IDC w/ lobular features

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MC21
MC21 Member Posts: 12
edited July 2018 in IDC (Invasive Ductal Carcinoma)

For the passed month I was believed to have ILC. Now after lumpectomy pathology says IDC-L which really behaves more like ILC than IDC I have been told. Also a Stage 2 with one positive node. Have 1 close margin so going back for a second surgery on Tuesday. I will be 2 weeks post my first lumpectomy when I go in for the second. Def need radiation which I knew but now may need chemo. This took the wind out my sails for sure. I am scared of this all. But I will go through the emotions and get back mentally strong for what’s ahead. Anybody else have IDC-L ?

I do not want to take Tamoxifen for 5+ years either so thinking of alternative treatment (more natural with less serious side effects). Anyone else forego Tamoxifen and go a more natural route.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2018

    There is a link on this website for alternative treatments.

    Good luck!

    Diane

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  • letsgogolf
    letsgogolf Member Posts: 263
    edited June 2018

    I also had IDC-L. For some reason, studies show that 1 node is often involved in this type. Spreading to other parts of the body is less likely with IDC-L. Margins are involved more often as well. I think I read the % of having to go back in is close to 50%. How large was your tumor and what was the grade? I would suggest having the Oncotype DX. My score was very low and I was able to avoid chemo. Best wishes!

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  • MC21
    MC21 Member Posts: 12
    edited June 2018

    Tumor was 2cm. Grade 2 is what I was told prior to surgery didn’t even ask about grade today when she called. I did the oncotypedx I have the report I do not see a number on it everything was negative except for a variation in APC gene.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited June 2018

    Hi there. Sounds like maybe you are looking at the results of genetic testing, not the Oncotype DX test. The Oncotype is usually done after surgery and results may take two weeks. It gives you two numbers: a numerical score and a percentage rate which is the possibility of cancer returning.

    For my IDC/ILC mix I did not need chemo but am on Tamoxifen since it is essentially reducing my risk of recurrence from 11 percent to 5.5 percent. It seems worth it to me but everyone needs to make their own choice. Good luck with everything and let us know how we can best help. It's going to be a stressful time but it will be in the rearview mirror soon.

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  • Mucki1991
    Mucki1991 Member Posts: 294
    edited June 2018

    I know there are a lot of people who have side effects on tamoxifen.I was really worried about it but I'm two months in and have no side effects. I have hot flashes but those started during chemopause... Just letting you know it's not horrible for everyone and I'm thankful it's an option for me.

    Best wishes for you

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  • Bagsharon
    Bagsharon Member Posts: 200
    edited June 2018

    I was diagnosed with IDC-L. I had isolated cells in one node but they consider that negative. My Oncotype was 20. My case went before the tumor board and they felt I should have chemo but in the end it was still my choice. I opted for chemo. It was manageable. The location of the tumor and the radiation caused my breast to sort of collapse in on itself and I'm currently going through fat grafting to get it filled out. I have no regrets about my decisions.

    Don't be afraid of Tamoxifen. Not everybody has side effects. I started out on Arimedex and had horrible side effects. Switched to Tamoxifen and have a lot fewer problems. I still get night sweats but the joint pain is gone. Your doctor will work with you to find the right meds. They now recommend 10 years now instead of 5, by the way. It's a pain but in the end I'm glad I have this weapon in my arsenal. And don't follow the thread about Tamoxifen on this message board. That will only scare you. Those women are outliers and the women who don't have problems don't post.

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  • MC21
    MC21 Member Posts: 12
    edited June 2018

    thank you guys for all the information and positive support. It is nice to hear some good news on Tamoxifen. My head is just going again. I know I had the oncotype dx. I have to see about that tomorrow.

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  • MC21
    MC21 Member Posts: 12
    edited June 2018

    one more question is oncotype testing a blood test?

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  • MC21
    MC21 Member Posts: 12
    edited June 2018

    I was so confused. I see now oncotype dx is done on a tumor sample. I have to ask if they did that with the first lumpectomy or if they will do it with the second surgery. So I had genetic testing done via blood sample which showed I am not a carrier of the BRCA genes.

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  • Kidogo
    Kidogo Member Posts: 20
    edited July 2018

    This is my diagnosis. Scheduled for first RO consult on July 18. I believe I am stage 1b grade 2. Have heard it’s more aggressive than single type but don’t really know.


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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited July 2018

    Hi there Kidogo. There's some complicated and conflicting science on ILC vs IDC, with my takeway being that ILC is slightly more likely to recur in the opposite breast but also more favorable in some respects. With your stats I'm guessing it won't affect your treatment plan but do ask your RO any questions you've got. For example, you may need only a short course of radiation and no chemo.

    Best wishes and let us know how we can help.

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