Why is ILC such a mystery?

13»

Comments

  • tt25
    tt25 Member Posts: 3
    edited September 2009

    Hello everyone-I'm 5 yrs out from ILC with a right mastectomy,chemo and radiation. My 7cm tumor was er/pr+. Now have concerns about change in left breast-thickness,tenderness and pain at times.Mammo last week NEG.Awaiting final report on Ultrasound but the Dr's going toward Fibroid tissue in the left breast.I've been in menopause after treatment started 5 yrs ago.Anyone else experience breast fibroids post treatment and post menopausal....Thx

    · Share on FacebookShare on Twitter
  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2009

    tt25 ~  I just had a followup app't. with my BS @ UCLA, and I asked her about this whole issue of ILC not showing up on mammo & u/s, so how can we be comfortable depending on them for future screenings.  Her response was that we will do a mammo & an u/s every 6 mos., and add an MRI 1x/yr.  I also asked her if ILC shows up on PetScans, but didn't get a clear answer.  She told me  that PetScans are not very good at imaging the breast area, so they are not part of regular followup. UCLA does them only if you have a specific complaint or concern -- not as a routine screening tool.   

    So, to get back to your initial question -- if I was in your situation, rather than try to self-diagnois based on what other women have experienced, which may or may not be what you have going on, I think it's entirely reasonable to ask for an MRI, just to be sure and to have complete peace of mind about it.     Deanna

    · Share on FacebookShare on Twitter
  • tt25
    tt25 Member Posts: 3
    edited September 2009

    Thanks dlb for your response- I have an appt with my mastectomy surgeon early next week and if he decides on another Bx, I would rather just have the breast removed. As you probably know the Bx are not fun and I certainly don't won't be repeating them in the future until something (ILC?) shows up...I will try and push for a CAT or MRI of the whole chest to rule out a return of the Ca to the chest wall..From what i'm reading breast fibroids have a high probability for breast ca and I certainly have the history...Thx again

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited September 2009

    tt25,  Just wanted to say congratulations on being 5 years out and thank you for coming here to share that with us.  I have to say that a painful MRI guided biopsy I had on a small place that lit up in my "good" breast was not fun.  I didn't want to repeat that again and again.  After my prophy mast on that side, although there was no cancer, there were enough things going on there that I was glad I had the breast removed.  Now I have two implant boobs and I'm O.K. with that.  Wishing you the very best, whatever you decide to do, may you remain cancer free!  G.

    · Share on FacebookShare on Twitter
  • tt25
    tt25 Member Posts: 3
    edited October 2009

    Thanks G and Congrats on your 4+ yrs out..Good Health to you too..

    · Share on FacebookShare on Twitter
  • derhub
    derhub Member Posts: 2
    edited October 2009

    My mother received the ILC diagnosis yesterday (10/1/09) and is picking out coffins (emotionally.)  We are fortunate to live near a large medical school and teaching institution and have an appointment with a surgical oncologist Monday afternoon with UT Southwestern Simmons Cancer Center.  I am no doctor but I feel extremely positive about the pathology report.  Not saying there could ever be good cancer news but her largest mass is 5mm and is classified as "infiltrating lobular carcinoma, classic type, nuclear grade 1."  I unfortunately have been the google fiend for the last 24 hours and have no clue anymore.  Is smaller better from a prognosis perspective?

    Mom is young (early 60's is young in my book these days!), vibrant and full of life.  I just want to know what to ask, how to help, support and care for her as she has done for us for so many years.  How do we know what questions to ask?  Is the 3rd and 4th opinion worth it?  Go with your gut and a resume to decide?  If treatment options are laid out, how do we question the surgeon or suggest alternatives? 

    · Share on FacebookShare on Twitter
  • ann-idiot
    ann-idiot Member Posts: 128
    edited October 2009

    Anyone out there who wants to be an instant billionaire, all you have to do is come up with a non-invasive way to detect ILC! 10 mammograms showed NOTHING! 

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited October 2009

    Yep.  Seems like it shouldn't be that hard, doesn't it? 

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited October 2009

    You needed to go to the radiologist that I had.  He saw my 1 cm ILC that no one else could find.  Even when I had the ultrasound, it was him that showed the technician how to find it.  He doesn't miss a thing.  I really think that there is a big difference in radiologists.  I have had good ones and bad ones.  Also, MRI's are great for finding ILC.  I had them done on both sides and my insurance paid for the whole thing.

    Good luck,

    Nancy

    · Share on FacebookShare on Twitter

Categories