Worried and puzzled about ILC

brigittep
brigittep Member Posts: 1
edited June 2014 in ILC (Invasive Lobular Carcinoma)

In April while having my regular yearly check up, my GP discovered a lump in my left breast and sent me to have a biopsy. I was diagnosed with ILC, in stage 2. I was then sent to a breast doctor who recommended I had chemo.  The oncologist decided that I did not need Chemo, but did give a prescription for Lotrozol. End of MAY I returned to see my Breast doctor who recommended I had Radiation.  The oncologist decided that the radiation should come after the operation.  After going back and forth for 5 months, I finally had the lumpectomy removed.  The test showed that the cancer had not spread to the lymph node, but there were still some cancer left.  A week later I went back for another operation, the results show that there is still some cancer left behind.  My doctor recommend that I stay on the lotrozol and start getting radiation and not have another operation, saying that whether we go back and either do a mastectomy or lumpectomy it will not improve my survival rate.  I am looking for someone to re-assure me that this approach is OK

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Comments

  • toomuch
    toomuch Member Posts: 901
    edited September 2013

    The treatment for BC is always evolving. A hot topic right now is what constitutes a negative margin after surgery. From what I've read a clean margin of 1mm does not have a higher incidence of local recurrance then a margin of 2 or 3mm, as long as the patient has radiation. I've never heard of accepting a dirty margin or tumor along the edge of the speciman. I think that it would be a good idea for you to find out exactly what the pathology shows. Is it a dirty margin or a small margin. Then armed with your pathology report, I would recommend getting an opinion from another medical oncologist.

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  • Neelie2
    Neelie2 Member Posts: 4
    edited September 2013

    Diagnosed on 9/11, the day before my Birthday, with ILC high grade 2, and extensive LCIS (which also has a bunch of big words after it), also ER & PR possitive, HER-2/neu pending. Whatever all this means.  I've had 4 ultha sounds, 2 mamagrams, a biopsy, MRI and surgery to remove large tumor.  Have another surgery to remove lymph nodes on Monday.  Had Mamagram in March, but lump didn't show, I understand that is not uncommon with ILC.  My 6 lb. Pom found my tumor.  I had always heard that cancer didn't hurt, so I thought it was a cyst, It really hurt bad.  My surgeon was surprised, when she got the biopsy resusts and when she got the tumor pathology report. If she was surprised, You can imagine how I felt.  I went by myself because I was possitive it was nothing to worried about.  I don't really worry anyway, I put everything in GOD's hands.  It has been a surprise though.  Next they will find out what stage I'm in, then off to the oncologist.  So that's where I am, kind of in a daze.  When I talk about it I feel like I'm talking about someone else.  I am not in any of the high risk catagories.  No one in my family has ever had it, never taken any hormones. I know I will feel a little better when I get all the results and get started with my treatment.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2013

    bridgett---my mom had ILC many years ago (stage 2 with negative nodes)---had lumpectomy, radiation and took tamoxifen for 5 years; no recurrences in almost 27 years, still going strong at 84 years old!

    Anne

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited September 2013

    bridgett....I'm not an expert, but I can't imagine a radiology oncologist recommending radiation when your margins are positive (dirty)  You should have a breast surgeon, radiation oncologist and a medical oncologist managing your care, each with their own responsibilities.  Just seems to me that you need to see another oncologist.  An oncologist would never decide about chemo/no chemo before surgery, unless you have some other medical condition that would make chemo life threatening. 

      If your tumor is small and they don't need to shrink it before surgery, your treatment should be in the following order.....surgery, including removal of the tumor and lymph node(s), then your cancer will be staged based on the pathology.  The pathology will identify if you have clean margins and if not, you will need more surgery, perhaps even a mastectomy if the surgeon cannot remove all the cancer.   If you qualify, you should also have the Oncotype DX test which will provide more information about how responsive your cancer is to chemotherapy.  Then you can make the decision about chemo/no chemo and if no chemo, you would start antihormonals if you are ER/ER positive.  If you you have chemo, radiation will be after chemo.  Radiation is almost always given after a lumpectomy and sometimes with mastectomy, depending on the location of the cancer and node status.

    I hope this is not too confusing and that you are able to have more confidence in your medical care.

    Sandra

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