ADH Club
Comments
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Thanks Tinkerbell.. appreciate it.
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Nay, I don't have an answer for you, but I wanted to tell you I was asking my Breast Surgeon and gyno about statistics regarding AHD, FEA and age and they both told me they don't really know. I searched the internet also looking because I have ADH, ALH and FEA and I wanted to know exactly what my risk is of developing BC. I also couldn't really find anything except 1 thing that said it could be 8-10x more likely than the average woman.
So basically, it seems like they don't really know everything about our situation, and that even those that do have conflicting opinions. I realize that doesn't help much.
When I was going through my wait for surgery and results I was a ball of anxiety. Fortunately I had to keep it together because I have little kids and my husband was hardly home due to crazy work schedule. I know I need to get checked again in the next couple months, but in the meantime I've been trying to just focus on my life and let the worries of ADH and BC go. It doesn't serve me to worry, and I know it's impossible not to. I'm just trying to focus on the things I DO have control of.
I hope this helps...even if just to know that you're not alone in this.
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I could use some help since neither MO I've seen has answered this- what is the likelihood of developing ER /PR positive tumor if my core biopsy is ADH ER/PR negative and my lumpectomy was benign so no further tests were done on the later. My MO has put me on anastrozole recently with some concerning side effects. She feels that the sample size was too small for correct hormone testing on the core biopsy. Should I get a second pathology opinion
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botgirl welcome.
I had a core needle biopsy that showed 2 micro foci of adh lumpectomy showed nothing no adh or bc. I didn't get any pr or er neg or pos. as adh is not cancer its a precursor therefore we are at a higher risk of developing bc. Ive never heard anyone here coment on pr or er status with just adh. Maybe someone will jump in here with a better answer to your question. As far as hormonal treatment usually tamoxifen if you havent gone through menopause and theres others for post menopausal women, i know some ladies are on evista. I hope you get your answers this is a good group to join theres a lot of knowledgable women here. Good luck...
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Hello. My journey began when I started having bloody discharge from my R breast back in December. I was scheduled for a screening mammogram- which I was supposed to start getting last year at 35 due to my paternal grandmother succumbing to breast cancer. At the screening, the lady asked if I had any symptoms and I told her about the drainage. I ended up getting a diagnostic mammogram and a R ultrasound. Both were normal. My Dr referred me to a surgical oncologist. My first visit with him was in late Feb and I got a core needle biopsy that day. Results came back with Atypical hyperplasia. I had an excisional biopsy on March 7th. I have ADH, ALH, calcifications in my ducts, inflammation and milk production. I take Reglan for gastroparesis which causes the milk. I did a genetic test yesterday in the clinic. He wants to know my specific risk. I will go back in 3 months for a diagnostic mammogram and a MRI.
I've been trying to connect with people in a similar situation to see if they developed cancer. If so, how long after diagnosis of hyperplasia?
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How long did you wait between your core needle biopsy which came out ADH and then your excision biopsy/lumpectomy? My surgeon can't do it for 2 months...should I look for someone else? Not crazy about her to begin with but she said it's not urgent and can wait.
My lesion. Was .5 cm, so pretty small.
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How long did you wait between your core needle biopsy which came out ADH and then your excision biopsy/lumpectomy? My surgeon can't do it for 2 months...should I look for someone else? Not crazy about her to begin with but she said it's not urgent and can wait.
My lesion. Was .5 cm, so pretty small.
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I waited almost exactly a month. While 2 months seems like a long time to wait, I'd agree that it's probably not medically urgent. Still, if you aren't feeling comfortable with your surgeon, I'd look for someone else
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Hi everyone!
