10 x 10 ?? and not responding to FEC

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slinky1
slinky1 Member Posts: 12
edited June 2014 in IDC (Invasive Ductal Carcinoma)

hi ladies

my friend has IDC Lymph nodes involvement too. she has had 4 cycles of FEC and today was the last one before is due to be rescanned on the 1st of dec and start 4 cycles of taxodere. but when she went today she mentioned to chemo nurse that her breast felt like it was getting harder again so she called the consultant that was there at the time who examined her and read through her notes and said she thought that she wasnt responding the was she should be. so she has book her in to see a onc tomorrow which is good but she also mentioned that they might remove her breast first and then carry on with chemo after  but that worrys me because they say the need clean margins  and she saw the notes which said the tumor was 10 x 10 x 5 ??? doesnt make sense a they originally told her it was 6 cms and she was only scanned at the beginning of treatment and hasnt been rescanned yet. the oncologist would tell me last time when i asked the size. has a simalar thing happened to any of you ladies. ill be gratefull for any advice many thanks xxxxxxxxx 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2011

    Let me see if I can help at all.

    At this point, the medical folks are guessing as to the size of the tumor. Until the surgery, there is no way to know with absolute certainty how big and/or small the growth actually is. Since the decision was made to do adjuvent chemo [i.e. before surgery], one must assume that her tumor is large and/or might be in an awkward location. The fact that she has had any scans at all does mean that the team is concerned. Standard protocol in the States doesn't always include any scanning.

    However, if a tumor fails to respond to treatment, I can imagine the team might want to do the surgery so that they can do a full pathology report.

    However, some of your statements have me concerned. Why doesn't she have a copy of her biopsy report? All her appointment notes? Why is any information being withheld?

    You don't state where your friend is being treated or where in the world you are which makes it a bit hard to understand your concerns. If you are in Bella Russe, treatment options might be different than if you live within an hour of New York City. Actually, where your friend lives.

    With some more information, people might be able to help you more effectively.

    *susan* 

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  • slinky1
    slinky1 Member Posts: 12
    edited November 2011

    hi susan

    we are from london england so yes i think that treatment differs slightly and the way the docs do things. we are not allowed copys of notes we can request to read them but they dont give you a copy.

    We are going to see the oncologist today so i have a huge list of questions for him and im not leaving until hes answers them. i think they are keeping her in the dark a bit and there is not support. she just has to turn up every 3 weeks for chemo !! if she hadnt of mentioned this yesterday who knows how long before any one picked it up !

    thank you very much for replying i just hope its good news today xxxxxx

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  • Daysie
    Daysie Member Posts: 9
    edited November 2011

    Hi Slinky

    I am also in England and have large tumour when I was diagnosed the surgeon said it was a largeish one - I asked where it was and how large, he said "it's all behind and around the nipple, about 8-10cm in circumference.  I felt the damn thing growing every day, I know my own boob!!

    Like your friend, I wasn't given much information, only that they wanted to do chemo first FEC-T and then mastectomy then rads then reconstruction.  I had the sentinal lymph node removed and one other node, all scans and nodes were clear.

    I started FEC chemo last Friday (18 Nov) my boob now feels like there is an implant in it.  Very tight, very pink and swollen.  I have convinced myself that the FEC isn't working, i saw my doctor this morning and he said there is no infection, it may be just a reaction from the chemo with tumour flare.

    I've just got to run with it and hope it settles down, I was hoping for the boob to reduce in size after chemo but I can feel largeish lumps popping up all over the place, it's a nightmare!

    Daysie x

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