Recent ILC diagnosis

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

So May 14th 2012, my mother was diagnosed with ILC. She has been having her mammograms every 6 months as we saw "it coming" for years. With the help of her PREMARIN rx from a hysterectomy 15yrs ago (which increases risk of breast cancer). Some family history of BC. Either way, acting fast... An MRI, ultrasound and biopsy. The mass is HUGE, the biopsy of the lymph nodes didn't show  it had spread. She was scheduled for a radical double mascetomy on MAY 24th 2012 (fast, ehh?). Surgery seemed to have gone well. Then on the day she was to be released from the hospital, the surgeon comes in and says it was in the lymph nodes. (why the biopsy didn't detect it the week before???). They sent her back into surgery that night to remove the lymph nodes. Removed 17! Fast forward to now... The surgeon says that ALL 17 lymph nodes had cancer in them. WTF?!? Currently, mom is in having a catscan and MRI. What I want to know is what is the results of it spreading to ALL of the nodes? Everyone says, "once they determine it hasn't spread to the nodes" nobody seems to say how bad this is, what it means? I know more will be determined after these tests today. I have a hard time talking to my mother about the C WORD, cause I just start bawling... That isn't helping anybody... My mother is my best friend and I have to help find a way to save her. She is a tough broad, and had wanted breast reduction surgery for years due to back problems. (shes 4'9 and WAS a 40DD). I am running out of ways to cheer her up, as it just keeps getting worse. Also what is the best way to treat afterwards? Radiology? I know she initially refused Chemo.. Its not a way to live.. But what else is an option? Sorry for my huge post. Guess I'm also taking notes for myself, as it runs in the family... Any info would be greatly appreciated. Ty 

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  • rakulynda
    rakulynda Member Posts: 286
    edited June 2012

    Worrieddaughterden - this is an especially tough time now for both of you and waiting for test results is the hardest of all. All you can do at this point is wait for test results and if there has been any spread, her dr. will then suggest a plan. Once a plan is in place, it will be easier to move forward because then you will know what will happen next. Wish I could be more help but you don't know anything till those results are in. Your mom is so lucky to have you there whether you're crying or not. She's a mom and understands your fear. How has your mom been feeling lately? Do you know her er/pr her status? Feel free to pm me anytime. I've been living with ILC for 10 years now. Hugs, Lynda

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  • Heyho
    Heyho Member Posts: 23
    edited June 2012

    Hello there, just to say that I had ILC in both sides at the same time, no nodes one side and EVERY node the other, a lot more than your Mum...it was devastating to be told this, I understand where you are right now, and you are still in shock. Just be gentle with yourself and your mother, it may be hard to believe right now but over a little time the news will sink in and settle, a treatment plan will be set up and then you can swing into that. Your Mum will almost certainly be offered chemotherapy and radio therapy. ILC is sneaky and does not show up in some diagnostic tests which is why it is often large before it is found. It does have a tendancy to be estrogen positive, which means she will then be offered hormonal medication to take for at least five years. You mention she is not sure about chemo...please know that it is doable, thousands of women have trodden this path, meds are available to help with side effects. Chemo is a scary concept but it is totally doable. Just tell yourself and your mum that chemo is not the enemy. Cancer is the enemy. Chemo does work, I know, I saw my tumour shrink to almost nothing and then had surgery after that.

     When I was in the place that you are right now, I just remember my breast nurse repeating to me over and over again, "it was there but IT HAS GONE". Surgery is the first step in your mum's treatment plan and could well have cured her by removing all of the cancer. Other treatments are adjuvant - that is, they are to mop up anything else that may be around and then ensure that it stays away.  

    Start by asking what the stage, grade and hormone receptor status is for your Mum. This will help you to begin to absorb where she is now, and understand the treatment plan that will be set up. Yes, it is scary, but you are at the start of a journey that will hopefully kick everything to the curb for once and for all. Just take baby steps right now, thing will settle and as the shock wears off, and treatment begins, you will find the strength to deal with this. So will your mum. Also come back to these boards, there is a wealth of information and some very understanding and supportive women reading and responding to questions and supporting each other.

    Take care, Hey Ho

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  • Sheryl1969
    Sheryl1969 Member Posts: 1
    edited June 2012

    My mom, my BEST friend was dx. April 25th ( worse day of my life )... My Mom and I are both young 42/62. I come from a VERY close family, with one younger sister and 2 nephews 6 & 8, and my niece is 10 and the kids are VERY,VERY close with grandma. We have been very honest and open with the kids, every step of the way.



    Mom had survey on May 10th, and will have her 1st Chemo tx. June 15th, to be HONEST, im scared to death for her.



    I think the scary part is 11 years ago my Aunt( who paased away ) had lung ca, which my mom was there every step of the way, so we are WAY to familiar with what she could go through ..



    Just wondering who is dealing with a Mom with bc, or for that matter, moms with bc and have daughters..



    Sheryl

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