Hurthle cell cancer diagnosis

Hello there, 

I can empathise, my experience of being diagnosed with Hurthle Cell Carcinoma was similar to yours.  I had to chase up the results after my first operation for nearly 7 weeks and was  told the nodule was cancerous via a phone call. I suddenly thought to ask what kind of cancer it was at the end of the call otherwise I don't think I'd have been told! 

My advice is to keep in contact with the department and the GP yourself to ensure everyone has the correct information  for your care going forward. I've had to do a lot of the admin myself! It shouldn't be like this at all as we're already dealing with the shock of the cancer diagnosis but sadly, I feel that this is quite a common situation.

I hope everything goes well for you for the completion surgery and you keep in touch through the forum here to let us know how you get on. 

Thank you for your reply,

it’s comforting to know I am not alone with this. I just want to make sure I get the right treatment and information. 
can I ask if you had RAI treatment following surgery?

You're very welcome, we're all in this together.

Yes, I had my completion surgery last August when no more cancer was found and the RAI last October. Do you have any idea yet if you'll need RAI yourself?

Hey 60s babe,

I am so sorry that you have had to chase up your results too. I am now over 7 weeks since my biopsy and still no results, no letter, no contact. I have been torturing my GP and they have had no results.

I have been in contact with the consultant secretary who said that my results were in but no letter and then I was able to tell her that another secretary contacted my consultant before Christmas to email her asking her to write me a letter. I informed her that my case has been referred to the multi disciplinary team. I asked her when they would meet up and she said maybe in the next few weeks. 

Thankfully I have a private consultation with an ENT doctor who I did see back in October who wanted to help me so much but I believe he was blocked by my trust as he was going to cost more money than going through endocrine. Fingers and toes crossed he can tell me what the results say. I am not feeling too optimistic about the results. I'm not going to lie. My lump is the entire way across my neck I am talking 5 inches wide. 

How are you feeling now are you in any pain? Thinking about you. Hoping for positive outcomes for all of us x

Thanks  River 71, RAI was mentioned but not expanded on. I suppose it will depend on histology from rest of the thyroid. I was told that Hurthle cell is good at travelling via blood and lymph and this is why they do the completion surgery. 

Did you get any specific information about Hurthle Cell  cancer from your consultant? 

how did you feel on the Levothyroxin? And after RAI?

Thank you so much for responding to me. it’s difficult as I feel fine and had no symptoms of any lumps. Just feel better again following the first surgery! 

Hello keeping it fresh, I do feel for you, my anxiety has been through the roof the last year with the waiting. 
I feel fine at the moment as no physical symptoms and the first surgery went well, just very tired and not sleeping well. Just taken a weeks annual leave and been catching up on things with my kids and husband and getting my daughter ready for her return to university on Sunday, I have to drive her and all her stuff each term and back so pleased that my surgery is scheduled during her term time! 

I had full access to GP records and they didn’t receive any results to date about any of my biopsies!  I know there is a wait most areas but it appears to be different in other departments in my hospital as my husband had much quicker turn around when having biopsies and tests for prostate cancer. He had an hour and a half appointment with a nurse specialist and lots of information re surveillance as it is too early to operate. 
I was in for 10 minutes for my appointment. 
as long as the surgery goes as well as last time I will be happy! 
hope you hear soon x

To be honest it is probably because I live in Northern Ireland and our government have not met in the same building realistically for almost a year which is a joke. So all parts of the health service, schools, public transport etc is affected.

I myself am a carer and we can't even get  pay rises as there is no government to authorise and support us.

It can only get better and get answers soon. I have to laugh 60sBabe or I will cry. That is how I handle tough things in life. Chuckles the clown

Hello again,

The surgeon explained to me after my first operation that as my nodule/tumour was 6cm long that RAI was recommended. Do you know how large your cancer was?  They might just be warning you of what your future treatment path could be perhaps? I didn't get much info about Hurthle Cell in particular really other than the surgeon mentioning that it's a slightly more serious diagnosis than general follicular thyroid cancer.

The RAI was pretty straightforward, rather boring to be in an isolation room, so my advice would be to take plenty of things with you to occupy yourself with. The Nuclear Medicine team asked me if I wanted my phone wrapped in plastic to protect it from radiation from my fingers  so I went ahead with that, quite strange! I was only in the isolation room for two days which I was pleased about.

I've felt very tired since then and it could be due to the RAI as it causes fatigue for up to a year or because of the high dose of Levothyroxine or a combination of both, I suppose. I'm waiting for my three month follow up Oncology appointment where I'll ask if the Levothyroxine can be lowered slightly to see if that can help my energy levels a bit.

Thanks, that’s really informative. My nodule was 3.5 cm so smaller and contained. I’m a bit worried about taking time off sick again for RAI but if it’s only for a week that’s not too bad. I took time off earlier this year when my husband was very ill. 

it’s the feeling of not being  in control of your life. I will expect a year of appointments again.

I feel fatigued most days still but has improved, almost 8 weeks post first op and I had a low vitamin D. I started the Zoe eating plan 4 months ago to boost my energy levels and trying to get back on track after a few blips over Christmas, to see if this helps with energy levels. 

I didn’t realise that you have to stay in hospital for RAI treatment?

I hope that your energy levels increase with a change in the dose of medication. Thank you so much. 
may least I have some questions I can ask now.

I hope your oncology appointment goes well.

I think the general info you'll find online about RAI quarantine times varies from  around 2 days to 6. It might depend on the strength of the radiation that you're given  and I know that some people " pass"  the radiation quicker than others too. I was allowed home from the isolation room at the hospital on my second day because I live fairly close to the hospital so wouldn't be in the car for long with my husband who was driving. I was told to sit in the back of the car as far from him as possible so it felt like I was being chauffeur driven! 

It's a long road with thyroid cancer, definitely. I found the lump on the side of my neck in September 2022 and it's now getting on for 16 months later and I'm still not sure if I'm cancer free. It's a test of my patience and resilience for sure! You have your husband to think of as well, it must have been a real shock for you both to have been diagnosed with cancer in the same year. 

Let me know if you have any other questions and I'll try to answer them.