ALH

Hi there!  As I usually say about LCIS, there is little about LCIS that is NOT controversial, including the name.  That creates uncertainty, but that also means its hard to choose wrong (providing you are given choices.)

I have classic LCIS, ALH, and DH (ductal hyperplasia, not atypical).  The LCIS + 'features of ALH' were found at my first biopsy after a routine mammogram showed 'suspicious calcifications'.  I was 51 at diagnosis, as you. A 2nd opinion upgraded the 'features of ALH' to 'ALH'.  The DH was found at a subsequent biopsy a year later. I have a 'weak' family history, with only 2nd degree female relatives who all had postmenopausal bc.

My breast surgeon from the get-go refused to do any further surgery beyond the excision after the LCIS/ALH core biopsy.  There weren't any other breast surgeons in my network.  At the time, I was also having carpal tunnel issues and ended up having bilateral carpal tunnel surgery.  This might put me at higher risk of lymphedema if I had PBMX.  I now have other medical issues that make any decision even more complex if I go on to have something worse than what I have now.

Some papers combine LCIS and ALH and put them both in the category of LN (lobular neoplasia).  LCIS is at one end of the spectrum of LN, and ALH is at the other.  They usually think that LCIS has about twice the risk as ALH. 

I wanted to do something, so I went on tamoxifen.  I just completed my 5 years of tamoxifen.  I had 4 endometrial polyps (roughly every 1-2 years), one starting before I went on tamoxifen, all were benign. 

According to the NCI site regarding LCIS and the choice of tamoxifen:  In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention <http://www.cancer.gov/cancertopics/pdq/prevention/breast/HealthProfessional&gt; for more information.)

Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS. http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

Obviously, there are many women here with LCIS (classic or pleomorphic), or ALH or ADH who do not agree with this notion and choose PBMX.  Not ALL of these women have a dreadful family history.  

Yes, ALH puts both breasts at risk.  I assume you have had a surgical excision?  Some, but not all, docs recommend that in order to help reassure there isn't something worse there (i.e. LCIS, DCIS, or invasive.) http://www.ncbi.nlm.nih.gov/pubmed/18348299

But 'high' is a relative term.  Some academic papers categorize LCIS and ALH as 'high risk' whereas others categorize LCIS as not high risk (at least LCIS/ALH without a strong family history, usually described as a first degree relative, especially if pre-menopausal.)

Lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia (ALH), together described as lobular neoplasia, are associated with substantially increased risk of subsequent breast cancer, with lifetime risk estimates ranging from 10% to 20%.⁴⁵ This equates to a continuous risk of about 0.5% to 1.0% per year. The invasive cancers may be ipsilateral or contralateral, are usually invasive lobular cancers, and more than 50% of these diagnoses occur more than 15 years after the original diagnosis of LCIS. Similar findings have been reported by Fisher et al,⁴⁶ describing a 12-year update of 180 women with LCIS who were treated with local excision alone and followed by the National Surgical Adjuvant Breast Project (NSABP), as well as Li et al, who described the risk of invasive breast cancer among 4,490 LCIS patients using Surveillance, Epidemiology, and End Results (SEER) data between 1988 to 2001.⁴⁷http://onlinelibrary.wiley.com/doi/10.3322/canjclin.57.2.75/full

This '10-20% lifetime risk' is lower than my onc and genetics counselor stated. (Remember, I have a 'weak' family history.)  They stated a 30-40% lifetime chance.  However, I took 5 years of tamoxifen, which may cut that risk by about half.

So family history may play a role in your decision.  Get your family information (if available), particularly first degree premenopausal breast cancer, ovarian cancer, or male breast cancer.  Here is more about BRCA screening. http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

The 'science' of breast cancer prediction is in its infancy.  Seriously.  They do know fairly well how many women in an 'average' population will get breast cancer, but they barely have a clue which of those individuals will get breast cancer.  So they have only have very poor answers to the question 'What is my risk for breast cancer?'  If they have this little idea for an 'average' woman, you can imagine how well they know for a woman with ALH and/or LCIS. http://jnci.oxfordjournals.org/content/98/23/1673.long

Do your research carefully, get all the consults you need, check in with both your head and heart.  

