Metastatic Hurthle cell carcinoma

Hi Dibbles,

I am sorry you find yourself in this position and I am glad this forum gives you a platform to do a bit of venting, safe in the knowledge that you are understood.

Anything to do with Hurthle Cell in the title  is of interest to me, because I myself was diagnosed with HCC in April 2018. When my left thyroid was removed it measured 10x8cm but the tumor itself was "only" 5.5cm. (minimally invasive, no vascular or angiovascular invasion). So I asked my surgeon if he could tell (with is experienced eye) during the operation  just by looking at the thyroid it if there is any cancer in there. He said no, imagine looking at an orange, you have no idea what is inside and there may be many different (non cancer) reasons why a Thyroid or Thyroid half might be enlarged. I thought I'd share this with you, hoping that this will give you at least one possible reason why the surgeon did not remove the whole thyroid right from the start.  I am sending you and your husband  lots of positive vibes and a virtual hug.

Swichee x

Heya

So sorry to hear of everything that's going on with your husband, but I'm glad you've found us here to vent off into the void and let it all out of your head. Sometimes, that's all we need, just to let it all out so that we can then move on and focus on what needs focused on.

If you want some feedback and more information on some of the things you've mentioned, then read on. But if it really was just a vent then feel free to stop reading here. lol

So first of all, I just wanted to pick up on your comment about him having to have 2 operations. I'm not sure where you've read that it is UK guidelines to remove anything larger than 4cm, because as far as I'm aware that's just not true. There are lots of people living with large goiters, much much larger than 4cm in size that the NHS will not remove as the only reason to remove it is for cosmetic reasons. There's a lady in the womb group whose thyroid is growing down into her chest, but there's no sign of malignancy so there is no reason for them to remove it. So with your husband, the FNA came back as a T3, so it was an investigative hemi they did, to see what was going on and get a proper diagnosis, and once they found out what it was, they knew they then needed to remove the other half. This is actually the most common route we see, where the FNA doesn't come back as conclusive so half is removed and then they decide if they need to remove the other half or not. Now, it used to be the case that any sign of cancer, the whole thyroid was removed. So if your FNA showed it was cancerous, you would have one operation as a full thyroidectomy. But it was still the case that if half were taken and they found cancer, then the other half was then automatically removed. These days those guidelines are more relaxed, and more and more people are being left with half of their thyroids in place and only having a hemi, which from the doctors point of view is much more agreeable than a lifetime on thyroxine. So from the sounds of things, the guidelines have been followed in your husbands case, where he's had a diagnostic hemi and from that they've decided he needs a completion.

The optimism of the doctors we all see annoys quite a few people. There's the common saying of 'thyroid cancer is a good one to get' that they often come out with, and often makes the patient want to slap them. It should really be clarified into 'if you HAVE to get a cancer, thyroid cancer is a better one to get because usually it's easy to sort out'. However in cases like your husbands, and my own, that doesn't work either. I can totally empathise with you though, because all through the start of mine the doctors kept being really positive and cheery. First it was 'you definitely don't have cancer'. Then it was 'well, once we've got the other half out then it'll be one dose of radiation and you'll be sorted'. Then it was 'well, we've just got to crack open your chest, THEN you can have the one dose of radiation and you'll be done!'. Then I had the radiation and I got the serious and sympathetic tone of voice call saying 'You should REALLY bring someone else with you to your appointment tomorrow.....'. So all the way through they kept on telling me everything was fine, and my body kept on proving them wrong, and I'm in the incurable class too as my cancer is also in my bones. I can't fault the doctors and nurses for being positive though and cheering me along, because in 9.9 cases out of 10 they're absolutely right. (I was diagnosed back when it was standard for any sign of cancer to remove the other half and automatically give RAI, that's not the case now) Usually it is just one op, or two ops, or two ops and one RAI. And they're right that usually thyroid cancer is a better one to get if you have to get a cancer. But there are a few of us who don't fall into the average case, and then those positive comments and outlook just make us go grrrrrr!

