Lumpectomy for ADH?

Options
JDP
JDP Member Posts: 14
Lumpectomy for ADH?

Comments

  • JDP
    JDP Member Posts: 14
    edited January 2008

    I was diagnosed by stereotactic vacuum assisted biopsy as having ADH. I met with a surgeon today who is strongly advising a lumpectomy. I thought lumpectomies were for removing lumps, which I do not have. Has anyone out there undergone this procedure for ADH? I'm also wondering how disfigured I will be and how much tissue is generally removed by this surgery? (The doc was very noncommittal) The location of the ADH was just behind my nipple.



  • Eileeng
    Eileeng Member Posts: 28
    edited January 2008

    What is ADH?

    EileenG

  • JDP
    JDP Member Posts: 14
    edited January 2008

    Atypical Ductal Hyperplasia --It's considered benign, but makes you "high risk" for cancer. Also, from what I've been told and what I"ve read, a small percentage of the time, it is associated with carcinoma cells that might coexist nearby. What I'm frustrated about is that no one can predict a general risk actually is in my individual case, (based on the core biopsy results) and why so much tissue would have to be removed when I don't even have a diagnosed cancer.

    I'm scared, because when I read about lumpectomy behind the nipple, some doctors on the web recommend mastectomy because of the location. All this seems a bit much being that I just have a few "atypical" cells that aren't even cancer.

  • dash
    dash Member Posts: 766
    edited January 2008

    Well, lumpectomy isn't really the right word for removing an area of calcifications or ducts filled with malignant cells such as in DCIS--probably should be called partial mastectomy and maybe some other things but my brain is not switched on right now. 

    But no, I've never heard of ADH being removed. The cells are just starting to look different.  I thought they used tamoxifen and fequent screening to keep a close watch with that. 

    I would really question the surgeon further before he touched me. He should be telling you in great detail all the hows and whys of this.

  • mbordo
    mbordo Member Posts: 253
    edited January 2008

    JDP-

    ADH is one step below DCIS, which is stage 0, pre-invasive breast cancer.  I assume your biopsy was triggered by calcifications viewed on a mammogram, since you say you do not have a lump?  Usually a lumpectomy is recommended to A) make sure all of the area in question is removed and B) to verify it is indeed *only* ADH you are dealing with, and to ensure no DCIS is present...

    My stereotactic biopsy revealed DCIS intermixed with ADH.  It can be difficult to tell the difference, and I got second opinions on the pathology.  I've heard the typical amount of tissue removed during a lumpectomy is about the size of a golfball (?) - I was a small B before, and after the first lumpectomy (located in my cleavage area) cosmetically, things looked pretty normal... (I required a second re-excision for margins, and the second chunk of tissue was what caused a noticeable "gouge").  If the area of concern is pretty small, they may take less tissue.  I'm a little surprised the surgeon did not give you any idea how much he would be removing....

    I think recommending a lumpectomy in this case is pretty standard, but if you do not feel like your surgeon is adequately answering your questions - don't hesistate to get another opinion!  You need to trust whomever is going to be performing the procedure...

    Good luck!

    Mary

  • ginger2345
    ginger2345 Member Posts: 517
    edited January 2008

    I think technically the term for removing noncancerous tissue is excisional biopsy. That's usually what's done for ADH to be sure there's no DCIS lurking around. For LCIS, or lobular neoplasia as it is now being called, the tamoxifen and close watching could be recommended. The trouble with taking out part of the breast containing LCIS is that if cancer shows up, it does so anywhere, not necessarily where the LCIS was.

    I think your surgeon sort of scared you with the term lumpectomy. I suppose it's easier to say than excisional biopsy. Partial mastectomy is what it would be called if there were cancer present but no lump. This is partially about coding and reimbursement as well.

  • AnneW
    AnneW Member Posts: 4,050
    edited January 2008

    I had an area of ADH removed two years ago. It wasn't as drastic as the lumpectomy I'd had in 2002. Then this year I had ILC in the same breast as the ADH. Go figure.

    Sheila should be responding to this--she had ADH, strong family history of bc, and chose bilateral mastectomies.

