New here with Thyroid cancer diagnosis

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Recently i was diagnosed with thyroid cancer and I am scared and feel lost at the moment, I am due for a second Op to complete thyroidectomy and then receive Radioactive therapy. I am a person who always sees positive outcome in bad things that happens in life and I am good at encouraging others to stay positive. However, my cancer diagnosis has changed everything and I need help I can get to cope and fight this.  Please if you have similar cancer diagnosis (Oncocytic thyroid cancer) share your journey with me. 

I am keeping everyone here in my prayers and sending a bear hug to each one of you. 

  • Hi  and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis. 

    Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).

    This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

    The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Thyroid Support Group.

    This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….

             Thyroid cancer

    ……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

    You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Good morning , I was diagnosed last July with the same thing , I’m yet to start my treatment , hopefully at the end of may, I’ll be having radioactive iodine it’s been a long journey I’ve also had  thyroidectomy 

  • Hi Ceilia

    Thank you for your reply and I am sorry to hear about your experience. We are going to be okay!

    I am due for complete thyroidectomy in April. How do you feel after using hormones replacement medication?

    Have a good and peaceful week.

    Marie

  • Hi , thanks for the reply , went in to have my thyroidectomy New Year’s Eve I was back home next daySlight smile, I’m fine on the hormones replacement (levothyroxine) , going for my radioactive iodine on 2 June , in hospital isolated 3-4 days , I feel fine just a bit of back ache and breathless now and againOk handut I carry on , good luck for April , you’ll be ok Ok hand xx

  • Hi!

     I had  Thyroidectomy on 10th Dec and I have just done a higher dose of RAI in early march. I was diagnosed with poorly differentiated thyroid cancer which is more aggressive than the differentiated ones like papillary and follicular. I had no signs of it being in lymph nodes but it was close to the surface of thyroid and in the veins and capillaries of thyroid they took out. I was in pieces with the news and this is my 3rd different cancer I have battled in 14 years and just extremely unlucky. But I beat the first 2 so I am hoping to beat this one and hopefully no more bad news after this.

     I tolerated the RAI ok, stayed in 2 nights at hosp then isolate at home. Prior to that I had to do a week of low iodine diet, the. Mon and Tues at hosp for thyroid jabs then checked in on Wednesday for RAI. Process was ok, the nuclear medicine team were great. There were scans done whilst in hosp, will know results of scans in April at appointment with oncologist.  Very much crossing one bridge at a time.

      My swallowing is better, though not back to what it was yet and my voice is getting better too. 

      I hope your op goes smoothly and you are home without any complications. Will keep my fingers crossed for you. I did find talking to Amy from Butterfly Thyroid cancer trust really helpful and lift me from the state of anxiety and upset I was in so I do recommend that if you need someone  to chat to.  Like you, I try to remain positive but sometimes diagnosis can be very hard to make sense oft all. But we are here, and we keep going!Hearts

    ️️

  • Thyrogen jab, not thyroid, autocorrect, sorry!

  • Good luck and fingers crossed Fingers crossed for a good result x 

  • I’ll be going for them 30th of march and 1st of June 

  • Hi Ceilia, 

      I know it might feel daunting, but hopefully you will tolerate the RAI well, most do, I have been told. How do you feel about it?  Looks like you have two scheduled for RAI?

      If you like to know anything, just ask, I don't mind. Stay strong and will. Will thinking of you on 30th! 

  • Good morning and thank you , didn’t realise I might be ill with the RAI, I’ll be having two tablets , I have a rare type of cancer but luckily is a slow growing one it has spread to my lungs and spine but strangely enough I feel good