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Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Just diagnosed with HCC after TT - questions and worries

ButterflyGR89
Posted by

Dear people,

please excuse my English, I am very happy to have found you.

I come from Greece, I just had a total thyroidectomy and received the results of my biopsy, which showed a HC carcinoadenoma, 1.3 cm, which had not gotten out of the capse and the lyph nodes that had been taken away to be tested were all clean. Now I am trying to regulate my t4 dose and waiting for new directions to see what to do next, that is to decide if I will need RAI or not.

I saw that HCC is not very receptive to iodine, is that right?

My biggest worry is how will I know that the hcc hasn' t metastasised to more remote parts or the blood?

Did you have an mri before the TT? Because I didn' t have any other exams before the TT (just the biopsy of the thyroid node which led to the TT). I don' t know if here in GR there isn' t a general direction to have more exams or if it really wasn' t necessary.

My doctor said that first we will regulate the t4 dose that I need, then in 3 months I will just have an ultrasound to see if there is tissue left in the thyroid and only in 1 whole year a scintigraphy. Is that correct? Why wait a whole year? I am a bit worried.

For the time being, he said I don' t need RAI, since the HCC adenoma wasn t that big or gotten out of the capse, but during this 1st year I may need RAI if the blood tests are not good.

What 's your experience from the UK? Don' t you perform some scans, PET or mri sooner after the TT? And what screening method is best for this?

Location: Greece

Location: Greece
Age: 35
HCC
Posted by

Hello ButterflyGR89

I hope I can give you some reassurance in my response. I have also shared my case and care pathway with you for reference. Your tumour was small at 1.3 cm in diameter. I think you have reason to be optimistic. Your tumour has now been removed. Going through this experience to be told you had cancer is hard. It does cause worry, but on balance HCC can have a favourable prognosis. 

RAI is an attempt to kill all remaining thyroid cells in your body after your entire thyroid has been removed. After surgery there may be some parts of the thyroid the surgeon will not have completely removed. Very tiny parts of thyroid tissue. The idea with RAI is that it will kill healthy thyroid cells as the radioactive iodine 131 bonds with the thyroid cell and then dies due to radiation. Then thyroglobulin (Tg) can be monitored in your blood. Tg is produced by thyroid cells, so if after your entire thyroid has been removed followed by ablation treatment, Tg is present it should get picked up earlier before forming a secondary tumour. However, the RAI treatment is not like a switch, you are treated and the next day all thyroid cells are dead. It takes time for those cells to die. This is why there is a lengthy time delay. At 1 year, post diagnosis, your risk is re-evaluated to see the Tg level in your blood. If there is no Tg that indicates all thyroid cells have been removed from your body. This cycle should be repeated each year for many years.

I think you are questioning does HCC cells bind to radioactive iodine 131. The cells in a malignant tumour and those cells forming the non tumour thyroid are different. Your tumour had a 1.3 cm diameter but your entire thyroid is larger than that. For example, the lobe without the tumour. It is when the tumour cells escape from the tumour and move around the body via the blood stream or lymph nodes. Then it is more difficult to kill those cells as they are less likely to bind to radioactive iodine.

My case is as follows. 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. The scan result showed "glowing" areas in the thyroid bed, where my thyroid used to be. This is typical I was told as it is difficult to cut out every bit of the thyroid tissue without damaging other areas.

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.

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. 

I am due a Tg blood test around June/July 2020.

I wish you well!

ButterflyGR89
Posted by

Hello HCC,

you couldn' t have better explained it to me. Not even my doctor gave me this explanation. Now I understand why he spoke of RAI, even if HCC does not correspond to RAI so well. However, he mentioned that since summer 2019 there are studies showing that people with HCC do not need RAI at all, especially with small adenomas like mine, under strict surveillance of course of their Tg as you describe. That means that some healthy thyroid cells may remain in there and they may form again a carcinoma in the future? That' s how I understand it. Now I feel with RAI I could be more sure about having killed every possible source of tumour for the future.

Furthermore, he said that even after a TT, there may be other HCC cells that maybe couldn' t be totally removed with the surgery, small cells that cannot be detected with the microscope, if I have understood him correctly. All this causes more worries, but ok let' s remain optimistic, especially reading most other cases that had a good development. 

