Hello Shelly,

I am so sorry that you feel you have been left a bit in the dark and that you are struggling to get answers. I hope you see the consultant soon and that you find out a bit more - try and ring the hospital maybe and ask to speak to someone who could perhaps provide some information as to whether they took these biopsies or not. 

Our nurses may also be able to advise you further. If you live in the UK, feel free to ring them on this free number 0808 800 4040, Monday to Friday from 9am to 5pm.

I hope you will meet others here who have had a branchial cyst and that they will be along soon to share their experience with you.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Shelly - hope you are OK. Have you learned any more since?

Sorry it has taken a bit of time to reply to your post. I went through my cancer journey quite some time ago now and as time passes I think its natural to drift away a bit. In March I will be 5 years out and offcially 'cured' so I have one scan left. A lady who works for us has just been diagnosed with breast cancer and it got me back to thinking about this place and I thought I would check in.

I was really interested to read your post as your journey so far sounds a lot like mine did! I had a big lump turn up in my neck literally overnight, and after lots of scans and tests the doctors came to the conclusion that I had a branchial cyst. They did an operation to remove it (much like yours was planned to be) except in my case they still thought it was a cyst so I did just have a small scar. I had a nasty shock when 3 weeks later I was asked to go in and was told the lab results on the 'cyst' revealed cancer cells.

I am a born and bred Scouser and although I live in rural Cheshire now, when I went through my cancer I was looked after by Aintree and they were absolutely brilliant - I promise you are in the best possible hands!  I did a 24 hour run to raise money for Aintree. I opted to stay with Aintree and its worth every minute of the hour commute  - I know that I'm in the very best possible hands and you will be too - its a national centre of head and neck expertise.

I would say to you honestly, although it is a scary time try not to worry too much. My cancer was a bit weird because usually when you have a lump in your neck it is a secondary cancer which has come from a 'primary' location and got trapped in your lymph nodes - in my case it was supposed to be a salivary gland. However over the years my primary has never been found and long may it continue! I had to live with the idea of this cancer hiding away but after a while I just accepted that there was nothing I could do except be vigilant, and we'd worry about something turning up when it happened.

I had a second operation after my diagnosis which was a neck dissection, and that involved having all the lymph nodes on the left side of my neck taken out. I also had a tonsil and a bit of the back of my tongue removed to biopsy. Yes it was very sore at first and I had a scar running from my throat to my ear - but within about 18 months it had faded a lot and barely notices now. I was lucky enough not to need radiotherapy or chemotherapy (which isn't used much for head and neck cancers). I went back to playing Sunday football and won the district cup a year to the day after my operation!

Be strong - I know how difficult it is during those first weeks and months, it is a huge shock but it does get easier. I was once where you are but am now sitting here enjoying a normal life and just a few months from being officially cured - there is light at the end of the tunnel. When I was first diagnosed it was a tough time as my kids were very young - 10 months old and 3 years old. I remember being afraid that I wouldn't see them grow up and all those fears. But I have just celebrated my little boy's 6th birthday (he was the 10 month old) and my daughter is now 8 years old and doing really well at school.

Let me know how you are getting on and if there is anything at all I can do to help. I will keep an eye on this thread.

Cheers

Leo

I was diagnosed with a branchial cleft cyst (around 9cm In length) last year and went through all of the scans, ultrasounds, MRI etc. I was then operated on (at Aintree by coincidence!) to remove it. Following surgery the next day,  I was visited by a physio who gave me a leaflet on radical neck dissection. I had the drain removed and was discharged. My shoulder nerve was bruised and the nerve controlling my mouth was also bruised so I didn't look great!! When I went back for my follow up, I was told that they hadn't found any cancer cells and was signed off from the surgeon. I still don't know if I had radical neck dissection or if that was just the leaflet she had! I realise how lucky I am and I am extremely grateful. I was wondering how people recovered from the same surgery a year or so on? This is the only forum I have found to reference it so thought I'd ask. My nerve damage is slowly repairing but not there yet. I still have numbness and tingles in my face. My mouth has improved but still a little droopy on one side! My main concern is the area around my jaw line is still puffy and numb. The skin feels tight here and is different to the areas around my scar and the skin on the other side of my face that wasn't operated on. I'm just wondering if this is normal or if I need to get it checked out? In the current Covid times, I don't want to waste anyone's time if it is purely cosmetic. Thanks in advance and I hope your journeys are on a positive trajectory. 

