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New diagnosis- Papillary Thyroid Carcinoma arising in a Branchial cleft cyst

Lola1080
Offline

Hi,

I've already posted a couple of time in the pre diagnosis chat. I finally got the confirmation I have cancer yesterday after months and months of a really tough time. 

I'm posting here to see if anyone at all has had the same as me. It seems to be pretty rare. I was looking for someone to chat with that I could ask questions to see what their experience was like. 

I'm unsure what questions to ask after my next set of tests.

And failing that maybe once I have been through it and someone else is in my shoes this post will be here and I can maybe offer that advice eventually. 

I found a lump on my lateral right side of neck months and months ago. I thought it was probably just a reactive swollen  lymph node and ignored it. But after 3/4 weeks it was still there and my partner insisted I go to the GP. 

The lovely nurse practioner was great said she didn't like the feel of it and given I had not jad any infection recently she would refer me for an ultrasound. She also took bloods and they all came back clear.  A GP then overruled her saying I didn't need an ultrasound after my bloods came nack clear.My partner (who's mum sadly passed from cancer) wasn't happy and I am very lucky to have access to private healthcare through my work so booked an ultrasound. That happened within a week. They scanned my neck and immediately put me back to NHS on the 2 week suspicion of cancer pathway to ENT neck lump clinic. 

I was then seen by a registrar,  who did a quick camera up my nose, and I was given a FNA and core biospy on the same day. 

It was at that stage  I was first told it could be something called a branchial cleft cyst.  As the lump was cystic in its nature and that was the most likely diagnosis but they couldn't rule out something else. But we would wait for biopsy results. 

I waited another 2 and half weeks and had to chase several times to be given these results, when I got the call I was told they were inconclusive,  but she really did think it would be a benign BCC. That she would go ahead and schedule day surgery to have it removed as even though they are normally benign,  they can cause other issues. 

Then again she was over ruled by the senior consultant saying they actually wanted a CT scan done first.

So I waited weeks for that, and then weeks for the results even though the results were done 2 days after my scan, I had the scan done at another NHS trust and it seems they sent my results back on an incorrect system and no one knew they were there. Anyhow once they were found I was told it was absolutely a branchial cleft cyst,  and did I want surgery or not. I (thank God now) said yes please just take it out,  then I'll not be worrying. 

I was told I could wait up till 12 months for surgery. Then to be told less than 6 days later that I had actually been booked in for surgery in two weeks time.

The day of the surgery was the day I met the consultant that had overuled the registrar twice, and he explained the reason I was brought in so quick was because these BCCs can still be cancer,  but that it was very rare. After surgery he came to see me in ward and said it looked like a nice clean cyst and he was pretty sure we were all good and that histology would be done on it and he would write to me with the clear report..... 

Fast forward 2 weeks after surgery, I get a phone call. Being asked to come in to see him in a face to face appointment to discuss my results. The appointment was a week later so I called back obviously very concerned and asked if I could possibly be called ahead of that. He did call. Yesterday. 

The wall lining of the cyst contains thyroid tissue, and in that tissue is Papillary thyroid carcinoma.  

So the stage we are at now is, identifying if this has actually migrated from my thyroid,  and I actually have thyroid cancer.He thinks they may have missed it on my original scans as they were focusing on the BCC. Or has it actually only been in the cyst. That it seems is very very rare and that medical experts actually disagree if that even is a real thing or not. Some say it must always have come from another primary site. 

Next steps back for another ultrasound to see if they can find a tumour on my thyroid. Then there will be discussion on what treatment route I need. 

Sorry that was long. It's been the worst 5 months ever. My work has suffered,  my relationship has too, and my mental health is in the pan. 

I'm just glad that I finally know what is wrong. As I knew there was something. I'm 43. I know my body. The biggest and most impactful symptom I have is fatigue.  The most oppressive fatigue all the time making it really hard to function.  

So yes. If anyone can guide me on the beat questions to ask once I have my next set of scans or even just reach out to tell me they have been through similar? 

Thanks 

  • Hello Lola1080

    I'm sorry to hear that you were told you have papillary thyroid carcinoma. I can imagine that it was a mixed blessing of finally having answers to your concerns but also hearing that it was a cancer diagnosis. 

    Hopefully, you won't have to wait too long for the additional scan and the team will then be in a position to discuss the plan for treatment and monitoring. 

    You might find it helpful to talk things through with one of our nurses ahead of your next appointment. I know they will be happy to listen and offer any advice, information and support they can as well as help you think about questions you might want to ask the specialists. If you'd like to speak with them they're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I do hope that things improve over the coming months. Keep in touch Lola1080 and let us know how you get on over the coming weeks. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thank you for your reply Jen. I already have the ultrasound of my thyroid booked in for Thurs next week. I will keep this thread updated as I know I really struggled with finding anyone in my position and would like think this thread may be of help to someone in the future. 

