Anyone ever had their ILC spread down south??

lovinmomma
lovinmomma Member Posts: 1,879
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I went in for my preop for my hysterectomy today and had a pap and the gyn said she saw 2 or 3 spots in my vagina that were very suspicious. She said that the ILC has a tendancy to be sneaky and can spread without making much of a show. She biopsied 2 spots and she said she was worried enough about it to biopsy it.

has anyone ever had this??? Help please.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Kim

    Im sorry to hear that you might have more on your plate to deal with...

    Did she say the name of what she thought it might be? My daughters friend has a vulvalar cancer and was treated in Spokane.

    Hugs

    Jule

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited April 2009

    She did not Jule. She just saw the spots on the vaginal wall. What doc did your daughters freind use (you cna pm me that). I am know waiting for results again.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Kim

    I will have to get the doctors name...I will try to do that today for you.

    I think this sort of thing is rather rare so will keep you in my thoughts for the tests to be B-9....

    When will you get the results?

    Hugs

    Jule

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited April 2009

    They said 2 to 3 days, so I am really hoping on Friday and not having to wait until Monday!!!!!!

    That waiting is the worst!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Yes I know it is....I wish there was something to be done about that but I guess on the other hand we dont want them rushing through things either.....better to have a firm dx than to get the daylights scared out of us just to find out there was a mistake....

    I know my words all sound big, bad and brave but when it comes down to it...I turn into a ball of nerves during the wait phase....at one point I was so bad that my surgeon had them medicate me at the door of the hospital before I had even checked in!!!!!

    Try to stay busy and I know, here goes again....try not to think about this constantly....I guess just feel so badly that you are having to wait again that I dont really have words to say.....

    Hugs

    Jule

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  • spar2
    spar2 Member Posts: 6,827
    edited April 2009

    loveinmomma, I have been worried about something like this too because I know something is not right down there and after sex, even with a lubricate I bleed for 2 days and the pain is horrible even to wipe after urinating.  I keep intending to get a pelvic but have been putting it off.  It has been about 4 years.

    I will be very interested to see how your biopsy turns out, am praying for B9 and you may give me the courage to go get checked out.  gentle hugs. Sherry

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    According to this abstract, it can happen, but it is unusual/uncommon.

    http://www.ncbi.nlm.nih.gov/pubmed/17688635

    http://www.ncbi.nlm.nih.gov/pubmed/14595801

    The relative of a colleague had vulvar cancer, and the treatment was multiple surgeries (no chemos). I can't remember whether this was before or after she had breast cancer, but she did have both.

    Crossing my fingers for you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    lovinmamma--I've read that those with ILC have a higher incidence of endometrial and peritoneal cancers. My mom had ILC 22 years ago, fortunately has never had a recurrence or any of the above cancers, but has had colon cancer twice since.

    Anne

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited April 2009

    Thank you all!  The biopsies came back B9!!  Thank you lord!!!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Kim

    So very happy to see this result of B-9 for you!!!

    Was gone all weekend camping so hope you enjoyed the weekend with such great news...

    Hugs

    Jule

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  • sushanna1
    sushanna1 Member Posts: 764
    edited April 2009

    Congratulations.  Yippee. 

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  • spar2
    spar2 Member Posts: 6,827
    edited April 2009

    So very happy about this!!!!!!!!!! Praise God indeed.

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  • HensonChi
    HensonChi Member Posts: 357
    edited April 2009

    Awesome News!

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  • kim40
    kim40 Member Posts: 904
    edited April 2009

    Great News Kim!

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  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    Go out and celebrate YOU!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    Kim, I read the whole thread with my heart in my throat for you! So glad all is good. Now take it all out! (not your vagina, of course, you know what parts I mean, right? Undecided)

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  • dsub
    dsub Member Posts: 37
    edited May 2009

    I November of 2007 I noticed a white spot on my vulva. My gyno said it was a form of the herpes. I went to my daughters doc and he did a biopsy. It was CIS. I had a vulvadectomy, I didn't want them to miss a spot as I had cervical cancer in '99. Low and behold, found a lump in breast, diagnosed with bc on 2/16/2009. I wonder if thats how I got the vulva cancer???

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  • dianaon
    dianaon Member Posts: 31
    edited May 2009

    Having been an NP for 25 yrs and a coord of GYN oncology 15 yrs ago- believe me when I say the Path can tell (99% of the time) if a new tumor site is BC mets or new. Like your local skin "CA" In Situ- which, by the way is totally CURABLE, In Situ, or CIS- Carcinoma In Situ, means not grown thru the dermis- no mets - no chance.

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