Tall Cell morphology PTC young patient

Hi Carlotta and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi Carlotta, I don't have your variant although I do have a rare thyroid cancer type too (Medullary). Oh and I'm certainly not young haha, so no help there sorry but I just wanted to reply to your post to welcome you to the forum as I saw you hadn't had any replies yet. Sorry you find yourself here after your diagnosis.

It certainly leaves you feeling a bit lost when there's not much information or pooled knowledge and experience on these rarer types. I know it feels daunting but do as much research from reliable sources as you possibly can (not just google which can have a lot of inaccurate information too) and gather as much information to be ready for when you go into your appointments. I was fobbed off by my GP for 8 years and I'm regretting now that I didn't stand up for myself more to be referred when both me and my daughter knew something was very wrong. So no, don't let your health care teams “go easy” as you say. Medullary TC has to be treated differently and can also sometimes be aggressive and I was lucky that the first consultant I saw, knew to refer me directly to a Medullary specialist who did the surgery himself.

I know some people with these rarer types have found groups on “other” social media platforms targeted specifically for their variants to be more active. Is that a thing you've explored? In fact my daughter joined a group in the USA which has provided us with a lot of valuable pooled information, experience and knowledge. There may be a few younger members on those too?

I know there are a few on here with tall cell variant, although I'm not sure how active they are on the forum but hopefully they will reply and help soon. All the best with your next surgery. X

Hello latchbrook !

I’m so very grateful for your message and thank you for pointing me towards the already existing tall cell variant groups.

I read through them and found some helpful notes and experiences. Now I have also found some facebook groups for people who have the same diagnosis and in my age group (thank you k9crazy your message was super helpful) which is very comforting.

I updated my bio to reflect the full course of my diagnosis and where I am at now - here some more info for context >> 

I am Carlotta, 33 yo italian professional based in London since 2012. In November 2023, after months of coughs and recurring bronchitis episodes, I decided to undergo a number of checks with my GP. Because my blood work came back normal, I was told everything was ok and I didn’t need to check further as I was young and in no need of further tests. Because my cough wasn’t stopping and my energy levels had dropped considerably, I decided to see a number of specialists back in Italy under private appointment. During a visit and scan with a cardiologist the doctor incidentally spotted a small lump in the top end of my left thyroid lobe (12x9x8mm). I saw an endocrinologist right after this discover (end of Nov 2023) and I was advised to undergo a fine needle biopsy in Jan 2024. The results from the biopsy came back in Feb 2024 as Tir3B which in Italy is classified as “incongruent with 30-50% high risk for cancer”. I was advised to undergo complete thyroidectomy within two months of diagnosis, but in Italy, as thyroid cancer is diagnosed very often (especially in valley areas like the one I come from) and treated rather radically (due to the large number of cases - my valley alone has 40% of the population with thyroid problems and I had family history). I was hoping to undergo surgery back home, to be near my family, but that option would have been 10K as I am under NHS care and couldn’t access the public health care system back in Italy (fair enough!). I decided to move my case back to London where I live with my partner. After a month of back and forth with my GP (my referrals kept being cancelled as the GP didn’t load the documents I translated, and then they didn’t upload the scans I provided… in short it was an anxiety inducing mess, until I managed to see a young female doctor who decided I was worth a referral) I was finally booked in for a referral (March 2023) and after that a scan (end of March 2023). At the scan the radiologist explained multiple times how “I shouldn’t even be seen by an ENT as the nodule is barely there”. I persevered and asked for the ENT doctor to check my scans as I wanted to get a second biopsy done - eventually, they agreed to complete a fine needle biopsy on the same day as I had a diagnosis from Italy and they wanted to rule out any potential cancer. Biopsy results came back in early April 2024 and I was told they couldn’t place my case and they needed to discuss it further but it was likely to be the same diagnosis I received in Italy. They passed my case to a bigger hospital (St Guy) and I was eventually diagnosed with papillary thyroid cancer in mid April 2024. In conversation with the surgeon who was due to operate me, it was agreed I should have a lobectomy to remove only the left side of my thyroid but no further treatment (given the small size of my nodule, my young age and my overall good health). I had surgery in May 23rd 2024 which went well and I am recovering quickly, but I received back the results from the pathologist on June 11th 2024 and the cancer has breached the capsule and traces of it were found in 4/5 of the 5 lymph nodes they removed as protocol (largest metastasis was 2mm). More importantly, they also found the morphology of the nodule and the small metastases in the lymph nodes is Tall Cells (80% tall cells, so higher than a regular variant). Tall cells papillary cancers are more rare, more aggressive (recurrences, metastases..) and very rare in young patients - the youngest case reported I could find (in the literature I consulted so far) was 34yo. It is a variety which is present (still, rarely) in patients >55 yo. I am now scheduled for a second surgery on June 27th 2024 to remove my right lobe and central neck dissection. I’m due to have CT scan with contrast next week. The surgery will probably be followed by RAI but they need to receive the results from the CT first. I am hoping my health care team can address the situation rather quickly and thoroughly but they were also rather surprised by the tall cell character of my cancer. 

