ADH Club
Comments
-
Hello:
I have been healthy, except common cold every once in a few years. Seldom see doctor. I eat healthy and I have never had surgery done before.
Last year February my mammogram showed a small area of calcification on my right breast. I did biopsy, MRI and with agony surgical biopsy in July to remove that small area. The pathology report showed that I had ADH and the surgery removed the remaining fragments of ADH cells left from the initial biopsy. Oncologist did not strongly suggest taking Tamoxifen. She said it is up to me. I declined taking Tamoxifen since the surgeon indicated that if it was her, she would remove the small area rather than taking the tamoxifen since it has side effects. (another institution I went to would not perform surgical biopsy. It recommended medication like Tamoxifen and monitoring closely, or if I don't want medication, just monitoring it closely).
I thought I am done with ADH with the surgery.
10 days ago, I went in for the first follow up mammogram. Got a call to go in for Diagnostic mammogram. I went in yesterday. The mammograms show I have a small area of calcification on my right breast and there is even smaller area of calcification on my left breast.
The fear creeps in, mentally stressed.
Not sure what I am going to do next. I think I should at least do the biopsy. The radiologist suggested that if I do biopsy on the right side, I should do the left side even though the area is very small.
I have friends with DCIS and BC. When I told them ADH, they do not know anything about ADH. I feel so alone.
I hope there are people out there who have similar situations can share with me their experiences.
With grateful heart.
0 -
Hi Messina:
Did you have the 3 area of calcification when you had your surgical biopsy/surgery? or are they new?
I had one area when I had my surgical biopsy last year. Yesterday, I found out I have two new area with microcalcification from recent mammogram.
Thanks for sharing!!
0 -
Hi SAAdvocate,
I read that 10-20% of cases of ADH are "upgraded" to DCIS after excisional biopsy / lumpectomy.
I wish I could remember where I read it.... It may have been a site called "Moose and Doc". Follow the link regarding breast cancer. It was informative and easy to understand for my stressed out brain.
All the best and hoping everything is benign.
Dawn
0 -
Anyone have mastectomy for extensive adh??
0 -
Please don't feel alone Messina. I also had areas that were suspicious which showed up on followup MRI just six months after my excisional biopsy for very severe ADH. I'm copying and pasting what I wrote on this board for you.
- I dug out my biopsy report from 2009. It read: The specimen shows a spectrum of changes from flat epithelial atypic through atypical ductal hyperplasia, focally severe. the focus of atypical ductal hyperplasia with severe atypic is present 0.8cm from the medial margin and greater than 1cm from the blue inked lateral margin. Then the second opinion was sent to Beth Israel of Boston. They cytologic and architectural changes are not felt to be severe enough to warrant a definitive diagnosis of DCIS.
- I also want to add that six months later after a followup MRI my Birads came back as a 4 again.MRI read there remains an abnormal region of enhancement 3.2 x 1.4 x 2.3cm. So I needed another this time non excision biopsy. It came back as columnar cell change with atypia. The surgeon said at that point that he would not and could not do surgery again since my breasts are small and he had to take so much tissue out the first time.
- So for the last 10 years I've been going to my surgeon and having breast exams every six months with alternating mammo's and MRI's. I opted not to go on Tamoxifen .I was already going through a bad menopause with night sweats and didn't need anymore side effects from this chemoprevention. My last two MRI's show that the area with the enchacement has gotten less noticeable. I now am more concerned about the new studies which show the dye from the MRI builds up in tissue including the brain even without kidney problems. My surgeon was mad that I only had the mammo done with last visit and scolded me how high a risk I am for future breast cancer. I have no family history . Just the borderline DCIS. So paperwork is still sitting on my dresser for the MRI but I'm afraid to go. Don't want to worry about getting breast cancer 20 years from now only to find out that years of that contrast material will cause something just as bad earlier. I feel that mammo is enough right now since my breasts are no longer dense and can be read easily.
