Just been diagnosed with thyroid cancer

Hi 

Warm welcome to the club no one ever expected to join :-/

I know very little about Thyroid Cancer but there is a very active Thyroid Group here you can check out and join to 'chat' with others who have had the treatment you mention and could help.

Macmillan also produce a Thyroid pdf booklet - it you haven't seen or been given a copy just click the cover image below to download it.

Hope this is of some help for now - good luck for a speedy, hassle free recovery from your surgery.

Take care, G n' J

Hi Nordic Jen

Hi LittleGibbon,

I saw your message on my email but was unable to find it here to respond to it.  I am sorry you are finding  yourself in the same boat as I did back in 2018.  I remember exactly how I felt when I was told I had HCC after at every stage of the investigation I had been told, it's fine, it's unlikely to be cancer etc etc and the the bomb drops and you feel as though you have been punched in the  stomach and at the same time someone has  pulled a rug from you under you. You asked how I was doing now, well, I am doing great thank you.  I don't know if you have read my profile but I had a second hemi including a neck dissection where they also took 29 lymph nodes out. Luckily no cancer was found in any of those bits and so, approx. 2.5 months after the second op I had a low dose RAI treatment, the one where they only keep you in the hospital for a few hours. After that I had the scan where, again luckily, nothing  else showed up and I was started on a 3 monthly monitoring "regime" this then moved onto 6 monthly checks and I am due my next appointment in May. So far so good. My blood results are good and my medication has been lowered over the course of 2019 to help with palpitations, feeling jittery etc and lately also because my markers have remained virtually undetectable.  After my initial shock and panic I can say now that I hardly think about having (or having had) cancer.  I know to start off with this seems impossible that you will  ever think this way but it does happen.  So hang in there.  The waiting bit is the hardest (well it was for me anyway, it used to drive me mad having to wait for weeks to hear what was going to happen next and then waiting again for it to happen etc etc.) but bear in mind that the health professionals know that Thyroid Cancer in general is a slow moving beast and so there is no real urgency. Again, easy for them to say when all you want is getting this thing out and dealt with immediately, aarrghhh! ...... but hang in there.  So, now you know why I have "lucky girl" in my signature, I consider myself very very lucky.     All the best Swichee xxx

Hello Nordic Jen

When the consultant tells you it's a follicular carcinoma with oncocytic features (HCC) it does come as a horrible shock. Followed by a surge of negative thoughts that can last for days, weeks, months. However, the are many reasons to be truly optimistic. I hope by me sharing my experience and research will give you some comfort that you are going to be fine.

I had a hemithyroidectomy  in January 2019. It turned out to be a large Hurthle Cell Carcinoma (HCC)., pT3a 45 mm diameter V0 (no venous invasion). I had a 20 mm tumour in the right thyroid lobe, found on the ultrasound scan, so I opted for a completion thyroidectomy. It took about 2 months for the completion surgery to be performed. Then opted for the radioactive iodine ablation treatment to kill any remaining thyroid cells in my body. That was about 2 months after the second surgery.  The 20 mm tumour in the right thyroid lobe wasn't cancerous. Then I had a scan a few days after taking the radioactive iodine treatment. It took about 6 months roughly from first surgery to the ablation radioactive iodine treatment.

Whilst this was going on I felt fine in myself, I carried on working except for the days of treatment and isolation days.

I've researched HCC a lot on the internet, wanting to know what future held in store. It does generally seem to have a favourable outcome. Especially if it is the minimally invasive type.

In your case, what happens next. Do you opt for a completion thyroidectomy and take Levothyroxine tablets for the rest of your life. Or stay as you are. The NHS and all the staff working in it are wonderful! (I owe my life to them).  Ask them what your options are. If the tumour was small, less than 40 mm, they may suggest monitoring your remaining thyroid for many years to come. Or suggest a completion thyroidectomy. In my case my decision was simple as I had a tumour in my other thyroid lobe. Your other lobe may be perfectly fine. There is contradictory advice on the internet regarding minimal surgery or complete thyroid removal followed by radioactive iodine ablation treatment.