Farmerlucydaisy wrote: My initial path from a ductal excision was -  one doc said LCIS/DCIS and the other said ADH and ALH, the specimen was then sent to Vanderbilt for a tie breaker and that pathologist said ADH/ALH. I'm thinking if there is a progression of the cells, I must be closer to the LCIS/DCIS than the "typical hyperplasia" end of things. Does that ring true for you or is there a flaw in my logic?

I don't know about the 'progression' part, because we don't really know the natural history of ALH/LCIS.  That means we don't know the 'pathway' (if there is one) between ALH, LCIS, and invasive breast cancer.  We don't know if 'everyone' who has invasive breast cancer started with ALH and/or ADH.  This is controversial, as in all  things LCIS. This paper opines there is NOT a low grade pathway between LCIS/DCIS and invasive, but that is only one paper. http://www.ncbi.nlm.nih.gov/pubmed/21935747

This is a hard subject to study, because we don't know who is out there walking around with ALH, ADH, LCIS and don't know it, because these are all usually incidental findings found on breast biopsy.    But with LCIS, the minority of women who do later go on to get breast cancer usually (not always) get breast cancer in areas that look NORMAL (by mammogram or ultrasound).  This is a very old paper (1993)  Among patients with LCIS, invasive carcinoma happens anywhere in the breast parenchyma.  http://www.ncbi.nlm.nih.gov/pubmed/8298449  In addition, LCIS is normally multifocal (meaning there are lots of spots of it in a breast) and usually bilateral (in both breasts.)

(Classic) LCIS used to be routinely treated with bilateral mastectomy (before, say, the 1990s or so.)  When they found that early stage invasive breast cancer could (usually) be treated with lumpectomy and radiation, many surgeons thought that routine mastectomies for  LCIS was overkill (in the absence of a strong family history.) They think that LCIS can, in a small number of cases, directly become invasive.  As in all things LCIS, there is controversy. http://www.ncbi.nlm.nih.gov/pubmed/15197797

LCIS, ALH, and (I'm guessing ADH) are normally found as an incidental finding on a biopsy.  LCIS is often  (not always) found not at the lesion of concern (i.e. what prompted the biopsy), but adjacent to the lesion.

You weren't diagnosed with this, but besides the classic LCIS (which I have), there is the much more unusual PLCIS (pleomorphic LCIS) which has some features of both LCIS and DCIS. PLCIS wasn't described until the late 1990s or so, so we don't know much about it.  Classic LCIS was first described in the early 1940s. http://www.ncbi.nlm.nih.gov/pubmed/15197797

The genetic couselor said 50% lifetime risk, since my mom was diagnosed at 27, died at 29, and her sister died at 47 (i.e. both premenopausal.)

I am very glad you got a 2nd opinion at a prominent medical center (Vanderbilt).  I have heard it is usually simple to tell invasive bc from non-invasive bc, but it can be tricky to tell ADH from DCIS.

I would say you definitely have a strong family history, and that your genetics counselor's estimation is on track.  (Your genetics counselor, at least if board certified, is certainly a better expert than I.)  In my own genetics counseling, I was not given an idea how little we know about risk assessment.  You have a strong family history.  I don't know if you have been tested for a BRCA mutation, but if you haven't then you could be at risk for one.  That strong family history risk 'trumps' any risk you might have from ALH/ADH, or if you had DCIS or LCIS.  (Some BRCA mutations confer up to a 84% lifetime risk of breast cancer up to age 70.)http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

Also the genetics guys said the ALH would not show up on an MRI, but it should at the point it is LCIS.

