Just diagnosed with ILC

Iam
Iam Member Posts: 82
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Just diagnosed with ILC
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  • Iam
    Iam Member Posts: 82
    edited June 2009

    Please help me.  I'm new here and I'm looking for anybody with this type of size ILC and what their treatments were.  I had a mastectomy done.  Grade 1, ILC 0.33cm or 1/8", lymph nodes negative, margins clear, ER/PR+, HER2 neu negative.  I am meeting with the oncologist soon.

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  • nash
    nash Member Posts: 2,600
    edited June 2009

    The oncologist should order Oncotype DX for you. You can read about the test at www.oncotype.com. It looks at the DNA of the tumor and gives the docs info on whether you'd benefit from chemo or not.

    With a very small, grade 1 tumor and negative nodes, you most likely would only need hormone therapy (Tamoxifen or an aromatase inhibitor, depending on your menopausal status).  A low Oncotype score would confirm that course of treatment.

    Congrats on having such a small lobular tumor--they're not easy to find when they're that size. 

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  • Iam
    Iam Member Posts: 82
    edited June 2009

    Yes, I've been hearing about finding out what my score would be.  I'm trying to be as hopeful and thinking as positively I can.  I am 52 but have not yet reached menopause - though I'm seeing some slight changes. 

    Thank you.  They found a lot of suspicous microcalcifications.  Luckily, it was found in all that mess. The pathologists spent two weeks going through all those cells and doing a very thorough job.

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  • Rabbit_fan
    Rabbit_fan Member Posts: 166
    edited June 2009

    I was just diagnosed with .9cm ILC in April 2009.  The tumor showed up very clearly on a screening mammo so I feel lucky.  I was first advised to do double mastectomy and was totally devastated, but another doctor in the same practice told me I could do lumpectomy.  I got another opinion at the Mayo Clinic and they agreed that lumpectomy was reasonable.  I did that and will be having radiation and have started Tamoxifen. 

    The medical oncologist told me I needed chemo and showed me stats (I think maybe from Adjuvant online) that chemo would have a 3-6% chance of preventing distant recurrence.  When I broke down in tears she offered me the Oncotype Dx TAILORx trial - I chose to just get the Oncotype Dx test and it came back as low risk with Tamoxifen and no added benefit from chemo.  I had moved on to a second medical oncologist by the time the test came back, and he said with my Oncotype score of 11, bypassing chemo was "a no-brainer."

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  • nash
    nash Member Posts: 2,600
    edited June 2009

    Eileen, glad you found us. Congrats on the ILC being seen on sreening mammo (very unusual!) and the low Oncotype score. Both great pieces of news in a not-so-great situation of having cancer.

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  • Rabbit_fan
    Rabbit_fan Member Posts: 166
    edited June 2009

    Hi, nash.  Nice to talk to you - I've read a lot of the posts from you and the others with ILC and found them very helpful while I've been trying to figure everything out - thank you. 

    After reading so many stories where people say they knew something was wrong and the mammograms and ultrasounds couldn't find it I have really wondered why mine showed up.  I think the radiation oncologist believes that digital mammograms are better at detecting things -- he said he wasn't convinced at first that they were better but he has come to believe that they have improved detection - has anyone else heard that?

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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2009

    Hi, Eileen -

    We have similar stats and experiences - age at diagnosis, Oncotype score of 11, lumpectomy vs bilat after advice to consider bilat, push for chemo prior to Oncotype by one med onc w/switch to another one, no node involvement, etc. Although my tumor had a chance to get larger while I debated surgery options and enjoyed a festival of scans and other treats last summer, so it was 2.1 at removal.

    Anyway - although my tumor was outside the area that they were usually mammogramming (they work hard to scrape in every bit of tissue they can now, after the fact), I will say that I could really believe that with digital mammography, they'd have a much better chance of seeing something. When I had my follow-up earlier this year, I had a digital mammogram for the first time, and the technician compared for me the older non-digital images and the newer ones. It was AMAZING how much you could see on the digital! Anyone who is NOT getting digital should seriously switch. It's the difference between looking at a slightly unfocused snowstorm and clear images of a series of snowflakes. I'd had mammograms in Tucson, Lincoln, and Arlington, and none of the non-digital images were as crystal clear as the digital, so it's not just specific equipment or a technician's skill.

    Eileen - my medical and radiation oncologist both advised me to wait until AFTER radiation to begin the Tamoxifen, both because it can sometimes exacerbate the radiation side effects and also because it may de-activate some cells that might otherwise be better eliminated by the radiation. You may want to ask about that. Also - each treatment comes with its own constellation of side effects, and I had an easier time dealing with things one at a time... fatigue and skin issues and driving, driving, driving with the radiation, and then, later, the hot flashes and wacky menstrual cycle of the Tamoxifen.

    Coleen

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  • nash
    nash Member Posts: 2,600
    edited June 2009
    I now get diagnostic digital mammos, and the radiologist still can't read mine (her words!) due to my extremely dense breasts, but my microcalcifications show up on mammos, so they're still worth doing in addition to my breast MRIs. The mammo tech showed me the digital images vs. the regular ones the last time I was in, and there is a marked difference in clarity.
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  • Rabbit_fan
    Rabbit_fan Member Posts: 166
    edited June 2009

    Hi Coleen - thanks for your opinion - I had also noticed from your posts that we have similar stats, so it's great to hear from you.  I start radiation on Wednesday, so maybe I'll ask again about Tamoxifen.  I wish there were some "right" answers on a lot of these things.  When I asked my med onc, I think he said that studies were inconclusive or studies didn't show a benefit from waiting.  Then the rad onc just said go ahead and start taking it and I didn't push it.  It gets so frustrating!  We all want to do the right thing, and it's maddening not to be able to tell what that is!

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