Newly diagnosed ILC

Texas357
Texas357 Member Posts: 1,552
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi all,

I've posted a bit on other threads, but I guess this is my formal introduction. I had my biopsy a couple of days after Hurricane Ike hit our area (the hospital was running on generators). The breast surgeon thought I was in for a lumpectomy/radiation until the MRI found more spots. Luckily same breast!

The biggest problem right now is the "hurry up and wait". It's been four weeks, and I've had one appointment per week: first with the general surgeon, then the MRI, then the PS this last Monday.  Now I'm sitting by the phone waiting for the surgeon to call with the surgery date for the mastectomy and stretcher insertion.

I'm hoping and praying to escape radiation and chemo. I'm not afraid of radiation but I am terrified of the lat surgery for reconstruction that radiation would make necessary. The idea of them taking skin/muscle from my back just makes me want to heave.

I'm in menopause, but due to existing bone density issues, I'm not crazy about the AI option. That's just more research I need to do.

My big questions are how much of a life disruption this will be, and when I'll be able to start putting this behind me. Like so many others, I'm active and I want to stay that way!

Thanks for listening.

Robin

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Comments

  • Little-G
    Little-G Member Posts: 647
    edited October 2008

    Hi Robin,

     I'm sorry you are going thru all of this.  And your big question, is just that.  It's so hard to say.  I was dx in '05 and have never felt the same since.  I don't know that you will ever be able to put it "behind" you, however I do think you will be able to live your life without worrying about it every day.  Right now, I think you need to take it one day at a time.  Don't rush into anything, make sure you understand as much as you can and do what is right for you!  It's stressful for sure, but you will work out a new way of dealing with things.  Once the initial tx is over, things will settle down.  This is a great place to talk to other ladies who do get what you're going thru.  So..welcome!

    g

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  • priz47
    priz47 Member Posts: 470
    edited October 2008

    Are you sure you will need rads or chemo? That is a question for your onc and once you have that answer,you will know what to expect. This is a long process, where one day at a time is the mantra. I was dx in April, had lumpectomy in May, mastectomy with TRAM reconstruction in July and started chemo in Sept. And it feels llike I have been doing all this forever! I know that next year I will be back at work,wishing I had time off to enjoy. But right now, I am just existing, day by day. It gets better once you have a plan. You will feel better when you have a date set for surgery. Good luck!

    D

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  • Firni
    Firni Member Posts: 1,519
    edited October 2008

    Hi Ladies,  I too have been waiting, it seems like forever, to get things going.  My "adventure" began in June with my yearly exam.  Then a series of mammograms, a stereostatic biopsy, more mammograms and an MRI.  Then a meeting with my general surgeon and my plastic surgeon.  I actually got my dx on 9-9-08. ILC, Grade II, ER+/PR+.  Don't know about the rest tho.  Not until the surgery which will finally be 10-29-08.  I'll have a total Mastectomy with recon.  Expander and then implant. Once that is done, I'll find out what treatments I'll need if any.  I was fired from my job 3 weeks before I was diagnosed.  So, I'm along with Robin.  More like this is an inconvenience in my life and I need to have it done with so I can go out and find a job to pay for all these bills!  My PS reminded me that this is not just a little surgery and I would most likely feel like a truck hit me even after days of feeling good.  So, I guess all we can do is hope we recover quickly, don't have too many side effects from treatments and take it one day at a time.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited October 2008

    Firni, I'm also ER+/PR+ Grade II -- small world, huh? I'm hoping that the truck just grazes me, or maybe slows down a bit before it knocks me down. Last year, I was told I'd be out 3-4 weeks with a hysterectomy. I work from home on a computer, thankfully, and I missed one or two days of work total.

    Everyone I talk to knows "someone" or multiple people who have been through this. I find that comforting that so many women are going on with their lives afterward and at the same time a little annoying. They see the "after" but not much of the "during", and probably weren't privvy to much of the "before" when the person felt their world go sideways.

    I'm hoping to get a sx date tomorrow.

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  • Firni
    Firni Member Posts: 1,519
    edited October 2008

    Robin,  I wonder how much depends on our frame of mind and how much we really don't have any control over.  I've always been fast to recover from things. But then I haven't had anything major done or happen to me for about 25 years.  Big difference between 27 and 52 years old.

     Knowing someone who have been thru this is not the same as been thru it.  I feel so blessed to have found this site.  Even tho everyone's story is just a bit different physically, emotionally we're all on the same road.  On the bad days it's good to know you're not alone. 

     I hope your surgery date isn't too far out and your truck is a small one.   

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  • Texas357
    Texas357 Member Posts: 1,552
    edited October 2008

    Well, I had a hysterectomy the month I turned 50, and this cancer was discovered a month after I turned 51. Before then, I'd never had any major health problems. I sometimes joke that I hit 50 and started falling apart.

    I can only trust myself and that I can get through this with my personality, my family and friends, and my career pretty much intact. I'm hoping instead of a truck, I get hit by something like a mini-Cooper.

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