MRI shows a lot of 'junk' (stuff that looks suspicious but is NOT breast cancer, such as inflammation), and MRIs can see LCIS, but I doubt if it always does.  If you do have LCIS, though, that isn't all that important, because they treat ALH about the same was as LCIS.  I think your risk of getting breast cancer due to your strong family history is much more important.

I'm not really sure I understand the LE risk with PBMx. In my case I don't think they would need to check the lymph nodes, but can they "happen" to damage them thus causing the LE?  I watched a mastectomy operation on utube and it looks like they are really close to the lymph nodes near the pectoral muscles.

I've never watched a mastectomy operation.  I had bilateral carpal tunnel surgery, which can mess up the lymph vessels in the hands, as well as other medical issues I'd rather not go into.   I'm no expert on lymphedema. 

This article says Published incidence rates for BCRL <breast cancer related lymphedema> vary substantially with a range of 2-65% based on surgical technique, axillary sampling method, radiation therapy fields treated, and the use of chemotherapy. http://www.ncbi.nlm.nih.gov/pubmed/21945108

This abstract doesn't describe the breast surgery and breast cancer treatment well, but found significant problems in returning to recreational activities. http://www.ncbi.nlm.nih.gov/pubmed/21735276

Binney4 is our resident expert on lymphedema  (I know there are others, but Binney has received awards for her work), and this is what she says about lymphedema risk on a prophylactic mastectomy.  It sounds like the risk is low but NOT zero.  http://community.breastcancer.org/forum/64/topic/777425?page=1#post_2690657

I started out with an every 6-12 month check, but after 2 or 3 years, I'm now down to yearly mammograms and twice-a-year clinical exam.  I think that's because I'm now 6 years away from LCIS diagnosis, and if I had any missed invasive cancer at diagnosis, it would have shown up by now. (I.e. I have a VERY low risk now of having an invasive cancer that was not detected when I was diagnosed with LCIS.)

Farmerlucydaisy: you are in a different category since you have a strong family history, and I think it certainly makes sense to strongly consider mastectomies when you have a strong family history. But only you can judge what your treatment choice or surveillance should be.  Some women with a known deleterious BRCA mutation choose watchful waiting, and that is a perfectly valid choice for them.  Others choose prophylactic mastectomies for a known  deleterious BRCA mutation, and that, too, is a perfectly valid choice.

You're quite welcome.  I just like people to make *informed* decisions, hopefully influenced by facts, though of course our heart is involved too. 

Its perfectly OK to take choice A because that would better handle their risk of X, even though this also involves some risk of Y.  Unfortunately, according to Binney, I get the idea that traditionally lymphedema was pretty much ignored in the literature, so I wanted you to know all the possible risks and benefits   (i.e. consequences) of something before you make a decision.

Farmerlucydaisy,

I had two excisional biopsies when i was young (28 and 30). I am 47 now. I think core biopsy wasn't even an option at the time. Both were lumps the Dr. discovered during a routine exam. They turned out to be intraductal papillomas. After those incidents I started getting regular mammograms. I never had a single thing appear on the mammograms- but I only recently discovered that my mammogram reports have been saying I have dense breast all this time. So, no surprise they never see anything.

 This June I started having discharge so I went to my doc who sent me to a specialist. She checked the mammograms and sent me for a US, which saw the suspicious area. I had a core needle biopsy which came back as another papilloma. Intraductal papillomas are considered b9 - except when they aren't (10% come back malignant) I really don't understand if the papillomas are cancer or if the original dx is wrong 10% of the time??? It's confusing. 

Since excision is the standard procedure for papillomas the BS sent me for an MRI to be sure that was all that needed to be removed. That came back with more suspicious areas, including my lymph node on the same side. So, I had two more cored needle biopsies and two Fine Needle aspirations on the lymph nodes. One biopsy came back as Fybrocystic Changes - which aren't a big deal I think and the other was supposed to have been another papilloma. The lymph node came back with "atypical" cells but the BS thought that was an anomaly and didn't recommend removing it. 