    ADH is more of a "marker" for cancer. But it can be on the edges of DCIS. Did you by chance have an MRI?

    Anne

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited January 2008

    Anne had it right, My surgeon uses the terms lumpectomy and excisional biopsy interchangeably. I was dx in Feb 2005 with ADH in the left just behind the nipple with a sterotactic biopsy and had lump/ex-biopsy done April 1, 2005. It changed the shape slightly (I don't know how much was removed) I looked like I had a 'lift' on the nipple and went down a cup size. It was suggested that I go on tamox but I wanted to avoid the SE since I was only 44. I was put on 6 month mammo with follow-up appts with surgeon.

    Aug 2006 ADH in the right outer quadrant, with lump/ex-biop. Did not change shape much, bra size still A-cup left C-cup right. I was put on Tamox at that point and surgeon suggested bi-lat because of reoccurring dx of ADH. My family history also had alot to do with decision, Aunt passed away 1978 from ovarian cancer, mother dx with BC 2001 and doing well.

    At my next mammo in April 2007, I again had microcalcifications and after my 3rd stero biopsy in two years (can anyone say 'groundhog day') I was dx with DCIS in the right. I had bilat mast June 1, 2007 with recon and final biopsy showed in the right side - ADH and fibrocystic changes, and in the left side - an area of hyperplaysic ductal cells and fibrocystic changes. My surgeon said we could do an MRI but since I said that I wanted the Bi-lat there was no reason to do it for dx purposes.

    Sheila

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2008

    JDP,

    Before you panic too much, here are some facts:

    ADH is a risk factor for breast cancer, but most women who have ADH will not get breast cancer.  According to the American Cancer Society, "About 2 in 10 women with atypical hyperplasia will develop invasive cancer within 15 years of their biopsy.".  http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

    Further down the ACS webpage, it mentions that conditions with atypia increase one's risk of BC by about 4 to 5 times.  What you need to understand is that this is relative to base risk, not average risk.  Base risk for all women is about 5 or 6 %.  Then individual risk factors get applied to the base risk for each woman, and that's how the average risk for all women ends up being around 12.5%.  So when all risk factors are included, 1 in 8 women (12.5%) will be diagnosed with BC.  By having ADH, your risk is about 20% - 25%, which is high risk vs. the average woman, but still means that 75% - 80% of women who have ADH won't ever get breast cancer. 

    Now, as for the excisional biopsy, this is standard treatment for ADH.  That's because ADH and DCIS can sometimes be hard to distinguish from each other and sometimes go hand-in-hand.  Here's how breast cells progress from normal to cancerous:

    normal cells --> ductal hyperplasia (not high risk) --> atypical ductal hyperplasia (high risk) --> DCIS (Stage 0 non-invasive breast cancer) --> IDC (invasive ductal cancer).   As you can see from this picture, although ADH doesn't usually progress to become DCIS, they do look a lot alike:

    Range of Ductal Carcinoma in situ

    So when anyone has a needle or vacuum biopsy that shows ADH, as a precaution, most doctors will recommend a full excisional biopsy to remove the entire suspicious area.  This is because there is concern that the sample size from the needle biopsy may not have been large enough to distinguish between ADH and DCIS.  In the majority of cases, all that will be found is more ADH.  But in some cases (I believe about 10% of the time), DCIS may be found. 

    I'm one of the 10%.  I was diagnosed with ADH from a needle biopsy but my excisional biopsy turned up DCIS.  But just like all of the women here, I'm in the exception group.  Most biopsies - 80% - turn out to be benign.  Those women usually happily leave this site.  This is a breast cancer discussion board, so the women who stick around here are the minority group who were diagnosed with breast cancer.  Please don't use our situations as a guide for what will happen to you.  The excisional biopsy is important to have, but the odds are very much in your favor that the nothing more than ADH will be found.

    I hope that helps!  Good luck!

  • JDP
    JDP Member Posts: 14
    edited January 2008

    THank you so much for all this information and perspective. I'm in the process of arranging to get a second surgeon consultation instead of rushing forward without all necessary information, especially about the surgery itself. I plan to go in next time with a list of prepared questions ON PAPER.





