Unsuspected Cancer and Full Thyroid Removal

I just wanted to see if others have been in a similar situation and find out what your experiences were.

I'm a 32yr old female and found a lump in my throat last September. It ended up being that my left thyroid was enlarged to approx. 3.5cm and it was part solid and part liquid. My biopsy reduced the size to 2.5cm and it came back as negative. My my endo recommended leaving the left Thyroid in unless it was problematic for me and I wanted to remove it.

I went to see a Surgeon so I could understand exactly what was involved and between the two week period of each appointment the Thyroid bleed again and increased back to 3.5cm.

The Surgeon recommended that I remove my left Thyoid due to the fact that it beld for a second time and would continue to do so.

I went for surgery 2.5 weeks ago and just found out to the surprise of myself and the surgeon that it contained papillary cancer, 1.2cm in size.

He's given me two options,

First option is to leave my right side in but the right side has some small nodules on it and he cannot guarantee that it doesn't contain any cancer cells and that given that my first biopsy was wrong we can't really test whether any will appear.

The second option is to remove my right side, go onto Thyroid medication which will reduce my levels. By doing this they can test my levels and if they are elevated they know there are cancer cells.

With both options the Surgeon has advised that I won't need RAI Treatment.

4 Replies

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  • Welcome to our forum,

    I am sorry you have a problem with your thyroid gland. I have hypothyroidism but someone who has had a similar experience to you will respond and give you their experience.

  • Skyek, It's not always considered necessary to do a complete thyroidectomy when small papillary cancer is found. The fact that your doctors are giving you the option to choose to retain your remaining thyroid lobe and aren't recommending completion thyroidectomy and RAI means they don't think you are at high risk of papillary cancer in the nodules.

    There are several members who have had micropapillary cancer and either weren't given the option or declined complete thyroidectomy.

    Before you decide whether to have completion thyroidectomy please bear in mind that doctors overstate how easily thyroid hormone is replaced with Levothyroxine. It can take months to find the optimal dose of Levothyroxine and you may experience hypothyroid symptoms in the meantime.

  • Thanks Clutter.

    I'll definitely be investigating more before I make a final decision.

  • Hi Skyek,

    I had my right thyroid lobe removed nearly 2 years ago now for suspected papillary thyroid cancer, I had follicular variant of papillary thyroid cancer, and I did not have Radio Active Iodine because the cancer was encapsulated in a calcified nodule. I'm now hypothyroid and have had numerous changes in my medication for the past 2 years and I'm still not better, it's a long road to recovery!

    Have they done a fine needle aspiration (FNA) biopsy on both the left and right thyroid lobes? I only had a FNA on the right lobe and it came back as a stage 5 cancer but down graded to a stage 4 because the hospital that did the test did not normally do this type of biopsy and they weren't confident with the procedure. Stage 5 is 100% cancerous whereas stage 4 is 80% cancerous and when the consultant said were not sure it is cancerous I said if it's 80% then it is cancer, and it was! You could ask for a biopsy of the remaining side and see what the results are and then decide. There's no rush at this stage because thyroid cancers are very, very slow growing and you can adopt a wait and see approach whilst you find out all the options. I wished I'd waited but I wasn't given a choice really and had surgery within 3 weeks of the FNA biopsy. I could have kept the cancer for some time to come as I'd had the cancer for at least 4 years and probably longer but it was causing breathing problems at night and I kept waking in the night choaking.

    I hope my experience helps you come to a decision but you are very welcome to PM me should you just need someone to chat to.

    Take care,

    TT xx

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