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paplillary thyroid cancer Worried

29 Jul 2022 08:50

Hello everyone just after some advice I'm 28 male had a partial thyroid removal 3 weeks ago had test results yesterday confirmed paplillary thyroid cancer 11 mm very small so Consoltant said just confused what happens next any advice would be much appreciated

paplillary thyroid cancer Worried

29 Jul 2022 09:16 in response to Gbs113

Basically, what happens next is that they will probably remove the rest of your thyroid. They may also take some lymph nodes  if they think there is a risk it's spread to them.

Given how small it is, that is likely to be the end of it, except that you will then have to take medication for life.

Did the consultant say if you would need the rest of your thyroid removed? If you don't, then you are probably done. But I think they usually do.

If it's any consolation, my papillary thyroid cancer was 67mm and there were 8 lymph nodes affected and I was back at work a month after the operation. Any cancer is scary, but they say papillary thyroid cancer is sort of the "least worst." 

paplillary thyroid cancer Worried

29 Jul 2022 09:20 in response to MargaretMary

Thank for reply  he said that I would be given a ct scan to make sure not any were else he say he doesn't think it will need to be removed but I spose all depends on scan just really worried just can't believe what's happening 

paplillary thyroid cancer Worried

29 Jul 2022 09:46 in response to Gbs113

You're bound to worry, but it sounds like you are most likely done with treatment. The worst is already over.

paplillary thyroid cancer Worried

29 Jul 2022 11:10 in response to MargaretMary

Thanks gives some resurance just worry about if it's spread any were  else 

paplillary thyroid cancer Worried

29 Jul 2022 13:52 in response to Gbs113

Papillary thyroid cancer usually only spreads to the lymph nodes if it spreads at all and that makes little or no difference to the prognosis. Survival is still pretty close to 100% (like 99.something%), still no need for chemo or anything like that. 

Odds of spread any further is about 1%-4%, I think and given your age and how small it is, I'd say your odds are lower again.

And even if it had, survival rates would still be at least 77% (I think again, they'd be significantly higher at your age, but it's hard to get stats as it's not very common).

I know you always think of the worst case scenario. I did too and in my case, the cancer was so much larger than the norm that I was thinking "well, yeah, spread is very unlikely, but a tumour of 6.7cm was pretty unlikely too and that happened."

They have to check. But the odds are very much against spread.

paplillary thyroid cancer Worried

14 Aug 2022 18:50 in response to Gbs113

So I'm not the only male with thyroid cancer! Laugh
And I'm also just 1 year older than you! If you're interested, here is my story https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/left-th...

Given how small the cancer was, you might actually be done with the treatment and just do follow ups, I think it mainly depends on whether they find evidence of it being somewhere else, which is extremely unlikely in general but feels even more unlikely in your case.

Even if it did spread, they'd likely give you radio iodine, which is more or less a one-off tablet that they give you at the hospital. The only "problem" with that is that you'd have to isolate for a week or so. I know going through this is hard but in your case I think there is no real reason to be overly concerned or expect bad news from the scans. In cases like yours (no spread outside of the thyroid and small tumor), the survival rate is pretty much 100%

paplillary thyroid cancer Worried

14 Aug 2022 21:50 in response to Lost92

Hello thanks for reply means a lot to no I'm note the only male going through this 

 

had my ct scan yesterday got appointment on 25 aurgust to c what happens next still bit worried about it all   And voice is still hoase after month after surgery 

 

How are u now mate have u hade all your ops ? 

 

paplillary thyroid cancer Worried

14 Aug 2022 22:11 in response to Gbs113

My surgery went well, the surgeon was really happy about the outcome considered how much the tumor had spread in the neck. The only complication is that the tumor was also around a nerve and they could not preserve it, although they said they tried for a long time. So my left vocal cord is now paralysed. I'm sure your surgery was much much easiser as they only removed half of your thyroid and no lymph nodes. Your voice will come back with time, as the swelling in the neck goes away.

Other than that I am stressed about the scan results and honestly still a bit shocked about what I had (and will have) to go through. It's hard to process all this. Cancer always felt like something very far, that affects mainly people in their 60s, 70s and 80s. It feels really unfair to have to go through this at a relatively young age. To me it felt particularly unfair because for the first time in 3 years I had finally managed to sort out a lot of problems, related to both work and relationships, after 2 very hard years because of covid and lockdowns.

How are you doing mentally?

paplillary thyroid cancer Worried

15 Aug 2022 00:29 in response to Gbs113

Hi there just seen your post not been on myself for a while. I have just had a completion thyroidectomy yesterday after having right side removed 15 weeks ago and finding out I had thyroid cancer. Mine was also very small in size, but after being reviewed in the MDT meeting it was found to be follicular variant of PTC so more aggressive than first thought. Due to the fact the remaining half wasn't picking up the slack of having the right side removed and also suffering from autoimmune thyroiditis and having a thyroid cyst I opted to have the rest removed. I am feeling much better after this surgery even though it is obviously still very early days. I was started on 50mcg of thyroxine 6 weeks ago and this has now been uped to 125mcg. I have also been given calcium chews and active vit d. I will have a post op appointment in 2 weeks then radioactive iodine treatment in oct time to kill off any remaining

 cells.