From everything you've written, and I'm not sure if this will bring you any comfort or not, but it sounds like your husband has been treated well and all processes have been followed to the letter. His FNA was inconclusive, so he was given a diagnostic hemi. That found cancer so it was decided he needed the other half removed and RAI given. After RAI he was scanned and nothing had taken up the RAI, does his hospital do a combined gamma and MRI scan? If so, then his mets must not have shown on either scan meaning they are small ones or within the bones. However despite nothing showing on the gamma scan, they still followed up with blood tests that checked his TG and not just his TFT, and found that there was still some thyroid cells somewhere. So they've followed that up with a PET scan and found where the blighters are, and are now dealing with them with EBR. So as I say, your anger is perfectly understandable that this is happening to your husband, but they wouldn't have done anything differently as all that happened is the way thyroid cancer is handled.

I was just wondering, as you've not mentioned it, have any doctors mentioned TKIs to you or your husband? They might have referred to them as lenvatinib or sorafenib? Those are the drugs they use to control thyroid cancer that isn't taking up RAI. They probably wouldn't want to start him on them immediately, but if his TG starts to increase then that will be when it's best to start taking one of them. The problem is that NICE have only approved the use of one of them per patient. So if he's on one for a while and then it stops working, NICE have decided that it's too expensive to allow him to then move onto the other to try that out. So there are a lot of people campaining to make them change that decision. But because of that, they try to only start people on TKIs when they absolutely have to, so that they can get the most out of them!

Anyways, if you did continue to read then I hope that something of what I've said has helped, and please do pop in any time you need to!

Lass

xx

Thanks for your reply lass. 

I haven't included everything that has happened, mainly because I'm posting from my phone and it's not as easy to type but also because there are some issues with events at the beginning. 

The guidelines I referred to were ones I downloaded in early 2019 and refer to thyf3 with ultrasound appearances suspicious of cancer combined with fna findings of hurthle cell changes. Additionally, his surgeon admitted that it was a tricky op, very sticky and therefore likely to be cancer (widely invasive and stuck right down to everything). I believe the operation should have been extended there and then, given the intraoperative findings. I believe this wasn't done due to time factors. 

I also believe he should have been given a PET scan much earlier on. They were far too reliant on the RIS being negative. 

His symptoms are worsening daily now and I'm terrified he will suffer a vertebral fracture +/- permanent nerve damage. 

I do think the only acceptable response to any cancer diagnosis is simply, "I'm so sorry". Being told that it's a good one, or the least bad one is just minimising the horrific nature of cancer. Regardless of whether it is likely to be curable or not. 

No further discussion re treatment options have taken place. We haven't even had contact from an oncology nurse except when we went to see a local cancer charity. 

We're fumbling around in the dark and it feels like there's an open pit somewhere near that we could fall into at any time. 

I don't know what to do about work. I don't know how the radio is going to go or how it will affect the kids to see their dad exhausted. I don't know anything and I hate it. I want to know if this will work but we just need to wait and see. I hate waiting and all we get for it is more bad news...

Sorry, that turned into a bigger post than I intended. 

Heya Dibbles, 

First off, never apologise for the length of a post. However long, or short, it is, is what you needed to say and get off your chest. So it's the perfect length every time.

I think in regards to him not having had a full thyroidectomy at the time of the first op, and also your query about the length of time before he had a PET scan, the best advice I could give would be to contact the PALS - Patient Advice and Liaison Service - team at the hospital. If you were to send them your queries and the report you downloaded, then they should be able to either get the answers for you or arrange a meeting with the appropriate people where you can ask them yourself directly. I think that you need those answers at the moment, so that you can then look forwards without all the what ifs and whys circling in your head.