So you have passed the first critical year and are now just monitoring Tg levels? That' s very very optimistic and I hope very soon you will not remember anything of this whole story. 

One more question: how can we know if we had the minimum invasive type? Only from the result, or should the biopsy show it? Because I do not remember anything being written there concerning the type. 

Here in Greece, total thyroidectomy is the rule when it comes to ambivalent or potentially dangerous results concerning thyroid paracentesis. And thyroid cases are very common, probably due to radiation in the Balkans and Chernobyl in the past. 

I warmly thank you for your answer, you explained a field which I haven' t had the time to understand or accept, in a very understandable way. I wish you to get the best results possible with Tg. In June 2020 I will have my first blood test for TSH and Tg as well. 

Have a nice day!

Location: Greece
Age: 35
HCC
Posted by

Hello ButterflyGr89

I hope I can help ease your worry and doubt. 

A pathology report is created after your surgery. After your thyroid had been cut out it would have been sent to a pathology laboratory for analysis and classification. On that report it will state if the tumour was an adenoma or a carcinoma. A carcinoma is indicated when the tumour cells have broken out of their perimeter and/or invaded a blood vessel. An adenoma does not have either of these features. Therefore an adenoma is not a carcinoma. An adenoma may have attempted to have pushed out of the tumour's perimeter but not broken the capsule perimeter. Open https://documents.cap.org/protocols/cp-thyroid-17protocol-4000.pdf and see the diagram on page 12. An adenoma is shown when the capsule has not been penetrated by the follicular neoplasm inside the capsule e.g. Not yet (I) on the diagram.

There are many definitions on what "minimally invasive" is. There vary over time and by institution and country. This seems to be the latest I could find. A minimally invasive follicular carcinoma is an encapsulated tumour (contained within the volume of the thyroid) with microscopic penetration of the tumour capsule without vascular invasion. An adenoma is classified as not being invasive. It has not broken out of the capsule or invaded a blood vessel.

How to give your mind some comfort you are going to be okay? This is often over looked and why these forums exist.  

Given your small tumour size, it not being cancerous (no invasion as you had an adenoma) and your very young age all point to an excellent prognosis. You are being monitored and cared for just to make sure the Tg remains stable. RAI treatment can cause other problems and risk. Any medication and treatment comes with risk. It is the amount of risk that needs to be balanced.  This is the logic the doctor is considering. Overreacting and over treating an adenoma can introduce other risks that may not have been necessary.

The diagnosis does create a negative focus in your mind. It is sometimes difficult to avoid that negative focus and associated mental worry.  There are lots of retrospective studies on the internet providing statistical outcomes. All cases I have read suggest follicular adenomas ,either oncocytic or not,  are less aggressive and do not progress onto metastasis. These studies are used by doctors to decide the best course of treatment for you. 

I have not yet had my annual Tg test. I feel fine, still working under COVID-19 conditions in the UK, and as you can see in my case the extent of invasion was very much worse than your case. In fact, I think I had been walking around with thyroid follicular oncocytic cancer for 4 or 5 years without even knowing I had it. The initial shock does stop and the mental focus on this topic fades over time.

I think you can smile and be happy.

:-)

 

ButterflyGR89
Posted by

HCC, you are really wonderful. I couldn' t thank you more for the time and the understandable explanation, you opened a way for me through very difficult information. The thing that worries us most is the information we can' t conceive and now I really feel great comfort. I really wish you all the best from my heart and I believe it soon will be an experience to have overcome for both of us. 

:)))))

Location: Greece
Age: 35
Lass
Posted by

Kalimera

Welcome to the forum, though I'm sorry you need to be here!

I thought I'd go through your initial post and give you some information, then lead on from there.

HCC has a reputation as being less receptive to RAI than your bog standard follicular or papillary thyroid cancer, however it does vary from person to person as to if it's an issue or not. As a diagnosis, it makes no difference if it has spread or not as to how it reacts to RAI compared to others. It's always a bit more difficult to treat metastases regardless of if it's HCC or not. But there are plenty of people with a diagnosis of HCC who have found that they have had no problems at all and they may as well have just been diagnosed with papillary.