0 -
So glad I found this page! I was diagnosed with ADH in Feb 2018. I found the lump in the left breast just before Christmas 2017, I saw my breast Dr and had an U/S but it did not show up on the U/S. I was already schedule for a breast MRI at the end of January so I was told to leave the lump alone and wait for the MRI. I have extremely dense breast tissue so I do alternating MRI's and mammos every 6 months. The spot showed up on the MRI so I had a MRI guided Biopsy on Feb 1 and got the results on Feb 5 that it was ADH. I was referred to the breast surgeon for a lumpectomy and had surgery on Feb 19. Nothing else was found. I was suppose to start Tamoxifen but have not started it as 3 weeks post lumpectomy I have developed what is called Mondors disease so they don't want me starting the Tamoxifen until that clears up. I had a total hysterectomy last May 2017 and I think that was easier than going through this. I feel I healed way faster from that then I have from this. Wearing a bra is a pain in the butt and I can't wait to get home from work to take it off and I 4 weeks post lumpectomy now. I will see the breast doctor again in 4 weeks and have another scan to see if the mondors disease is cleared up and then hopefully start the Tamoxifen.
My question for you ladies is this. when I had my MRI they found the ADH and I had the biopsy but I also had a lymphnode on that same breast that was of minimal increase prominence in the axillary and of questionable clinical significance and they didn't biopsy that. When I asked them why they said they would only biopsy it if the lump came back with cancer and it didn't so there was no need to biopsy the lymph node. Do I need to worry that they missed cancer in this lymph node because they didn't biopsy that..
0 -
Hi MTT11 and leaflakegirl!
We just wanted to welcome you to Breastcancer.org, and let you know that we're so glad you've found our Community. Good luck with everything and please, keep us updated on how you're doing!
The Mods
0 -
Just had my excisional biopsy done on Tuesday. A little concerned about the surgical site as my breast is super swollen, red, and hot. I'm not running a fever, and it doesn't seem to be seeping at all. The pain meds are making me super cranky. I just wish this would stop. I've been so checked out emotionally, that I'm not sure where all my stress and fear is going, but it certainly isn't be processed.
0 -
I’m so sorry to hear that you’re having pain still. It did take a good week+ before I felt like the pain was finally subsiding. But I would recommend calling your surgeon - yours sounds worse than what I had
0 -
Diagnosed ADH after biopsy on left breast 3 weeks ago. All lumpy now...beyond just being dense.
Seeing Breast Surgeon on Monday.
What should I expect him to say? What questions should I ask?
Also have pain around nipped in opposite breast.
I don’t want to be an alarmist but I’m very nervous.
0 -
After extensive research and my own dx of ADH after an lx, I realized this was much more serious than what my dr initially portrayed. She didn’t tell me anything except that I have several areas of “atypia” in my b9 tumor and just said have mammos every year. I’m 39 and was dx at 38. I had to hunt down my pathology report myself. ADH is very hard to dx between DCIS from what I’ve read and many dx are actually DCIS upon further evaluation. I have silicone implants already so I’m scheduling to have them removed and have a small reduction to lower my risk and to make mammos easier to read as I have “extremely” dense breasts. I was about a “C” before the implants. I now have an area of enhancement and a cluster of enlarged nodes on the other other side after a breast MRI last week. Needs more testing I guess. Can’t wait for my surgery. Hopefully the enhancement is nothing and my nodes have gone down. I have thought I felt them in my armpit tho where before I didn’t, so I hope they haven’t grown.
0 -
Hi! Two years ago I was diagnosed with small amount of dcis which was Adh but close to dcis on first pathology from needle Biopsy. I also had extensive amount of adh which was too much to take out in lumpectomy. I'm on tamoxifen. Been on six month checks. Had another biopsy in two spots last month. Benign and adh. I've had 5 biopsies in 10 years. I've decided to do mastectomy. Can't deal with The stress every six months and knowing the adh is in there. I'm worried that there is more not showing on mammo.
Robin.
0 -
Robinda2970,
I too was diagnosed with low grade dcis in 2015, and had lumpectomy and radiation therapy. I just had lumpectomy for adh Jan 2018. I'm not taking tamoxifen or any hormone therapy, but they are pushing it.
I applaud your decision, i may not be too far behind. God bless you sister. I'll be praying for you.
0 -
Hi! Last Thursday, I had my annual check up and they found a suspicious right breast lump and BIRADS 4. The recommendation was have a biopsy but I asked the BS to remove the lump. I had needle localization wide excision last Friday. I received the biopsy results yesterday which said: Mild fibrocystic changes with cyst formation, apocrine metaplasia, duct ectasia and focal atypical ductal hyperplasia (ADH), completely excised. Negative for malignancy.
I have an appointment with my BS this Thursday and would appreciate any tips on what to ask.
