LCIS care and follow up

MaryinPa
MaryinPa Member Posts: 8
edited September 2016 in LCIS (Lobular Carcinoma In Situ)

I was diagnosed with LCIS in Nov 2014 and had an excisional lumectomy in Dec the same year. All results were clean. I had a follow up ultra sound in March 2015 which resulted in an MRI guided biopsy, also clean. I went to an oncologist as recommended by my surgeon to potentially start on tomoxifin, but she was very unknowledeable about LCIS (maybe they all are). I opted against tamoxifan when I saw that it could possibly cause some types of cancer. My gyno reviewed all the results at my last visit and told me not to freak out because it really isn't cancer. She has me scheduled for annual mammos. My surgeon had me go for a six month mammo after surgery but only on the left side (same side as surgery). So if LCIS increases risk bilaterlly, why only check on one side? Who dictates follow up teasting frequency, my gyno of surgeon? A freind advised that I go for a consult at U of Penn, where they see far more such cases of there is ever a future need. Anyone able to recommend a doctor there? I have no family history, but I do not want to ignore this. This is a very confusing diagnosis! any input on future care would be greatly appreciated!

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  • leaf
    leaf Member Posts: 8,188
    edited August 2016

    Almost everything about LCIS is controversial, including the name. A lot is not known about it.

    I don't agree with checking only on the side where the LCIS was found. However, back in the ~ pre-1995 or so era, they routinely did bilateral mastectomies on LCIS women, and from the mastectomy specimens they found it is often bilateral. That doesn't mean you always get breast cancer in the other breast. In this study, At a median follow-up of 81 months (range, 6 to 368 months), 150 patients developed 168 breast cancers (63% ipsilateral, 25% contralateral, 12% bilateral), with no dominant histology (ductal carcinoma in situ, 35%; infiltrating ductal carcinoma, 29%; infiltrating lobular carcinoma, 27%; other, 9%). http://www.ncbi.nlm.nih.gov/pubmed/26371145 . (Of course, different studies differ.)

    So the incidence of contralateral breast cancer in this study was less than half of that which occured in the breast where LCIS was found. Maybe the surgeon believes the ~25% is not worth the screening. Or, maybe he isn't up to speed with LCIS.

    You can be followed by your breast surgeon, or your gynecologist, or (usually if you take tamoxifen) your medical oncologist. While I was on tamoxifen, I chose an oncologist, because surgeons are not heavily trained in medications that are not used during surgery. Once I was off of tamoxifen, my oncologist 'strongly encouraged' me to not be followed by her. I didn't want to be followed by someone who definitely didn't want to see me, so I'm followed up with a gynecologist who has an interest in gynecological cancers. I think my gynecologist is great, because, unlike my breast surgeon and oncologist, she recommended genetic testing, which was very valuable to me. But, of course different doctors differ. One patient will love their physician, and another patient can 'clash' with that physician's personality or way of handling things.

    I personally get yearly bilateral mammograms, and the last 2 years I've had yearly breast MRIs, and a yearly clinical exam. I'm over 50. But different docs want different things.

    Sorry, I don't know anyone at U of Penn.

    It is a very confusing diagnosis. Almost everything about LCIS is controversial, so different experts will recommend different things. I don't enjoy the lack of information about LCIS, but I can't change my diagnosis. But if you have a weak/no family history, and have classic LCIS (as opposed to pleomorphic LCIS), then probably more than half of the women diagnosed with classical LCIS will NEVER subsequently get breast cancer. (In other words, probably less than half of the women with classic LCIS will ever go on to get breast cancer in the future.)

    Get all the info you need before you make treatment decisions. You will want to be followed for almost the rest of your life, so its good to find a doctor you trust and has a good bedside manner.

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  • marketingmama
    marketingmama Member Posts: 161
    edited August 2016

    I started U of Penn after my LCIS diagnosis. I was assigned a doctor when I first called and told them my diagnosis. Did a follow up MRI with them etc. My experience was that it was tough to get an appointment, waiting times were ridiculous and I only saw the breast surgeon (versus her PA) for about 2 minutes. Based on that experience, I decided to see the head of breast surgery at Bryn Mawr Hospital for a second opinion. Bryn Mawr is closer to my home and I think that overall their docs and facilities are excellent. Anyway, I was very pleased with my decision and absolutely love my surgeon. The challenge at Penn is just that they see so many extremely sick people so I felt my LCIS was somehow not seen as "bad enough" to warrant much focus and attention. Not sure where you are in PA but there are many great hospitals in our vicinity so I'd suggest looking around a bit if you opt not to go to Penn.

    And totally agree with Leaf about LCIS being bilateral. At original diagnosis they only found it on one side but after mastectomy, it was shown to be in both. Not sure why your doc wouldn't want to monitor both sides. That sounds off to me.

    Good luck!


