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  • #20403
    alisdair
    Participant

    Good Evening Everyone,

    I am new to this forum and reading all the posts have given much inspiration in dealing with our introduction to melanoma.

    My name is Alisdair and am living in Zurich, Switzerland having transferred with my job 2 years ago.

    On 9th March this year, I married my fabulous wife, Chiara, having brought forward our plans in order that she join me in Zurich as soon as possible. As part of the planning for her to come across from Toronto, she arranged a few medical matters in order not to have to throw herself into a foreign health system as soon as she arrived, one of these was to have a mole removed from her shoulder. This was in early April and her derm was reluctant and said that a shave would cause an unsightly scar and she should leave it, however thank goodness she is persistent and insisted. 1st May was the day for us, that we all know vividly, when her doctor called and told her that the biopsy had revealed a 1.45mm melanoma, Clark level 3, mitosis 3.

    On 9th May, we had our appointment with the oncology surgeon to discuss the original biopsy, her concerns were the mitosis level, but would undertake a WLE and SNLB which seems to be SOC. The end of the following week my wife was in surgery for the WLE and SNLB, resulting in 5 nodes being removed under her arm however none palpable, good news to keep us going until the results came back weeks later.

    On May 1st, I had already decided that I couldn’t stay in Zurich and manage the care and support needed, so with the support of a great employer took a leave of absence. I feel that you learn so much about yourself when you are plunged into such situations. The past month has been one of the most challenging emotionally in my 35 years, however my priority was and remains Chiara, no matter what and have to be there for her.

    The three weeks until her results came out were long, however we managed to go on a road trip for 10 days, my main thought was to get away and enjoy some together time and a different environment from home and hospital. Chiara is in the medical field and had read almost every study and watched every presentation on the internet, which although good for knowledge led to a great number of unanswerable questions and so heightened, understandably, her anxiety levels.

    Move forward 4 weeks and 3 days before our scheduled appointment, our surgeon called to give us the news that the results had come back negative. No melanoma was found in her tissue or lymph nodes and therefore staged at 1B. She pressed for BRAF testing and is now awaiting for a follow up with the medical oncologist, however is concerned that given it was a shaved biopsy that there could be further tumour that was not picked up and how this impacts current staging.

    After the initial results, we sat down and discussed the plans we had made and have decided to press ahead with the move to Switzerland. We need to live each day as it comes and finally start our married life together and not put off our plans, but also put in place all that is necessary to keep monitoring. I realise that this is more of a US forum, however I have read more and more European posters, but does anyone have any idea of SOC here in Switzerland, I am due to visit University Hospital here in Zurich over the next week but personal recommendations are welcome.

    This forum is proving invaluable to know that both Chiara, and myself as a caregiver, are not alone in this.

    Many thanks for reading.

    Alisdair

    #55015
    Catherine Poole
    Keymaster

    Welcome to our forum and yes, we have a solid partnership with those from other nations and hope to find the best possible treatment for those that seek our navigation. In fact, I travel to Zurich next week for a patient thinktank meeting and will be meeting more patient advocates from many nations to discuss access and other issues. (please check previous posts under Pati, to learn of her work in Brussels, we are sister organizations)

    Back to your wife, it is great her SLNB biopsy was negative. What was the depth of her lesion? If it was a “deep” shave biopsy I would be ok with the current situation. BRAF testing is usually reserved for stage IIIC or greater. You are in a watch and wait mode now and she may not deal with this again. Another opinion on the pathology could help some of the anxiety. She should be seen about every three months, to palpate the lymph nodes and make sure she has a good skin exam. I hope this helps you and I will also be inquiring about treatment centers in Zurich.

    #55016
    Chinix
    Participant

    Dear Alisdair,

    I’m swiss and live in Lausanne. My father was diagnosed with melanoma early May and even if he lives in Brazil he decided to come to Lausanne to do the WLE and SNLB. He also had a ct-scan of the thorax. We have an appointment tomorrow to get all the results back and we’re obviously very anxious. This Forum is indeed amazing. I’ve been reading it for a few weeks now and it helped me practically and emotionally.

    I know that Professor Dummer at the University Hospital in Zurich is THE swiss melanoma’s specialist. Is your wife seeing him? I would be interested in having your feedback. It is comforting to know that people not so far from here are dealing with the same questions.

    And Catherine, I would be grateful of any information you could gather during your meeting in Zurich about treatment centres in Switzerland (including Lausanne), patient association, clinical trials etc. That would be very much appreciated. And I also hope you enjoy your trip.

    Alisdair, I hope you’ll let me know about your experience in Zurich. Best wishes to you and your wife.

    Viviane

    #55017
    alisdair
    Participant

    Catherine, many thanks for your reply and advice, this is truly insightful and helps no end. I will certainly have a look at Pati’s posts.

    My wife’s biopsy was a deep shave and came back after 2 pathologists had reviewed it as 1.45mm, however she is obviously concerned that as it was a shave then the full extent was not revealed.

    I look forward to hearing the results of your trip to Zurich next week. Many thanks and good travels.

    Viviane, firstly our thoughts and best wishes are with you and your father for tomorrow’s results and as I’ve found on this (and other forums) you are not alone and everyone will be there with you.

    As for our progress, you are further advanced than us within the system here in Switzerland, as it my wife had her WLE and SLNB in Canada. My task for the coming week is to visit the University Hospital to see how my wife can be admitted to a monitoring programme once she arrives in Zurich (before end of September), perhaps even an opportunity for our third opinion on the original path results if this is not completed before she leaves Canada. They can hopefully also advise whether we need a referal from our GP or a Derm for appointments.

    Please keep in contact and I will certainly keep you posted about my findings in Zurich and likewise please do the same, as you say it is reassuring that someone else so close to home is also dealing with the same questions.

    Best wishes to you and your father.

    Alisdair

    #55018
    pati
    Participant

    Hi,

    Prof Drummer is the top reference in melanoma in Switzerland,

    Zelboraf has been approved in Switzerland, so if she ever needs it she could get it, I would need to enquire about Yervoy.

    If you want support or are interested in supporting others through patient advocacy representative you can contact me (pgarciap@ulb.ac.be) http://m-icab.org/ and feel free to contact Heidi directly in Switzerland, she is the founder of the Swiss Melanoma Patient Organization and is on the board of the Swiss cancer patient organization

    SWITZERLAND

    Heidi Liecthi Melanoma Group Switzerland

    email: heliechti@swissonline.ch

    Zurich is beautiful you and your wife will have a lovely life here,

    Pati

    #55019
    alisdair
    Participant

    Hi Pati,

    Many thanks for your reply and confirmation of Prof Dummer’s crudentials here in Zurich. Thanks also for yours and Heidi’s contact details, it is most reassuring that there is a “local” support network as well as this international forum.

    Zurich is proving to be an extremely small place and in fact met one of Professor Dummer’s study nurses who is involved in stage 3 and 4 trials at University Hospital. She was able to provide great comfort regarding the SoC and the professionalism by his whole department, all of whom speak excellent English. As soon as my wife arrives she will have no issues with being admitted to the department to undergo 3-4 monthly checks.

    Once we are admitted, I will post further details of our contacts as we make them at UZH.

    Best

    Alisdair

    #55020
    Catherine Poole
    Keymaster

    I’m so happy to hear that your wife will recieve excellent care. Please let us know how things are going with a regular update. She is lucky to have you looking out for her.

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