Anyone with ILC????

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MamaM
MamaM Member Posts: 80
edited January 2015 in Just Diagnosed

Looking for those of you diagnosed with ILC???  I have my masectomy on the 17th of November & I would love to hear some good advice from those of you that have ILC, too.  I have 3 children ages 19, 16 & 10.  I'm 41 years old.  Would really love to hear from some of you that have been down this road before or are just starting out like I am.  

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

    Hi MamaDarrling,

    We're sorry to hear of your diagnosis! But, you've come to the right community -- our boards have many members diagnosed with ILC and you can connect with them on the ILC (Invasive Lobular Carcinoma) forum.

    We hope this helps!

    --The Mods

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

    Hi

    definitely go over to the ILC board...

    I was dx 6 years ago today-- had a 12 & 7 year old daughters--- never was more terrified in my life.  Had a great medical team-- had a lumpectomy, chemo and radiation-did 5 years of bc drugs and am now feeling fabulous and don't really think about bc too much--- mostly in the abstract.  I have a mammogram every year and now an MRI every other year.... 

    I think once you have the surgery, you will feel like you can breathe--I remember just wanting to get the lump OUT!!!   Once that happened, I had time to heal, and wait for results that  helped me make the rest of my treatment plan.  

    Things that helped me--I kept exercising, journaling and showing up at work every day---there was a significant time between my surgery (11/25 ) and the beginning of my treatment (1/16) because of oncotyope testing and delays related to the Thanksgiving, Christmas and New Year's holidays--- just know that could happen---- take deep breaths.... I also used ativan when I needed it---- which was not often but boy it was great to have it handy.... 

    I am sure others who had a mx will be along and can advise you on the surgery and the recovery.   

    Be well...

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  • Mischief46
    Mischief46 Member Posts: 217
    edited October 2014

    HI!  I was dx in April of this year.  My BMX was in May.   I will try and answer any questions you have if I can.  I don't even know where to start as far as good advise.  :-)  It sounds like you have a plan in place and that usually makes it a little easier to take in.  It is the unknowing that is so hard.  There are plenty of us on here and plenty of great threads to get great info on almost anything, you have definitely come to the right spot. 

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  • funnthesun68
    funnthesun68 Member Posts: 41
    edited November 2014

    Hi we spoke one other time when you first were diagnosed. I have a similar diagnosis. I had my masectomy October 20 and I am 4 wks post op. I am doing alot better than I was 4 wks ago. Just got my oncoltype DX results which was a 20. Dr said no chemo just tamoxifen. Masectomy was not fun. I slept in a reclinder for 3 wks. Make sure you do the exercises that you are to do. They will help! I am in process of changing my eating habits. I am reading a book called Radical Remission, good book, helping me change alot about myself. I have kids 18 yrs and 14 yrs boys. I am determined to do whatever I can to beat this cancer. Where did you have your surgery, your from PA as am I. I went to Pittsburgh. I hope you are recovering well. I have chest expanders in, have had two cc injections so far, the first one at surgery and the first one was 20 cc in each breast. It didn't hurt at all, but I will be anxious to se what they do next week. Hang in there. Gets better each day!

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited November 2014

    Hi all, Got Dx of ILC on 11/21. Have an appointment Monfay with BS and PS at Hopkins in Baltimore. I live in South Central PA so happy to have 2 great choices Hopkins and Mercy.


    One doc said with ILC there is more chance of getting it in the other side. Another said not true. Any thoughts on this???

    I'm asking for bilateral mastectiny so I have it one and done. At this point in my life it's what I need mentally more than cosmetically

    Am 61 with 2 adult daughters. Am worried about how my 93 year old Dad will take this so for now not telling him as he lives in the Midwwet

    Waiting is so hard as I have a physiy demanding job doing exercise with babies with developmental delays. Being in limbo wondering do I take off 3 weeks , will I go for reconstruction and take extended leave, how long will it take to get back post op results to know if I need chemo.... Taking one day at a time.

    My friend said BC was the best thing that happeded to her. She slowed down from the rat race, savors life eats well now, is in better shape. I'm trying to be hopeful this will be part of my story too.


    So glad you are all there for us!



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  • Stacie13
    Stacie13 Member Posts: 19
    edited January 2015

    I am 44 yrs old and was diagnosed with ILC 10/29/14. I had a left side mastectomy on 11/25/14 with the beginning of reconstructive surgery at the same time. I met with my oncologist last week for oncotype results and treatment. Oncotype low, so treatment will be 10 yrs on tamoxifen with close monitoring. Recovery for me has been awful. Extreme pain, electric shock type pain in my arm and pec that would wake me at night and bring me to my knees when awake. Much better at 4 weeks when the drain was removed. Now because of limited moment for 4 weeks I have frozen shoulder and need PT. I still have numbness in my pec and incision, along with my armpit and back of my arm, I am hoping feeling comes back, even if just a little

    I have been on this BC journey for a short time and still have tremendous guilt, sadness, fear and depression. People tell me to be happy, that I am a survivor. Really? Am I? At what point is one considered a BC fighter or survivor. I know this may sound silly, but I really don't know. I don't feel like a survivor, its just been 2 month. And does it matter??

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited January 2015

    Stacie there's another thread "what was I stronger during treatment...." That is discussing how this is hard to get through. I think you might want yo join in and share there. If you go back a day there were some very eloquent replies. I feel the same way. Fighter vs survivor?!?!

    All the best! Susan

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  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2015

    I have both idc and ILC for 3 years now doing well after mastectomy and diep . I had trouble with hormone therapy.

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  • chemgeek
    chemgeek Member Posts: 2
    edited January 2015

    Hi ladies -

    This is my first discussion post. I'm 48 with two kids (5th and 8th grade) and was diagnosed with ILC just before Christmas. I have been squeezing in doctor appts and tests around all the holiday celebrations, and will be headed for a mastectomy sometime soon.

    Mama and all the amazing ladies who've posted - thank you for creating this thread and sharing your experiences. All the information here is helping to keep me informed, hopeful and positive as my family and I embark on this unsettling journey.

    Blessings,

    CG


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  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2015

    my kids are 22 and 19 years old 2 boys I love them so much.

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