New, with questions

Momaich
Momaich Member Posts: 11
edited December 2014 in ILC (Invasive Lobular Carcinoma)

Hi all, I am new here. I don't really understand all the jargon, but my diagnosis and treatment so far is in my signature line. Here is my first question. I have a tissue expander and am still taking pain pills to manage the pain associated with that. The oncologist wants to start chemo in 2 weeks. I do not wish to be on pain pills until the chemo and radiation therapies are complete. Has anyone ever weaned themselves from the pain pills while still having a tissue expander in place? I am really not excited about this prospect. I'm taking valium and tramadol with oxycodone. I have weaned myself off the oxycodone so that I only take a half of a pill if I have a flare up the other 2 are not managing.

My other question is, does chemo followed by radiation seem the norm for lobular? I did have a large tumor- 7.5 cm and the oncologist seemed pleased that I was Er/Pr + and HER2 -. I want to get a second opinion, but I am not feeling so energetic and I just want to be getting done, plus the oncologist I saw yesterday likes to start chemo 4-6 weeks after surgery which is where I am.

Thanks for any comments.

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Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2014

    Dear Momaich, Welcome to the BCO community. We are sorry that your diagnosis and subsequent treatment has brought you here but we are glad that you reached out to us. Just a note that your diagnosis and treatment does not show up in your signature line on a first post ( it is a glitch in our system). Future postings will carry that information. While you are waiting for some responses you may also want to visit this page on our site about pain associated with tissues expanders. You also may want to post those questions in one of the threads on the Breast Reconstruction forum. Keep us posted. The Mods

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  • Momaich
    Momaich Member Posts: 11
    edited November 2014

    Thank you.

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  • JSwan
    JSwan Member Posts: 81
    edited November 2014

    Not all ILCers do chemo. I didn't. I got conflicting advice from my doctors and decided to skip chemo. I'm happy with my choice but everyone's situation is different. A second opinion wouldn't hurt.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2014

    Hi

    did you have the oncotype test done? that could really help in your decision making about chemo--because if you don't have to have it, you definitely want to know that. I know you must be exhausted, but try to get that second opinion and the oncotype test. It will really give you piece of mind later.


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  • Momaich
    Momaich Member Posts: 11
    edited November 2014

    Thank you for that suggestion about the oncotype test. When I looked it up on this website it only referred to ductal cancer. I will surely ask the doctor about it.

    Second article I found says this testing is for post menopausal women and I am pre.

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  • Lojo
    Lojo Member Posts: 303
    edited November 2014

    Your tumor might be too big for the official guidelines for the Oncotype test in terms of what insurance will cover. Mine was more than 4cm (insurance limit) but less than 5cm (what the studies had validated), and my doc was able to convince Blue Cross to cover it.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    On our main site we have a number of articles re the Oncotype DX Test hat tmay be of interest.

    The Mods

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2014

    Hi

    your menopausal status does not matter with the oncotype-- I was pre-menopausal when I had it.... and I don't think ILC or IDC matters either-but I am sure your onc can help you.

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  • Smadrn
    Smadrn Member Posts: 1
    edited December 2014

    Newly diagnosed....crazy story had a breast reduction and ps sent routinely for pathology called me two nights ago positive for invasive lobular carcinoma with others areas in situ...my head is spinning for sure...saw breast surgeon yesterday plan is for double mastectomy in January...last thing I expected at 43....I feel lucky it's stage 1 and thoughts right now are no chemo or radiation...such a shick

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  • MrsDarcy
    MrsDarcy Member Posts: 162
    edited December 2014

    I had the oncotype done and I am pre-meno



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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Smadrn, we're sorry you have to be here, but welcome! We hope you find this a warm and supportive place to find information and support.

    Related to your treatment plan, we recommend you to take a look at the section about Mastectomy, where you can learn more on what to expect during and after surgery. We hope this helps!

    Let us know how you're doing.

    Best

    The Mods

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  • Annette_U
    Annette_U Member Posts: 111
    edited December 2014

    Lojo, did you have the oncotype test? do you mind sharing your results. I did not but had the KI-67 which was high . Since we had similar outcomes , I wonder what mine could have been. Momaich - I opted for chemo, rads and mastectomy for my large tumor.

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  • erinm216
    erinm216 Member Posts: 126
    edited December 2014

    I didn't have to do chemo either. My Oncotype was scored at an 8 (if I remember). I had the option of radiation or matecomy and I chose the later.

    I also never took meds for the expanders after the first two days. I was shocked when a friend of mine said she took meds the whole time. They hurt that is for sure but not enough to be drugged for the duration of their stay :)

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  • erinm216
    erinm216 Member Posts: 126
    edited December 2014

    I didn't have to do chemo either. My Oncotype was scored at an 8 (if I remember). I had the option of radiation or matecomy and I chose the later.

    I also never took meds for the expanders after the first two days. I was shocked when a friend of mine said she took meds the whole time. They hurt that is for sure but not enough to be drugged for the duration of their stay :)

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  • jj50
    jj50 Member Posts: 6
    edited December 2014

    Hi Momaich,

    I was where you are now 2 years ago, although my tumour was 11cm and I had 2 positive nodes. I had surgery then axillary clearance one month later, followed by 6 months chemo ACT then 8 weeks radiation. It was a very long road and was not easy at times but you will get thru it. you will feel better once the treatment ends but it will be slow so allow yourself plenty of time for rest. feel free to pm me at any time if you have any more questions.

    Hope all goes well for you

    JJ

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