Atypical Lobular Hyperplasia-minute focus what's the relevance

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Scaredandworried
Scaredandworried Member Posts: 97

So here’s the results of my excisional biopsy for microcalcifications in the left breast:

  • Atypical Lobular Hyperplasia, minute focus, sparring margins of specimen
  • Calcium Phosphate
  • Negative for malignancy

The description of the specimen was as follows:

Specimen submitted:

Left breast tissue

Gross description: The specimen is received fresh, labeled “left breast tissue”. It consists of an excisional biopsy of breast, weighing 3.4 g and measuring 2.5 cm medial to lateral, 1.5 cm anterior to posterior and 1.1 cm superior to inferior. The specimen is oriented with sutures as follows: short – superior; long – lateral. The specimen is inked as follows: superior – blue; inferior – orange; anterior- green; posterior black; medial – yellow; lateral- red. The specimen is serially sectioned and entirely submitted in cassettes 1-4.

Besides the fact that there’s more description on the specimen itself then the findings, my question is what does minute focus mean and does it have any bearing on my risk of developing breast cancer. I saw my doctor yesterday and she told me my risk in the next 5 years is 4.2% and lifetime 33%. She did offer me tamoxifen but then told me she’s seen 97% of her patients in a similar situation refuse that, so it’s totally up to me.

I have read elsewhere how minute focus may mean a much lower risk than extensive atypia, but want to hear from others who might have had minute focus on their biopsy and what did their doctor say.

Comments

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

    scaredandworried,

    You didn't mention your age or family history, but I'm assuming with the risk numbers they came up with, you must have some other significant risk factors other than the ALH.  I was diagnosed almost 10 years ago at age 46 with LCIS (a step further along the bc spectrum with double the risk of ALH) and my risk is further elevated by my mom's ILC. At that time, they gave me a 5-year risk of 4.6%, and a lifetime risk of 36.6%.  I had lumpectomy, took tamoxifen for 5 years; now have been taking evista for about 4 years, and I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months.

    A "minute focus" just means a very small area of ALH was found; in theory, it should mean a lower level of risk than if an extensive area was detected, although ALH can be bilateral (just as LCIS is bilateral). They often use above a 5-year risk of 1.6% as a recommendation for tamoxifen use; but there are a lot of things to consider when deciding to take it.  It is more concerning when you have ALH with a family history of bc (in a primary relative, like mother, sister, daughter) than when you don't. So depending on what is making your risk #s so high, it may be very prudent of you to consider taking tamox. I tolerated it well (as I do the evista), but I would recommend you have a yearly transvaginal US to monitor both the uterine lining and the ovaries.

    anne

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Hello ladies, I just wanted to know what I shoud do about my ALH.  My BS wants a MRI and to remove it,

    my biopsey came back B9 with ALH.  Is this dangerous if I just leave it alone and do mamos twice a year instead of once. 

    Confused

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    You need to have the MRI and excisional biopsy.  They want to make sure nothing else is lurking.  My initial biospy was ALH, suspicious for LCIS.  The excisional biopsy did indeed confirm the LCIS.  They want the MRI because lobular stuff is sneaky and difficult to spot on mammos or ultrasounds.

  • leaf
    leaf Member Posts: 8,188
    edited June 2013

    Unfortunately, they can't reliably remove all ALH.  Why?  Because ALH (and LCIS) are normally found on biopsy incidentally when they are looking at something else.  Often (not always), a mammogram will show suspicious microcalcifications.  Often (not always) in the people that get diagnosed with ALH or LCIS, the ALH or LCIS are found not precisely at the site of the microcalcifications (or other abnormality they find), but adjacent to it.

    They know that LCIS is often multifocal (in other words, there are usually multiple spots of it in a breast), and is often (not always) bilateral, meaning it occurs in both breasts.  I assume this is the case with ALH too.  (I have both LCIS and ALH.)  So, if they were going to try to 'remove all the LCIS and ALH', they would have to sample every part of both breasts (to find the parts that were normal and which had ALH or LCIS), which, in effect, is a mastectomy.