Hope you are doing ok.

Here if you want to chat.

Kind regards,

Natalie.

paplillary thyroid cancer Worried

15 Aug 2022 06:55 in response to Lost92

Not doing to to bad doing , better that I thought I suffer from anxiety for years I thought I was gunna be in pieces  but I'm back at work and kids keep me on my feet just trying be normal as possible just hope all goes well and as u said bit shock still realy can't believe when he said I had cancer  

paplillary thyroid cancer Worried

21 Aug 2022 22:48 in response to liverpoolnat82

Sorry for late reply hope your doing ok 

 

I have appointment with Consoltant on Thursday I'm guessing to see what's  next hopefully nothing to concerning  struggling but this week just overthinking I guess   Thanks for reply 

paplillary thyroid cancer Worried

22 Aug 2022 04:33 in response to Gbs113

Hi i am 9 days post op and doing well. I feel much better this time around, movement in my neck is much easier, don't seem to have the same swelling as last neither. 

I have my post op appointment on 31st to get dressing and stitch removed. I am back at work on 30th after having the 6 weeks summer holidays off. 

Hoping the left side comeas back as clear from pathology. Not sure when next bloods will be or RAI, i suppose i will find out more at my next appointment.

Let me know how you get on at your appointment on Thursday, hope all goes well.

Natalie x

paplillary thyroid cancer Worried

3 Sep 2022 08:57 in response to liverpoolnat82

Hello just update had my appointment over the phone as consultant had Covid ct scan was clear it had spread any were however had few reactive lymph nodes  got  appointment on 20th to have the rest of thyroid removed not sure if I will have radioidone treatment after but I Spode will find out hope your doing ok 

paplillary thyroid cancer Worried

3 Sep 2022 10:44 in response to Gbs113

Hi there thanks for letting me know how you got on. Hope you are ok and not overthinking too much.

I had my post op on Wednesday and found out that the left side also had a small area of cancer but papillary the right side was follicular variant of papillary. 

Wasn't really expecting that result but it is what it is i suppose! Anyway we made the right decision to go back and remove the left. Luckily she removed some lymph nodes and these were fine so hasn't spread.

I had bloods taken to check my levels and if i need to increase my dose my surgeon said she will give me a call.

I am gutted that the feeling in my throat has not cleared so this mustn't be related to my thyroid after all that. I am on omeprazole for 4 weeks to see if that helps as maybe GERD. So we will see.

Got to just wait now for an appointment from nuclear medicine about RAI. Earliest thay can do it after surgery is 5 weeks and ideally like it to be done within 2-3 months, so think i will be looking at October some time.

Keep in touch and let me know how your surgery goes. Wishing you the best of luck.

Kind regards.

Natalie x

 

paplillary thyroid cancer Worried

3 Sep 2022 11:29 in response to Gbs113

Hi there.

Just been diagnosed with this too. Was a whirl whind or appointments and test. Consultant said had 3 nodules in thyroid 3cm in size and cancer has been detected.

At review on Thurs i was sent for pre op assessment, bloods and ecg. Had CT scan of lymph nodes on Fri and surgery is booked for next Thurs.

He said full thyroid will be removed possible some lymph nodes too. There may be a chance I need the tablet and some radiotherapy.

I asked had it been caught early, his reply "no" but not to worry. He was quite surprised no symptoms had been displayed other than a lump 7 weeks ago.

I havent really had time to process whole thing as its been quick moving and a shock.

I try not to worry as in reality it is out of my control but its human nature to do so.

Take care

paplillary thyroid cancer Worried

3 Sep 2022 20:37 in response to DeeDee46

Hello itwas a shock to me to with all the appointments and tests but quicker get done the better I think I only had left side removed first now going to have other side removed  but from what i experienced after the Op I only had minor pain for couple of days Then I felt fine other than Horse Voice which only come back and week go

 

try and stay stay positive you will be on the mend sooner than you think 

 

 

paplillary thyroid cancer Worried

3 Sep 2022 20:54 in response to DeeDee46

Did they say there was a chance you would need radiotherapy or radioiodine therapy? They are two very different treatments. Radioiodine therapy is usually just a one-off and just involves taking a capsule. I never had radiotherapy so don't know much about that, but think it is a lot more involved and tends to be repeated.