  • minou
    minou Member Posts: 1
    edited February 2008

    Thank you so much for all the information.  I had an excision biopsy for ADH on January 25.  I have to be followed closely.  Of course, I know that I am at high risk now.

  • ashaby
    ashaby Member Posts: 278
    edited February 2008

    Dear JDP,

    I had 2 lumpectomies for DCIS last spring. In Jan, I was diagnosed with ADH in exactly the same area as you, same breast as DCIS. After the stereotactic, my BC has decided to watch and wait til next mammo, in April.

    Hang in there! Basha

  • Jordymom
    Jordymom Member Posts: 114
    edited February 2008

    JDP,

    I have had one core biopsy go from ADH to DCIS on excisional, and one core biopsy remain ADH when the actual site was excised.  So presence of ADH does not definitely mean other undectected cancer is present.  Many surgeons will do the excisional when presented with ADH (but not all).  I had to ask for it and lo and behold there was DCIS in the second breast.

  • alphadog
    alphadog Member Posts: 2
    edited February 2008

    Hi All,



    I'm new to the site is incredibly helpful. I just received my biopsy report (stereotactic). It reads: fibrocystic changes and intaductal hyperplasia with focal atypia. Focal microcalcification. Negative for malignancy in the available speciman.



    The surgeon's recommendation is to have a mammo every 6 months for 2 years. I'm thinking of getting a second opinion and leaning more towards excisional biopsy. My sister has diag. w/ bc 9 years (bilat mas) ago at the age of 42 and has since been cancer free. My grandmother on my mother's side had b/c at the age of 60ish and past away shortly after diagnosis but that was in the late 60s. I have very dense breasts and full of fibroids on both.



    For the life of me I can't come up with a reason why I shouldn't have the excisional biopsy just to be sure and why the surgeon didn't recommend it? I would love to hear opinions. Thank you!

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2008

    alphadog,

    The pathology report from your stereotactic biopsy only puts you at a slightly increased risk for BC vs. the average population.  But add to that both your dense breasts and your family history, and your risk is higher.  And while atypical hyperplasia is not breast cancer, it can be hard to distinguish from breast cancer.  With only a small tissue sample from the stereotactic biopsy, you can't know with 100% certainty that there is nothing else there.  So I agree with you - I'd push for the excisional biopsy.  Hopefully in the end nothing more is found, but it's better to know that than to wonder.  Or worse yet, to think that it's only atypical hyperplasia and then find out later that there was some DCIS in there too. 

  • Blinx
    Blinx Member Posts: 280
    edited February 2008

    Hmmm. Makes me think now. I had 2 stereo biopsies in the same breast -- one turned out to the DCIS and the other was ADH. I had lumpectomy and rads for the DCIS, but I don't think they did anything for the ADH, unless the rads were supposed to zap them too.

  • JDP
    JDP Member Posts: 14
    edited February 2008

    Here's an update.  I had my excisional biopsy for ADH on Tuesday, with general anesthesia, and I'm very fortunate in that my recovery has been easy.  Having the right surgeon was key!  She listened to me and used a modern surgical techniques which help cosmetically (and psychologically, I might add). I didn't even have nausea afterward, though something did happen that resulted in a fat lip while I was under.  I'm guessing rough tape removal.

    Now, I sit and wait for results, hoping they see either ADH or nothing.  Maybe the prior stereotactic biopsy got it all to begin with.  Now the questions in my mind fly.  What if they find only ADH?  Do they then talk me into tamoxifen for 5 years?  The side effects scare me.

    If they find DCIS, then what?  Radiation?  lymph node surgery?  There are too many if/thens, but my strategy is to learn as much as possible while my head is still clear.  I fear going all fuzzy if I get a BC diagnosis.  The worst that can happen is I've armed myself with too much knowledge.  Fortunately, the internet is loaded with quality web sites like this one, Medline, ACS, Komen.  Any others?

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited February 2008

    JDP, I agree that the right surgeon is key in a successful procedure. After my nipple surgery I also had a fat lip for a couple of days and could not figure it out either.

