Just DXed With LCIS and Focal Atypical Ductal Hyperplasia

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SmokeGal
SmokeGal Member Posts: 1
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Hi, I was just DXed with LCIS and Focal Atypical Ductal Hyperplasia.  I was told my next step would be to choose a surgeon, then have an MRI most likely followed by a lumpectomy.  I have a Breast Cancer Navigator who told me to take my time and research the surgeons and either she or my PCP can set up the appointment with him/her for me.  I'm so confused as I thought I would be seeing a different kind of a doctor to handle this and not a surgeon.  I went in for my yearly mammo and was called to come in for a magnified mammo as they wanted to take a look at a microcalcification cluster.  After the followup mammo was done, it was advised that I have a biopsy.  They got the wrong area at first and had to do another biposy to get the correct area.  When the pathology report came back, I was called into the hospital and a radiologist sat down and told me the findings.  So, where do I go now?  I was told that I would need a lumpectomy to remove the remainder of the microcal cluster, and then I could do follow ups and be watched or the far end and have a bilateral mastectomy.  Any advice of what my next step might be would be so greatly appreciated.  I'm 51 years old, no breast cancer in my family, never taken HRT and  have not yet reached menopause.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited February 2014

    Hi SmokeGal so sorry you have had this dx......it does come as a bit of a shock I know.  The next step for you will be to find a breast surgeon to organize for the removal of said lump.  At your consult with him/her you will also discuss what may be needed as far as followup is concerned.

    I was 52 at dx with no close family connection with BC so I do understand how you feel.  Keep coming here to ask questions as you need or just for support.......BCO is a great place for both.

    Love n hugs.   Chrissy

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    SmokeGal - Welcome!  I see you've already met the lovely chrissyb!  (She's so nice...and very smart!)  I just wanted to say that you should begin a search for a good breast surgeon - someone who listens to you and that you genuinely like and feel in your gut that you can trust.  Don't just settle for some pushy asshole... If you don't like the first one, find another (you can pretend you're shopping for shoes and looking for that perfect style and fit - except this time it's doctors!)   Winking 

    Also, I'd strongly suggest taking someone with you when you have that first meeting with him / her.  Many things will be discussed and I got so overwhelmed I missed half of what was being said. Thankfully someone had given me this same advice and I had a friend with me who was listening to every word and taking notes.  If you have questions, make a list and take it with you.  This whole journey can be very emotional and you'll want to know every option available to you so that you can make the best possible choice.  Don't feel rushed or hurried - this is a BIG decision and you need to be at peace with whatever it is you ultimately decide to do.  Let us know if you have any questions or need anything, OK?  Wishing you the VERY best... you can do this!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    smokegal----yes, the next step is to have a surgeon do an excisional biopsy (lumpectomy); to make sure nothing else more serious is in there with the LCIS and the ADH. (such as DCIS or any invasive bc; ILC or IDC).  There is a chance (15-30%), but it is much more likely there isn't anything more serious (70-85%), so hang onto those larger numbers!  (Some people mention going to a "breast surgeon"-- I 'm not so sure that is an actual "speciality", but it is good to go to a surgeon that does a lot of breast surgeries.) You should also make an appt with an oncologist to see after you have the pathology report from the lumpectomy.  There are basically 3 standard options with LCIS ; 1) close monitoring 2) tamoxifen 3) PBMs.  I was diagnosed over 10 years ago, when I was 46 and still premenopausal.  I also have family history of bc (mom had ILC). Even with that combination of elevated risk (they put me at 36.6%), they did not recommend bilat mastectomies.  I do high risk survaillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, I took tamoxifen for 5 years and now take evista  for further prevention. (bilat masts are not medically necessary for LCIS, they are a personal choice). It all kinda boils down to how much risk you can handle.  There are risks with the medications (but very low for any serious SEs, <1%), but there are also risks and SEs with surgery, and risks with doing only monitoring. Praying you get only good results from your lumpectomy. Feel free to PM me if you'd like with any questions at all.

    Anne

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  • Smitty333
    Smitty333 Member Posts: 130
    edited February 2014


    I am in the same boat as you right now. Diagnosed with Lobular Carcinoma in-situ with necrosis and Atypical Ductal Hyperplasia. I am just going back and forth on what my next step will be. I have a app. Thursday to discuss my choices. Also to hopefully remove a large hemotoma. Anyone else have a hematoma removed after lumpectomy?

