American living in Switzerland with TN

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katherineINswitzerland
katherineINswitzerland Member Posts: 18
edited June 2014 in Triple-Negative Breast Cancer

Help!

As if this diagnosis were not challenging enough, I am trying to navigate these difficult medical waters IN ANOTHER LANGUAGE!!!!!!!  (I am an American living in Switzerland due to my husband's job.)  I have a VERY basic understanding of French; I can order a bottle of wine, tell the taxi driver how to get to my house and say hello to the postman.  And, while the majority of doctors here speak great English, none of the support staff do.  (And why should they?) 

I was diagnosed on the 6th of November.  TN, smallish tumor (under 2 cm.), no known nodes (results from surgery back tomorrow), lumpectomy last week, chemo port put in during surgery, begin chemo next week.  Have had bone san, chest x-ray, abdominal scan and breast MRI, mammo, ultrasound and biopsy.  Looks like we are dealing with just the tumor.

Problem is, Switzerland is a small country.  I can't find any information in English or any current trials.  I can't even pinpoint what the right chemo combo/schedule should look like!  Can anyone help with this?  I would love to go into my oncologist on Monday armed with info -- like which drugs, how often, when, etc.  She has said that I will not be on steroids during my treatment -- is this a good thing?  What medications should I be asking her to put me on to prevent nausea and other side effects?!?  I am having massive headaches -- should I have had a CT or other scan already to rule out brain mets?

 Also, what supplements are you taking and why?  Who prescribed them?  What should I be asking the oncologist for?

I'm so sorry for all of these questions -- I am just so darned behind the eight-ball!  It seems that one day I was fine and the next I was leaving the hospital unable to breathe or lift my arms.  Damn this cancer!

With love and many, many thanks for info you can provide,

Katherine

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Comments

  • Iza
    Iza Member Posts: 117
    edited November 2009

    Hello, Katherine,

    I am certainly not one of the most savvy members of this board but I still wanted to send you hugs and encouragement! I am TN too, and an expat too (although in my case I am foreign born, living in the US). I am currently 3 years out of the end of treatment and doing great.

    In my experience, what US protocols dictate that is different from what you describe is a full-body PET scan at the time of diagnosis, to rule out any other hot spot anywhere in your body. To me this was the single scariest moment of the whole ordeal, but I think it is a good idea to have one anyway just to be sure. Ask your doctor if he would be willing to order one for you before embarking in chemo.

    As to chemo, most people I know with TN tumors have a combination of adriamycin, citoxan, and taxol. In my case, four rounds of AC followed by four rounds of taxol. The rounds were two weeks apart, spanning four months in all.

    Make sure to join one of the chemo threads with women on a similar schedule. It helped me tremendously, being able to share and read about other women going through the same experience.

    I have to go now (family emergency: my husband was fixing a pumpkin cheesecake for this evening and as he was putting it in the oven he dropped the whole thing!!!) but I wish you all the best.

    Hugs,

    Iza

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  • rinna40
    rinna40 Member Posts: 357
    edited November 2009

    Hello Katherine,

    I am also TN, and just finished chemo about two months ago. Iza correctly described what seems to be the standard protocol in the US (my american friends can talk better about this). I am in Canada and I did three rounds of FEC (3 weeks apart) and then three rounds of Docetaxol (3 weeks apart). When I was first diagnosed and reading on these boards I was confused as to why I was not getting the same treatment as my american sisters, so I asked my Onc about this. He took the time to explain how the drugs I was getting were essentially the same as the ladies in the states, but just manufactured by different companies. I only mention this because I have noticed that other TNs who are not in the states are getting the same drugs that I got (one in Germany, and one in Australia).

    Good luck to you and look to the wonderful ladies on this board for advice. They have calmed me at my most scared moments. Chemo was definitely not fun, but you'll get through it and know that you are doing everything you can to kick cancer.

    Rinna 

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  • ChrissieD
    ChrissieD Member Posts: 36
    edited November 2009

    Hi Katherine,

    I am so sorry for you diagnosis.  Chemo is doable - tough but doable so you will get through it. I had 4 AC treatements followed by 4 Taxol treatment dose dense every 2 weeks.  Some women get the Taxol weekly for 12 weeks. Push for a dose dense schedule versus every 3 weeks. 

    Could you try to find an interpreter to go with you to your appointments and help you out with reading?  Be sure to ask to have your D levels checked.  There is a lot of research now on low D and breast cancer.  I take 4,000iu's of D3 / day.  Having been diagnosed with BC you need to get your levels above 65. 

    Hugs to you. 

    Chrissie

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  • katherineINswitzerland
    katherineINswitzerland Member Posts: 18
    edited November 2009

    Oh, thanks to Chrissie, Rinna and Iza!