The thing with the wordings around thyroid cancer is that for most people it isn't horrific, and that's what the specialists are trying to get across. For lots of people these days, it's one operation and that's it. Nothing else. There's even a movement to try and get certain types of tumour downgraded so they aren't called cancer anymore, because people jump to worst case scenarios that are associated with the word. So yes, your husband and myself don't fit into the simple category, so the reassurances they tried to give us were a bit empty. But we aren't the norm and we break the mold a bit there. And personally, I'd much rather have empty words passed to me than have countless others left not reassured that all would be well and told that they had nothing to worry about. But then I've had 7 years of living with this and have seen, done, and experienced a lot on this forum, others, and through the NHS. So I know my viewpoint comes from a different place than yours at the moment.

Unfortunately not all hospitals have specialist nurses. The nurses assigned at diagnosis are usually specialised in certain cancers rather than generalised oncology, and with thyroid cancer being a rare cancer, not all hospitals have the funds to employ a specialised thyroid Cancer nurse. However, there are more generalised ones for certain treatments that are more common. You often meet them at the first appointment for that treatment, or if there's a bank of them, you might meet one and are then given contact details to reach whoever is on shift at the time.

There are also Macmillan nurses, or nurses who work like Macmillan ones but who might be based elsewhere or funded through another charity. Here in Leeds for example, I had a nurse from St Gemma's Hospice help me out for a bit. She was excellent, and she helped me with benefits, pain relief, someone just to chat to, someone to answer my questions, and there was more she could have done too had I needed it. If you think your husband would benefit from a Macmillan nurse, or equivalent, you speak to your husband's GP and they make the referral for him. The nurse will then get in touch, and arrange a first meeting - that's how it worked here at least. But again, it comes down to funding as to how many are available and what the waiting list is like. But as they say, if you don't ask then you don't get.

Further discussion around treatment options will probably come after the radiotherapy is complete and they see what difference that makes. Doctors also have a nasty habit of only giving you the info they think you need to know at that moment in time. So if you don't ask questions, they won't give you any extra info. I think it's partly so they don't overwhelm patients, and partly so they don't over complicate things. So they keep it simple and brief, because that's what a lot of people want and all they can handle.

Regarding the radiotherapy, have you reached out to the people in the radiotherapy group? If you say what he's having, how many times, and where - then someone with similar mets of a different type of cancer will hopefully respond with their experience so that you know what to expect. Unfortunately, in a way, they've only talked about giving me radio. I've managed to avoid it so far, so I've no experience to share on that front.

Speaking of other groups, have you also reached out and posted in the caring for someone with incurable cancer group? Everyone there is lovely, and they're in a similar situation to yourself in that someone they love is going through this, and there's nothing they can do to fix it and all feel a bit lost at times. 

Regarding work, I don't know if it's yours or your husbands - or both - that's on your mind at the moment. But I think it's probably worth a call to Macmillan to speak to their workers rights team and just check where you both stand legally. Then also speak to their benefits team to see what it would mean if he left work due to I'll health and you left work to care for him. With all the facts, figures, and entitlements, then hopefully you'll be able to see where you stand legally, and what's best for you and your family now and in the future.

I hope some of that is some help, and if I don't hear from you again this evening I hope that you managed to get a good night's sleep. 

Lass

Xx

P.S. Radiotherapy group - https://community.macmillan.org.uk/cancer_experiences/radiotherapy/

Supporting someone with incurable cancer group - https://community.macmillan.org.uk/cancer_experiences/nearing_the_end/ (Please ignore the words in the link, they're really old. I've emailed the Admin to see if that can be changed!!!) 

Carer Group - https://community.macmillan.org.uk/cancer_experiences/carers_only/

Friends and Family Group - https://community.macmillan.org.uk/cancer_experiences/being_a_relative_/

Those last three are all similar but different. You could join all three, one, two, or none. But I'd def suggest having a wee browse through each to see if any resonate with you, as you might find it helpful talking to people in your situation too. 

L

X