  • Offline in reply to Lola1080

    Hi Lola1080, I behind you in regards to discovering my Thyroid nodules were biops after surgery 26th Sept and informed they were cancer on 9th Oct.

    I found out after a severe choking bout and difficulty of breathing. I had become aware that my wind pipe had moved to my left and was no longer straight. I did feel a lump in Nov 2023 but carried on in typical male fashion. I suffered headaches not debilitating but niggly on my left or right temple or on both. I was very tired sore muscles and fatigue. As an avid walker with my dogs it was gradual stopping. I am 63 my family or in particular my siblings have history of Thyroid, my oldest brother died of bone cancer due to his cancer spread from his Thyroid to his jugular which could not be removed. My sister I was diagnosed with breast cancer again it was not all removed and is currently at end of life care with bone and brain cancer. My younger sister has Thyroid issues.

    back to myself. Though with restricted airway a plan was taken to make surgery not as pronominal as previous. I had to be awake to place the airway. A harrowing experience that is very much being choked getting panic and your stomach fluids rising to your Adam’s apple. It seemed ages but was probaly seconds until they supplied the GA. I woke in the ICU which was very much nicer than previous surgery which was more violent. I went under at 9.15 and woke at the back of 3pm. I felt great other than stiff neck and shoulders. Very painful. My two blood vacuums reservoirs were the worst if not all the other monitors I was connected to. I do not know how many times they fell of the bed dragging me with them or get tangled in other wires. I could not pass urine and Cathyper was suggested which I declined and eventually a doctor and nurse stood me up, best feeling ever. I felt better and was moved later the next day to a surgical ward. They informed me I had not received my blood thinning jags. My reservoirs were not emptied as no one was trained in this type. In the next ward a nurse did know and my bloods weighed. I was visited after surgery by my surgeons and my thyroid was removed clean and no connections to other parts. So I awaited biops. The anesthetists came to me to discuss my experience and we went over is was a lot better other than tube insertion. They explained going GA route would have be problematical like previous. My awakening was the best I have experienced and they asked permission to use it as a case study. They only difference if they did it again I would be given LA from the rear of throat through my nose not through my mouth. May make more pleasent, I hope I never have to experience it.

     The morning after getting my blood thinners I was suffering with really sore throat. I was given Cocodamol, I do not suit opioids or systems and have particular reversion to Morphine. I had an episode and become unresponsive and found my self flitting from awake to conciosness, I awoke to find myself surrounded that I was about to learn was crash team. My fingers on my left and both thumbs were tingling or numb, my stomach was wrenching and I could not feel below both knees. Between bouts of waking and not I had bloods, x-ray and scans. They supplied me jag to aid calcium if it was that it was slow to react. I was given oxygen since waking. My breathing was erratic and just wanted to sleep. I was constantly shouted at and a doctor trying to explain what the were doing or asking questions. I lost speaking ability and felt in dream state. Between bouts of being awake I could make no sense of it. I eventually came round and my breathing was calmed. I was approached by a ICU doctor stating I had suffered another episode like my Morphine I had previously. I was just glad it was over.

    I was discharged the next day, my surgeon visited me each morning till she discharged me. I was given my bag of tablets & discharge notes and went home. Where the last days events played in my mind and realization of medication routine got to grips with. Lots or reading and timing when to prescribe along with purchasing pill box.

    I had episodes or tiredness and fatigue. Legs going numb but the blood thinning pills did take away my headaches as they thought my calf swelling or leg numbness could be clots. On Sunday I was called to hospital to check my bloods if I indeed was suffering any blood clots. Happy to say I was clear. My sore heads are back and my fatigue have returned and sore knees and tingling.

    I await my future plan on way forward and what stage my cancer is at. Regards Ally

  • Offline in reply to Allylearm

    Hi Ally. Thanks for your reply. You sound like you've been through hell. My heart goes out to you. I do hope for a good outcome for you! I have found the Thyroid Cancer UK support group on Facebook to be very helpful , for information and support. I think Thyroid cancer is still one of the less common ones and I didn't manage to connect woth anyone on here with a similar diagnosis. In case thata something you might fi d helpful. 

  • Offline in reply to Lola1080

    In my recent hospital stay I found individuals over my stay in a far worse predicament with Bowel Cancer. For my own experience I would have liked more information of side effects. My operation was far greater explained and in particular my Anaesthetic process though choking part omitted.

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