People with advanced thyroid cancer in the UK n... - Thyroid UK

Thyroid UK

141,202 members166,431 posts

People with advanced thyroid cancer in the UK now able to benefit from new thyroid cancer treatment Lenvima (lenvatinib)

Clutter profile image
7 Replies

Lenvima® (lenvatinib) launched in the UK on June 9, a treatment option for people with radioactive iodine refractory differentiated thyroid cancer (RAI refractory DTC).1 Advanced thyroid cancer is a difficult to treat condition with a poor prognosis and lenvatinib represents a significant step forward for patients in the UK.

...cont/d in link.

medicalnewstoday.com/releas...

Written by
Clutter profile image
Clutter
To view profiles and participate in discussions please or .
Read more about...
7 Replies
ThyroidThora profile image
ThyroidThora

Hi Clutter,

Thank you for posting this information regarding the new treatment for thyroid cancer.

I've saved a copy on my PC for future reference as I had my thyroid cancer surgically removed 2 years ago but there's still a risk that it will return sometime in the future as a more aggressive type of thyroid cancer.

Many, many thanks.

TT xx.

Clutter profile image
Clutter in reply toThyroidThora

You're welcome, TT. I've just had my Tg result 0.1 so I'm in my 3rd year of remission now.

ThyroidThora profile image
ThyroidThora in reply toClutter

Hi,

It's 2 years since my cancer was removed but I've never been told that I'm in remission. When do they tell you that you're in remission?

TT.

Clutter profile image
Clutter in reply toThyroidThora

TT, that's the flipping problem, it doesn't occur to them to tell you that once the cancer is cut out you are in remission.

I had total thyroidectomy and RAI so thyroglobulin is usually undetectable which means there is no thyroid activity, ergo, no thyroid cancer cells in the body. I had slightly elevated Tg on one occasion and was a bit upset until one of the MDT explained that there is very little chance of recurrence as long as my Tg remains <6.0. Apart from that one blip it's usually been undetectable and this time 0.1.

If you have half your thyroid remaining you will have thyroglobulin. I think it is usual to test Tg after hemilobectomy and use it as a marker to compare future annual Tg results. If Tg rises it may indicate recurrence which should be investigated.

ThyroidThora profile image
ThyroidThora in reply toClutter

Hi Clutter,

Thanks for explaining this as I do worry about it quite a lot especially, as I'm having blood tests every 4 months. I had my last lot of bloods done last month and the endocrinologist has now put me on six monthly appointments at the cancer hospital. However, I still see him every 6 to 8 weeks to try and sort out my medication because I'm not right yet.

On the other hand, my endocrinologist has told me that I am still at risk that the cancer might return. In his words, "low risk" and after doing my own research I am at risk of developing the more aggressive anaplastic cancer in my 60's hence my surgeon saying my life expectancy is 10 years. I'm 52 next birthday and i was 49 and a half when the cancer was removed.

TT

Clutter profile image
Clutter in reply toThyroidThora

TT, Doctors talk of life expectancy in 5 year and 10 year terms. It doesn't mean life expectancy is limited to 5 or 10 years.

5 year life expectancy for Stage I & II papillary and follicular cancer is almost 100%.

cancer.org/cancer/thyroidca...

Because you were low risk you didn't need completion thyroidectomy and follow up RAI. Biannual monitoring will pick up any recurrence and completion thyroidectomy and RAI will remove it long before it can transform to anaplastic cancer which is an extremely rare event.

I'm quite certain if there was a real risk of anaplastic cancer they'd have whipped your remaining lobe out to prevent it.

ThyroidThora profile image
ThyroidThora in reply toClutter

Hi,

When my right lobe was removed they didn't know what cancer it was or whether it was malignant. They tried to biopsy it during surgery but couldn't because the calcified nodule was so hard they had to do other tests which, could not be done during surgery. However, 2 weeks later I was told that it was follicular variant of papillary thyroid cancer and following my own research it turns out that this cancer returns as anaplastic thyroid cancer.

As regards life expectancy, my surgeon told me prior to surgery that my chances were very good and that I had 20 years but, following surgery he revised this to 10 years. I'm quite prepared to accept 10 years now and, if nothing happens, every year afterwards will be a bonus. I think I was stage 3 but cannot quite remember, and I was told by my surgeon at the time that they could do a completion thyroidectomy and take out the left side. However, they were hoping that by keeping the left side I would not need thyroid hormone replacement. How wrong he was!!!

Thanks for your reassuring words.

TT x

Not what you're looking for?

You may also like...

Historical Context of Thyroid Treatment in the UK

Even in the years I have been involved with thyroid issues, things have changed. Quite often, I...
helvella profile image
Administrator

Historical Context of Thyroid Treatment in the UK

helvella – Historical Context of Thyroid Treatment in the UK...
helvella profile image
Administrator

Time is Running Out! Feedback in support of the Scottish Parliament Petition needs to reach the Thyroid UK office by 3rd March

This is a re-post of my blog the other day, for the benefit of those that missed it and as a...
RedApple profile image
Administrator

Nature throid vs thyroid s (&where to buy nature throid from online when living in uk)

Hello, does anyone know where I can order nature throid online from (I’m in the uk), also...
Lhkn32 profile image

A Reply to the Responses of the Scottish Parliament to the submission by Thyroid UK of their survey on satisfaction with thyroid therapy

Just to inform that I've written a rather detailed rebuttal to the responses, one by one, to the...
diogenes profile image
Remembering