This was the logic I remembered being told. HCC cells are less likely to be killed by radioactive iodine. If at some point in the future HCC cells were to spread in your body. HCC cells are less likely to bind with the radioactive iodine compared with follicular (non HCC) and papillary cancer cells. Hence, it is difficult to kill those cells once they are spread in your body. So, if your entire thyroid is removed followed radioactive iodine ablation treatment to kill off all healthy thyroid cells. You made all the decisions you could to prevent possible future HCC cell spread and possibly forming a secondary tumour elsewhere in your body. The other advantage taking this line is the thyroglobulin (Tg) can be monitored in your blood. Tg is produced by thyroid cells, so if after completion and ablation treatment, Tg is present it should get picked up earlier before forming a secondary tumour. However, this may be too heavy a treatment for your circumstance, i.e. may not be necessary.

You can feel real fear of the unknown, I did. I think you have many reasons to be genuinely optimistic. However, please talk to the NHS about what your treatment options are. Also take your time in making your decision.

I am one of many on this forum who are doing fine. Hopefully, you can draw some comfort and confidence from our stories.

:-)

Hi Dreamthief,

Thank you for your reply - I have joined the Thyroid Group now 

I'm gradually getting my head around it all, it does take a while doesn't it?! I saw my consultant last week and signed the paperwork, went through all the possible complications of surgery etc. so am feeling better informed and more positive!

Hope you are doing ok.

Best wishes,

So pleased for you. And thank you so much for your positive and supportive response. Yes, the waiting is hard, and gives you so much time to read up and worry yourself sick! - I just had no idea this is how it would be, that weeks would elapse between tests and results. (I had very little experience of physical health problems before this, so really didn't know what to expect.) I'm so glad you stayed around on this forum, to give people like me encouragement and hope. It's very much appreciated.

Hello Little Gibbon

Having been through the physical and mental process myself, I know what you are experiencing. I too had never had surgery previously.

From reading your experience in this forum, please do not worry yourself sick. It is hard waiting and the unknown does cause anxiety. 

Your tumour has been removed. Now it is more about the best course of action to prevent future re-occurrence. Or discuss even if it is necessary at all.

Reading the description of your tumour being a minimally invasive 30 mm HCC has an excellent prognosis. It has a near 100% 5 year cancer free survival. The 5 year metric is only used as a means to compare against the general population.

It is worth taking your time before deciding on the next steps. Talk to family or a friend and replay what you are thinking. I too know how hard it is waiting for those CT results.

Life can return to normal even if you have to have your entire thyroid removed, ablation treatment and have to take Levothyroxine for ever.  It worked for me. I hope my experience can give you some re-assurance that you will have a bright outcome too.

Best wishes. My thoughts are with you.

Thanks so much HCC. Your taking the time to respond, and so helpfull and positively, really means a lot.

Yes, whatever is proposed, if anything, I will make sure I take my time deciding. CT scan on Monday so by the time I next see the surgeon he will have a much better idea of what is going on and what needs to happen next.

The main problem at the moment is severe insomnia (which predates my realising anything was wrong, so I don't think is anything to do with cancer). Finally went to my GP about it today, and she has arranged for blood tests, so hopefully there will be a way forward with this. If I get enough sleep, I can cope OK with all of this and look on the bright side. If I am sleep deprived, it's a very different story. Today is a good day though, so I'm very thankful for that.

Hope things are OK with you.

Hello Little Gibbon

Thank you for asking. I am doing fine. Still working, life is fine. Enjoying life after being treated for HCC thyroid cancer by our amazing NHS! Basically back to normal life.

Try to relax during the CT scan. It feels a bit odd under the scanner especially when it is almost touching the tip of your nose.

I focused my mind on something positive and have faith that you are going to be fine. Maybe try to read before going to sleep. Something to take your mind away somewhere else. After I shower, I always sleep well. 

I really think you are going to fine.

Best wishes to you.

So helpful and reassuring. Thank you.

LG xx