    This LCSI is a hard one. i really kind of feel like the wait and see will be what I end up doing but I can imagine how I would feel if I were to get invasive cancer in the future. I would feel like I had the chance to try and prevent it and I didnt.

    But than I feel like I could go the opposite and over react.

    My LCIS was found almost off of my breast on my rib bone. Not detected on any scans I could just feel it. I know another one of my ribs has the same lumps and feel. Do I just not say anything because its probably just more LCIS or do I say something because it could be something different???

    Another question is all LCIS estrogen +??

    Now I am rambling, good luck everyone!!!!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2014

    Smitty, I think you should mention the lumps because LCIS is usually an incidental finding and does not present as a lump.

    I don't think they do hormone testing on LCIS, or at least I know UTSW did not on mine. They do offer the antihormonals as a preventative though, and I think they are shown to reduce risk by about half. The big question is what is your specific risk so half of what? That is where the genetics doc helped me. Remember if they say you have, for example, a 25% risk of going on to develop cancer, everyone has about a 12% risk, so your conditions only confer an additional 12 or 13 %. That is just an example.

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  • Smitty333
    Smitty333 Member Posts: 130
    edited February 2014

    Thanks Melissa. I have had so many people tell me not to take my estrogen pill I am on for surgical menopause and I wondered if it was because it made the LCIS worse. the lumps on my rib bone feel exactly the same as the one that had the LCIS on it, so I just assumed it was more of it. I dont know why I feel so shy about bringing these things up to my Dr. i guess I just dont want him to think I am over reacting. 

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  • eileenj
    eileenj Member Posts: 64
    edited February 2014

    Hi Smitty! I would speak to an oncologist about continuing estrogen with a dx of LCIS and ADH.  When I was first dx'd with LCIS and ALH my very first surgeon told me that these conditions feed off of estrogen and that losing weight would help.  She also told me that belly fat produces a large amount of estrogen and that an overload of estrogen could have caused the abnormalties.  As far as LCIS and ADH/ALH getting better or worse, I believe it doesnt work that way.  I think its just there waiting to rear its ugly head....

    Good luck in whatever you decide to do.  Im fairly new here and have found this site to be a plethora of information and love. 

    Eileen xoxoxoxo

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  • Smitty333
    Smitty333 Member Posts: 130
    edited February 2014

    Thanks so much for the info Eileen. I am 35 and in surgical menopause and I am afraid of the side effects of not taking my estrogen. Heart problems, osteoperosis, killing my spouse ;)  But at the same time I love the idea of taking something that would reduce my rate by 50% just need to figure were to sacrifice when it comes to my health! 

    My LCIS had necrosis with it. Does anyone know what this means?

    By the way you talked about weight. I am 35, 5' 10 and only weight 119. I lost a lot of weight this last year with all of these problems. I hope to put some on soon!!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2014

    whether you take the antihormonal or not they will want you off the estrogen.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    smitty---yes, you should definitely tell your doctor about the lumps. LCIS is generally not found by a lump; it's usually something they find when they are in there looking at something else that they are concerned about. Breast tissue extends all the way up to the collar bone and all the way out into the armpit, so lumps could be from breast tissue or they could be swollen lymph nodes. (which can be swollen for many reasons other than bc). Most LCIS is thought to be estrogen positive.  Taking estrogen once you are diagnosed with LCIS is contraindicated; you would just be increasing your already increased risk for invasive bc in the future. If you are thinking about prevention, why not try the tamoxifen? it is good for your bones as well as decreasing your overall risk for bc. I know these are difficult decisions--when I went thru surgical menopause , I couldn't take any HRT due to my LCIS; it was rough, but I would rather have the menopausal SEs than develope invasive bc.  I hope they can drain your hematoma or maybe it will just resolve by itself over time.

    Anne

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  • beacon800
    beacon800 Member Posts: 922
    edited February 2014

    Sorry you have the lcis diagnosis.  Your excisional surgery will tell you if there is anything worse (hopefully not) and that info will also help you with your treatment direction.  I think most LCIS is estrogen positive.  They can test this for you.  Because of this, LCIS people are told not to take any estrogen.  Now, one thing.....and this is controversial.....if there is nothing worse than LCIS and you elected bilateral mx, it is possible you might be allowed to take estrogen.  I asked my surgeon if I could take HRT if I needed it in the future and he said he thought I would have less risk then an average woman.  (I had a bilateral mx and nothing more than lcis).  So far I have not taken any HRT, but it was interesting that he supported the idea. 