    This is such wonderful information.  I head to the surgeon today and will ask about a PET scan (short for?????) before I begin chemo next week.  Interpreter?  Good idea.  Will now try and bring a friend conversant in French to help me!  Oh, this is just the pits!

    Thanks for your support, friends...

    Hugs, Kath

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  • cheranthia
    cheranthia Member Posts: 65
    edited November 2009

    Hi Katherine,

    Whether or not you get steroids with chemo usually depends upon the chemo itself. For example, when I was given Taxotere (commonly given for TN), I had to take Decadron (a steroid) for three days to prevent an allergic reaction. Also, there are some very good anti-nausea drugs available. They may well go by different names in Europe, but Emend and Kytril are very effective. 

    You will feel much better after you've had your consultation with your onc and know what treatment plan she recommends. Also, Krissie is right. Dose dense chemo is supposedly more effective and you have the bonus of finishing much earlier. That said, in the event that a treatment must be delayed for a week (it happens), you would still be following a perfectly acceptable schedule. Best to you!

    Cherie 

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  • tibet
    tibet Member Posts: 545
    edited September 2010

    katherine

    I live in Zurich and I just sent you a private message. You can call me with the mobile nr I gave you in the PM. 

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  • katherineINswitzerland
    katherineINswitzerland Member Posts: 18
    edited December 2009

    Oh, I am so sorry for the delay in responding to you all! 

    The results from the surgery came back and, while the IDC tumor came back with clear margins, there were three spots of DCIS on the outer edges of the clear excision.  So, I had to go in for another lumpectomy and all of the resulting tests:  brain scan, dye tests, you name it.

    Test back from the second surgery and the spots were TN as well... 

    And I began chemo yesterday.  3 FEC followed by 3 Taxotere.  Still not sure what is the best but really too tired to contemplate the situation any more...

    I am SO sick.  So exhausted.  Feeling SO trapped.

    But I am thankful to be able to vent/plea for help from women who have been/are there.  Thank you!!

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  • Macc
    Macc Member Posts: 23
    edited December 2009

    Hi Katherine

    I'm British and I live in Switzerland....the German speaking part though. Yes, it's difficult dealing with it in another language. Sorry hadn't seen your first post, wish I had. Do you have an Englsh speaking cancer support group near you? Where are you located exactly? Most of the staff that I have had to deal with speak English to some degree here, so I feel very fortunate on that front.

     What did they give you for the nausea? I had Emend, Zofran and Motillum. I was given oral steroids for 2/3 days when on Taxotere, and I think that you should expect that too. I had a different diagnosis to you so had AC rather than FEC. My onc said don't bother with supplements

    As for information...no it's not available here in English so I just rely on the internet. I Read several support websites. There's loads of info out there if you feel up to looking. Feel free to send me a private message with your phone no if you would like to chat and I will call you.

     Hope the Nausea passes soon.

    Macc

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  • Ricki13
    Ricki13 Member Posts: 80
    edited December 2009

    Hi Katherine,

    FEC-T as you are having is the current preferred treatment for Triple Negs pretty much everywhere now except the USA which seems to mostly prescibe AC which is an older chemo.  The Royal College of Physicans published a report comparing FEC to AC (the standard US regimen) and concluded that FEC has certain superior aspects and therefore would be their adopted standard.  It is also significantly more expensive to supply which I'm sure is helping delay it's introduction into the US.  I used to live in the USA so have a pretty good understanding of the health and insurance system there...I'm sure doing this in another language is going to be difficult but it sounds like you are getting the best quality of care.

    I'm in Australia and we have similar diagnoses.  I also had a lumpectomy and a re-excision...then had my FEC-T between March and July (at no cost to me thanks to our national health system), then radiotherapy for 6 weeks.  It's not an easy road but you will get through it.  There are some wonderful ladies on these boards who will offer you every support so please don't hesitate to come and chat or vent or whatever you need.

    The worst part of it for me frankly were the steroids...I had every reaction you can think of.  But without them, side effects can be much worse so best to persist with them especially while you are working out what your body can handle etc.  Some people breeze by with limited reactions so you might be one of the lucky ones!

     R xo

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  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    My understanding is that a comparison of FEC and AC showed FEC to be superior on the traditional triweekly basis -- but unfortunately there has been no trial comparing dose dense AC (which has proven more effective to regular AC) to FEC.  My oncologist considers them equivalent  until a study proves otherwise and left the choice to me -- which was hard to make!   

    Katherine, you should feel assured that the regime you're on is standard of care.  And the addition of taxol or taxotere is especially important with trip negs.

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