IBC treatment

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kellly
kellly Member Posts: 2
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello,

 I have a question about treatment I recieved here in Europe in comparison to what you girls in the US get.

Im 35 years old and was diagnosed with triple negative IBC in march 2008 (so was 34 at the time)

I underwent 4 pre operative FEC and because of poor response then switched to 4 taxol. After 2 taxol, breastsize started to increase again (so no response at all) so stopped chemo and had immediate modified radical mastectomy. Pathology report was dissapointing; 3 out of 9 lymphnodes were positive and complete breast showed presence of tumortissue, though outer edges -3mm- were clean, (thank god). Underwent 23 radiations of 2 gray to breast/chest wall (with bolus), supraclavicular and axilla area.

Now im wondering if ive had enough chemo, since i only had a partial, dissapointing response to FEC and no response to taxol.Not that im such a chemo fan, well you knowWink

I also heard about bloodtests which can be done to determine which chemo would response best. Dontknow if that is still an option though.

Anyway, i feel that treatment is more conservative here.

I m also thinking of going to MD anderson for a 2nd opinion, but its a long and very expensive trip offcourse. 

Any thoughts or advise would be very much appreciated, Thanks!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    I don't know where in Europe you are, but if it is England, you might see if there is anyway you could get in touch with a Dr Stephanie Sutherland, a Clinical Fellow at Royal Marsden Hospital. In Dec 08, she was a presenter at the MD Anderson International Conference on IBC. She knows and would have contacts with the IBC Clinic at MD Anderson and might be able to help you or be able to discuss your case with them. I don't know how your Medical system works, so I don't know it this is doable or not.

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  • ebann
    ebann Member Posts: 3,026
    edited February 2009

    Hi there,

    I am a triple neg and was dx in April with IBC. I have been doing chemo for a year. I have done Taxotere/Cisplatin, Adirimycin(Red Devil)/Cytoxan and Taxol/Carboplatin so far. My first attempt with chemo did not shrink my turmor or the second but it did stop it from growing at an agressive rate. I did have a mastectomy and they found 3/14 nodes and cancer along the chest wall. So I had to repeat chemo. My tumor was 12.5 cm. I can see that a trip here would be very costly. I think that Moodyk13 has a great suggestion. I really do not have any advice for you, but have been there with you.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    I sorry but my advice is save the money from MDA.  They're are not going to tell you a whole lot with early disease.  I would get 2nd opinion in your area.  I'm sure another oncology would be willing to give you another round of chemo if they felt it was beneficial.  I word that I learned from MDA and other clinic's...if they can see cancer right now through scans or blood work treating it with chemo is not going to help.  It has to be detectable for the chemo to find it. Your first round of treatment is looked at differently because they know you had disease.  After that insurance and doctor's start setting back and waiting to see what happens.

    Are you welling to stay in Houston for treatment or is this a consult only?  If you can only go for consult you are going to have to find a oncologist at home willing to do the chemo any way.  Also your doctor can consult with other IBC specialist without you traveling if they will make the effort.

    I hope you find your answers soon.

    Flalady

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  • Jessica29
    Jessica29 Member Posts: 36
    edited February 2009

    hello from England!

    First of all I'm not triple negative.

    That said I had my chemo prior to surgery, 4 rounds of FEC which did nothing followed by 6 rounds of Tax. 8 out of 9 lymphs involved .

    I had a delay following end of chemo before surgery which resulted in the cancer attacking my breast skin. Consequently I am on my 3rd recurrence of skin mets in that area. After my second recurrence I was referred to the London Marsden, where Dr Stephen Johnston has a special interst in IBC. He is fantastic!

    I would ask your onc for a second opinion referral too. I am still seen locally as well as at the Marsden, I like to keep all bases covered!

    Good Luck,

    Jackie x

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  • kellly
    kellly Member Posts: 2
    edited February 2009

    thank you all for your warm welcome /replies. Im in The Netherlands. Thanx for all the suggestions, ill be looking into it and other suggestions are offcourse welcome.

    Its good to know you guys are out there, since IBC is such a rare disease, and this such a small country... Well you know, thanks for being there allthough I whish none of us was here.... 

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