Diagnosed with focal ADH after stereotactic biopsy around April 20th. On Tuesday, May 2, I had an excisional biopsy, and I am now playing the waiting game for those results. My BS is good about moving this along. I went from 3d mammogram, to ultrasound, to stereotactic biopsy, to excisional biopsy in a matter of weeks. Even though things are moving along rather quickly, I have been very anxious. I am glad to have found this forum. They said it would probably take a week for the results, but that doesn't keep me from constantly checking my online account for lab updates, or anything that I may have missed. After a few weeks of waiting alone, I thought it would help to have some company.
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Diagnosed with ADH from CNB. Now, they want to do a lumpectomy to remove golf ball size area for further analysis, but I'm experiencing extreme reluctance. I'm 55 yr. old without breast/ovary family history. I have very dense tissue and micro calcification. Isit really necessary to do lumpectomy, or can I be watched for further changes? Although I have a D cup, I'm concerned with deformities/scaring. I would greatly appreciate thoughts on your experiences. Thank you!
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Topper, you really do need to have it done-in about 20% of excisional biopsies for ADH or other atypia, cancer is found. I had a golf-ball sized chunk taken out of a B Cup and it is almost totally invisible. The only way I can see a very faint dent is with my arm raised straight over my head.
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Thank you so much for responding Melissa. I have been trying to talk myself out of this and your input makes me feel a lot better. I am totally in the dark about any of these procedures, so being here and reading your experiences has been helpful. Thanks again
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Honestly, I thought the surgical biopsy was easier than the stereotactic one. I was in and out in a few hours at an outpatientsurgical center. Took one pain pill, then switched to Aleve for a day or two. If I could have avoided lifting I could have gone to work the following day.
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The actual CNB procedure itself wasn't as bad as the bruising, hematoma afterwards. I'm afraid this is the beginning of many years of biopsies etc. Thank you for sharing your experience as it helps in easing my anxiety around the upcoming procedure. The anxiety was so extreme yesterday that I had decided to cancel the whole thing until I read your post. By focusing on the actual procedure Ican delay thinking about the potential findings for now. Thank you so much!
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I think that fearing an endless cycle of biopsies is pretty common at the beginning. I know that was in my mind, but for most of us this hasn't happened.
I think it is easier to control bleeding preventing hematoma during a surgical biopsy, but I won't lie-I was technicolor for quite some time after mine. From what I understand, part of it is from the retractor to hold the site open. Still, I had little discomfort, and that seems to be the case with most of us. The gel cold packs help a lot.
The stereotactic biopsy itself wasn't very uncomfortable to me, but lying on my stomach on the that sway-back table for so long was awful. My neck and shoulder seized up in a muscle spasm while I was having to be stll. Ouch
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Yes, for me fear of the unknown can be so much worse than the actual outcome. Especially when I read other people's experiences and everything they have gone through, I realize I shouldn't be whining.
It's been a long few months since I saw my PCP in February who told me I had lupus. I was like, WHAT?!!! Saw a new Rheumatologist who said he didn't think I had it, thank God! Now, I just need to get beyond this procedure and hopefully I can move on. I can't wait to have it over with
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At least your PCP didn't tell you that you were in end stage liver failure from cirrhosis based on your large volume ascites, despite your insistence you had no risk factors, when in reality you had a twenty pound ovarian tumor:)
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Omg, Melissa, I can't even imagine! Are you currently in treatment, or in remission? I am sorry that you have been through such an ordeal.
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I'm fine. The worst part was the idiot residents terrifying my parents that I was uninsured and ineligible for a liver transplant. I had an unnecessary liver biopsy before they finally scanned my pelvis & discovered what was REALLY going on. I kept telling them that I had no risks for liver disease.
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The length of time between mine was 3 months. I asked to postpone excisional biopsy for about a month to coincide with school vacation week and my surgeon said it was no problem. However, if you're not happy you should find a surgeon you like, regardless.