    In addition, they don't know if the ALH and/or LCIS is the 'bad thing' that is happening in the breast.  What does that mean?  It means that of the women that, after a diagnosis of LCIS, go on in future years to get invasive breast cancer, the invasive breast cancer is often (not always)  in an area that looked totally normal on imaging, *not* at the areas that have known LCIS.  So that's why they think that *some* LCIS is not actually a precursor to breast cancer, but is a marker for something else that puts you at an increased risk of breast cancer.  If you were magically able to remove all the LCIS spots and leave the normal spots in the breast, we may have decreased the breast cancer risk, but maybe not so much.  They can't do this experiment, of course, because we have no way of knowing what areas in the breast have ALH or LCIS without biopsying them.  They have done experiments to see when invasive breast cancer is diagnosed at the same time as LCIS, if the two are genetically related.  Sometimes they are, but sometimes they are not.

    BTW, if you choose to do 'watchful waiting' (i.e. followed closely), you may, or may not, just do mammos.  For LCIS, which is normally thought to be of higher risk than ALH, the NCCN recommends once yearly mammograms, and twice-a-year clinical exams, and that's it.  That's what I get, and I have classic LCIS and ALH.http://www.nccn.com/files/cancer-guidelines/breast/index.html#/60/

    There is a wide variety of opinion as to the increased risk of ALH.  If you have a weak family history (in other words, don't meet the usual guidelines for BRCA testing http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical), then the usual opinions are that the lifetime risk of breast cancer for a woman with ALH is *roughly* say 20% (as opposed to 13% lifetime risk for the 'average' US woman.)  I have seen estimates of anywhere between '10% and 60%' for me, with my ALH and LCIS.  (My weak family history includes bc in one paternal grandmother, 3 maternal aunts, all postmenopausal, 2 maternal cousins, one premenopausal.)

    No one can make a decision for you.  It is your body, and it not only depends on your specific circumstances, it also includes how much anxiety each of the choices entail for you.  Each choice entails upsides and downsides.  There is no rush to make your  choice.  There is no one good choice that fits everyone's circumstances.

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Thank you Melissa and Leaf, you both are well informed.  I dont have a problem with getting an MRI w/contrast, but my BS wants to remove it, while I remain awake.  I panicked and told the dr no-way, because during my biop, I fainted ughhhh, and had strong heart pain. She told me I will not find a doctor that will put me under anesthisia for the removal of tissue. I dont have any family history of cancer, ie...sister mother aunts and lots of cousins. 

    My first reaction was to do a complete masectomy with reconstruction implants.  I am still considering it, I know its drastic but I dont want to keep getting cut up.  Like you said Leif, they would have to check all over my breasts continuosly.

    So thankful for you strong ladies and for caring enough to respond to use newbies, you will always have an Angel behind you. :)

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    If out have a mastectomy & reconstruction it would make having the lump out look like a picnic in the park. Talk about all kinds of painful things to make you faint...you should read extensively in the reconstruction & mastectomy threads before you even consider something so drastic for something very, very minor.



    The type of excisional biopsy they would do would be much easier than the stereotactic & you will be sedated where you won't be aware of what they are doing.

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Thank you Melissa, I will consider everything, still searching for a second opinion.  I will resume again in August, taking some time off in July with the family.

    Wishing you all good things :)

    Be well

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    Have fun, and best to you too.

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Hello ladies, just researching Tamoxifen which my BS recommended, however I had two vein strippings surgeries in my right leg.  I tend to build fluid in my right leg also, bad circulation.  Why would the doctor recommend taking Tx, when it can cause blockages in veins??? That could be so dangerous for me, after giving birth to my second child in 1994, I wanted to go on birth control and my Obtertrician did NOT recommend due to thicking of blood in my situation.

