Pollyanna wants off the rollercoaster

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Alittleknowledgeisdangerous
Alittleknowledgeisdangerous Member Posts: 18
edited March 2015 in LCIS (Lobular Carcinoma In Situ)

Excisional biopsy last week. (The third excision on the right breast, all benign. Two on left breast, also benign.)

I was feeling good after the nurse from the breast center called and said my Pathology report only said ALH, same as the core biopsy had shown. Referred to oncology. Fine. Then my primary called. I told him I wasn't worried. But he said the path report showed LCIS, and I needed more surgery, MRIs and PET. (Overkill?) he made it sound like I do have cancer.

Meanwhile, my Breast surgeon was having emergency surgery herself, so there is no input from the real authority. I have been waiting for the oncologist to schedule an appointment for me, after review of records. Who knows how long that will take.

Correct me if I am wrong: LCIS is not real cancer. I may be offered Tamoxifen or another drug to prevent it from becoming real cancer. I will have to have close surveillance on both breasts, possibly including MRI.

Questions: If invasive lobular cancer is not visible on mammogram, US or MRI, how do we catch it in time? What are we looking for? I had all this work done because I sensed something pulling, and though nothing was evident on exam or visible on imaging my primary pushed for further studies. (Sometimes, overkill helps. )


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  • lulud471
    lulud471 Member Posts: 89
    edited February 2015

    First of all, I just have to say I love your creativity in naming the topic and your screen name! :-) My ILC was caught because micro-calcifications showed up on my screening mammo, a stereotactic needle biopsy was done which showed LCIS, then an excisional biopsy was done which showed ILC. I personally think knowledge is power & that, if you are so inclined (and it seems you are), keep yourself knowledgeable by researching but only looking at reputable sites: my personal favorites are Mayo Clinic and any Nat'l Institutes of Health studies that show up when googling all things BC! Having said all of that, the weird thing is this: when the imaging center called me back about the mammo showing micro-calcifications, I instantly thought it was probably my left breast because I had been feeling "pulling" in that breast, same as you. And it was the left! They say there's no way the pulling feeling had anything to do w/ the ILC but I still wonder....

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  • daisylover
    daisylover Member Posts: 310
    edited February 2015

    I had discomfort in my left breast as well as my armpit. So, I insisted on a BMX (prophylactic left MX). Glad I did because there was cancer there - in the exact spot where my discomfort was! That cancer was not seen on Mammogram, US, or MRI. So, I understand your concern. It sounds like they are being thorough though. If you have dense breasts like I did, insurance should cover annual MRI or US. My primary also ordered the Ultrasound that showed my cancer in the right breast (not seen on mammogram). It's good that you are so pro-active about your health! Best wishes.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2015

    I'm confused, because when an excisional biopsy just shows LCIS they put you on high risk surveillance and possibly antihormonals. They don't even don't do PET for many early invasive cancers. Why would they even be considering that


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  • leaf
    leaf Member Posts: 8,188
    edited February 2015

    I agree with MelissaDallas in questioning whether a PET is necessary with 'only' a diagnosis of LCIS; maybe they were getting overexcited since LCIS with nothing worse is relatively uncommon??? After all, it sounds like you have already had an excisional biopsy and they found nothing worse. Maybe your imaging/pulling sensations did not correspond strictly to the LCIS (since most LCIS is found as an incidental finding), and they are concerned you have something worse (DCIS or invasive)? Or someone disagrees with your breast surgeon and thinks they did not do a wide enough excision??

    I don't know, but I'm coming to the conclusion that when you get first diagnosed with something, doctors want to communicate the message that they will take care of you. As alittleknowledgeisdangerous said, they were mentioning overkill.

    The point with surveillance/surgery is to try to catch any potential DCIS or invasive early with increased monitoring. But, unless you have other risk factors such as a significant family history of breast/ovarian cancer, or radiation treatment to the chest (such as for lymphoma), the majority of LCIS women will probably not ever get breast cancer (though the data is extremely limited in this regard.) Almost everything regarding LCIS is controversial.

    For one of your questions: Most oncologists do not consider LCIS as cancer. This from the NCI:

    Breast changes that are not cancer, but increase your risk of cancer

    These conditions are not cancer, but having them increases your risk of breast cancer. They are considered risk factors for breast cancer. Other risk factors include, for example, your age and a family history of breast cancer....

    • Lobular carcinoma in situ (LCIS) is a condition in which abnormal cells are found in the breast lobules. There are more abnormal cells in the lobule with LCIS than with ALH. Since these cells have not spread outside the breast lobules, it's called "in situ," which is a Latin term that means "in place."

    The abnormal cells found in these conditions are not cancer cells. If you have ALH, ADH, or LCIS, talk with a doctor who specializes in breast health to make a plan that works best for you. Depending on your personal and family medical history, it may include:

    • Mammograms every year
    • Clinical breast exams every 6 to 12 months
    • Tamoxifen (for all women) or raloxifene (for postmenopausal women). These drugs have been shown to lower some women's risk of breast cancer.
    • Surgery. A small number of women with LCIS and high risk factors for breast cancer may choose to have surgery.
    • Clinical trials. Talk with your health care provider about whether a clinical trial is a good choice for you.

    http://www.cancer.gov/cancertopics/screening/under...

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  • Alittleknowledgeisdangerous
    Alittleknowledgeisdangerous Member Posts: 18
    edited February 2015

    I really don't know why a PET was mentioned, which is one of the reasons I am confused. But it was my primary who mentioned it, not the surgeon. The surgeon closed her practice due to her own illness, 3 days after my excisional. So I will calmly wait for oncology appointment next month. This all started beforThanksgivin, so I am getting used towaiting.

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  • Alittleknowledgeisdangerous
    Alittleknowledgeisdangerous Member Posts: 18
    edited February 2015

    very interesting that two women other than myself felt, sensed something inside which science says should not be discernible. I love it. Trust yourself!


    Leaf...I got the impression from my primary that he did not think enough tissue was taken. I expect the oncologist will be the mediator there, though I will still do my own thinking. Thanks.


    Also, age seems to matter. I read a study that women over 80 are not aggressively treated. That is only 12 years away, and the increased risk is apparently lifelong. Since I have used my retirement years to walk through the Alps, across England, through rainforests and along the Camino in Spain I expect to maintain my health for at least20 more years.

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  • leaf
    leaf Member Posts: 8,188
    edited February 2015

    I would imagine that the decision about aggressiveness of treatment are individualized. An over 80 year old person that has many other serious health problems would have a different life expectancy than an over 80 year old person who is otherwise healthy. It sounds like you lead a very active, healthy life.

    Note that if you have a further excision, that will probably be done by a surgeon, not by your oncologist or primary care doctor. The person who does the surgery needs to agree to do the surgery. I had some support from my onc to do PBMs, if that's what I wanted, but since my breast surgeon refused, that was not going to happen unless I got another surgeon to do the surgery (which would require going out of network and paying myself.)

    Would it be appropriate to get the opinion of another breast surgeon, since your former breast surgeon is out of the picture, at least for a while?

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  • liveit56
    liveit56 Member Posts: 196
    edited March 2015


    It is strange you mention the pulling feeling I have the same thing....I had ask that question in a post earlier...something feels different this time.

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