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The more I read articles on the internet on an ADH diagnosis, I read that it often becomes a definitive cancer diagnosis after the lumpectomy. I didn't expect another roller-coaster ride so quickly after the pathology report from my biopsy. The folks who called kept stressing that it isn't cancer, but the internet articles seem to say that many times ADH becomes a definitive cancer when more tissue is removed at the lumpectomy. My mass, which the breast surgeon group refers to as a tumor is 8mm. I was told they will remove this tumor and 2cm of surrounding tissue. I then have to wait for pathology of all the tissues. I wonder, why a lumpectomy didn't happen first? The spiculated mass was seen on the mammogram and the ultrasound. What harm would going deeper first cause? Now it's to wait 10 days to see a terrific breast surgeon, then get a surgery date, and then wait for pathology reports. Patience is not my virtue when it comes to this.Did anyone not experience a cancer diagnosis after their lumpectomy?
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Kaso, please don't be swayed by whatever you've been reading on the internet-- ADH is only upgraded to DCIS about 20% of the time. The excisional biopsy (lumpectomy, essentially) is not done first because in the event whatever abnormality was seen on imaging turns out to be of no concern, the excision would not be necessary-- and it's more invasive than the needle biopsy.
When my excisional biopsy was done, nothing of concern was found. The ADH had all been removed by the needle biopsy
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I was dx with ADH in 2013 following a steriotactic biopsy. I went for a second opinion and it was confirmed . I declined the suggestion to take tamoxifen. I followed strict follow-up with mammograms/ mri etc for q 6 mo ; and was then cleared to go back to every yr "screening" mammograms; Dx of breast cancer came Nov 2016 - but only after my request for an ultrasound ; (My annual screening mammogram had shown nothing.) I just felt a little "thickening" - but no lump so NP ordered the ultrasound. I had 2 areas of CA identified in the core needle biopsy which followed the ultrasound. - ( neither of which had any relation to the ADH area of concern from 2013. ) I was told a MX would be necessary due to the location near the nipple. I opted for a bilateral MX since I have had so many years of biopsies / scares
FYI - my surgery involved reconstruction using flaps from my thighs. It was 11 hours long due to the complications related to the scar tissue from all the biopsies I have had through the years. I had at least 6 + ( lost count )biopsies through the yrs - leaving scar tissue to be dealt with in the reconstruction process using my tissue transfer. I do not regret the bilateral mx - but wish I had pushed for it sooner rather than accept it as their suggestion later. Continued biopsies only lead to more anguish and scar tissue. Then - you end up doing what is likely to be the end result anyway. Trust your instincts ! -You will be better off being your own advocate and being in charge of your own decisions once you gather all the facts. Good Luck!
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I'm so glad to have found you all. I was just dx with ADH in my right breast at the start of June. My sister has had two breast cancers leading to a double mastectomy with reconstruction. My breast tissue is very dense with microcalcifications, but the mass they found following a vacuum-assisted, MRI-guided biopsy is big -- 6cm on one side, 4 on another-- and it grew from one year to the next. No one has given me a percentage risk for BC, but I'm pretty high given my sister's history and the growing speed of this boob-eating mass of cells I've got.
Everyone seems to agree it needs to come out in its entirety, and it will leave my right breast very deformed because of the ratio of what is to be taken out compared to the breast. All of this led me to decide to have reconstruction.
Now, weeks later, I'm so anxious and still trying to decide which team to pick to do the surgery with, partly because one team said they'll do a lumpectomy, go in again if they need to, wait for the pathology report to come back, and depending on the results, do a masectomy if they need to (then they'd do immediate reconstruction) or go in again and take out more if they need to...and then if they've just done a lumpectomy, 4-6 months later, when everything has stabilized, they'd reconstruct.
The other team wonders whether there's going to be enough tissue left to work with, or if they should do a mastectomy from the beginning (regardless of whether there's anything lurking in there or not, assuming it's all good when they go in) and immediate reconstruction with tissue expanders (to implants). I freaked out a bit at the thought of a mastectomy right away and the PS is consulting with the radiologist and the tumor committee about my measurements on my test results to get their opinions on how much tissue he would have left to work with, but he said, I just don't want to leave you for 4-6 months if there's no point to it in the end.