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    MaryinPA------LCIS is generally thought to be a bilateral disease, meaning if you have it in one breast, you most likely have it in the other. So, it doesn't make any sense to just monitor one side. I was diagnosed 13 years ago, had a lumpectomy, took tamoxifen for 5 years, then went to Evista for about 7 years, I've been monitored closely with alternating MRIs and mammos every 6 months and breast exams on the opposite 6 months for years. Recently, my new oncologist recommended I stop the evista and MRIs, she's is concerned about long term effects of the meds and the contrast dye, and feels the 3-D mammos (tomosynthesis) are good enough for me, since I have essentially no breast density (an added benefit from the tamox, decreases density and makes it easier to see things on mammo). My oncologist follows me, although sometimes my gyn will order the tests. (I haven't seen my surgeon since my initial follow-up after surgery nearly 13 years ago). If you're not taking antihormonals (tamox, evista, or aromasin), you probably don't need the oncologist, as long as the gyn will monitor you closely and order your imaging tests.

    anne

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  • MaryinPa
    MaryinPa Member Posts: 8
    edited August 2016

    Thanks so much Leaf! I will need to follow up with my gyno and ask for more testing on a regular basis. I do have very dense breasts and my last mammo was 3d. So will you be having 3d mammos every six months or annually with an exam between? Do you ever have ultra sounds or have you just had the MRIs?

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  • MaryinPa
    MaryinPa Member Posts: 8
    edited August 2016

    Sorry, thank you all, not just Leaf! Marketingmomma, I will check other hospitals as well. I had hoped to get a recommendation for a doctor of facility to go to for follow up. I understand what you mean about it not being bad enough at U of Penn, especially given my local doctors attitude that it's not really cancer, so don't worry. these message boards are a great help, lots of info and sharing for a topic that seems so vague.

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  • marketingmama
    marketingmama Member Posts: 161
    edited August 2016

    Mary, don't know where you are in PA but feel free to message me privately and perhaps i can make a suggestion based on your location. A good person to ask first might be your gyno.

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  • leaf
    leaf Member Posts: 8,188
    edited August 2016

    I have only had ultrasounds when they found something unusual in my mammograms. The NCCN recommends a clinical breast exam every 6-12 months https://www.nccn.org/patients/guidelines/stage_0_b... I'm not up on the latest in ultrasound, but I don't think they can do screening ultrasounds, but I may be wrong about that.

    Right now, I have a yearly clinical exam, yearly mammograms, and a yearly breast MRI, but I have some additional potential risk factors. Each doctor has different opinions. But to me it does NOT make sense to do screening on one breast only.

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  • LeslieMemsicMD
    LeslieMemsicMD Member Posts: 29
    edited August 2016

    LCIS is definitely a confusing diagnosis. Breast specialists may not even understand what it means. Part of the confusion lies in the name. Since it is called lobular carcinoma in situ, it is thought by many to be a cancer or even a "precancer" but it is not. It is atypical cells that act as a "marker" indicating a woman with it has an increased risk of developing breast cancer in either breast. The cancer community has proposed it be renamed "neoplasia" rather than carcinoma to help minimize the confusion. It also sounds similar to DCIS (ductal cardinoma in situ) which IS a noninvasive cancer. A woman diagnosed with LCIS - usually after biopsy of calcifications or incidentally associated with a mass - does not have cancer but is at increased risk of getting cancer in the future. Some studies suggest the risk is as high as 25 percent (remember every women - even those with no risk factors has a risk around 12 percent) so the question is what should a woman do when given this diagnosis? It depends upon the presence of additional risk factors (family history of breast cancer, BRCA gene, obesity, no children, hormone therapy etc). Since both breasts are at increased risk, unilateral mastectomy is never indicated - removing the breast with the LCIS makes no sense. Bilateral prophylactic mastectomy in those patients with multiple risk factors or extremely difficult to examine breasts that have had multiple biopsies may be considered but the majority of patients can be followed carefully so that if they develop a cancer it can be caught in the early treatable stages Remember the majority of women with LCIS DO NOT get breast cancer). Regular imaging studies including mammogram, ultrasound and MRI as well as biannual breast exams are suggested, but there is no consensus among physicians on how often these should be done..Prompt biopsy of any abnormalities allows early diagnosis should breast cancer develop but can be a major source of anxiety. Tamoxifen in premenopausal high risk women and Aromasin in postmenopausal women have proven to decrease the risk of developing cancer by as much as 50 percent (bringing a woman's risk back down to that in  the general population) and is a great option but all meds have side effects including malignancy (uterine with tamoxifen ), osteoporosis (aromosin) and  menopausal symptoms andblood clots (both). Statistically, you are going to be fine, but you do need to be followed by a specialist who keeps up with research so you can benefit from any new developments. I applaud you for reaching out. I recommend you seek consultation with a few specialists in the field and together you can decide what approach to surveillance and treatment makes sense to you. Every women must be treated based upon their specific risk factors and concerns. Good luck and take care. I know this is upsetting, but this biopsy was a gift- now you know you are at higher risk and will be followed. You were at risk before the LCIS was found you just didn't know it and could not take extra care.

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  • fleur-de-lis
    fleur-de-lis Member Posts: 107
    edited September 2016

    interesting, Dr. Leslie that you mention Aroma Inhibitors and the possibility of a thrombotic event. I was told by my BS, MO, and Hemotologist that this is not a common SE. Well, guess what? I am Hetrozygote for Factor V Leiden, and MTHFR, and ended up in the ER very shortly after starting an AI with the signs of DVTs developing in both legs....dDimner testing suggested that was the case. Started on Coumadin and bridged to lovenex injections. No SERMS or AI for me.

    It should be noted that I had several ports and pic lines prior to my DX. of FVL and MTHFR due to IVIG and IV ABX. Never had any thrombotic events or even a Phlebitis issue

    Most medical journals say this does not happen, but others suggest that it can.....it should, at least in those with known genetic mutations which predispose them to thrombotic events, be mentioned to them by their doctor. I "fired"my Hemotologist and went elsewhere.


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