Papillary thyroid carcinoma

Hello Megane,

Well, what a silly billy you are!

I'd personally not recommend joining FB groups for thyroid cancer, especially not American ones. I've checked out a few and they are just terrible! America have a different system of doing things, where not only are their blood tests measured in different units, but they allow the use of T3 and NDT. So it can be really confusing for people from the UK reading these odd numbers and hearing about different meds. 

The main thing to remember though is that a support group is usually used by those going through treatment, being diagnosed, are a bit more complicated, and if they have a recurrence. Generally, the people who have had all the cancer removed and who are just on monitoring don't need the support anymore - unless they have a wobble or need more treatment. Because of this, support groups will generally show you a very skewed view of whatever they're supporting, so thyroid cancer in this case. So yes, in a support group you're going to get the complicated cases, the recurrences, and the just diagnosed looking for more info. You're usually not going to have the folks who are perfectly fine and getting on with their lives - of which there are a lot more of than there are recurrence cases.

If you feel the need for support after you're through treatment, then the best sorts of groups to look for are the life after cancer type groups. They'll help with the emotional side of a cancer diagnosis, and they're usually filled with people who have had all different sorts of cancers.

So just remember, what you've seen isn't the reality for most folks. It just seems a lot, because those are the sorts of people who need the support group the most, so will search it out for help and support as they go through more treatment.

Lass

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Thank u lass. I have been OK for the past year or so, going to work enjoying spare time with the family all OK. Just since iv been on these Facebook pages I have got anxiety, can't sleep and can't get on at work. I'm like what if this? Or what if that? Head spinning at 100mph. Thank you so much for the reassurance it means a lot. I hope everything is OK with you, take care please. X

In my early days post diagnosis, I also got sucked into a US-based FB group - Thyroid Cancer 401 or something like that. I remember one of my UK-based friends got so worked up by all the doom and gloom and reoccurrence and generally sh*t life stories that we both sat down one day, called each other by phone, pulled up the pages on our laptops and ceremoniously pushed the LEAVE GROUP button together.

The people in those groups don't mean to be poisonous and push all our buttons but far too often that's exactly what they do. 

Thank you barbaral, suppose its as bad as googling lol. I remember when I got first diagnosed I would sit up in bed all. Night  googling stuff, it got so bad I put provisions in place for the family and when I got to hospital for my first operation I was so convinced I was going to die on the operating table to a extent where I told the surgeon I didn't want to have my op because I could of respiratory failure, lack of oxygen to my brain etc etc, I was in a right state until he told me  "well if u don't have your thyroid out u will die" I think I will stick to this forum and try not to venture elsewhere Lol 

I agree, stick to this site.  I had TT done in Jan 2019 and was always on FB in a Thyroid Cancer group.  But I rarely go on it now, due to things being ok for me at the moment.

Same with this site really.  I just came on here by chance tonight, just to have a look.  

Most posts you see will be the people going through it all now.  Not the people who have had cancer removed and are now (touch wood) ok.

Jo

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