When I read all of the stories in this thread about multiple lumpectomies, biopsies, 6 month screenings, etc., I wonder...would having the mastectomy now be so bad after all? Does anyone know the percentage chance of developing BC after a masectomy? I guess I need to make an appointment with an oncologist to ask this, huh? I'm so anxious these days...and I was already supposed to be having the surgery -- and still looking to pin down what kind and by whom.
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Tonight is the eve of my partial mastectomy. The initial diagnosis of the typical hyperplasia turned into a diagnosis of infiltrating mammary carcinoma with tubular features and well differentiated. I am highly ER positive 100% and low PR positive and so far neu negative and BRACCA 1/2 negative.
I'm trying so hard to believe that I am in the greatest hands at smilow cancer center. I'm trying so hard to believe that the "stage one " diagnosis remains. I'm trying so hard to believe that the sentinel nodes Will be clear. However I visited a new gynecologist who was somewhat aghast that I have not had an ultrasound of my ovaries etc. he said that due to my extensive history of fertility treatments five years of clomid followed by pergonal; The latter which resulted in the six children I have/2 sets of twins and 2 singletons. The gynecologist said the treatments have caused me to become "estrogen rich" that he believes has resulted in the ADH diagnosis that I have in my breast and a 2007 diagnosis ofbenign endometrial hyperplasia.
So now as I attempt to get sleep and pray to God that I'm given the strength to get through tomorrow surgery, I can't help to be afraid of what may be lurking in other parts of my body due to the "estrogen richness" from the years of fertility drugs.
I want to hope that if my sentinel nodes are clear and if my oncotype is low then the possibility of radiation to the breast by hormone therapy will attack All the estrogen in my body
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Oh Kaso, I wish you all the luck in the world in your surgery, that your nodes are perfectly clear and that you get the best path report back possible. I don't pray, but I'll be sending all the positive energy I can all across the ocean for you (I'm in Spain). You have six kids and have gone through fertility treatments! We already know you are a very, very strong person. You've got this!
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Thank you very much for all the info. I have done tons of research and even if its a new paragraph I read, for me, it is so helpful! I'm 40 years old and about 2 months ago I was diagnosed with ADH. I have one papilloma on my right breast and another esclerose papilloma with atypia on my left breast. I also have 2 fibroadenomas that have changed and are growing and they also found whats called a PASH which is considered uncommon but benign.
I know this thread is not current BUT It's refreshing to have found this forum where I can find support with those walking through a similar path. I have my surgery scheduled for the 17th of this month. My doctor suggested only removing the papillomas but I insisted on having the other 3 masses taken out. Not only because 2 of them are growing but because I'll be having surgery already. I'm the type that thinks that there's a reason this has all been found plus they are not suppose to be there, so for me, it's best to remove whats foreign. This has all happened in a matter of 6 months. I only had one fibroadenoma that was being monitored for about a year and a half. This is the reason I had been getting mammograms every 6 months in addition to diagnostic ultrasounds. My breast are dense therefore very hard to find stuff.
I went for a follow-up with my breast surgeon yesterday only to confirm what I had been feeling for about a month now. I had felt a somewhat lump, (I have so much going on, I do not know what to feel anymore), in addition with pain. She also felt it and scheduled me for an ultrasound. Today I had the ultrasound only to find out its 2 more masses and they did not look good so I had to get them biopsied. I'm grateful to God its being caught on time but now I'm waiting again for the results to see if on the 17th I will need to have more tumors removed. I've had so many biopsies in a lapse of 2 months that I don't tell people anymore until I have a clear picture of what needs to be removed.
I guess my main concern is the fact that because I'm 40 and with atypia that my chances for BC is not only high but in addition for it to be pretty invasive. I have 4 little boys and there are many things that cross my mind. I lost an aunt, (maternal side), to BC when she was 48. She went on remission for about a year and a half only for it to come back so agressive it became brain cancer.
