anyone opted for Watch and Wait with indeterminate nodules thy3f? Looking for people with similar previous experience to make up my mind

[Indianyellow]

hi everyone

just wondering if anyone ever had the courage to opt for wait and see tactic with indeterminate nodules? How often did manage it? How did you feel in the end? What made you make that decision?

my situation is that I have two indeterminate nodules on either side. Doctors recommended total thyroidectomy. Because doing hemi will still leave them in the dark about what’s on the other side. My nodules are thy3f, risk of malignancy from 10-30%. I have 70% cgance it’s not cancer but I cannot know for sure. I’m reading that with my type of nodules it’s a great area. It poses a difficulty around the world to diagnose those.

On another note, I noticed my nodule a year ago… tge doctors were slow to pick up my case… it went in the wrong department etc etc… anyhow it’s been a year. And I’m the same. Just fine.

If anyone was in a similar situation please share your experience- I’d really appreciate it.

mist gard to make a decision when i do not have a diagnosis and doesn’t look like I will. 🤯

Thank you

[Beads]

My story is slightly different, my thyroid hasn’t worked for a while, I had a calcified cyst on the thyroid picked up by chance during a staging scan for kidney cancer. Wasn’t told, found out when I got the full pack of hospital records. I took this to the GP as doctor google says calcified cysts are nasty. GP sent me for an ultrasound.

The ultrasound picked up a 20x12x17mm calcified nodule, level 4, suspicious and an equivocal, level 3, 10x7x9mm nodule in the left lobe. The right lobe has several nodules with a maximum diameter of 10mm and an 8x8x8mm cystic nodule, which are classified as normal. In addition I saw the screen during one of the subsequent ultrasounds and saw the ‘classic giraffe pattern’ which is what the Hashi thyroid looks like.

A 2 week referral went through for the left lobe nodules, flowed by a barium meal because I can feel the lump (internally) on the left side of my throat, and a repeat scan which downgraded the equivocal nodule and attempted to biopsy the large calcified one. A repeat scan and attempted biopsy (this time they got the needle through but still didn’t get any cells) at a larger hospital followed.

At that point my options were either wait and see if anything changed or have the left side removed so they could actually look at it under the microscope. As I’ve not long gone through surgery for the kidney I opted for the wait and see. I had a scan scheduled for last December, 6 months after the biopsy one, which showed no change from the previous one. As there was no change we’re still on a watch and wait. My next scan is scheduled for December this year.

So with your nodules, have they done biopsies? Are they getting in the way of swallowing (mine seems more prominent and ‘feelable’ when I’m feeling under the weather)? Does your thyroid work normally (coz that makes a big difference, mine doesn’t work so if it comes out it’s no different to it staying)? Have they given you a schedule for the watch and wait? This would put your mind a rest that you’re not reliant on the doc to re-refer you if you fell like there’s changes, if you know what they’re planning, that you’re still on their books.

[Indianyellow in reply to Beads]

hi there, thank you for sharing your story. I hope you are feeling ok.

My biopsies were done yes. Thy3f is the biopsy result. On both. I have thyroiditis… but I had a baby over a year ago and am still breastfeeding. Sometimes thyroiditis is postpartum. I never had issues before… so I’m not sure if my thyroiditis is pregnancy related or not. My hormones are balanced and normal. Just high antibodies which they say is in line with thyroiditis. I’m no closer to deciding. 😭🫣

[Batty1]

I would want a FNB before I opt for thyroidectomy and you need to post your complete thyroid blood test results (FT3, FT4, T3, TSH and Antibodies) with ranges here.

[Indianyellow in reply to Batty1]

The biopsy result is THY3f. All hormones normal, balanced. Antibodies high. I do not have a breakdown. How would that affect the decision to have TT or not?

[Batty1 in reply to Indianyellow]

Normal is what doctors like to tell us about blood test … I for one like to actually see my lab results to determine what is being told to me is correct… I went too many years believing everything doctors would tell me to only have everything go sideways which may have been prevented if I would have actually cared enough to look at my bloodwork and ask questions…. If you have thyroid cancer thyroidectomy isn’t really avoidable … if you do decide on thyroidectomy I highly recommend doing all the above labs PRIOR to your surgery so you have something to go back to when your trying to normalize your thyroid levels.

[Indianyellow in reply to Batty1]

Ok, I do see your point with knowing the blood work in depths. And I get your point this is important in fine tuning hormones after TT.

However my question is different: I’m trying to decide whether to go for TT or not. The whole point of my question is that I do not know if I have cancer or not. Doctors’ advice is DIAGNOSTIC TT. I can only have a diagnosis AFTER surgery.

With biopsies 30% of cases are indeterminate. They cannot give a diagnosis. There are two types of indeterminate nodules after FNA thy3 and Thy4.

My biopsy showed indeterminate result of Thy3f. Risk of malignancy 10-20%. It is a lower risk than class thy4. Are you trying to say that it would be the blood test and not the biopsy that would determine the diagnosis? I’ve never heard that this could be done from a blood test. Could you share specifically what blood test to take to diagnose if it is cancer or not?

[Batty1 in reply to Indianyellow]

I don’t think anyone can tell you what to do …. Im thyroid-less because of “cancer” and it has not been and easy road most endocrinologist will call you good once your labs are within the magical range and for a lot of us it’s not so magical … this is why it’s important to know what your thyroid labs are.

I wish u luck you have a hard decision.

[Beads]

Have they given you a schedule for the watch and wait? Have they given any information regarding how quickly it would grow if it were cancer and the possible outcome?

Answers to both questions are relevant to your decision. If they’ll monitor your thyroid, through ultrasounds rather than blood tests, each month or every three months then they’ll pick up any changes faster than if they’re only going to scan once a year. If it’s likely to be slow growing then you can afford to wait. If the treatment will be the same and the effectiveness doesn’t drop by waiting, again you can afford to wait.

Ultimately it is your decision, but they really should explain all the ins and outs so it is an informed decision. More so because your thyroiditis may be transitory post partum, you don’t want it removed if it’s going to start functioning again if it’s not cancer. However, if it is then you want to give yourself the best treatment.