Invasive lobular carcoioma

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Jackiebergman
Jackiebergman Member Posts: 1
edited November 2015 in Just Diagnosed

I was just told last week I have stage 3 1b. Invasive lobular carcoioma. I am so scared I can't think straight. I spoke to my oncologist and told me that she feels that it has not spread past my lymph nodes, but yes they are present there. I get a port Wednesday and hopefully start chemo following. I am just necrosis and really don't know what to start thinking any advice would be great


Thank uou

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2015

    Jackie,

    So sorry.......you look young. It's all a nightmare, in my opinion. My lobular was in the nodes & growing on the outside of the nodes. ( extranodal extension ).

    Are you having chemo before surgery?

    A good percentage of us get A/C & then Taxol. I had my chemo infusions every 2 weeks, described as dose dense. Dealing with the dx & treatment is stressful. I took a medical leave from work & then retired. I could of returned to my previous employment, but chose not too. Many ladies work through chemo. I could not.

    My coping stragety was "one day at a time". So overwhelming to think about 4-6 months of chemo and then 33 days of radiation.

    I was tough as nails, my suffer in silence mantra exploded after chemo during rads. If you are having anxiety, ask for meds. They really help. Keep reading here. Ask ?, rant & whine if you need too, we all get it.

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited October 2015

    I was diagnosed with ILC in September. Mine is a multifocal cancer so mastectomy was my only surgical option. Surgeon removed 4 nodes during the Sentinal Node Biopsy. One has come back positive for cancer. Seems I have a long treatment road ahead but it does get a little less daunting. I agree with Holeinone; get something to help you sleep. That made a huge difference to how I coped. It's all so overwhelming. Hugs.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    You're my new BFF. I just got diagnosed with the same thing two week-ish ago.

    I don't live in Houston, but I work there, will be treated there, my sister lives there, and I'm on my way there today. Are you getting treated at MD Anderson? PM me. I would love to have someone to talk to and go through this with.

    **Huge hugs**

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  • msphil
    msphil Member Posts: 1,536
    edited October 2015

    hey sweetie we r here for u and know that we know ur feelin i too took leave from work and returned to work for awhile then retired we here are family united by this dreaded disease keep Hope i am now a 21yr Survivor(Praise God)

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited October 2015

    I am a 14 month survivor of 2b ILC, with no node involvement.  I had a BMX in August 2014 with no reconstruction.  I started chemo 3 weeks after surgery and had 4 rounds of TC and then on to 33 radiation treatments.  I did manage to work during chemo without missing any work, except for infusion day.  Listen to your body and if you have any problems, call your doctor.  Keep us informed.  Hugs to you ladies just starting out.  You will come out on the other side a different person,  but at least you will come out.

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  • Frill
    Frill Member Posts: 311
    edited October 2015

    Just checking in - hoping everything is ok as it can be.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited November 2015

    Hi Jackie

    I don't know how I missed your post.... Please let us know how you are doing. I was diagnosed ILC Stage 3A in July 2015. I've finished chemo and will have a BMX on DEC 7th, then radiation and finish a year of Herceptin in July. That sounds like a lot, and it is, but one day at a time, one step at a time, sometimes one minute at a time. All of these protocols differ depending on the size and grade of your tumor, also, your MO...

    The best advice for chemo is to hydrate, eat what you can and rest, rest, rest as much as you can. Ask for help, this was hard for me!!!

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