I guess what bothered me at the beginning, when I was told I had ADH, was that my parents and sisters made me feel like I was over reacting, that I was being negative and that I was jumping to conclusions. I knew what I had researched and quiet frankly was scared and all I got was silence and after that, that I didn't need to think like that and that it was going to be fine as long as I had a positive attitude. Making me wonder if they thought I was having a bad attitude. I was so confused as I was not expecting this.
It wasn't fine, it still isn't, I'm not over reacting, as I had to research so much and ask my doctors many questions to get to that conclusion, and also asked them point blank if I was over reacting.
I'm so grateful to my loving husband, beautiful boys and the friends I have surrounding me that have taken the time to not only ask how I am but to ask me to educate them on what I have and on what I have researched because they want to better help me.
I have also read that the reason they remove these papillomas is because pathologist can't really determine through the core needle biopsy if this is DCIS because the patterns are so similar. Does anybody have more info on this?
Also, why is it so divided among doctors on how to label these breast changes? Why do they tell us they are benign when they are really not. These are not normal cells, these are abnormal cells that are forming tumors which are considered precancerous. It is true, we don't have BC but it is pointing to something that shouldn't be there. That is the reason they are removing them in the first place, to rule out DCIS or to remove these abnormal cells but and then monitor us very very carefully because every case is different and they don't know who will develop invasive BC.
Also, I have read that if pathologists find that the atypia is acting out funny, as they study everything after surgery. Doctors will recommend being put on hormonal therapy, (tamoxifen for pre-menopausal women), to prevent for these cells to be multiplying so much and so fast. Does anybody know if what I have understood is correct?
If anyone can respond, I would be so appreciative! Thank you so much for reading, understanding and the support!
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marita
I spent 10 days immersed in learning all I can after my atypical Ductal hyperplasia diagnosis
I made an appointment with a top breast surgeon. I was told that a lumpectomy would be needed before the appointment and that this will be discussed in further detail at the appointment. My research informed me that these atypical cells could be masking cancer cells.
Five minutes into the appointment the doctor was informed that my pathology report which was analyzed at a different hospital was incorrect and in fact I had infiltrating mammary carcinoma tubular features well differentiated.
I was in shock. I heard what I was told but I did not understand it after all I tried for 10 days to wrap my mind around ADH
My lumpectomy or partial mastectomy with sentinel lobe's biopsy was just two days ago. My surgeon told me that if I went in to surgery for the adh alone I would be returning to surgery in two weeks because the diagnosis after the original lumpectomy would be cancer
I reflect over the past three weeks starting with a callback from mammogram, my first ultrasound, my first biopsy, the news of ADH and then the lumpectomy and I Marvel at myself that I got through this. But now I'm struggling to get through the next 10 days and embrace once again a possibly new diagnosis followed by more decisions and more choices.
I await Pathology on the three tiny lobes that were taken, lobes I must say that hurt more than the site of the tumor and lobes that are not under the armpit as I thought they would be but rather on the far right side of my breast.
I wait for pathology on the area of margin that was taken around the site of the actual mass that I was told at biopsy was 8 mm.
If either pathology shows cancer cells my treatment will be that of chemo. The doctor has stated so many encouraging words saying she believes my cancer is not aggressive even though it's stated to be infiltrating. I have significant doubtfulness because of the change in pathology reading.
Go with your gut and have that doctor remove anything and everything of suspicion. I know I asked before surgery are you sure you double and triple check my most recent 3-D mammogram of both breasts.
I have to convince myself that just as I got through these three weeks I will get through the next three weeks and the three weeks after that and any and every course of treatment that is laid out for me
Sherry
Ps it was the breast surgeon that recommended a partial and not full mastectomy. She thought it best to preserve my breast she saw the atypical cells as a very tiny part of an already small breast. I asked for the full but she would no
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Sherr, my heart goes out to you! First of all, thank you so much for responding. It tells us all we are not alone.