    At your age I can def understand why you would want to take the estrogen.  You'll need to do research on this subject.  Tamoxifen will help your bones, so that is a benefit of tamoxifen.  However, if you surgical menopause removed your ovaries and your natural estrogen production is super low (without HRT), tamoxifen may not give you the bone building benefit.

    (tamox drives estrogen away from the breast and into the bones and uterus.   If you don't produce much estrogen on your own I don't know if you might still be at risk for bone loss at your young age).  Definitely a research project.  But don't despair.  I am sure a solution will be found for you.


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  • eileenj
    eileenj Member Posts: 64
    edited February 2014


    Smitty, since you are now surgically in menapause you are eligible to take other meds for post menapausal women.  I am told by my onc that she wants me to start Evista which will also help my bones and works as well to reduce BC risk.  Now that I am heading towards my third biopsy with this LCIS condition, I have discovered that there are lots of foods that I have been neglecting to eat that can also help me to reduce my risk for BC in the future if not NOW!

    I am with AWB on this subject....I'd rather endure the SE of menapause than raise my risk anymore than it has been with the dx of LCIS.  I just pray that there is nothing else creeping around inside my breasts. 

    Also, today I discovered from this site how much food can help to reduce my risk and all this time I have been eating all the wrong foods ....Im a bit freaked out...Ive been crying all day and beating myself up for not realizing that Ive been harming my system by eating crap and junk foods ever since I was dx'd in 2012...:'((( 

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2014

    Eileen, I think you need to be kinder to yourself on the eating. There is no magic diet to prevent breast cancer. About the only things that are proven to reduce risk are maintaining a normal weight, exercise & not going overboard on alcohol. There are plenty of vegetarian or vegan runner health nuts here who still got breast cancer.

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  • eileenj
    eileenj Member Posts: 64
    edited February 2014

    Thanks Melissa! <3 I'm also feeling sorry for myself...scared ...really scared...felt a lump in right breast which I just had surgery on and they found it to be cysts by ultrasound...2 at the lump sight and one in the left breast ...and here we go again...aspiration scheduled for Tuesday.  Another biopsy...geez i just finished surgery in november...and the right breast hurts :'(  They say the left breast cyst has debris inside.  Not exactly sure what that means.  I've had aspirations before the LCIS dx but its still another biopsy...I'm just so sick of this...waiting to speak to onc...hopefully she will call soon <3

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2014

    i understand. I've been there too. 

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  • Smitty333
    Smitty333 Member Posts: 130
    edited February 2014

    I am so glad I have you ladies for all of the  information! I am going to see the Dr tomorrow and I am making notes from things I am learning from you guys. I am a little nervous about this new lump. I have small breast and just had three lumpectomys in that breast. This one feel like a asperation type cyst . Anyway I will report back and let you know what he says. Good luck to you Eileen!

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  • V8grrl
    V8grrl Member Posts: 13
    edited March 2014

    that is my scenario exactly.  except right now my report says Focal ALH.  so i am sched for a meeting with my second breast surgeon on 4/17.  I had an initial consult then found out the darn surgery center is out of network.   the first consulting breast specialist kind of poo pooed everything " oh, you are going to be just fine....no need to worry"   blah blah.   well   I'll know more after the surgery, right?

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  • leaf
    leaf Member Posts: 8,188
    edited March 2014

    V8grrl - The first words my BS said to me (after my core biopsy showed LCIS) was "If you want bilateral mastectomies, I will fall down in my chair." That BS did my breast excision, and after the excision said, "I don't want to do any further breast surgery on you." So that took care of future surgeries! She totally brushed off the pain I had during the wire insertion. She was the only breast surgeon in my network.  

     However, recently I have found a general surgeon who has had some experience in mastectomies: if I need more surgery I want to go to this general surgeon.  At least I know she's not going to allow pain during the procedure, and probably after.

    Its easy for them to say 'You will be fine.'  The statistics are certainly in your favor, but how do they know you will be fine.  I hate this kind of 'reassurance'.

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