    Ok so the more I read the more confused I get...

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    He recommended that knowing you had the vein surgery?

    I had a pulmonary embolism when I was very ill from ovarian cancer and the oncologist will not let me take Evista because of the clotting risk.  They have offered me Aromasin which does not have the clotting risk, but I am still thinking about it.  Not sure if it is available to premenopausal patients.

    For now I believe I am going to just stick to close monitoring and not worry about it so much.  In reality, most women with my condition don't get breast cancer.  You can have a talk with your doctor and ask what your ABSOLUTE risk difference is.  If it is just a few percentage points, then it would seem reasonable that the risk from clotting is too high for the few points in breast cancer risk reduction that tamoxifen would provide.

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Thank you Melissa, I agree with what you mentioned about risk vs pts.   I am surprised how doctors react differently , and I did put on BS information sheet (10 pages)....that I did have surgery twice on my right leg....This is why I am going to still do my homework and a second opionion.

    I wish you good health , it does seem after reading here that many women do beat cancer (all kinds) and live many many years.

  • sundust
    sundust Member Posts: 17
    edited June 2013

    Hi concernmom,

    Consider this a wake-up call that you need to get very healthy, very much right now. If I were in your shoes, I would do all of the things that those who get diagnosed wish they had done before they were diagnosed.

    That would include eating a lot of cruciferous vegetables (broccoli, cabbage, kale, brussels sprouts, cauliflower and WATERCRESS (seriously, read the studies on this one)), plus garlic, onions, leeks, kale, cooked white-button and crimini mushrooms, green tea, organic red raspberries. There's a handy chart here that shows anti-cancer activity of different vegetables against different types of cancer. It's easy to see some common threads:

    http://www.chrisbeatcancer.com/wp-content/uploads/2013/01/Anti-Cancer-Vegetables-Study.pdf

    Cut out refined sugar and refined carbs. Instead, consider making most of what you eat anti-cancer. If you want to treat yourself, there IS now healthy, delicious dessert. Check out Hail Merry chocolate Miracle Tarts, they are absolutely awesome and extremely rich so you will NOT crave other crap. Switch to organic dairy, and consider eliminating red meat or switching to clean, grass-fed organic meats. Get enough Omega 3 fats (flax oil and other sources), iodine and Vitamin D. It seems like a daunting checklist but if you switch gradually over a few months it'll just become a habit. There is delicious organic whole wheat pasta (I like bioNaturae) that is great with garlic/olive oil/butter or tomato sauce/organic parmesan.

    Consider rebounding on a trampoline as exercise if you think it sounds fun; like swimming, it exercises almost every part of your body and is great for the lymph system. For me, it's also a good excuse to blast great music and MOVE.

    Try to get enough sleep. Consider the 20 steps here:

    https://herbdocblog.com/book-view/12/

    And enjoy your life!

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Hello Sundust, thank you so much for taking the time out to list all the healthy foods.

      I do love vegs and not a big meat eater.  However my weakness is refined sugar and bad carbs.  About a month ago I started a healthy diet and I am moving more.  I did lose weight :)., still need to lose more.  I do believe excersice is key to a healthy life. I will check out the website you listed.  This may be a hard question to answer but do you know off hand how many women started out with ALH and got cancer within 10 years or less.  I am going to see another BS for second advice, I probably will have the tissues removed, just wish doctor would put me under anesthisia.

    Hope you are well

  • sundust
    sundust Member Posts: 17
    edited June 2013

    Hi concernmom,

    I don't know offhand but this thread seems to have some information:

    http://community.breastcancer.org/forum/47/topic/748410?page=2

    It seems you need to consider any family history plus the ALH. Having it removed does not sound like a terrible idea.

    Just make sure you try to slam the door on it afterward :-)

  • concernmom
    concernmom Member Posts: 17
    edited June 2013

    Thank you Sundust

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