Hope all goes well with whatever treatment you need. It's hard not to worry. A cancer diagnosis is bound to be a shock. 

paplillary thyroid cancer Worried

17 Nov 2022 23:06 in response to MargaretMary

hello hope everyone doing ok just update had my op had the full thyroid removed.   phone consultation today to say the  ct scan I had before the second op shows might have thyroid tissue left there from the first  not sure if it's concerning or not so booked in for ultrasound scan next week fingers crossed nothing serious .

hoping to get radioidne done soon to get it over with but look like scan push it further away 

 

hope everyone's doing ok 

paplillary thyroid cancer Worried

24 Nov 2022 23:22 in response to liverpoolnat82

Hi, I had my right thyroid removed in October and cancer was found. I'm waiting for a second operation to remove my left thyroid follow by radioidone treatment. May I ask when you start your treatment? How long do you have to wait after the operation?

Hope you are doing ok.

 

paplillary thyroid cancer Worried

24 Nov 2022 23:31 in response to Xiu

Hi there I am ok thanks. I have now been told that I won't be needing the RAI treatment as my nodules were just under the required measurements. However I have been for an ultrasound on my neck today as I am still having a feeling of something pressing on/stuck in my throat. While I was there they took 2 fine needle biopsies, one either side so just got to wait now and see what the results of those show. Not quite sure what they seen think one was a node and the other possibly residual thyroid tissue left over.

I was told by my consultant surgeon that you can't have RAI for at least 5 weeks following surgery. Think they like you to have it within the first 2-3 months. Hope this helps.

Take care and hope all goes well with your second surgery.

Natalie x

paplillary thyroid cancer Worried

26 Nov 2022 18:33 in response to liverpoolnat82

Hello hope your doing ok 

paplillary thyroid cancer Worried

27 Nov 2022 12:05 in response to Gbs113

Hello. I'm in a similar situation. Had my right one out and found cancer cell. The size is about 5cm. The consultant said he also removed two small glands which showing cancer too. Had CT scan, it's all clear but consultant advised to have total removal and raidioidine treatment. I'm waiting for my second operation date. Was told will do treatment six weeks after operation. I don't understand why there is a need to wait for six weeks. I ask is it possible to delay surgery or treatment. The consultant said no. I don't understand this either. I have several holidays booked so may have to cancel them. I don't understand why I need second operation and treatment when the CT scan is clear. The constant said because of the size of the tumour. Is difficult to understand the situation fully. I feel like I need to do as advised even though I'm confused. 

Hope everything goes well for you all. 

Best wishes and take care

paplillary thyroid cancer Worried

27 Nov 2022 12:22 in response to Xiu

I think it is for fear there might be tiny microscopic cancer cells that did not show up on the CT scan but that might cause recurrence in the future (the terms there are probably all wrong, but as far as I can figure out, that's the gist of it).

I do think it's odd that they can't delay treatment though. My specialist said about the original operation that "that's not going to do anything in the immediate future, but psychologically, it's probably better do it soon" and that the radioiodine treatment "could be arranged at your convenience but should probably be done within the year."

paplillary thyroid cancer Worried

16 Jan 2023 07:37 in response to liverpoolnat82

Hello natalie

how are u you keeping now? I have also just been diagnosed with this variant , have you had your radio iodine treatment? 

 

paplillary thyroid cancer Worried

16 Jan 2023 07:55 in response to mel78

Hi there I am still plodding along. Sorry to hear about your diagnosis. I have not had any RAI as was told by nuclear medicine specialist that they didn't think I required it as my biggest nodule was not quite 1cm it was 9mm. 

 

 

 

Anyway I have still been having issues with my Throat so I was sent for an ultrasound and they took 2 fnas. One came back as a reactive lymph node and they weren't quite sure about the other so I was sent for a whole body thyroid i123 uptake scan. I had to go to hospital 4 days on the bounce 2 days for thyrogen injections the 1 day for radioactive tracer and bloods then next day for the scan. They said that it looks like I have thyroid tissue remaining in my thyroid bed as this is where the uptake was but that the rest of my body seemed OK. They have sent a report of their findings to my endocrine surgeon and I have an appointment with her on 26th Jan to see what is what going forward. I may possibly need the RAI after all to kill of this remaining tissue. My thyroglobulin levels are still elevated at 9.8 and my thyroglobulin antibodies are high too at 365. When they should really be near undetectable and under 20 post TT although this could be due to the thyroid tissue still being present. I will know more at my next appointment. 

I have been experiencing joint pain since Christmas which is getting me down a bit. I will mention this at my appointment as not sure if it is a symptom of this condition or a side effect of the levothyroxine.

Hope you are doing OK? Keep me posted on your journey and if you need to talk I am always here.

Natalie x

 

 

 

 

 

 

 

paplillary thyroid cancer Worried

20 Jan 2023 09:43 in response to mel78

Hi can I ask did you have a thy4 after FNA please? Not much on places about thy4 experiences. Thank you