Any ILC long term survivors with really large tumor ?

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  • Margaret77
    Margaret77 Member Posts: 8
    edited January 2014

    Woodyb, and Lisa137 good luck to you also

    God Bless

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  • mary625
    mary625 Member Posts: 1,056
    edited January 2014

    I found out that the woman next to me in PIlates is a 14 year ILC Stage III survivor.  Music to my ears.  

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited February 2014

    thank you ladies for your encouragement it lifted me up. Ilc is very tricky, it doesn't always show on mammograms unless it is a large mass , however it may show on MRIs specially on lymph nodes.  Thie thing about Ilc is that it loves lymphs and usually it is always with vascular invasion and it goes undetected  . It is a slow growing disease usually but heavy on invasion. But a lot of people after the first treatment live a long time. The lymph nodes number are the down side. So good luck to you all, and live your life normally and enjoy it after treatment because it really goes back to normal with minimal side effects. Wish you all a long long life. And thank you again for your support. Even with stage four i am still very optimistic as there are a lot of treatments available. The important thing is to know your body and report to the doctor anything unusual. Big hugs to all of you.

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited February 2014

    thank you , god bless you too , i am praying for a miracle...

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  • macb
    macb Member Posts: 15
    edited March 2014

    Thanks for saying that. I especially liked the bit about the rainbow farts. I too don't want any more diagnostic stuff. I AM DONE with the whole shittin mess. This shocks people. EVERYONE insists I get mammograms. I very patiently explain that I had  6 of them that all showed I was fine, no cancer , go on home. People can not believe that mammograms can be that USELESS.  Instead it is easier for them to blame me for my getting C. They all find it easier to assume I never did breast self exam and that I never went in for my mammograms like I was supposed to. That makes me so angry. I never preach at other people, but so many, many people feel entitiled to lecturing me, in disapproving tone, about my attitude. They want to make sure I really understand that I can die a horrible C death. Yeah, well I get it. I just want to be left alone to enjoy what I can of my life.

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  • macb
    macb Member Posts: 15
    edited March 2014

    I am pulling for you. I do a lot of alternative stuff because I can not bear the thought of trying anymore of their "treatment" The a new plastic surgeon asked me ;what I am doing for c surveillance in my real R breast. She was so shocked that I said nothing. I explained about my 6 useless mammograms and my MRI underestimating the size by over 50%. The MRI said it was 5cm and it was actually 11 x 9cm.  The Brava reconstruction worked (I have a left breast mound that is about a c cup just made from my fat) but now I am going to have a short vertical scar breast lift of my real R side to be less lopsided. I have had 6 surgeries, 3 of them fat grafting with Brava since the first butchery. Then 6 months after the lift I will have a nipple made. Then I intend to completely diappear off the medical radar. Ironically I am a Nurse Practitioner, but I want nothing to do with anymore doctors when I am done.

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  • kickin-cancersbutt-2014
    kickin-cancersbutt-2014 Member Posts: 25
    edited April 2014

    OK  my turn to weigh in.  Mine was found coming out of the shower, just looked "weird" dimpled and nipple inversion, so mammo was performed and positive (previous mammo 2 years prior no findings).  At mastectomy (left) 7cms lobular mass Stage IIIa with 3/22 nodes positive.  I would have to say that I would not rely on mammo alone and one day it may not show what is lurking, but what I saw with my own two eyes I just knew it was for real.  But you have to stay positive and live your life to the fullest, as we all know it can be cut short.  I am very strong, and have not even shed a tear over it.  It is what it is and my job is to fight it.  So do not waste a moment thinking about what might not be and go out and live each day you have with the endurance to go ALL THE WAY!!!  I just had a Power-port placed yesterday which hurt like a B!!!  I start Chemo Monday and ready to beat this!!! 

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited April 2014

    Kickin!  You sound ready to kick ass and take names!  Good luck Monday!  With that attitude you are gonna sail thru this chit in no time!  Good for you!

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  • ductal
    ductal Member Posts: 65
    edited April 2014

    hang tough, you are obviously fierce.  i was diagnosed 2009 and had 30 of 31 positive nodes.  i had all the treatments, broken bones, falls infections, etc. i am ambulatory, tumor markers stable, stage 4 for 2 years now...tumor in armpit size of grapefruit, the surprise 2nd tumor.  this is the time to forget vanity, get prosthetic v

    bra etc, use energy to laugh everyday.  if you change your thinking your feelings and behavior will follow.  you have cancer you are not cancer..  they admitted to finding my caner years too late. oh, i also got an abscess across my gut that took a year to heal, with wound vac attached dec to july, family advised i may not survive the emergencies, etc.  my girl is my angel and i will never give up. hope you are feeling better.

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  • Julietarn5
    Julietarn5 Member Posts: 1
    edited August 2016

    Hello CK55,

    I am very new to this blog and was recently diagnosed with ILC, last week. I had a mammogram, ultrasound and biopsy. At first the surgeon said it was a good prognosis as I have a low grade 1, ER+\PR+, slow growing at 5%, HER2- and said she recommended a lumpectomy with a few nodes dissection. The surgey would be out patient and a quicker recovery. Also said hormone therapy but if nodes were negative probably no radiation. But after the MRI with contrast she called me yesterday and informed me that the tumor is 9cm in size and spread out to my right breast. She said the MRI showed some nodules on left as well. Now is recommending a right breast mastectomy and ultrasound with possible biopsy to my left breast. I was in shock and couldn't think of anything I needed to ask before she hung up the phone. Now I am left bewildered and confused. I didn't think I would be getting a mastectomy and the more I read the more I feel I need to talk to someone who has been in my shoes. Can you give an idea of what you went through as hat I options you choose? I am 46 yrs old still having regular menses. I am also curious of the reconstruction you chose. Any advise from you would appreciated. Thank you

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  • Sularyan
    Sularyan Member Posts: 7
    edited February 2020

    God bless you.

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