In regards to has it metastasised and how will you know - blood tests. With your whole thyroid out then you should have very little thyroid tissue left in your body. Active thyroid tissue creates a hormone called thyroglobulin, so with almost no thyroid tissue in your body your TG level should be down as close to 0 as possible. If it isn't, and is showing as being too high, then they know there's something else somewhere, and will do more tests and investigations to find out what's where.

Some people may have an MRI or a CT scan before their op, just to check their lymph nodes, but it varies from hospital to hospital. Generally, they just go with the blood tests though as it's cheaper to do.

Here, the routine is the same - minus the ultrasound. After you've finished the treatment and procedures they want to do and think you need, you are left for between 9 and 12 months. If nothing untoward has happened in that time then they give you a small dose of a different type of RAI, a type for scanning and not for treating, and then scan you to see where it's been taken up. So that's the standard practice throughout Europe.

So it sounds to me like you've got a good doctor who is following the standard procedures. So all good and nothing to worry about there! And that's your first post, so let me address a few things from later on.

RAI is not needed in every case, and in fact a lot less people are getting RAI now than did before after many studies have been done showing that it's a bit of an overreaction in a number of cases. You don't need to have had RAI for your TG to be monitored, because they just find what your base rate is after your TT, and then watch for any steady increases.

The job of the thyroid, or one of them, is to remove excess iodine from your body. So it's not that the RAI binds to the thyroid cells, it's absorbed by them - like little sponges just for iodine. Sometimes, some tumours stop acting like sponges, or not as effective sponges, and that's where issues come in. However there's no need for you to worry about that at the moment, because right now - you're not getting RAI because you don't need it.

How to know if your tumour was minimally invasive? From the histology. Once your tumour was removed it was sent to the lab and there they sliced it up really thinly and had a look at it. Minimally invasive isn't a 'type', but it's a description of what your tumour was doing. If you imagine a fasóli - I hope I have that right - in it's shell. The big shell is your thyroid, the skin is the capsule, and the bean is the tumour. If your tumour has stayed smooth and round, it's non invasive. If it's started breaking the skin of the fasóli then it's minimally invasive, and then it increases to invading the thyroid, and then invading the rest of your body. So when they looked at yours in the lab, they found that it hadn't broken through the skin, so the chance of it spreading anywhere else is very very low - which is partly why you don't need RAI.

I'm afraid the definition of an adenoma and a carcinoma HCC has given you are wrong. An adenoma is a benign tumour, a carcinoma is a cancerous one. It has nothing to do with capsular invasion or not.

They suspect my cancer was caused by Chernobyl, as I was living in a high fall out zone in Germany at the time, then moved to Scotland where they'd had some lovely radiation fallout too. Then, due to how advanced mine was, and how it is reacting to treatment, it's the same pattern as others who were confirmed to have been affected. So a bit of fun trivia for me! Lol

I hope you're having a good day!

Lass

xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

HCC
Posted by

Hello ButterflyGR89

I received my 12 month appointment letter from the Clinical Oncologist at the local hospital this morning for the 18th June. Feeling great as I've just returned from my daily exercise! 

We are all here to help and support you ButterflyGR89. Please reach out should you need too. You are not alone.

:-)

LittleGibbon
Posted by

I was also diagnosed with HCC, in January 2020, after a hemithyroidectomy, so am finding this thread really helpful. We are rarities I think! 

Sounds like with the size of the lump that was removed you can afford to be quite hopeful. Your age also means, I believe, that the prognosis is good. (I am 55 and my lump was 3cm but minimally invasive and my surgeon is being very positive.)

I am having the rest of my thyroid removed next week (12 May 2020). Surgeon thinks I won't need RAI but will confirm after the op. 

I hope you will keep posting and let us know how everything goes. I will too!

LittleGibbon
Posted by

Interesting about Scotland Lass. I have lived here since 1988. A friend has speculated that this might account for my being affected. I'm not so sure. It's such a mysterious form of cancer isn't it? I had no risk factors yet here I am. 

ButterflyGR89
Posted by

Dear Lass,

your explanation and time you devoted are so valuable to me. I really know everything I need now and am a lot less worried about the post op procedure here in Greece as well. So, tg is what I should be waiting for from now on. And the scantigraph in one year from now. I believe we do the u/s instead of the mri or ct in the UK, in order to check the lymp nodes and if any thyroid tissue has been formed or remained in the neck. 

