 3 weeks ago. Had a galactogram, 3D mammo, and an ultrasound done and last week an MRI. The radiologist noted enlarged ducts as usual, bu no enhancements, etc. YAY! I mentioned that all of the same tests did not pick up the ADH in 2013 and she wants to send me for a surgical consult (same surgeon from 2013 whom I see regularly.) I am praying for this to happen over Christmas break as I teach. I had pneumonia all last week, and have had some of this breast testing done during school hours. Boss isn't very sympathetic. lol Just good thoughts and prayers, please. If this side shows atypia, what do you do but keep excising it?? Thanks everyone.
XO, Cat
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Josieg So sorry your going thru this! I understand how scary it is. I've been trying to find some info myself. I had IDC in 2011 at age of 31 and did lumpectomy, chemo and radiation. I just did reconstructive surgery finally and the left breast showed ADH. I'm super scared, I see onc in a few days but the suspense is killing me. Wondering if I should have just chopped them off back in 2011! Wondering if you saw the breast surgeon yet?
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I'd be more concerned about mammos than MRI, mainly because not all types of contrast accumulate in the brain, but all mammos give a shot of radiation to already vulnerable cells.
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Hi guys,
So I'm 21 (really young, I know) and found out a lump in my right breast is ADH. I have like 3 fibroadenomas in the same breast, so I've had quite the history with ultrasounds and biopsies, and was really surprised with this diagnosis. I'm honestly terrified because I'm so young and I made the stupid mistake of googling ADH and read all the stats about how your chances increases by 5% and up each year after diagnosis. I'm seeing a breast surgeon (actually the one who treated my mom's BC when she was 58) to talk about my biopsy results. I guess I just wanna know if there's any advice or hope because I'm incredibly anxious about all this
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Sayheysam - Sorry you have to deal with all of this at such a young age. I was diagnosed with ADH about 4 years ago. I was just going for testing every 6 months for a while to keep an eye on things and then they were moved to once a year. After a discussion with an aunt who is stage 4, she has me worried about just having tests once a year given our family history. I have scheduled an appointment with my surgeon (also my mom's surgeon for her BC) on Jan. 3 to have a discussion about whether I should just go ahead with the surgery. When I was diagnosed with ADH she recommended I have surgery at that time but supported my decision to just keep an eye on things. Now I am worried that maybe I'm just playing with fire by waiting. We will see what she says. Good luck with your appointment and let us know how you make out. I know this is all very stressful. Gentle hugs to you.
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Colleen,
Thanks for your response, I really appreciate it
I'm sorry that you're going through these concerns and worried about what steps to take next. It sounds like you have supportive people by you who are helpful when it comes to making these decisions, and I'm sure your surgeon will be able to guide you with how to proceed with your breast health. Good luck with your appointment on January 3rd! Let us know how it goes.0 -
Officially joining the club. A little about me: 42 years old, with a history of cysts and very dense breasts. Started getting mammos about 4 years ago. Always get called back for diagnostic and ultrasound due to breast density. Have had a few cysts aspirated when they've gotten to be too big. Went for annual in November. Was called back (as usual), but this time for calcifications. After magnification mammo,the radiologist took me in a room to talk (that's never happened). They were concerned, as the microcalcifications were in clusters and in a linear pattern. Stereotactic biopsy last week. Results yesterday of ADH. Doctor from hospital said they are very concerned about what may be behind the area they biopsied. I have an appointment with breast surgeon next week. Hospital doc said to plan on surgery to remove more tissue for testing. I know this is going to sound weird, but my biggest concern is taking time off work. I'm a teacher, and I hate missing. Every day missed is one day lost of instructional time for my kiddos. Anyways, just wanted to introduce myself, as I've been lurking on this thread since yesterday.
