Scared, Shocked and Frustrated Newbie

canadianhockeymom
canadianhockeymom Member Posts: 13
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi.  I'm feeling very lost.

I was an active 47 year old mother of 3 kids (19, 17 & 11). Non smoker, non drinker, low BMI. Breast fed... low risk I thought...

Then SURPRISE Routine mammogram found 1 lump (.8mm)  

Then another SURPRISE -Technician who did biopsy found lump #2 (.8mm)

Surgeon performed bilateral mastectomy. Then today SURPRISE pathology is back- - there are a total of 4 LUMPS!!!!

The office faxed me a copy - I have yet to speak with my surgeon.  

Basically- Multifocal ILC Left Breast   4 Tumors 1.1cm, 1cm, 8mm, 6mm. 1 positive node out of 8.  Grade 2. Margins neagtive.  

My husband says think positive - but everytime I do I get another HORRIBLE SURPRISE.   I alternate between tears and denial.  

How do you ladies cope? 


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Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    We are sorry you are here, but glad you found the BCO Community!!! We hope that you find the support, strength and guidance to help you along your path. We are all here for you!
    Warmly, 

    The Mods

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  • gramwe
    gramwe Member Posts: 251
    edited June 2013

    We cope one step at a time. Take it in little pieces. You are in the right place, there's lots of information, support, and big shoulders to lean upon. We are truly sorry you had to join us. We still will walk with you for every step. Right now just take a deep breath, the days get easier. Hugs

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  • liefie
    liefie Member Posts: 2,440
    edited June 2013

    Canadianhockeymom, I also got a nasty shock when my MX path report came. Although there was no indication or no swollen nodes, I had one node positive which then caused me to get chemo as well as rads. All of this played out last year. You live from day to day, sometimes hour to hour just to get through this. As time goes by, it gets easier. Impossibe as it may seem to you now, one does get used to it, and it gets better. It is a temporary stumbling block which will take time out of your life, and it is beter to just resign yourself to that, do what you have to, and come out victorious on the other side. Today my life is back to normal, something I thought would never happen. BIG HUGS and greetings to you from Van Island. 

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited June 2013

    yep i'm with the others ....one step at a time especially in the beginning ... try not to 'jump ahead of yourself' ... i found that once my doctors and i had "the plan" in place i felt better knowing what hoops i'd have to jump through and when they would happen ...

    i had a clean mammo and the first surgery removed over 7 cm and that turned out to be just part of the ILC .... now over 9 years later i'm retired, traveling, gardening, doing crochet and genealogy, hiking and biking .... like mentioned above i started out one shakey step at a time .... and at each phase of this not fun trip check in to bc.org for helpful hints, friendly understanding people to lean on when needed, and friends to cheer you on ....

    best of luck to you and your family

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2013

    Lots of tumors in my breast, too, more than they could count.  It was not something I wanted to hear, that's for sure.  As for coping, I honestly have to say there is no special way to cope that I found.  I learned over time that the sadness and fear that overwhelm at first gradually fade on their own and our ordinarly life takes over again.  It takes time, though.  Oncologists can refer you to someone you can talk to, who can help you through this.  Many oncologists/hospitals keep such counselors on staff because they are familiar with breast cancer and its treatment.  There are meds you could take, too, that help with the anxiety, and a counselor could give you guidance about that.  We have been where you are, and we want to support you.  I'm sorry you are making this journey, but I'm glad you came here.  HUGS!  G.

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  • canadianhockeymom
    canadianhockeymom Member Posts: 13
    edited June 2013

    Thanks to everyone who replied.  Anyone have any info/websites/books/diets/suggestions on reading to understand multifocal ILC?  Doctor google gets scary.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2013

    canadianhockeymom- is your mo ordering the onco test for you?

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2013

    ILC tends to be sneaky and from what we surmise, size of ILC tumor is less important than other features, so hang in there.  Getting cancer is a shock.  It takes time to wade through the information and the acceptance process is slow going.  Give yourself permission to be angry and scared and in denial and aggressive....you will feel it all.  Your husband sounds wonderfully supportive.  Lean on him and include him in the decisions and information.

    Best to you and your family.

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  • Rose_d
    Rose_d Member Posts: 144
    edited June 2013

    Canadianhockeymom,

    So sorry to hear about your diagnosis.  Mine was similar - I was 39 at the time, they found 5 tumors (the largest was 1.7cm).  I had had 1 node biopsied before my bmx which was negative so I was shocked (and devastated) to wake up from surgery hearing that I had 1 positive node.

    After going through surgery, chemo and rads last year I am finally starting to feel 'normal' again.  Back to work, exercising, cute short (curly!) hair and I am slowly but surely thinking a bit less about cancer.  Still working through all of the emotions that go along with this diagnosis but I am in a very different place than I was a year ago.

    As others have said - you will get through this one day at a time.  I remember thinking that everyone else was better equipped to handle cancer than I was - they all seemed sort of at peace with their diagnosis.  I most certainly was not.

    But I also had 3 kids (9,7,5 at the time) and knew that I had no choice but to put my head down and get through it for them.

    I just wanted to let you know that right now it seems impossible and like everyone else is stronger than you are.  But you are just as strong and WILL get through whatever your docs throw at you. It's funny how my definition of 'strong' has changed!

    Rose

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  • canadianhockeymom
    canadianhockeymom Member Posts: 13
    edited June 2013

    Hi Rose D

    My surgeon just told me he thinks we should go back in and do additional axillary surgery.  

    My sentinel node was 4mm and one axillary was less than 2mm.  Before surgery we didn't think any would be positive - after surgery he was confident that there was only one that was iffy looking and it was "incredibly small" (his exact words).  He only took 8 out total.  He thinks since lobular is so sneaky we should take a few more.  Better gone than treating and hoping its gone.

    So day after tomorrow I go back for my second surgery - another drain (sigh) and loss of my range of motion just when it was starting to come back.  But you are right - I will be strong if not for me for my kids.  They need a mother!!

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2013

    Hello canadianhockeymom,  Hope your surgery went well today and that you get good news.  G.

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