I hope this helps to understand where I am at  - I’m remaining positive as I’m surrounded by loving family and friends. My post surgery recovery was very good and I’m glad they could book me in for the second surgery this fast. I am also connecting to endocrinologist specialists back home in Italy as my region has specialised centres for thyroid cancer (given the very high percentage of cases) to find further advice on how to treat it in the long run. 

Thank you once again for all the advice so far. I really appreciate the support xxx

Hello k9crazy ! 

Thank you so much for your post and sorry to meet you in these circumstances. I send you all the warmth and positive energy and I was so touched to hear about your story and your daughter helping you find groups specifically for medullary. You are right to say one must persevere and try to find the best care for their specific type. It’s also so true that google can often offer mix of information which increases the stress without providing answers. 

I have now done what you suggested and I went onto reddit and facebook where I found groups specific for my tall cell variant (especially in the US) with some members in their 30s. I have now requested to join but I feel already much more at ease knowing other people out there are going through the same and I can share my experience so far with them. It is the not knowing (or better, the difficulty in finding a large pool of info about the variant) which creates a fair bit of anxiety in me, but researching more accurately and finding fellow patients who are on a similar journey really helps. So, thank you! 

My mum (like your daughter) is also rather keen to support and is enquiring back in Italy through some specialised thyroid cancer clinics - we have such high percentage of cases in my area of origin (north, around the pre Alps) that many endocrinologists and thyroid specialists see these sort of variants more often. Let’s see if I can get some further advice on how to progress post surgery. I trust my ENT surgeon but I would like to find someone more specialised in thyroids and in my case. As you said I have to search the best care. 

But once again thank you for taking the time to get back to me. It really meant a lot and I am glad to hear you have such a caring daughter who looks out for you, as well as strong will and clarity in yourself. 

I send you all my best thoughts and thank you for the good wishes towards the second op xxx

Hi I was told I had uptake on a pet scan in October 2023 I was having a pet scan as I also have melanoma skin cancer which I had surgery for in Aug 2023 and lymph node biopsy which was unfortunately lymph node spread. Was having treatment  for to stop it coming back but has to stop treatment as found nodule on thyroid which I had 2 biopsy for 2nd biopsy came back in April as papillary carcinoma thyroid cancer I'm having a thyroidectomy on 10th of July. I have been told that it may have already spread as its in the isthmus which can spread more easily so most likley will be having radioactive  iodine. I'm 40 years old women. Also been having a ovarian cyst checked waiting for results from the latest scan and blood test. 

Hi again I'm not sure about tall cell I guess they find that out after surgery I've just been told it was papillary carcinoma which is in a part it can spread more easily, be glad when I have had operation. I'm being treated in London too.