new diagnosis

prv
prv Member Posts: 22
edited June 2014 in ILC (Invasive Lobular Carcinoma)

i am 55 yo newly dx of invasive lobular ca. have had bilateral mastectomies with two positive nodes. i am awaiting scans to rule out meds (very scared). will met with oncologist and likely begin chemo next week - a/c 4 doses (1 every other week) followed by taxol and likely radiation to axillary area. would like to hear from survivors with similar findings. would also like your prayers. thanks.

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  • Seabee
    Seabee Member Posts: 557
    edited June 2009

    prv--What is your grade and Her2 status? If you have no mets and the tumor is Her2 negative and Grade 1 or 2,  you might consider taking the Oncotype DX test before starting chemo, particularly ddAC+T. If there is a history of heart disease in your family, you might also want to consider a chemo regimen which doesn't involve Adriamycin. The Oncotype test can help you determine which treatment is best.

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  • HensonChi
    HensonChi Member Posts: 357
    edited June 2009

    Hi,

    I am also stage 2B ILC with 1 lymph node.  My tumor was ER+/PR+ and HER+.  I had TCH as chemo...I just finished my year of herceptin last week.  I am also on Femara.  Not feeling like myself yet but hoping to be feeling better the longer away from the Herceptin that I am.  I am about 1 1/2 year out.   

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2009

    prv ~  So sorry you're here, but glad you've found us, and hope we can give you some reassurance and support.

    Like Seabee, I would question not only the Adriamycin due to its known association with possible heart damage, but also the fact that you're slated for a dense dose (every 2 wks.).  The more common dose is every 3 weeks.  AC was recommended for me by a local oncologist.  But when I got a 2nd opinion at the breast center of a major university teaching hospital, that oncologist explained that there is a newer chemo regimen for bc that many oncs are switching to due to the heart issue -- TC (Taxotere & Cytoxin).  You might want to ask your current onc about it, and/or get a 2nd opinion -- just to be sure that you're getting the most aggressive tx you need, but not any more potential SEs than absolutely necessary. 

    Do you have a scan scheduled?  I will be praying that it's totally clear, but if you let us know when it is, I'd like to pray for you when you're having it too.    Deanna

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2009

    I also have Stage IIb lobular breast cancer, diagnosed at 57 years old and had dose dense AC. I know others are talking about the advantages of TC, but I'm glad I got AC.  Hope your PET scan shows no mets.  Please keep in touch.  My fingers will be crossed for good news.

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  • Survivor07
    Survivor07 Member Posts: 71
    edited June 2009

    I started on Adriamycin (and something else) as soon as I was diagnosed--even before surgery.  My mass was so big (12 x 8 cm) that the doctors needed to "kick it's butt"  and it did!  After the 3rd treatment, the mass had shrunk to half the size.  Granted I was extremely sick...but I think it was well worth it.  I have routine Muga scans to check the heart...so far so good. BTW--I'm ER+ and Her2+.  Followed Adriamycin with Taxol and am now on my yearly (every 3 weeks) Herceptin.  (Mastectomy was May 11th).  After radiation, I start my Fermara.  Doc says that's better for Her2+ women who had postivie nodes (I had 3 positive). 

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