I had the lumpectomy (excisional biopsy) in July and the path report came back as one papilloma and ALH. Because of my history of biopsies, my sister having cancer at 42, no kids and now the ALH the BS recommended tamoxifen, which I am on now. 

I am on the 6 month rotation and recently had my first check up. The MRI showed more activity but the BS and radiologists want to wait another six months to see if more happens because they aren't sure if the activity could be explained by scaring. 

So, my ALH was definitely found on an MRI. Mammograms never show anything for me. I’ve read a ton about ALH since July but I don’t know how long I have had it or if it would have turned into cancer if I hadn’t had the discharge caused by the papilloma and discovered the new issues.

Part of the frustrating part of this is the mental game in your head. I still kind of wonder if they found everything or if there is some other issue that still hasn’t manifested itself. So many women on the boards will talk about getting a clean mammo just a few months before discovering a lump. Thinking like that really doesn’t help me much but I can’t seem to shake it.

Leaf - another thank you for your informative post.  Your contributions here are amazing.  There is always something new to learn.  I have multifocal ADH, and though I'm not ready to have a PBMX at this point, I'm realistic enough to know it may be in my future.   I've had surgery for nerve transposition at the elbow due to cubital tunnel syndrome, and I never thought of any implications for future surgeries, but after reading your post I will seek out more information.   Sorry if I'm off topic ... it's just your post really gave me something to think about regarding risk and benefit.  

Farmerlucydaisy,

I've never had anyone suggest a PBMX as an option for my care. I would say a year ago I would have told you that it sounds a little crazy but now I'm not so sure. I understand how someone could come to that decision. If I have any more issues (it's my right side as well) I think I will bring it up. Right now I am hoping to stay sane until May when I have another MRI. If everything is stable I'm going to stand pat but if there are more things to biopsy, I'll have that talk with the BS.

I know there is a lot of complaining about the tamoxifen on the boards and I had a little trouble the first few days but now I am not having any SE at all from it so there is every reason for me to keep taking it and hope it does the trick. Be sure to let us know when you are having your surgery. I'll be happy to cheer you on if you need it.

Wow, that's fascinating farmer!  So 3 generations back about 50% of the family (men and women) died of bc, and the more recent generations do *not*  have that 50% incidence?  I bet there's an (additional) reason why your brother became a gyno onco researcher!

When I had to get my family tree, it was like pulling teeth to get info about my paternal grandmother who had bc in the 1950s- she is now deceased of course, and she only had sons.  Needless to say, her sons did not know, let alone pay any attention to when their mother  got bc or underwent menopause (if they ever knew).

Hi ladies,

Read the posts above and thought I'd share my story to answer some of the original questions. I am 37 and diagnosed with ALH in Oct 2011 by core biopsy. Follow up excisional biopsy showed clear margins and only fibrocystic change. I have very dense breasts and have had increased screenings since age 33. Currently, I have Mammo every 6 months and alternating MRI and ultrasounds annually. My mother was diagnosed with bilateral BC at age 33 while pregnant with me and passed at age 38. I am BRCA 1 and 2 negative(undetermined). I am in odd situation of what do I do now? I recently found the love of my life and would like to start a family. My oncologist says I'm at no greater risk over the next few years than I am currently, tyrer-cuzick 10 year risk is 10% and lifetime risk is currently 65%. ugh.. my BS and Plastic surgeon are both encouraging PBM without delay.  I am trying to decide between family or PBM first. I've read that PBM won't necessarily speed up menopause but like any major surgery can effect your hormones and menstrual cycle. I seem to be the only person in this situation...seems every one else has had children prior to being diagnosed....

So for those of you that were diagnosed with ALH in the past, how long has it been since you were diagnosed? thoughts?

Good luck farmerlucydaisy - I didn't have any problem with the insurance approving my PBM either.  No nodes taken here - I think you will be pleased with the reconstruction - keep us posted on how you do, it really isn't painful

Hugs, Valerie