    After my first dx of ADH and subsquent excisional biopsy, no surprises came up. My surgeon suggested Tamox but would leave it up to me. I have strong family history of ovarian/breast cancer. He did put me on a 6 month mammo schedule. 18 months later I had another abnormal mammo/biopsy ADH again. This time he said that there was no option, I had to take the tamox.

    It is good to learn all your options but don't try to second-guess yourself.

    Sheila

  • kgc50
    kgc50 Member Posts: 1
    edited April 2008

    I just had 2 lumps removed and found out that one of them was ADH. They are now sending me to a onc. to see what I need to do to prevent BC. I'm at high risk already because my sister had BC.

    Does anyone know anything about taking Tamoxifien?

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited May 2008

    kgc, 

    After my 2nd episode of ADH (once in each breast) in 18 months, I was put on Tamox. I was 44 when I had the first abnormal mammo/biopsy and 45 when I had the 2nd abnormal mammo/biopsy and turned 46 when I started the tamox. My mom was dx at age 60 with bc and her sister dx at age 38 with ovarian. That was part equation for me taking the tamox. Unfortunately, 6 months after starting tamox I had another abnormal mammo but the biopsy showed DCIS.

    There are side effects to consider when taking the tamox. If you go down further on the main page to the hormonal treatments section, there are several conversations about tamox.

    Sheila

  • MaureenSF
    MaureenSF Member Posts: 2
    edited June 2009

    I promised myself I'd post here after I found out really what was going on.  Not the way I wanted to meet all of you, but all of you have been a great help to me in a very frightening time.  On May 8th I got the dreaded call that my mammogram showed clustered calcifications in the left breast.  I underwent the stereotactic breast biopsy on the 21st and it showed Atypical Ductal Hyperplasia.  My Doc said it wasn't cancer, but a precancer.  Said a lumpectomy was necessary to rule out a DCIS hidding behind those calcs.  Had  lumpectomy, four days ago, got a call from the Doc this morning and all tissue was normal.  He said they probably got it all in biopsy.  Well, great news, but did I get a lumpectomy for nothing??  I really can't complain, the area was so small, I haven't lost any breast mass, no disfiguration, just a lovely inch and a half scar now!  So is lumpectomy really necessary for ADH?  I'd say do it, if asked for my opinion.  He removed all the tissue surrounding the calcs and hopefully don't have to worry about that area, again, although I'm at increased risk for bc, I know that.  Nobody in the family has had it.  Go figure.  Ladies, thank you so much for caring enough to post here and share your stories.  If I can help anyone in anyway with any questions, I will certainly post what I learned.  God bless all of you, you're great!

    Maureen

  • MaureenSF
    MaureenSF Member Posts: 2
    edited June 2009

    You're right, Ginger.  The term for removing ADH is excisional biopsy, but I'll be darned, everyone I came in contact with called what I was going to have a lumpectomy.  I even corrected them saying, uh, there's no lump, so there's no "lumpectomy." 

  • KatieT
    KatieT Member Posts: 35
    edited June 2009

    I had a stereotactic biopsy in March that turned up ADH (spot on mammo revealed calcifications, which lead to the stereo).

    The next step was excisional biopsy which was done in April.  That also revealed ADH, nothing malignant. 

    I have an appt w/ an oncologist in a few weeks; I assume to discuss risks and possibly tamoxifen. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    My surgeon uses the terms "wide excisional  biopsy" and "lumpectomy" interchangeably. I had LCIS found on stereotactic core biopsy, then confirmed during lumpectomy. Fortunately, no DCIS or invasive bc was found. I just  finished my 5 years of tamoxifen back in the fall. Had only minor SEs, mainly hot flashes, annoying but manageable. My risk with LCIS and family history is very high, so tamoxifen was definitely indicated for me. Often the recommendation for ADH is yearly mammo with breast exams every 6 months, but some doctors are now  recommending the addition of tamoxifen especially if there is family history of bc or other significant risk factors. It's a very personal decision. It's good to talk over all the risks and benefits with your doctor and see what's best for your individual situation, as we all have different  factors that go into our overall risk.

