Results / Anaplastic Thyroid

Wishing you all the best for your appointment!

Well the results are in as they say… and it’s 50/50.

good bit is main tumour shrunk. Bad is the lymph nodes in the neck have multiple tumour growths.

now being referred for surgery but told this is unlikely., and would be a massive operation if it did happen. Other options are tablet radiation and a stronger chemo but now require a further larger biopsy first…

have been given the all clear for a week away so off to Turkey on Tuesday… watch this space!!

Ah I see, a deserved break I think! Side question, how do you do with finding travel insurance? That's what's put me off going on holiday so far...

Hope the weather is better than here, that definitely effects the mood I think!

I use Staysure annual policy they have been great. If you choose they will cover everything, or every eventuality that’s not linked to your current health issue. They are worth a chat with in my humble opinion!

A little update, not great reading..

hi all

I am

still in hospital, 9 weeks today. Sadly another new tumor in the neck has appeared and biopsy has shown its full blown Anaplastic. No further treatment for me available so moved into the palliative care team.

i was told Saturday (it’s Wednesday now) I could go home with the appropriate care from district nurse team to pack my open neck wound, and to enjoy what time I have left. However that was the extent of the information given and was told would be home by today. A combination of not joined up communication withjn the hospital and externally means this has not happened.

on top of that, the Doctors have decided I cannot go home as the care agreed is not enough! So now trying to find a solution as I am not needing a hospice bed, it’s just for a dressing management reason! It’s so frustrating.

i am sat here wasting days that I don’t really have left to waste. No one has put a specific time scale on but listening to the different nurses and Doctors and also the new information from Palliative team we are taking weeks not months. All I want is some time back home to see everyone whilst I can enjoy.

the question that I’ve been asked (and ask myself) is was the surgery worth it? Well looking at me now the simple answer is no. I’ve had 9 weeks of constant pain, over 20 hours of surgery, and a massive emotional costs not just to me but my wife family and friends. 

the counter point to that is how long would I have lived without the surgery, well we will never know.

everyone has to make a choice based on what they feel at the time, and I am comfortable with decisions made. 

so I face the next few weeks with some trepidation. But not fear. I am content with my life, and other than cancer in a good place. At least I have had the time to put things in place to make life after I have gone easier for those left behind, I appreciate not everyone gets that chance.

So good luck to anyone reading my little story, Anaplastic Thyroid Cancer is really a bugger, but maybe they have learnt something from my treatment that may benefit others. After all they told me 8-10 weeks, and that was 10 Months ago so who’s knows! I might surprise them all and see my first wedding anniversary in September after all!

dave 

Hi Dave!

Gosh I'm sorry to hear all you've gone through! Did you make it to Turkey?

Communication between colleagues and department seems to be a big factor (or lack thereof) to people's issues :(

Thinking of you and wishing you all the best, hope you get some clarity soon.

Yes we did have a fantastic week in Lara Beach very lucky with the weather at 28c.. a great honeymoon and the hotel went the extra mile for us as well. Special memory for us both.

Hi Dave, I'm so sorry to read your post but thank you for the update and for your reflections on your treatment path. Such a shockingly aggressive thyroid cancer variant. 

What a frustrating lack of coordination between your teams and at such a crucial time for you, it's unbelievable! Just the last thing you need when time is so precious! 

Good to hear you were able to make some happy memories in Turkey. Let's hope you keep beating the odds and can celebrate your wedding anniversary x

Oh my, I feel so bad for you Dave!

Hopefully you keep defying the odds and proving things wrong.

Treatment and choices are such a nightmare so you may or may not have decided on the wrong course.

I hope you get to spend your first anniversary together, stay strong, big hugs

With all your information given here the amount of people you will have put at ease or informed further and will for years will be vital to some people so thank you for sharing your story