Had total thyroidectomy, neck dissection and RAI but now have lung mets

Hi, just looking for some lived experience and advice. My husband was treated in December 2021 for papillary thyroid cancer - had a total thyroidectomy and right neck dissection. He then went on to have RAI at the end of March. He had his follow up oncology appointment via the telephone to talk about his radio iodine uptake scan which showed uptake in his lungs.

We are now worrying that this means he has metastatic spread and what this means for us as a family - we have 2 young boys and hearing the word uptake and spread is really scary.

Thanks

  • He will get more RAI treatment over the next few years to either get rid of or minimise the growth in his lungs. 

    He will be closely monitored by his team to make sure things stay under control. RAI will be used as the first line of defence, but if for any reason that stope being effective, there are newer treatments available to thyroid cancer patients who need them

    I would recommend at this stage to get in touch with the Butterfly Thyroid Cancer Trust up in Newcastle. The lady that runs the charity is highly knowledgeable and very well connected. She'll be able to put you in touch with others in your husband's situation. 

    We don't tend to get a lot of people here in the group who have to handle this sort of spread, so for that reason, I always point people towards Butterfly as they have more knowledge than the Macmillan forum group or the Macmillan staff.

    Please stick around and ask us any questions you want, but on the details specific to your husband's case, I recommend you go to Buttefrly.

    (I hope that doesn't read as if I'm fobbing you off. I'm trying to find you a great place for relevant support).

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • I think this is my situation too.  Only seen scan results online this evening and pretty upset. 

  • Hi, 

    I agree with the below too. I had papillary thyroid cancer that once removed had angio-invasion(spread to the blood). 
    when I had my first round of radioactive iodine they found it had spread to both lungs and my spine. 
    i was told I would have a 5% chance of recovery(because it had spread to the bones) and I would need the radioactive iodine 6 monthly- this was a big hit it our family of 6 with 2 under 3. 

    however, after my second round of radioactive iodine it showed no uptake, which means the first round really went to town on the cancer, 

    The truth is reoccurrence is likely, BUT, for now I am ok with inactive cancer in both my lungs and sacrum, which Is amazing. 

    the butterfly trust truly are amazing and I couldnt agree more that they are  truly worth talking with in regards to your case. I also recommend local hospice (you can referral from your specialist nurse ) as they can help with your husbands medication, symptoms,‘complimentary therapies etc 

    i hope the outcome is similar if not better. I know everyone’s outcome is different and I hated being told it would be fine,  but I will say in my experience the biggest concern was the spread to the bone rather than lungs, they felt this was more treatable so I have everything crossed for your family. 

    best wishes

  • This is great news CLB26. It gives the rest of us hope. I was diagnosed four years ago with spread to lymph nodes. In March this year I found out it had spread to my lungs.  At 55 this is worrying but I have to say I have met some people across various groups found randomly, who have been in a similar situation and are still being treated and living well ten years later  Barbara is right that there are not so many of us in this situation on here but it’s good that more of us are connecting.  Hope it all goes well with the treatment for everyone and it would be great to keep in touch. 

    ps had radioiodine on the 13th May and will do bloods on the 11th July. Will keep you updated 

  • I had a total remover of my thyroid in may and I was told to go for RAI do you think it is necessary to have the RAI because I am afraid of the side effect but the consultant confirm that they were able to remove all that they saw on scan but if so is there any need for the RAI ?

  • I had RAI in May and found it fine.  The worst part was the diet for 2 weeks beforehand but it was not too terrible - and surely better than stopping thyroxine.  
    The stay in hospital was ok, rather boring but it was only 48 hours, so manageable.  I drank a lot of water to get rid of the radioactivity and chewed gum/sucked sweets starting 24 hours after the capsule in order to protect my salivary glands.  
    if the doctors say you need the treatment then I would go for it.

  • Hi 

    Sorry to hear you have had to go through that too. 
    Have they told you what your thyroglobulin levels are? This is a blood test to indicate whether there is still presence in your body, but if you have had a total thyroidectomy it should be really low, if not near zero

    Mine was high and I was experiencing pain in my spine therefore it was necessary. I also feel that I would have personally had it anyway because the side effects are not forever and based on my personal circumstances we would be able to manage. 
    All the best