Papillary & Follicular Cancer

Hi Allylearm 

I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Thanks for the reply, I did write up on my profile but it does not seem to show up. Presently it does not let me amend either. It has lost my profile picture as well.

That's annoying that your profile and picture have disappeared. I'll send a message to the moderators to see if they can retrieve it.

Got it working, its now complete until it vanishes again lol

Hi Allylearm, I'm sorry to read about your diagnosis, which sounds like a quite complicated variant. I have a different variant, medullary, and so sorry I can't be much help with advice for your treatment etc as they treat MTC differently but I do empathise as to lack of resources to read up on, as medullary is very rare too. My only thought was to tag another member, if she doesn't mind, TrinityTrace   who I believe has follicular variant papillary thyroid cancer and although this may not be the same, maybe she will be able to help more?

I hope you are able to get some more comprehensive answers from your team going forward, as I find it's the unknown in how these rare cancers progress that gives me and my daughter the most anxiety. Best wishes x

Hey Allylearm,

I have a similar experience to yours!

Was being investigated about another pain I had and through investigation found I had Graves disease, Christmas 21 I had a sore throat that lasted awhile and then noticed a lump on my left side thyroid! 

I had an ultrasound followed by an FNA which came back suspicious THY3A, MDT meeting followed by 2 more they arranged for me to see surgeon and in meanwhile did another FNA which came back even suspicious THY3F, decided to removed thyroid completely as with Graves may have been in my future, that came back as Follicular Variant of Papillary thyroid cancer with positive margins seen around vessels. So I had RIA in February 14th this year! Scan following showed only uptake only in my neck.

I've had to have my Levothyroxine meds reduced to alternating daily 150/175 as side affects and my bloods were all abnormal and I'm feeling ok now!

I've been having blood tests to monitor my thyroglobulin levels ready for the risk stratification they are doing in December to establish my risk of reoccurrence level and I have appointment for the 15th January for the results of that!

Any questions feel free to ask and I hope your recovery process is straightforward x

Hi TrinityTrace,

Your the first person who has similar prognosis from our pathology, you are further down this journey. I hope you are well and recovering. My sore throat is like what I got from my doctor taking it from my Nodule it took me three days for it to stop, it started again last week and is spasmodic and my scar tissue has went down. Information seems to be lacking in respect to either rarity or research limited. My scan and needle biopsy came back suspicious. My resulting treatment was full Thyroidectomy though it was on my left side my largest nodule was located and a smaller one in centre front.

I had sore throat up sides and not related to biops pain, cough, restrictive airway and choking bouts from before Nov 2023. I suffered daily headaches though not debilitating just hung their with throbbing pain. My energy levels were low and my sleep patterns not the greatest were worsening.

By the time of the scan and biopsy my adams apple was more pushed to right some 1cm and my larger nodule was more pronounced. It was the biopsy that declared that I had Papillary Cancer and the nodules were 5cm and 1cm. It was not until my Thyroid removal in Sept 24 that the Pathology report classified it as aggressive. I was switched Cancer team for future treatment. It was here that I received a more in depth Pathology report of its findings. The larger Nodule was 5cm across and 4 cm deep. It had breached its sack or covering in four places. These had moved into Lymph and Blood Vessels. It was a very aggressive, rare type Papillary Cancer combined with Follicular architecture with high Mitotic Count. The treatment which I am I am to receive from 6th Nov 24 will be larger doze RAI which will keep me an extra day in hospital though if my radiation levels do not recede I will need to stay further. My brother went through same procedure with Follicular Cancer RAI treatment he had to stay a further five days due to levels not decreasing.

The interesting part of my brother and myself Cancer did not mean it was heredity. I further could tell the Prof that my younger sister was being treated for Thyroid though not Cancer. That began a discussion that one other family had been sourced in Italy that had four members who had Thyroid Cancer and two who went on to develop Bowel Cancer. My brother succumbed to Bone Cancer after his thyroid was removed which the nodules were on both sides the size of the Surgeon fist. He had half his voice box removed but it also connected to his jugular which could not be removed. He lasted another 7/8 years before Bone Cancer spread throughout his body. I had been happy I did not follow my older brother cancer but only to change prognosis half way through treatment to be a combination of two.