    Anne

  • Debbie21
    Debbie21 Member Posts: 7
    edited June 2009

    I went thru the same thing a few years ago. I had a sterotactic biopsy for an area of calcifications which showed ADH. I then had an excisional biopsy (they dont usually use the term lumpectomy). There is a small chance that a cancer is co-located with the calicifications that the steroetactic biopsy missed. I chose to do under local anaesthetic (I dont do well with general). The surgeon didnt want to do it that way and had an anaesthesiologist there. I did fine with the local only and went back to work when I was done. I dont recommend doing it that way, unless you have a high tolerance for discomfort like I do. Luckily, I had no cancer. As soon as it healed, I started using mederma, and you can barely see the scar. They oferred me the usual tamoxifen since I have a 40% risk of breast cancer, but I chose not to do that,  Since I had my ovaries out pre-menopausally and havent had breast cancer, the surgoen told me it only provides a minimal benefit in my case.      

  • Lisa68
    Lisa68 Member Posts: 12
    edited June 2009

    In February I was diagnosed with ADH after a stereotactic biopsy.  I was referred to a Oncology Breast Surgeon.  She ordered a MRI which was clear, and I had a excisional biopsy.  Fortunately, No more ADH was found... Just fibrocystic changes.  I was offered Tamoxifen because my mother also had ADH diagnosis 5 yrs ago- no tamoxifen... I am not taking tamoxifen yet...I am only 40 and not sure about the possible side effects.  I am reconsidering my decision now because my mom has suspicious calcifications in the other breast now  5 yrs later.  You have to make the decision that is right for you.

    Best wishes

  • JenPadden
    JenPadden Member Posts: 12
    edited October 2013

    I have 2 areas of microcalcifications in my right breast & with Core Biopsy showed ADH. Oct 2, I'm having a lumpectomy to make sure there isn't any DCIS or worse.



    The pathology report from the biopsy mentioned Columnar Cell Change, ADH, Flat Epithelial Atypia, microcalcifications.



    Said there didn't appear to be High Grade DCIS or invasive breast cancer.



    What are your thoughts? I'm 56 & have 2 sisters who've had DCIS - 1 grade 2/3 & left breast mastectomy......the other DCIS with lumpectomy appreciate any comments at all.

  • ballet12
    ballet12 Member Posts: 981
    edited October 2013

    Hi Jen, this is an old thread.  It's really hard to say what to expect.  I had one excisional biopsy a number of years ago, and they only found ADH and ALH--severe (didn't have core biopsy--went straight to surgical biopsy- since they didn't do cores back then.)  It was a suspicious linear arrangement of microcalcs, which the radiologist thought was highly likely to be DCIS, but it wasn't.

    More recently, I had a stereotactic core biopsy which also only found ADH, but the excisional biopsy (what you are calling lumpectomy) found loads and loads of high grade multifocal DCIS with necrosis, requiring 2 re-excisions (so three surgeries all together). 

    Can't really tell what they will find. Hoping for the best for you on Wednesday. I didn't do mastectomy, just lumpectomies and radiation.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013

    Jen---there's a 15-30% chance of something more serious to be found upon excisional biopsy, but that means a 70-85% chance nothing more serious will be found! So hang onto those numbers, they're huge! Praying you get good results soon.

    Anne

  • ballet12
    ballet12 Member Posts: 981
    edited October 2013

    Hi Anne, when I told my first surgeon that there was up to a 30 percent chance of upgrade to DCIS, he looked at me like I had two heads.  In fact, when I showed up with the stereotactic core biopsy results with ADH, he jokingly said "what are you doing here?"  I said: "I don't really know." I had gone to him for previous biopsies over the past 17 years, so I didn't take offense, and I'd "lived" with a previous ADH/ALH dx for many years, so didn't think much of the whole thing.

    I still agree with you, that there is a 70 percent to 85 percent chance of no "upgrade."  I was surprised at my outcome, figuring that if there was any DCIS it would be a small amount of low grade stuff. 

Categories