I'm an American in Germany and would appreciate English support

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susaninicking
susaninicking Member Posts: 142
edited June 2014 in Triple-Negative Breast Cancer

Hi, I'm new here and just beginning this journey. I want to jump in in part because I'm in Europe and wonder if things are so different here in my treatment, my chemo regime, etc. 

To begin with my path reports are in German and seem to differ slightly from yours. What I know is that I had one tumor IDC, triple negative. The other in situ tumor was smaller and this one I'm not too clear on....I think it all came out with biopsy. Both tumors were small, 7 and 8 mm, no lymph node involvment and clear liver, lungs and bone. Thankful. My pressing problem which we will be dealing with this week and next with a 2nd opinion (asap) is that one of the clips (markers) that was placed at my biopsy was not found after my surgery. Dear God. I currently have a hematoma the size of Texas in my breast and because of this they say I can wait two more weeks but I must have a mammogram to see if the clip is still there where it originated, thus leading them to believe that the tumor is not totally out and I'll need another surgery immediately. If I have to have a mammogram anytime soon I think my journey will be over because this alone will kill me. My breast is like a rock at the moment and I just do not see how this can happen.  I have 2 doctors in the family (dermatology and rheumatology) who tend to think there should be an ultrasound or CT option to locate the clip. Anyone with experience or thoughts on this? 

After the resolution of the elusive clip, my prescribed chemo is FEC/Doc which I'm not seein in this forum. Is this more a European solution? Can anyone speak to this as well? I think the medical care here is competent but we are thinking of switching to a univerisity hospital where we hear the cancer treament might be a bit more innovative and current..maybe. The last oncologist I saw described the chemo as aggressive and not too nice so I wonder if anyone has had the experience. 

Thanks for any and all help in advance. 

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Comments

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited February 2013

    Hello susaninicking.

    I read your post with great interest and I was very dismayed to read about the clip left in you. I do hope it will be located soon.

    Please do not be afraid about the chemotherapy, it can be done.

    FEC plus docetaxel is quite common. It is fluorouracil, epirubicin and cyclophosphamide. I had three months of epirubicin and cyclophosphamide. Then I had three months of docetaxel (Taxotere). I am still here to tell the tale after nearly eight years.

    You are quite welcome to join the thread I created Calling all triple negative breast cancer patients in the UK.

    Breast cancer treatment in Germany is supposed to be very good.

    IDC, invasive ductal carcinoma, is the most common of the breast cancers and triple negative receptor status represents about 20% of breast cancers diagnosed. It is also quite common for tumours to have different receptors and are classed as mixed tumours. It can also happen that women have more than one tumour at a time. Do not worry about any of this.

    You will find good support on the forum and threads.

    Thinking of you and wishing you well. I hope to see you on the UK thread, which has women from all over the world, including the US.

    Sylvia xxxx

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  • susaninicking
    susaninicking Member Posts: 142
    edited February 2013

    Great, happy to join up with the neighbors!

    Thanks much,

    susan

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited February 2013

    I'm from Germany and I can't wait to go back home. Where in Germany are you?

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  • susaninicking
    susaninicking Member Posts: 142
    edited February 2013

    I'm in the suburbs of Munich, maybe 15 minutes south, a village called Icking. Are you headed this way? Are you German? I'm feeling pretty good about the medical treatment here and so far so good with language though my vocab is pretty limited when it comes to cancer. We covered piercings and tattoos in language school but not a mention of breast cancer!

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited February 2013

    I'm German :) I grew up south/west about 1 1/2 hours south of Frankfurt am Main. I've been to Munich for a soccer game.

    I heard about a excellent clinic in Stuttgard for reconstructive surgery. Chemo is not easy but you are in a beautiful area that should lift the spirit. A Oncologist told me Germany is the place to be for cancer. After your treatment you can do a Kur and it will be all good. Do you have friends there? I wish, I was home. I'm really sick of being in the states.

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited February 2013

    The Dr. Should be able to tell you in English.....

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  • susaninicking
    susaninicking Member Posts: 142
    edited February 2013

    Friends here yes, thankfully. I've been here 12+ years and the friends do seem to rally when they hear such a diagnosis. This is home now for me but goodness I could cope with being in the states! I miss my country probably just like you miss yours. Thank God we have a serious and well known doctor here at the local Uni hospital, known internationally for breast oncology. I've picked her program.