Presently I have got over the sore neck and shoulders that prevailed post op. My cough is more intense but not regular and is like a machine gun but more chesty. I was very lethargic which still comes and goes and walks seem to bring it on with my legs at the knees tender/painful and thigh muscles sore and light weight if that makes sense. I find shopping can bring it on and rest after such exercise. My headaches have stopped after blood thinners stopped though may not be connected to my blood type which Reh B- which is thick and sticky type and I link to a lot of my funny ailments. I find Cancer is time related waiting for treatment then wait for report, wait for meetings, wait for return of calls, wait for scans, wait for findings. You wait a lot and though my journey has been a lot quicker than most. The high dose of RAI seems to be a conclusion though my CT Scan will tell me more. I have been told I will be closely monitored over the next few years as the Cancer has a chance of returning. I feel a fraud in many respects other than the scar all my ailments are not seen but felt or experienced from within. My life changing events are more to do with life style I can no longer pursue what I did and being off work due to fatigue and hospital appointments I miss the workplace experiences. I hope to be able to return end of Nov to Jan depending on how my Iodine treatment goes and my recovery. I am glad my treatment has changed in regards it is not life debilitating like my older Brother experienced in regards to isolation, coming of meds, etc. So now I await what will occur and scan reports, I came to terms very quickly through family experiences though find it more difficult for my family especially my wife. I like to read up and conclude my thoughts through knowledge. I am very realistic and would rather have it told straight than sugar coating it. So explaining my conclusion or thoughts on future find it difficult to pass on as everyone seems to take it as the end. I see it as a path which can take twists and turns but we all end up one way or another. How you travel the path is up to the individual, for myself enjoy the scenery as you pass there is always a better scene further on.

When life throws you Lemons make Lemonade

Well what I can reassure you on is that the fatigue does lessen!

After my diagnosis and been out on 175mg a day of Levothyroxine I had so many side affects, fatigue being a major one, diarrhea, heart palpitations, weight gain, headaches, and insomnia!

As I said they have altered my medication to alternate daily between 150/175 and I'm feeling much better, palpitations are less, my TSH and T4 are reducing as all my bloods were abnormal! I feel less tired during the day, I mean it's not completely gone but I have a bit more energy now. I didn't stop working, I had 3 weeks off after surgery and a week for RIA! 

RIA was actually ok for me, no ill affects and I just needed the one day in then segregated myself from my family for a few days in the bedroom.

It must be hard for you after what your brother went though, big hugs x

And I totally agree with the waiting for things it's such a stressful time and the waiting is soo bad! But with the dynamic risk stratification I understand why we have to wait for that as they correlate all the blood measurements throughout the year following removal to see the trend of the thyroglobulin, if it is reducing that's good so low risk, stays same it's medium and if it increases well that's high risk of recurrence. Obviously they don't just go off that, they give you an Ultrasound scan and I'm booked in for 3 separate days in December so I'll see what happens when I go but I know all that gets looked at to determine the risk!

Let me know how your RIA goes as it's not long now x

I will let you know as I am allowed my Phone or non keyboard tablet during RAI. I am on 125grm of Levothyroxine, my new Prof thought this was low but looking at last blood tests I was on a figure of 7 but not what it colarates too. All I can say he was surprised due to the cancer prognosis and that a low level of the drug would suffice. I am not up or down with my meds presently, I think my calcium meds played a part in my feelings and issues I had with post op. When they were stopped all my main issues stopped funny when I recall my blood thinners stopped as well at same time.

I worked in institutions for over 35 years, I am not keen on them which may come over as strange but there's always a atmosphere of gloom or intrepidation when I enter, either in work or as a visitor or patient. I do have feelings and may be more influenced than others.

Visiting the Beatson clinic was such an experience, thats where my feelings of being a fraud developed. I was not showing any signs the others as they sat in cafe with family and friends. I do not blame staff its just the way of things. The feelings of past visitors or how they felt must infiltrate the walls like all places with history.

I was able to use my phone etc in the RIA tbh, I know your having the higher dose so did they say you couldn't take/use them?

I work in care so see cancer patients especially end of life and I think this is what has helped me as I see how lucky I am for it to have been caught when it did and I'm not at that place they are.

We are not frauds for our cancers that is definitely felt more on the inside and just a little scar where we had the operation. But I do understand you feeling like we could have it sooo much worse and hopefully we don't ever get to that point!

Yeah the medication messes with us alot! They should have based that 125mg based on your bloods tbh so they will alter when you have another blood test.