Life after thyroid cancer

Hi I had papillary thyroid cancer and had a total thyroidectomy and left neck dissection followed by radioiodine treatment. Every case is different though and behind every surgeon is a whole team who discuss your case and decide on the best treatment. Mine was probably more advanced than yours. If I were you I would get a second professional opinion to rest your mind more than anything! In regards to diet, the only two things you aren’t supposed to have is grapefruit and walnuts apparently as they effect levothyroxine uptake.. although you don’t feel any different from having a little bit! 

Lydia x

Hi Lydia,sorry to hear that ..well,after surgery they give me 2 options,one was to take the other half out and do the iodine treatment or to keep it and have a six months checks.when I saw him again he said ,they decided to don t take the other half out and have a six months check.what did they said to you about this cancer???how drastic is it??im sooo depressed,my life turned upside down ..I don’t take any treatment,my blood test came very good so I don’t need any hormones supplements so was a good news..I want to know more about this if you can help me ..

thank you 

adda xxx

Hi Adda,

I was told that a total thyroidectomy was the best option for me due to how my cancer presented (with a lump) which was misdiagnosed for such a long time. Plus I am glad I had that followed by radioiodine treatment as the chance of getting any cancerous cells is now almost zero as there isn’t any thyroid tissue left! As far as cancers go we are ‘lucky’ apparently although I never felt it! But we have the type which is one of the most treatable with very good outcomes. I know you still feel utter dread at the diagnosis but this will get better. I would question the option again with your surgeon and ask for further explanation on why they don’t think you need the other half out? 

Lydia x

Hey there

Thyroid cancer is treated very differently these days to even just a few years ago. It used to be that any sign of cancer then they immediately removed the whole thyroid and then gave a midrange dose of RAI. They then realised, after various trials, that that approach was similar to amputating your whole arm because you had a splinter in your finger. 

So these days they look at your lump, look at how it was encapsulated, then treat according to what's needed. So if you've had half your thyroid left in, then your lump will have been small, fully encapsulated, and not an aggressive variant.

As Lydia says, there's a full MDT meeting that takes place to discuss each case and determine the way forwards. So this isn't the opinion of one doctor, this is the decision reached by a full team of doctors who met with all your notes and results, and discussed the best treatment for you. 

As for diet, it's always recommended that you eat a healthy diet. But there's nothing specifically that anyone needs to change or avoid because of a thyroid cancer diagnosis.

Lass

Xx

Hi Lass,

thank you sooo much for writing that for me,I feel more confident now,I saw the surgeon last week and the thyroglobulin test came very good,he’s very happy with my results and I will see him in 6months time..

regarding about the other half of thyroid,is working normal,I don’t need any hormones supplements..the nodule was perfect encapsulated,didn’t spread to the the glands,no micro calcification..they were surprised cos was cancer,nodule was perfect round.what he explained to me was,could be some seeds left in the time when they removed the half of the gland,couldn’t really clean around because there are some nerves and other things they didn’t really want to touch but if that seeds starts to grow they will notice on the scan and they will see a diff when they will check the thyroglobulin.

other thing what he mention,in case that seeds are there,but is not necessarily my immunity can fight against them ..

or if the seeds starts to develop they will go on the other half of the thyroid and they will not spread somewhere else,first they will go on the gland..

adda xxx

Hello  sprry to hear you have been going through all this stress. Your account is the same as my child's situation exactly. They did later remove the other half of the thyroid. It was about 9 months later when they reviewed the tumour before sending to a university for research. 

That's not to say you will need that extra work. The treatment you had seems to be the normal protocol for that type and grade of tumour. 

It's worrying for you I bet, not knowing? I understand these tumours to be pretty slow growing so the advice we were given was to watch and keep tabs on your health and how you're feeling. A check up every 6 months will highlight any recurrence or concerns to the medical team. 

Rest assured they will act if anything indicates trouble on those reviews. We had a bogus high test result a few times and the doctors were quick to get the medication increased and schedule a review the following month to check it worked. 

Fingers crossed. Hope this is he last you see of the tumour. 

Heya Adda,

That's fab news about the thyroglobulin! Long may it continue.

Just to clarify in case people get confused, the seeds are cells. It's not like a plant where there are seeds that then grow. What they may have left behind are cells, but as your nodule was well encapsulated then that's highly unlikely. The thing with thyroid cancer is that any thyroid cell with the inclination can decide to mutate at any time, and become cancerous. That's what happened in the nodule they removed, so hopefully that's the end of it.

Also, tracking thyroglobulin while you still have half of your thyroid just doesn't work. Thyroglobulin, like all hormones, fluctuate depending on the time of day, what you've eaten, other hormone levels in your body, and lots more. So when there's half of a thyroid left, it's very much the ultrasounds that they rely on to detect recurrence.

I'm afraid as well that he's not right in saying that if it decides to come back, it will come back in the other half of the thyroid first. There are a few people here who have had it come back elsewhere, or had it spread somewhere other than their other half. Myself, I only had thyroid cancer in one half of my thyroid, but it had spread to most of my bones. The other half of my thyroid was perfect. There was no cancer and it was working perfectly.

Now, I've not said any of this to scare you, so please don't start to panic. Statistics say that you won't have a recurrence and old age will get you before anything thyroid related will. But I just wanted to make sure you had the facts and weren't misled by the doctor, as many have been before.

Lass

xx