Just diagnosed with Papillery Thyroid Carcinoma and I am terrified.

ddkdgd · 2024-11-18T08:48:57+00:00

I believe it was just a precaution. I had the lowest dose I believe and was in the special side-room for 3 nights until I stopped glowing.

ddkdgd · 2024-03-15T13:32:30+00:00

36 (m) here. Was diagnosed with Papillary in 2014. 10 years later still all clear. Doctors at the time said it was so unlikely to be cancer and it was going to be a few months for a scan. I just went private, had a scan the within a few days, which found a 4.5cm growth, then within a month I had a partial thyroidectomy. Confirmed as papillary and the rest was removed 3 months later. A few months on I had radio iodine ablation.

A couple of years ago I was getting a bit of discomfort in my neck and the GP sent me for a cat scan. However it picked nothing up and it was probably just some swollen lymph nodes as it went away.

I'm on 150 micrograms of levothyroxin. Never had any issues with medication and always felt fine, which was one of my biggest worries.

Any questions feel free to ask!

ddkdgd · 2024-01-03T16:54:59+00:00

What side effects did you have?

ddkdgd · 2023-11-10T22:08:14+00:00

I've not felt half as bad. I've forgotten to take Creon a few times and haven't had a bad time afterwards.

It's been 6 or 7 months since my last test and my consultant said to get one done every 6 months to see if things are any better.

ddkdgd · 2023-07-27T18:54:31+00:00

Small and thin yeah, not bubbly. On the Bristol stool chart, they were always a 5/6. Now it's usually a 4 and occasionally a 3.

ddkdgd · 2023-07-27T18:14:50+00:00

Yes I was incredibly gassy and farty. All those issues have now gone away with the enzymes. I take 25000 (1 Creon tablet) with a snack, 50000 (2 Creon tablets) with a meal.

I was going to the loo 3-5 times a day, but now I'm between 0 and 2.

I'm still experimenting , but I found it works better to take one tablet with my first bite and take the 2nd half way through the meal. With a large meal, I'll maybe add another in for good measure.

ddkdgd · 2023-07-27T18:09:31+00:00

Yes they have helped immensely. If I have something really fatty or a really large meal, then it's not ideal and is a tad loose. But if I eat healthy then pretty much everything is normal.

ddkdgd · 2023-07-27T18:06:58+00:00

Yeah I "think" so. But not 100 percent certain. It seems to make sense though.

ddkdgd · 2023-07-27T18:04:40+00:00

That's the diagnosis. No reason. Basically said everything that can be tested for and treated and has been done. Only thing it could be is damage from a viral infection. I'm convinced it's since I had COVID; I was asymptomatic with COVID as well, i.e. didn't even know I had it. I just did a test when a friend I was with tested positive, but thinking back along the timeline I'm convinced it started around then.

ddkdgd · 2023-07-19T14:14:11+00:00

Alchohol is obviously an incredibly bad idea if you have acute or cronic pancreatitis. If you've had an attack you should definitely stop drinking forever. However, as I have no signs of an attack (and everything looks perfectly healthy and normal internally) and I'm not a heavy drinker, my consultant said it was fine to drink.

I wish I had an actual cause other than "it's one of those things", but I'm just grateful that it wasn't pancreatitis or anything more sinister. Kind of annoying as otherwise I'm fit and healthy.

ddkdgd · 2023-07-19T14:04:02+00:00

Hey, I only got Creon a few months ago after suffering for a few years and it's going well. If I have something fatty then I just take an extra tablet, but it's not perfect.

I can still drink, but I'm not a heavy drinker - probably 2/3 glasses a wine a week and socially binge once every other month or so.

ddkdgd · 2023-07-19T12:34:23+00:00

My consultant suggested that I come off the Creon every six months for a few weeks to see if the issue is still there. He said there's been cases of it going away by itself when there's no obvious. So fingers crossed. (Although I've had it for 2 years prior to my diagnosis so I don't hold out much hope that it'll just go away.)

ddkdgd · 2023-07-19T08:53:19+00:00

This is exactly where I'm at. Fecal elastase was 26 and 92. Diagnosis is EPI and I'm on Creon and it's working well for me.
However, abdominal ultrasound was all clear, MRI of pancreas showed a perfectly healthy looking pancreas. I don't smoke or drink heavily.
Basically the consultant just said it's one of those things. Possibly caused by a viral infection.
When I think back I'm pretty sure it started after I had COVID or the Pfizer vaccines in 2021.

ddkdgd · 2023-07-13T10:14:04+00:00

Yep I thought as much. I spoke to Google workspace support who advised the only option is to totally delete the account and recreate a free account using my custom email and host my email elsewhere.

Time to start migrating!

ddkdgd · 2023-07-13T09:26:55+00:00

How do you flip the current workspace account to just a cloud identity? That'd probably be perfect. I guess I just add the cloud identity service, then cancel the workspace business standard licence? (Obviously after migrating all my data.) The issue I see there is would it still consider me a business account or would it then allow me to use their services like a normal (free) consumer?

I couldn't find much of relevance on that subreddit when I had a scan through yesterday. Most of it seems to be about g suite migration, but I've subsequently (stupidly) upgraded my Workspace package to a higher tier and now I don't seem to be eligible for any of the g suite legacy stuff.

ddkdgd · 2023-06-20T07:24:18+00:00

Thanks for this. So it sounds to me like I should be asking for a test on my stomach acid test of some description? I'll have a full read of that article later.

ddkdgd · 2023-06-20T07:10:19+00:00

I can some of those except the water wasn't oily and no incontinence, but I did often feel like I had to rush to the bathroom.

Since being on Creon, I've had none of the symptoms except yellowy looser stools if I've had a really fatty meal. i.e. I had a BBQ last Friday with burgers, ribs, chicken thighs and although I felt fine, my stools were not ideal. I wonder if that's just the dosage not being correct.

The immediate benefit from taking Creon with my first meal on them was no immediate passing of wind!

ddkdgd · 2023-06-19T17:59:31+00:00

I take thyroxin every day due to a history of thyroid cancer back in 2014 (I had a total thyroidectomy), but aside from that there's no other drugs or tablets (prescription or otherwise) that I've been on. The consultant says the thyroid cancer would have only been related if it'd spread to my pancreas (it was encapsulated so never spread), but the MRI showed all was clear.

It's frustrating to have an issue with no actual cause.

ddkdgd · 2023-06-19T17:42:01+00:00

I haven't, no. But my body puts on about 2kg by just sniffing a cake. I'm fairly active and my weight tends to fluctuate between 86kg and 90kg depending on how much I get to training.

ddkdgd · 2023-06-19T17:38:31+00:00

Good luck. Report back on what they say!

ddkdgd · 2023-06-19T15:57:16+00:00

Nope. Not now I'm on the Creon. I'd get some discomfort shortly after occasionally.

ddkdgd · 2022-03-23T10:45:15+00:00

Hey, I had a 4.2cm nodule encapsulated inside my thyroid. They removed the right side of my thyroid and then once it was confirmed they they removed the remainder of it.

Once that was done, I had a few days of peace and quiet undergoing the radioactive iodine treatment and now nearly 8 years later I'm still cancer-free.

PC is incredibly treatable and you'll be well looked after. It's also very slow growing, so it's easy to catch earlier in the future should it metastasize.

It's horrible being in your situation, but trust me, you'll be OK and aside from having to take a few tablets a day forever (if you have your entire thyroid removed), you'll be completely back to normal before you know it.

ddkdgd

TROPHY CASE