Recurrent papillary cancer

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Hello

I had total thyroid removal and rai in 2019. My tg has never been zero and wavered around 2.o. 

I discovered small lump in my neck and was told on every check up it's a cyst. At my last uss there was a consultant in the room who asked if he could do fna. This was in May 24.  He said to him this feels like cancer and I need it removed. 

I saw my consultant who said fna shows it is cancer you need to come in for operation and we'll see you after to discuss rai. This was june 24.

I heard nothing except follow up appointment for 26th September. 

I called secretary to the surgeon in July and was told I'm not down for surgery I need to see my oncologist again.

After much too ING and fro ING my oncologist called me about 3 weeks ago and said he'll discuss the plans and options when he sees me in September. 

I was really unimpressed as 2 consultants tell me I need it removed then my own oncologist will discuss it in September.  

I don't mind when plans change but perhaps someone should have let me know? 

I'm anxious of course and the lump has grown.

I know I'll be seeing him soon I'm just wondering what other people's thoughts are? 

Thanks

  • Hi Herbertlump, I'm sorry to read of your recurrence and subsequent difficulty in pinning down appointments/surgery. It's the dread in the back of all of our minds on here. Just to have a recurring lump confirmed as cancerous and all the anxiety that induces is awful enough but I can only imagine how stressful it is to then be left to live day to day with that whilst you have to chase your own surgery down. To then be told “oh we'll have a chat in September” is incredibly unhelpful! Unfortunately unless the person you're speaking to has lived this nightmare, they rarely have any idea what it's truly like. You're lead to believe once in the cancer system, treatment paths will be much smoother but sadly reading many posts on here it's not always the case. Treatments can be different from area to area too.

    Can you contact your CNS and ask for help speeding things up or clarification at least? My CNS has been an absolute Godsend throughout my treatment and always replies quickly to my emails but I think reading other's experiences, I'm lucky to have her.

    Do let us know how you get on.