I am scared what the ADH diagnosis means for me
0 -
Follow up...
I just saw BS.
It was suggested I schedule an excisional biopsy. I am tomorrow
Followed by scheduling a appointment with a oncologist.
Not sure what to think but feeling pro active and hoping path comes back clear.
0 -
RLM, thank you. If I only had one area of adh I would do lumpectomy. You are fortunate you have that option.
0 -
Does anyone know the stats on finding cancer after a wire exisional biopsy? Percentage? Found ADH with core biopsy and now this is the next step
0 -
I think it’s about 20% of the time that cancer is found on excision
0 -
I'm new here. My history is similar to some other recent posters. I had microcalcs in 2011, followed by needle biopsy, which showed adh, followed by excisional biopsy/lumpectomy that showed adh with clear margins. Consulted with an oncologist and declined tamoxifen.
In 2016, more microcalcs that had changed, another needle biopsy, this time benign.
2018, changed microcalcs again at my March biopsy (had been going every 6 months and if this one was ok I could go back to annual.) Had a needle biopsy of 2 suspicious areas on Tuesday. Results today--adh in one area. I have a consultation with my breast doctor next week.
I'm wondering about over-treatment. I read that adh isn't cancer, but then read that after cutting it out, sometimes it's found to actually be dcis or invasive cancer. And the percentage seems high--15-20%. And Robin, who posted above, is getting mastectomy because she's so tired of this cycle. I remember reading about some women doing that and thought it was crazy when there's no actual cancer, but now I completely get it. I'm tired of this and this is only the 2nd time (3rd biopsy) finding anything. I'm pretty sure my doctor will recommend surgery, but I'm worried that my breast is too small to do a lumpectomy. Another dr told me last time (when it was benign) that if I needed surgery, I might have to get a mastectomy.
Does anyone know of a good source of research with statistics on adh upgrade to cancer?0 -
Incision site is doing much better. Emotionally still not back to normal yet. The results of the excisional biopsy were good -- good enough all considered. ADH will clear margins. So nothing more serious than what they found in the needle biopsy. I've been having a bit of bloody-ish discharge from the nipple though. Thinking maybe it's just from the duct being cut?? Anyone have similar experience?
0 -
cgs- the reason they require taking the lump out is because about 20% of the time they find ADH, they also find cancer. That means about 80% of the time it's only ADH but the only way they will no for sure is if they remove it to find out. Basically the cancerous cells could be adjacent to the ADH and the needle biopsy missed them. I know it's hard to find statistics as I'm 38 (36 when mine was found and they also FEA and ALH in addition to ADH when I had mine removed surgically). I searched far and wide but didn't really find much online. If you have specific questions john hopkins has a website called ask the expert and the woman who answers is very kind and informative. But she will refer you to your specific dr to assess your own personal risk of developing BC in the future.
SAAdvocate- I also had bloody discharge from my nipple after my surgery. If it continues feel free to ask your dr about it. I'm glad you had good news!
0 -
Cgs. Feel free to private message me. I’ve had 5 biopsies. All benign or adh except one small area of dcis. Too much adh to be taken out With lumpectomy. I’m small. The last biopsies put me over the edge. I’ve had it. It’s been ten years of this. I’m also worried there’s more hiding behind the adh. It’s taken me a while but I’m finally at peace with my decision to have mastectomy.
0 -
SAAdvocate, I'm glad your results were good. I had that done 7 years ago with the same results--adh and clear margins. Now I'm dealing with it again (after a benign needle biopsy 2 years ago.)
Thanks wonderwoman. I'm meeting with my breast doctor tomorrow and I go to Johns Hopkins, so I feel like I'm in good hands. I did more digging and did find a good source of information generally--Annals of Surgical Oncology.
I did a search of "atypical ductal hyperplasia" and found a bunch of studies--all one page abstracts, so not too hard to read. The most recent was from Jan 2017 and basically said that women who have don't have surgery and are followed closely are at no higher risk for developing breast cancer than women who do have surgery. BUT, women who had ADH and surgery and were "upgraded" to cancer were excluded from the study. So they only looked at women whose surgery still just showed ADH, and women who didn't have surgery. But I guess those women who didn't have surgery were at no higher risk of cancer. So it's a little confusing. I also wonder if the women who DID have surgery just had higher risk to begin with.