HCC, I am so glad you received your appointment, the days will pass quickly and I wish you the best result. You gave me a lot of support and I will keep you posted. 

LittleGibbon, as it seems our cases are very similar, I wish you all the best for the upcoming op, it will be smooth and most people have no other problems afterwards, in a week you will not feel anything. 

Whatever they say about Chernobyl or other radiation, personally I went through so much stress the previous year and am convinced it had definitely sth to do with the doubling of the size of my node that led me to the TT. Although most doctors I asked do not accept stress as an agent. 

I follow everything you write, it helps so much! Thank you sincerely! Lass, your Greek was perfect, fasoli couldn' t explain it better!

Location: Greece
Age: 35
HCC
Posted by

Hello

The two hyperlink HCC specific articles, in this post, I found the most helpful. Rare indeed. I understood it was that about 10% of all thyroid nodules investigated were subsequently diagnosed as malignant. The malignant 10% represented all well differentiated thyroid cancers, papillary, follicular and follicular oncocytic variant (HCC). Of that 10%, 3% are follicular oncocytic variant (HCC). The first hyperlink 

https://academic.oup.com/jcem/article/100/1/55/2812718

In my search to understand what caused my HCC the second hyperlink was the best I could find. The paragraphs after Figure 1,2,3 suggests gene mutation. It also suggests a difference in the mutations between minimally and widely invasive types. I have read other articles that mention radiation exposure but only in the context of follicular non oncocytic type. From what I've read people have no specific answer to what the direct cause is. Faulty genes, environmental and/or life style or simple randomness. I could not find a definite answer.  

https://www.dovepress.com/huumlrthle-cell-carcinoma-current-perspectives-peer-reviewed-fulltext-article-OTT#ref9

The one comment made by my consultant was thyroid cancer was on the rise. He explained when someone has been killed in a road traffic accident (RTA) their bodies may be investigated by the NHS. He went on to say a lot of people do not know they have thyroid cancer as it is not recorded in their medical records but they do find thyroid cancers in these (RTA) cases.

Everyone is different in their approach to how they deal with their condition. I read many articles on thyroid cancer, how doctors used the tumour features to predict re-occurrence or death. I put in my tumour features to work out what was likely to happen to me. My thyroid was really diseased. It had three large tumours in one side and one in the other side. The dominate nodule (tumour) was 4.5 cm in diameter and designated a carcinoma. All my tumours were confined to the thyroid gland without venous invasion.

I am very grateful to our NHS and all the amazing staff that work there. I am ready for my outpatient visit on the 18th June. I will keep you updated.

May good fortune shine on you all! 

HCC
Posted by

Good luck to you Little Gibbon.

I found the second operation easier. I knew what to expect so I was more relaxed. The NHS is world class healthcare, really is. You are in good hands.

I've not had any issue taking Levothyroxine tablets 125 micrograms every morning for over 12 months now.

I will be thinking of you on Tuesday.

:-)

LittleGibbon
Posted by

Isn't Lass wonderful?! 

Came through my 2nd op absolutely fine with minimal pain. 

My surgeon said something interesting. My cancer could have been growing for 20 years! Hard to take this in really. 

I am a total stress monkey and worry about EVERYTHING. So, like you, I was thinking that my high anxiety levels in recent years (it's been a lot worse since the menopause) had contributed to my cancer developing. But now I'm as sure as I can be that this isn't the case, which is helpful. I think it would have happened anyway,  just "one of those things". 

LittleGibbon
Posted by

Thanks so much HCC. All good! Home Wednesday and apart from feeling a bit sad and quite tired, recovering well. (This happened last time too so I knew to expect it.) 

Fantastic care from all at the hospital, despite this being such a hard and heartbreaking time for NHS staff. I feel very lucky to have been given this slot and looked after so well. 

ButterflyGR89
Posted by

Have a nice recovery from now on, LittleGibbon! And your spirits will follow, I am sure! Now you don' t have anything to be concerned. 20 years? That' s a loooot of time, maybe that means they grow really slow? Which maybe explains why I had it so early in age? I don' t know. 

I believe we take the same dosage of levothyroxine, HCC, I also take 125 mg for a month now, I haven' t felt anything from the side effects like tremors or mood swings. Although I have to wait for the blood tests to check if it really is the correct dosage. 

Location: Greece
Age: 35