I'm so sorry to read what you are going through. I will be praying this waiting time will not be so rough for you.
I'm in shock to know that for many of us, these trails continue going on until the doctors find out how to better treat us. I so hope they tell you soon as it is better to fight knowing what you are up against as oppose to feeling the uncertainty of not knowing.
Thank you for confirming what I had been researching and thinking. You don't really know until you have all the results back and they tell you for certain what you have!
I have a great doctor but at the beginning she made it seem like my situation was just preventative and that it was something common. Only after researching did I know that many doctors won't tell you much and downsize everything just so we won't worry. On my second app I did tell my doc not to sugar coat things and to rip off the bandaid and to please confirm or educate me on what I had studied and read and that is when she told me I was right.
I worry more not knowing and being blind sided as oppose to understanding what I have. We all hear it, KNOWLEDGE IS POWER!
What are your thoughts on having a bilateral mastectomy?
I asked one of my doctors about it to get info. My husband and I have sat and talked so much because it is such a personal decision but something so very tough to go through. I told my doctor and husband that if my diagnosis changes and I end up having DCIS, I would remove them both. It is difficult for a group of doctors to hear this, as this topic is a bit controversial. Many believe that there is no need to, but research has not made it possible to convince me that the statistics are there. Once you go on remission, even for early stages, when it comes back, it comes back aggressive. So I personally decided that even if they tell me that I'm at stage 0 or 1, that I will ask to have both breasts removed.
Also, if in 6 months, I continue to need more surgery due to my ADH, I will consider it. I do not want to go through the fight to end up getting BC. This is my worry.
If anyone can tell me how they see this, I would appreciate it!
For now, my doc told me that what I'm getting is not a lumpectomy but that my left breast would most likely change. I wasn't prepared to hear that because there's no reconstruction there BUT it's best to be safe with fighting marks than trying to save the breast and just waiting for anything to change.
Thank you for reading and supporting by sharing your thoughts and situation!
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mariita
I am terrible at making decisions on the menu when choices are present. In my career as a special educator I always look to my vision and work backwards in my plan to get there. I'm extremely detailed oriented and as you said above knowledge is my power. When I met with the breast surgeon for the first time within minutes after hearing the change of diagnosis to cancer she said I would have a choice of a partial mastectomy/lumpectomy or Mastectomy.
Even one of my sons who was with me on this appointment was shocked I quickly made up my mind . I told the doctor wanted a mastectomy
The doctor replied "that is not my recommendation". "I want to preserve your breast I want to remove the cancer. I want to give you clean margins and I want to make certain that the infiltrating carcinoma has not branched out into your lobes. "
I knew I needed to put trust in the surgeon. Yes she presented it as a choice but honestly she made the choice for me. I know with my research on ADH she would have gone in and removed the atypical cells. She would not have gone to any lobes but she would have taken a margin around the atypical cells to confirm that they were in fact not a typical. She then would've sent everything to pathology, understanding that the biopsy is just on those samples removed. My atypical ductal hyperplasia it was 8 mm . The cells in the pathology report were less than 2 mm and that equated to five or six punches during biopsy. What would've happened to me if the atypical ductal hyperplasia of cells were removed is that pathology would show that cancer was in fact mixed in and I would be back in surgery to remove the margin around the original surgery and sentinel lobes
I know my mind well. I know there will not be a day that I will not worry if other atypical cells exist within my body. I don't know about you but my children, my six children including two sets of twins are a result of infertility treatments pergonal with AID. My years of treatment likely created the very estrogen rich cells in my breast that have now been confirmed on the receptor testing. 100% estrogen positive. I am curious if you to sought fertility treatments
Please stay in touch. Please listen to your doctor and trust the best you can.
PS you are luckier than I having a husband who is your rock.
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