Hello there, I am new to the Forum. In 2013 I had my thyroid and some lymph nodes in my neck removed as I was diagnosed with medullary thryroid cancer. I did have surgery again to removed more lymph nodes a couple of years later. I have been visiting specialists and had regular scans and blood tests since being diagnosed. I have been really OK all this time and have barely given it any thought, I have lived a normal life. A year or so ago a scan showed it had moved on to my lung and I was closely monitored. I have now been advised to go on Cabozantinib and am very apprehensive and scared as I have read about the possible side effects. Has anyone else been on this medicine and how have they got on. I feel I need to talk to somebody about this. Other than a slight cough at the moment and some diarrhoea I feel fine. Would love some moral support and advise. It seems very few people have this form.    

  • Hi  and a warm welcome to the Macmillan Online Community but sorry that you needed to find us and I am especially sorry to hear about your diagnosis. I noticed you've not had an answer just yet, but I'm sure someone will be along soon. 

    Although I had a different type of cancer, any cancer diagnosis brings many questions, lots of confusion and stress but talking with other people who are on the same type of journey will help you navigate this rollercoaster. 

    The Community is organised into dedicated support groups so can I see you have joined our supportive Thyroid cancer group. I would also suggest you join our Lung Cancer group , this will be a good place to connect with others navigating the same type of cancer journey.

    As you have asked about a particular medicine, I would also suggest you Ask a nurse as they'll be able to offer advice but you should allow a couple of days for a reply.

    When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time. 

    It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

    Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

    Sending you welcoming hugs Bx

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