What should I ask?

Kalb
Kalb Member Posts: 2
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi, I have been diagnosed with ILC on Friday. I have been told that I found it early. I am booked in for lumpectomy and lymph node surgery on 16th Dec. I know nothing. I'm scared. I don't know what stage/ grade it is. What is Her ? Consultant said that I will have radiotherapy maybe chemo depending on results. I don't know if ER or PR, is that something found out after Surgery? Am in complete fog.

Please can any one explain any of these questions and tell me what questions should I be asking?

Kalb

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2009

    Hi Kalb

    After your surgery they will send your tissue to a lab to find out size, type, , grade and if it has spread. You will be hoping for whats called clear margins, meaning they got all of it with the surgery. Based on the findings you will then better be able to know what kind of treatment will work best for you. ER/PR means that the tumor has hormone receptors on it, meaning it feeds on estogen. There are meds to help with that. Early detection is a very positive thing. I know it is very frightening, but hang in there. Once you have some answers you will be abel to make a plan that works for you.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited November 2009

    Kalb,

    I'm sorry for your diagnosis but I'm glad you found us. 

    I was scared when I walked out of the surgeons office after hearing my biopsy results.  It is a very hard time but it does get better.  You have already heard good news that they found it early.  Too often the ILC doesn't get discovered until the tumor has gotten large.  So it sounds like you have a good medical team.

    You mentioned a consultant.  Does this person guide you through the process for appointments?  If they are knowledgable about your diagnosis they may be able to suggest questions for you to ask.

    Be careful of the sites you visit -- keep them reputable such as American Cancer Society, Susan G. Komem or National Cancer Institue so you know that you are getting good information.  ACS and the Komem site have some suggested questions for you to ask your provider.

    If possible, I would recommend bring someone else with you to your appointments.  Just like most of us, you are in a fog and it can be very hard to remember what the doc said after you walk out of the office.  For me, it was my husband who was there.  I also went right out and bought a notebook so I could start writing down my questions.  During my visit with the onc he was very understanding so he would pause to let me jot down notes. 

    How did your cancer get discovered?  Have you already had a biopsy?

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2009

    You also want to ask about nutrition and what to avoid.

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  • Kalb
    Kalb Member Posts: 2
    edited November 2009

    Hi, thankyou for your replies, it means alot to know there are people out there who can offer help. I had biopsy of breast and lymph node. The lymph node they tested was clear but they still want to check others. Am due to have wide local excision of lump and removal of axillary lymph nodes. Just wondering if anyone has had sentinel node biopsy before the op to find out if lymph op is needed, as at the moment i am told i will have to have some or all lymph nodes removed without any knowledge of them being affected. I'm in England so I don't know how our treatment is different to yours. Am frantically trying to gather as much info as my poor brain will take before i make decisions.

    Kalb

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2009

    kalb,

    ask for the oncotypedx test to help you decide about chemo.... do they do the sentinel node biopsy during your surgery?  try to have them takeout as few lymph  nodes as possible.  

    I took a digital voice recorder to every meeting-- helped a great deal...

    they did my sentinel node biopsy at the same time as the lumpectomy-- sent it off to the lab while I was right there on the table-it came back negative, so she did not take any more nodes--just took out the lump---- Not sure why, if you already have a clear node, they would need to take out more--do a little research here on the lymphadema section-those women will have good advice.

    You will get stage/grade after the surgery and they do the pathology.  early is good--- ILC tends to grow slowly--- so you are likely in a good position.  Once you have a plan, it will be much easier--I promise.  feel free to pm with any questions.

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