Papillary Thyroid Cancer

[judithclaire]

Results back from the biopsy and its cancer. I feel totally in denial.

Does anyone know what alternatives there are to a total thyroidectomy? That's what they want to give me. Is there anything I can do in the meantime?

I'm just groping for answers. My sister has papillary carcinoma too which is why I got tested. total shocker!

[shaws Administrator]

You will be reeling as you probably didn't feel unwell either. Others who've had a TT will respond and I hope you have a good Endocrinologist who will prescribe for you a replacement dose of thyroid hormones in a T3/T4 combination at the very least. Enquire before your op what is the usual to be prescribed and put a new post up for additional comments.

New Resarch has come to the conclusion (more than one Research Dept) that many feel best on a combination of T3/T4. Whereas most Thyroid Associations only consider levothyroxine (T4) as a replacement which doesn't suit everyone.

[judithclaire in reply to shaws]

Thanks so much shaws, I've been on levo before and it really was a problem. T3 only now, so its good to know this.

[Clutter]

Judithclaire,

I'm sorry, you are obviously very shocked. Thyroidectomy is the recommended treatment to prevent spread to the lymph glands and throughout the body. I don't believe there is any alternative to thyroidectomy in the UK.

Depending on risk factors which are calculated according to your age and the size of tumour your multi-disciplinary team may recommend radioactive iodine ablatement (RAI) to mop up any stray thyroid cells remnant in the thyroid bed and loosened during surgery.

I had completion thyroidectomy 5 years ago to rid me of Hurthle cell carcinoma which is a more aggressive type than papillary. I had RAI because risk factors for recurrence were high but I have been in remission since and now only require annual examination and blood monitoring.

I recovered quickly from surgery and scarring is barely noticeable. I had problems when I was switched from T3 to Levothyroxine but am fine now on T4+T3. I see you have already been taking T3. I was prescribed 3 x 20mcg T3 daily until I had RAI. ThyCa patients are often advised to keep TSH suppressed <0.1 which reduces the likelihood of recurrence so we are less likely to be jerked around by doctors increasing and decreasing dose according to TSH levels.

[judithclaire]

It is good to hear such an informed testimonial from a true survivor. Gives me courage to accept this. I'm so glad you've come through it and provide such an amazing service. Now I can know where to start. Many thanks.

[Clutter in reply to judithclaire]

Judithclaire,

When you can get over the shock of being given a cancer diagnosis you might take some comfort in knowing that papillary and follicular thyroid cancers are the most treatable and successfully treated cancers. The cancer is almost always completely removed by surgery and with the exception of RAI which is sometimes, but not always, required there is no follow up treatment like radio therapy and chemo therapy which make other cancer treatments so difficult.

[judithclaire]

Thanks reallyfedup. I just didn't want to jump into this before researching other options. I suspect you are right, though!

[judithclaire]

Stoat is good advice, many many thanks.