-Paula
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Hello. I have just joined the ADH club, but unlike the rest of you, I live in Europe. I am 65 years old and there is no history of breast cancer among my first degree relatives. I have never smoked. I am very athletic, have been a vegetarian all my adult life and had my two children young and nursed them, so this came as a shock to me. First I took a routine mammography and they found microcalcifications. Then I had to go in for a stereotaxic biopsy and I was diagnosed with ADH. Half of the doctors I spoke to said to have an excisional biopsy, to see if it is DCIS whilst the other half said it was not necessary, because the lesions are very small. I have subsequently decided not to have one done. The doctors in my country are opposed to Tamoxifen and other SERM drugs, whilst the doctors I have contacted in both Canada and the U.S. have encouraged me to take either Tamoxifen or Raloxifene, which is very confusing. I have been told that at my age I now have a 15% chance of getting breast cancer in my lifetime. I have been advised to just undergo "watchful waiting", which means to have a mammography every year and semi-annual exams. What experience have all of you had with Tamoxifen or Raloxifene? What is usually done in the U.S. for women in this situation? Thank you for your help. Lisabettina
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Hello Lisa..Nine years ago I had two surgeries for focally severe ADH . I was going through menopause and already had trouble sleeping with hot flashes so I decided not to take the Tamoxifen with the associated side effects. I also have no family history of breast cancer. My surgeon insists on yearly mammo with Mri. I am 59 years old now and he said my odds go up not down. But it has been a losing battle trying to convince my surgeon that since all my scans have been clear for all these years that I wish I could just have the mammo. I don't understand why I am such high risk with JUST the ADH.
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Dear Pattimay, Thank you so very much for answering my message. I have never been up against anything like this before. I wound up taking three sets of mammographies for my tiny microcalcifications, thus, being exposed to radiation three times. From what has been explained to me by American and Canadian doctors in the field, Tamoxifen or Raloxifene could bring the risk down. However, here in Switzerland they don't use these drugs for ADH, claiming they have too many side effects and they have refused to do an MRI on me, claiming it would show nothing. What is it that your surgeon wants you to do now? I know that doctors are starting to realize that "a watch and wait" approach is appropriate with low grade DCIS, so if ADH is below that, why should one need anything else? (Read about the Comet study in the U.S. and the LORD study in Europe). There is a lot of conflicting information around, even in the medical journals. I sent my mammography X-rays to different doctors and got different advice from each one. You might want to get the opinions of other doctors in the field. The fact that you have gone nine years without ensuing problems sounds positive to me. What surgeries have you had for ADH? I decided not to have an excisional biopsy for a variety of reasons, among them that my microcalcifications are very tiny and that I had a horrible reaction to the needle biopsy, from which I am still in pain, and I was backed by several doctors regarding this. I am afraid that I will fall ill from worrying about this! I wish I had never taken the initial mammography because I am losing sleep over this diagnosis.
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I had my appointment today with my surgeon. We discussed the surgery and whether to do re-construction or not. There's a lot to think about. Since my next MRI is in July or August she feels comfortable letting me research my options until that appointment then we will discuss what's next after my MRI. Now I will be doing lots of research to decide whether or not to have reconstruction.
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Hi everyone,
Well I'm fairly new to this forum, I have posted before about my diagnosis of ADH in both breasts. I continue to be monitored with annual mammo and MRI. Should anything suspicious appear between annual exam, doctor will see me to determine if any test/exam is required. My most recent mammo/MRI appear to be very good and I'll see them in a year, which I was thrilled about. But, once I started reading report and came across new terminology that I haven't seen before, I started to research. The new term on my MRI result is that I have "moderate stippled-type of background parenchymal enhancement", (BPE) . When I looked up BPE, new studies show that it increases your risk for developing BC 9 fold. At my follow up app't I discussed the BPE with my oncologist, and her thoughts were it's nothing to be concerned about, but again, we'll keep a close eye on you and continue with annual mammo/MRI. Tamoxifen was mentioned to me to help reduce my risk. But, like so many of you, it's so hard to make the decision as to what direction with treatment, surgery, etc...to choose. At times I feel if I can physically handle the surgery of a bilateral mastectomy with reconstruction (DIEP), I should go for it and put a stop to this constant roller coaster. To the oncologist it would be a drastic measure since it's not a cancer diagnosis, but an indicator to increased risk for developing BC.