    I hope you get to come back if it is what you are pining for. Is your family here? Is there a chance you can come back? What are you doing in the states?

    All the best und gute besserung!

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  • Luah
    Luah Member Posts: 1,541
    edited February 2013

    FEC-D chemo is a very common regimen in Canada and Europe. A lot of ladies here are in the U.S. where AC-T is more common, but it is very similar. 

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  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2013

    Germany ahs an excellent reputation for breast cancer treatment and also offers some less standard treatments too at reputable institutes - good luck...xx

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  • Rhiannon78
    Rhiannon78 Member Posts: 33
    edited February 2013

    Hi there:  I cannot speak to Breast Cancer specifically, but I do medical market research for a living and I have to say that in the field of cardiology, Europe is years ahead of the US, especially (from the doctors I talk to in those countries) in Germany and Itay.  I would not be surprised to find it to be similar for breast cancer-or at least on par with the care in the US.  Plus, in the EU systems, you won't have to worry about fighting with insurance companies for coverage and trying to decipher co-pays and the like when you should be focusing on your recovery!

    I wish you all the best!  When we lived in Italy several years ago, I was always impressed with the care we recieved (virtually free of charge, btw), and it alwasy makes me mad when (some) Americans assume that single payer EU systems are inferior.

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  • susaninicking
    susaninicking Member Posts: 142
    edited February 2013

    I'm feeling good about it, better and better actually. It is a fabulous thing to not have to worry at all about cost. I can't imagine having that worry on top of everything else.

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited February 2013

    I got to the states last Jan. and got the dx in Mar. My husband is Military so New Jersey was not our pick. I have made 0 friends here what makes the whole thing extremely tuff for me. All I want is to go home. It was so difficult, with the insurance.....I'm just not used to all the American health care bull shit. Man, I miss Germany so bad. I'm trying to get back to normal.... We are waiting for new orders to go back. God knows when that will happen. I have to have surgery again for the TE and hopefully this time everything will go fine. I don't know if I can handle another complication.



    Thank god u have friends on your side! I'm just thinking, when you are on chemo and can't cook or clean I bet you will get a assistant from the insurance for that time, there called Haushaltshilfe.

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  • susaninicking
    susaninicking Member Posts: 142
    edited February 2013

    I so feel for you. Thanks for the tip about the haushaltshilfe. I'm loving that idea though this I have not heard about. Taxi to the hospital yes. Isn't it incredible how Americans think socialized medicine is evil? Most fabulous thing about being here. No hassle, not even something you have to think about. Come back.

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited March 2013

    I f... Hate the health care here!! Because of my insurance or some clerical error my port placement and lymph node removal got delayed for a week. When I had to switch chemo drugs because I was allergic, chemo was delayed..... I'm counting the days to return home.



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  • Hunter50
    Hunter50 Member Posts: 3
    edited November 2013


    I also am an American here in German with triple negative.... I have a wonderful Dr. and will begin chemo next week.... I will be in a trial study for some new meds which I hope and pray will work..


    My surgery went wonderful and very glad to have such a talented Dr. with so much knowledge.

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  • susaninicking
    susaninicking Member Posts: 142
    edited November 2013


    Hi Hunter,


    Where are you exactly? Please tell me more about the trial....something specific to TN? Feel free to message me if you prefer. I live near Munich, are you near here by chance? I am 3 weeks away from done with a year of BC, 14 more rads to go and I'm finished. I'm happy to talk about chemo if you would like. I had an overall really good experience....so lucky! What is your regime?


    My only other TN friend from the board, also Ami went back a few months ago. There are not so many of us here!


    Thanks for posting, Susan

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  • Hunter50
    Hunter50 Member Posts: 3
    edited March 2014

    I am on my last chemo and all went really good.... I am going to begin radiation near end of March and then will be looking for a Kur here in Germany.   Does anyone have any experience on which Kur to choose...

    I had an excellent place to take chemo and the staff was wonderful.  I am very pleased with the trial study which I am in looking over my shoulder at all times.  Study called Gain 2......


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