Thyroid surgery

[meghans]

My endocrinologist has just recommended I get a lobectomy. I have one benign module and one module that has been identified as suspicious by genetic testing so he says there is a 50% chance that I have thyroid cancer. I am not interested in having surgery if I do not have to! I have chosen for now to have another biopsy to try to get conclusive results. What else can I be doing here? What are alternatives to surgery?

[shaws Administrator]

meghans I am sorry I cannot answer but those who have had similar to yourself will answer when they read your post.

I suggest you edit your headline and add 'lobectomy/cancer?' and those who've had a similar experience when they read your post, will respond.

To edit post, click on the down arrow next to 'More' and alter question.

It must be worrying for you at present.

[Haze1975]

Where do you come from. I’m from the u.k. I’ve had to have my thyroid removed due to cancer. This is what happened to me. I got a lot of colds in 2013/2014. I saw a local doctor and she asked why I was so high in the front. (I’d didn’t realise) so she sent me for a thyroid check. They scanned my neck. And said I’d get the results back. They sent me for another scan and did a fine needle check and pulled out a simple, so they could test it. It was cancer. I’d seen a specialist that dealt with this and he said we will remove half of it as it had cancer in it. So they did. And they took a simple while they was there of the other half. It also had cancer in it. So I’d end up with a total thyroid been removed in the end. And 4 days of radio. And on Levo for the rest of my life. Also seeing two specialist one for the thyroid and one who was dealing with the cancer.

Have they tested your thyroid and told you it is cancer? Or just saying it might be. Because if it is cancer I’d don’t think there is any other way out. Apart removed. Maybe you should have a word with your specialist and asked if there is any other treatment. And can it be fixed by another way.

(Am not a doctor. But have had thyroid cancer treatment thou)

Good luck. And I’d hope you fine your answer your looking for. And if you wanted to talk just in box me. As I know it might be scary having cancer.

[Nanaedake]

There are several types of thyroid cancer. Medullary thyroid cancer can have a genetic basis. You need to get a copy of your hospital report in order to have all the information and research it. You could write to your oncologist and ask some questions such as - what kind of thyroid cancer is suspected. What is the evidence that indicates cancer. If you have had gene testing then what is the percentage likelyhood of you getting thyroid cancer based on the findings. If you've had an ultrasound you need a copy of that report too.

[Greekchick]

Hello meaghans,

I had a TT 13 weeks ago but did not have cancer. However, I will tell you what both my endo and thyroid surgeon told me:

Fine needle biopsies are 98% accurate. Even if the results are negative, cancer can not be confirmed unless they go in and do a biopsy during surgery. Even then, they do not confirm until the post op pathology report is available.

What this means is that you have two op

[Greekchick]

Sorry - I’ll finish my answer here - you have two options:

1. You can wait and watch. You will be monitored carefully with both bloodwork for cancer markers, fine needle biopsies and nuclear scans. You do not say if you are hypo or hyperthyroid or if you have Graves or Hashimotos.

2. You have surgery and the surgeon decides what to do during the surgery. He/she will give you all the possible outcomes depending on what they find when they go in.

I had multiple nodules, and the suspicious one came back negative with the fine needle biopsy (no cancer) before and during surgery biopsy was negative - however I had precancerous cells in one nodule that was confirmed in the post surgery pathology report. This does not mean I would have developed cancer, as it was explained to me - but that possibility was there.

Also, depending on the type of cancer we are talking about - there are different alternatives. Certain thyroid cancers require urgent surgery, while others may never advance to full blown cancer. Recent research suggests in fact, that most thyroid cancers do not advance and that a watch and wait strategy is advisable.

The question really is - how much uncertainty you can live with. Many people hear cancer and want the thyroid out. Others want to wait and see.

Living without a thyroid is difficult - there is no replacement and meds really are a poor substitute. The surgery is a big one - and don’t let anyone tell you otherwise.

You will need to decide what level of risk you want to assume. I would likely have watched and waited myself - but I had other issues - such as crushed windpipe and vocal cords - so TT for me was not optional. And I am not a doctor - this is just what I was told by medical professionals.

You have a difficult decision facing you. I wish you all the best and good luck. Positive thoughts your way. Hope this helps.