silly question about our ILC section of board

wallycat
wallycat Member Posts: 3,227
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi ladies...a bit off topic, but didn't there used to be tons of threads here (I learned sooooooo much from reading the backlog). What happened to our section???!!!

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  • marshakb
    marshakb Member Posts: 1,664
    edited July 2007

    I agree Wallycat, I came back here to get some info to arm myself knowledge about having a bi-lat and all the threads with the lobular links are gone. Dang

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2007
    Marshakb,
    what question did you have? Maybe one of us remembers the answer !
    Best to you with your decisions...as you know I opted for bilateral and am 21 days exactly today.
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  • scarednancy
    scarednancy Member Posts: 76
    edited July 2007
    I don't understand why there aren't more ladies on this site. When I was dx with ILC in October 06, the doctor told me that ILC's were on the rise. She thought the occurance rate had doubled in the recent year. It is comforting to talk with others who have ILC.
    Thanks,
    Nancy
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited July 2007
    I'm an ILC gal. I can try to help, too.

    lini
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  • nash
    nash Member Posts: 2,600
    edited July 2007
    I'm a newish ILC gal, and I was wondering what happened to all the posts, too! Nothing comes up in the searches I've done, either, on topics I wanted to re-read.

    If anyone would be interested in resharing the chemos they've been on, and if anyone opted for hormonal therapy over chemo, I'd love to revisit that topic.
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited July 2007

    Nash - 5mm ILC in left breast, bilateral (right was prophy but found LCIS)in Feb. 06. Pre-meno, er/pr+, her-. No chemo, no hormonal therapy. Risk outweighs benefits according to onc.

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2007
    Nash,
    I had the oncotypeDX and scored a 20. That is low intermediate and with the adjuvantonline.com benefit comparison, 2%, onco felt risks outweighed benefit. I am a 7 out of 8 positive for er/pr so with that plus the MD Anderson study that indicated lob gals are less responsive to chemo and still do well in terms of survival.
    I am terrified of starting tamoxifen but also terrified of not doing anything more.
    I had a 1.8cm tumor removed on lumpectomy and zero nodes on SNB. I went back for bilateral proph. mastectomy and no cancer and no precancer found in any of the tissue in either breast.
    I've read about "the old days" where women would get mastectomy and get on with their life ....now there is so much to opt for and test for ....not sure if it is easier or not.
    Best to you with your decision.
    Oh, I am premenopause, 50 and 21 days post-bilaterals today.
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  • mcgaffey
    mcgaffey Member Posts: 241
    edited July 2007

    Hi, I had ilc, 1.5, no positive nodes, lump, did rads and am now on Arimidex. I am 60.

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  • Lisa9753
    Lisa9753 Member Posts: 10
    edited July 2007

    I had ILC, 3.5 cm tumor, did six months of chemo to shrink it, then had a double mastectomy with reconstruction. I was on Adriamyacin and Cytoxin, which ate about 1 cm of my tumor after each infusion, then finished off the remainder of the tumor with a combination of Taxotere (allergy) and Taxol. By the time I had surgery, the cancer tumor was a pile of dead cancer cells, however, pathology found a separate quadrant of my breast full of LCIS. Boy am I glad I chose that double mastectomy.

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  • marshakb
    marshakb Member Posts: 1,664
    edited July 2007
    Wow, Lisa I am glad to hear from you. Articles suggest chemo is not very effective on Lobular but it sure sounds like it was for you!! I did A/C and taxol also, afraid not to, but did mine after surgery.

    I had a 5.2 cm tumor, one of 13 nodes with micro cells. Am going for my 13th rad in a few minutes. ER/PR pos so am taking tamoxifen.

    My surgeon thought a bi-lat was drastic so I did the single. after the path came back there was a 1.5 LCIS in there that didn't show up on mamm or u/s. The node didn't either. I was looking for the thread here that had several links for lobular to make my case for the removal of the other breast. It is very difficult to find those. I think it was Elizabeth06 that had posted a bunch of links she had found.

    I agree, would be nice if there were more of us around to talk to!!!! I check this thread when I come on and rarely is there a new post unless it is a sicko sex pervert! LOL

    Hugs Marsha
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  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited July 2007
    Marsha~My surgeon only recommended a bilateral. It is what he would tell his wife and any family member. Yes, it was considered extreme by some, but he said that at my age and meno. status it was almost certain that I'd be looking at more BC 5 years down the line. My prophy right had areas of LCIS and ADH, so it was good decision for me. The bilateral, along with the small tumor size, also bought me out of the chemo and drugs.

    I hope that you get what you want.

    best to you,

    lini
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  • figsgirls
    figsgirls Member Posts: 253
    edited July 2007
    Hi. I am an ILC lady also. 4cm tumor in left breast, micromets in sentinel node. All other nodes were clear. The pathology showed dirty margins and LCIS, so my surgeon recommended left breast mastectomy. I decided to have a proph. right mast as well, and my surgeon agreed completely. I knew I couldn't continue to worry about what might be in the right breast (the tumor didn't appear on my mamograms). The right breast and nodes were clear but I don't regret the decision.
    I'm 3 weeks post-surgery and have expanders. Getting a fill next Friday.
    Starting chemo (AC/T) July 16. Then Temoxifan. If I don't stay in menopause, the oncologist suggested removing my ovaries next year.
    Oh, and I'm 42.

    Donna
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  • ValerieF
    ValerieF Member Posts: 25
    edited August 2007
    Hi. I visit breastcancer.org mostly b/c they have the ILC-specific thread. I don't post much, mostly b/c I spend many hours on YSC boards.
    I was dx with ILC last summer at age 39 (4.5 cm, 3+ nodes). I had a bilat mast w/ implants put in. After reading the research, I asked my onc about hormonal tx rather than chemo, and she said it sounded "reasonable." So far, so good. I had 6.5 weeks of rads and have been on OS since Sept. I take Tamoxifen too.

    This summer I had DIEP recon done, and tomorrow I'm having an oopherectomy. Not a fun summer, but oh well. I'm glad to be here. My mom died of bc when she was 48, her sister is a 20 year survivor, and their grandmother (my great-gr) died of bc in 1922.
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  • karen1956
    karen1956 Member Posts: 6,503
    edited August 2007
    Valerie - All the best to you tomorrow.
    Both the surgeons I interviewed recommended that I do a bilat mastectomy. My oncologist said chemo at the first appt and that rads would depend on # of lymph nodes - 4 or more rads. He also rec that I have an ooph as he wanted me on AI's. So I got the what I call the "blue plate special"" - bialt, TAC chemo, rads, ooph and AI's. I also did expander recon. It was a good thing that I did the bilat as the prophy side ended up being pre-cancerous.
    KAren in Denver
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