In closing, you're all in my thoughts and we all struggle to deal with this disease each day. Any input would be greatly appreciated.
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Hello everyone! I'm glad I found this topic, as I was just diagnosed on Friday with a radial scar and ADH. This all started with an architectural distortion discovered on a diagnostic mammogram back on 12/19. I had an MRI-guided biopsy last Tuesday, and that brings me here :-).
My BS said the normal course of action is removal of the radial scar and ADH, although since mine is only 2 mm she said in the end it was my decision to do it now or take a wait-and-see approach. I decided I'd rather go ahead and take care of it now, so I'm scheduled for an excisional biopsy on 2/22/18.
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Hello everyone,
I'm so glad to find this site.
I received results today from a core needle biopsy after suspicious calcifications were found on my mammogram. The nurse called and said they found ADH and they would do my next mammogram in six months.
I've been reading all I can find out about ADH and it seems many women have excisional biopsies and see specialist physicians.
Has anyone else been told they have ADH but not been recommended to have an excisional biopsy?
I read that with excisional biopsy 10-20% of ADH are "upgraded" to DCIS and am worried.
thanks so much.
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Hi drala! Glad you found this site - it’s been a great source of support since I joined almost two months ago.
My surgeon said excisional biopsy is the normal course of action, but she didn’t force it on me. I decided to have the biopsy just to hopefully ensure that it’s not anything worse
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Hello momto3sons,
Thanks so much for your reply.
I think I will schedule an appointment with my primary care doctor and advocate for the excisional biopsy.
thank-you!
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I think it would definitely be worth asking about. Keep us posted
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Hello everyone. I am new to this forum and this is my first post ever on a site like this. First, I'd like to say this website has been great with sharing helpful information with me. I am 43 years old and my first mammogram in September 2017. I had suspicious calcifications that were biopsied and diagnosed as ADH. It was recommended that I have the excisional biopsy/surgery to verify nothing else was hiding. The surgery was successful and results were just the ADH in my right breast. I have 3 other areas of calcifications that will be watched in my 6-month mammo follow-up, then 12-month MRI follow-up. In early December, I consulted with my oncologist, surgical oncologist, and primary care physician, and all recommended for me to start Tamoxifen since I have been deemed high risk due to the presence of ADH. I have decided to start Tamoxifen tomorrow, Valentine's Day. I am nervous, but confident in my decision after reading all the research and meeting with my team of docs. Any words of advice/encouragement from other's using tamoxifen as a preventative would be appreciated. Thank you
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I met with my surgeon, and my biopsy results are no cancer!! Super stoked. So, it looks like I'll be staying in this club. I go back in six months for a mammo on the ADH breast, and six months after that for a mammo on both breasts, US and MRI. My doctor talked to me about Tamox., and I'm leaning towards not taking it. He made me promise to talk to the oncologist and get all of the info before I decide. I meet with her March 13.
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That's great news!
I've got 9 more days until my excisional biopsy...wish it was this week just to get it over with. Then I meet with my surgeon on 3/1 for the post-op and I'm assuming to go over what they found.
We did talk briefly about Tamox, but not in great depth. Basically she said due to my age she wouldn't recommend it at this time.
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I'm going to talk to my family doctor tomorrow about the excisional biopsy.
thanks so much.
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I hope the appointment goes well!
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I saw my family doctor and he did refer me to a breast surgeon.
I'm relieved that I'll be getting care from a specialist.
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I’m glad you got a referral. Keep us posted on how it goes when you get to have your appointment
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@Messina - your situation sounds very similar to mine. Although as of now I’m holding off on Tamoxifen, but that might change depending on what the biopsy shows.
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Hello Momto3sons,
I did see a BS and an excisional biopsy is scheduled for March 6th. I see yours is the 22nd.
How are you holding up?
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