Lobular or mets to ovaries?

Lily55
Lily55 Member Posts: 3,534
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Just wondering how many women with ILC went on to develop lobular BC or mets in the ovaries?  Its my biggest worry and I do have some symptoms, I have asked for ovaries to come out but they refuse......think they are trying to kill me off........am going to push for ovary removal again next week..............my understanding is we are more likely to get ovarian cancer once we´ve had ILC....???

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  • Racy
    Racy Member Posts: 2,651
    edited February 2014

    Lily, I had heard that too but am not sure that it is 100% true as I haven't researched it for quite a while. I initially thought of having my ovaries out but ended up having faith when my doctor said it wasn't necessary. (I take Femara which has shown very good results in preventing recurrence of ILC).

    Another reason that I changed my mind about the surgery was that ILC can metastasise virtually anywhere in the body, and while removing the ovaries might prevent it spreading there, it could go somewhere else instead!

    But you have to do what you are comfortable with. Research on the topic, and if you still think it's necessary, get one or more other opinions. If three doctors say no, then chances are their advice is sound, or at least in keeping with treatment guidelines. If one doctor says yes, you can then proceed if you still want to.

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  • Racy
    Racy Member Posts: 2,651
    edited February 2014

    ps If you have symptoms, have you discused them with your doctor? Have you had any tests such as an ultrasound? 

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2014

    What symptoms are you having?

    Have you had the CA-125 lab work done and can they ultrasound you?  Having just recently had some scares, mine turned

    out b-9 and fine, so hopefully, yours is just anxiety.  

    I agree with Racy that there is no predicting where a met can develop and I too had been refused many times for girl-part removal.  Interestingly, my twin found a doc (back home, in WI) that did it without batting an eye and she only has LCIS .

    Best to you and try not to stress too much.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2014

    yes had blood test, and ultrasound , this time my ovaries could be seen, not seen before, so therefore must be growing as doc said nit seen before as so small and that was normal, pain across bottom of belly, bloating after eating, not  able to eat large quantities, symptoms of urine infection but nothing shows in urine tests, and my intuition. 

    I see surgeon next week hope i can persuade him, ovarian cancer has very low survival rate at 35%

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  • toomuch
    toomuch Member Posts: 901
    edited February 2014

    Lily - Having ILC does not increase our chances of developing ovarian ca. ILC metastasizes to all the same places as IDC but metastasizes to the abdominal cavity and ovaries more often then IDC. Have you seen a gyn oncologist? I believe that whether or not they recommend ovary removal is somewhat dependent on your age. I was 48 and premenapausal at diagnosis but I wanted to go on AI's so I wanted my ovaries/tubes out. I consulted 2 gyn oncologists. Both agreed that since I was almost 50, it was reasonable to remove my ovaries & tubes. One recommended a full hysterectomy but I chose to keep my uterus. Because of the risk for ovarian mets, I felt that it was important for a gyn oncologist and not my regular gyn to do the surgery. In addition to the tubo-ophorectomy he did peritoneal washings to look for BC cells in my abdominal cavity. I don't think that a regular gyn would do that. I had the surgery between chemo and radiation and the recovery was easy. I hope that you get some answers from the surgeon and that the results are benign!

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  • lekker
    lekker Member Posts: 594
    edited February 2014

    Lily - just as a mastectomy reduces, but doesn't eliminate, the chances of developing breast cancer, a bilateral oophorectomy doesn't mean you can't get ovarian cancer.  The cells of the peritoneum are very similar to the epithelial cells of the ovary and you can develop what is known as primary peritoneal cancer even in the absence of ovaries.  Also breast cancer can metastasize to the peritoneum so I don't know if it would offer any protection for mets.  I chose to have an ooph because I had already had a malignant colon polyp at 30 and premenopausal breast cancer.  Because I don't have a known genetic mutation, no one could give me a specific risk calculation, but my gyn onc assumed I had an elevated risk for ovarian cancer and was fully supportive of my decision.  If I didn't have the ooph, I was considering ovarian suppression since I was ER/PR+ and still at least a few years away from menopause.  If you're already past menopause, have no personal or family risks for ovarian cancer (aside from the ILC which unless it's premenopausal, I don't think it's significant) and no other ovarian symptoms, the risks of the surgery probably outweigh any potential benefits, but only you can make that decision.

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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2014

    My mother had ovarian cancer after breast cancer. I am 50 and am post -menopause since the chemo last year. Should I consider getting my ovaries removed or a hysterectomy? I am going to my gyn this week and will bring it up with her. 

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  • lekker
    lekker Member Posts: 594
    edited April 2014

    Annette - have you consulted a licensed genetic counselor?  An LGC should be able to analyze your family history (from both sides) and can determine if you have an elevated risk for ovarian (and possibly other) cancer.  Your primary care physician or your oncologist should be able to help you with the referral.  A regular gynecologist is probably not the best person to consult about this, but also might be able to make the referral for genetic counseling.  

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  • hlya
    hlya Member Posts: 484
    edited April 2014

    Hi, Wallycat,

    What is CA-125 lab work?

    And is it only available in the States?

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2014

    CA-125 is a tumor marker typically used to check for ovarian cancer.  It is not a 100% accurate test.  Some gals can run high and not have cancer and others have normal markers and do have the cancer.  This test is not definitive, but it is used as one more thing to rule in or out certain symptoms.

    I would like to think it can be obtained anywhere, but don't quote me on it.

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  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    hlya, CA-125 is used both in BC and ovarian cancer. It is available most places, I think, and certainly in the US. Many docs do not like the test, because of its unreliable results.

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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2014

    Lekker, I did have genetic tests and my daughter had one for colon. Both of us came up negative. My Dad had skin and lung cancer which killed him, my Mom had breast, ovarian and bladder cancer (all early stage). She has survived 17 years from the first cancer. There are genetic markers our scientists have not yet been able to identify as cancer causing. We just have to bet on survival luck and currently available treatment options for recurrences. I do hope there will be more tailored treatments for ILC in the future since the threat of reacurrance is greater after 5 -15 years. Being a decade younger then the typical age of onset diagnosis (age 58-60), I'd like all the time I can get.

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