I tried to post a link, but it wouldn't allow me to. I guess I'm too new here or something?
I also found various articles that said that if there are fewer foci or fewer ducts involved (not sure what foci are--I mean I know what they are in math, just not what it means here and my path report didn't say) there is a lower risk for upgrade to cancer after excision, so excision may not be necessary. But it does seem like excision is still the standard of care because they really just don't have enough information.
I'll find this out tomorrow, but I'm worried that I'll need a mastectomy because my breast is so small and I already had a lumpectomy for ADH 7 years ago. So that opens a whole new can of worms with deciding on reconstruction or not and if so what kind and what about making the other breast match. Part of me feels that my breast is so small, I'd hardly notice if it were gone and the feminist in me thinks I shouldn't care (and I'm 52 and married and don't need to impress anyone with my body). But another part finds the idea upsetting and yet another part thinks that if I have deal with this shit, I should get reconstruction and come out of it with bigger boobs and actually be able to fit into clothes properly.
0 -
Thanks Robinda
0 -
cgs- thank you for all that info! This can definitely be confusing and I appreciate you sharing what you've learned.
It seems like you are in good hands. I would also struggle with having mastectomy/reconstruction etc. I'm 38 now, married, done having kids. I have no idea what I would choose to do. Fortunately at this point I've only needed to have 1 lumpectomy. Just know whatever you choose to do you have many women here that support you and your decision!! Sending you love!!
0 -
Thanks WW.
0 -
Hi all. I'm also new here.
Briefly (long) 😁 history. At the time of my CA I was 36. I am now 38. I was diagnosed with Uterine Cancer back in May 2016. Early stage, Stage 1A.
I found a lump in my left breast about 6 months later and had a mammogram done and they found the calcification in my right breast. Go figure 🙄. They weren't going to biopsy the area but I demanded they do since I just got done having a radical hysterectomy for cancer. Well, glad I did because because they found the area in my breast to be Atypical Ductal Cell Hyperplasia.
Well because of my Uterine Cancer my breast surgeon and oncologist had me do genetic testing/family history. The genetic counselor found that I'm at a 43.4% chance of getting breast cancerin my lifetime 😬
My breast surgeon is recommending a Bilateral Mastectomy but Insurance will not cover reconstructive surgery which is $10,000 🤔
So a little over a year later my breast surgeon said I have to have a Lumpectomy. There has been little to no growth to this area.
I am going into Surgery this Friday for a Lumpectomy.
My question, finally is. Is it possible to have DCIS but with very little growth noted on a mammogram?
I'm so scared it's going to be upgraded from ADH to DCIS
0 -
My previous post didn't post. Here it is.
Hi April,
Are you in the US? I'm pretty sure federal law requires insurance companies to cover breast reconstruction after mastectomy.This forum won't allow me to post links--I think you have to post a certain number of times first--but you can google "The Women's Health and Cancer Rights Act"
I don't know for sure, but I would think little to no growth means that it's just adh and nothing else underlying. If it were cancer, it seems it would be DCIS and confined to the duct and they would likely get it all during surgery.
I've had one lumpectomy for adh (7 years ago) and am now about to schedule another. The first came back as just adh, nothing more. I'm hoping that will be the case for this one too, and pretty hopeful that's the case since the doctor said the area is small and focal, which means it's less likely to be upgraded. If it does turn out to be cancer, hopefully it will be completely taken out during the surgery.0 -
I met with my breast doctor today and she said that she can do a lumpectomy and doesn't need to remove the whole breast. The area in question is small enough, that even with my small breast, she can do it. I'm relieved.
0 -
I am a US citizen but was sent to a plastic surgeon who does not accept insurance or something? I’m not a Bilateral Mastectomy point yet. I’m going with the Lumpectomy first.
My doctor said that ADH is very slow growing and may never turn into cancer, but because of my cancer history and finding it so soon after my cancer dx the dr wants it out.
I’ve also heard that the tumor could be encapsulating cancer.
I’m also going to out of work for 2 weeks which seems excessive. I’m a Hospice Nurse so maybe that’s why.
So this Friday is the day. I go in to Radiology first for a wire placement (marker) then off to surgery.
There’s questions I forgot to ask the dr like how deep is the tumor, how big is the tumor and how big is the incision going to be.
Ugh 😑 I hate when I forget to ask questions.
0