Hope you have been ok and things have settled for you if not I think go back to your GP initially- at least they can refer you back or advise if it is nerve damage/ scar tissue  and still settling.

My son had a large branchial cleft cyst removed in aug 2019 he still experiences some numbness and tingling - we didn’t get any advice on physio just massaging the scar to reduce scar tissue - similar to you he has a large scar as well. 

Similar to you I find myself on the site because of the reference to cyst.

Just wondered if you have any residual pain in your neck/ throat -he does and  describes it as a feeling of temporary paralysis and although I thought it’s most likely nerve damage/scar tissue We have been referred back to the consultant.to get it checked out - then today he has discovered a further small hard lump in his neck near his collar bone not near his scar so are back to GP hoping to get some more answers/ tests.

wising all of you on this site lots of luck with your journeys. 

Thanks for your reply. My shoulder is settling but The area around my jaw and scar is still very sensitive and I feel like I have muscle weakness in that side of my neck, it is a strange sensation! I don't have much pain in my neck but my shoulder can ache and the area around the scar can still tingle and feel strange. I hope you get some answers for your son.

take care and stay well 
 

Hi Katie,

I'm only on here because my friends daughter has chronic tonsillitus and as I've had that as well as a benign  branchial cyst and a Quinsy I wanted to check out the official symptoms list for here so she isn't misdiagnosed.

With regard to numbness I had pins and needles in my jaw area and ear after the operation. All in all it lasted about 4 years but became bearable. Strangely, 20 years later I still don't like anyone touching my ear - just feels a bit like it doesn't belong to me, but generally it doesn't bother me at all. An ENT surgeon I saw a few years later for a hearing issue said i had a sight 'facial palsy' but that was the first I knew about it. Think we're all naturally a bit lop-sided. In short I think it takes time for nerve pathways to heal but that usually they do eventually.

I was suprised by how well a scar that initially made me look like Frankensteins Monster eventually healed. I used E45 to moisturise it and massage it gently, but within a few months it rally wasn't that noticeable. 

Compared with others stories on here I ffel very lucky.

Best wishes for your ongoing recovery x

Hi, I hope your recovery is pretty much 100% now? I had this surgery last week which was made a little more complicated by the cyst being attached to my arm nerve. I'm struggling to lift my arm up to shoulder level at the moment and I'm just wondering how long it took before you felt you had enough movement that your day to day activities felt more 'normal'? At the moment dressing and washing is pretty much enough activity for the day for me. Thank you in advance 

Hi, yes I am 99% sorted so don't worry. My cyst was complex as it had managed to attach itself to all sorts and the op took hours to get rid of. My scar is healing all the time and only yesterday somebody commented on how well it was. My shoulder was affected but I had some great physio about a month after the op and that helped loads. I now have full movement and the nerve niggles are few and far between. I am convinced that my shoulder sits a little lower as my bra straps keep sliding off on that side! I still have a slightly wonky smile from the nerve damage but apparently only I can see that. My scar is still very sensitive and I still have a bit of numbness around my jaw and earlobe but it is fine! The nerves take time to heal so please don't worry, you are only at the start. Don't push yourself and give your body time to heal! I was shattered for the first week or two but then strength and movement returned and with the help of physio (which I paid privately for as I didn't want to wait) I was sorted. Just niggles left now! Good luck and rest up! You will be back before you know it! 

That's great to hear thank you. My necks still tingly but I know that will sort itself out in time but I won't lie it's my arm that had worried.....it sounds like we were in a similar situation as mine had attached itself to the nerve and made it longer and more awkward than initially expected. Physio is a great idea, I'll look into that. Thanks ever so much for getting back so quickly. Take care x 

The physio was really good. He did massage and then used a kind of tens machine on my shoulder to work on the nerves. Not going to lie, it was pleasant but totally bearable! I only needed about 4 sessions. It was definitely worth it! 
Good luck!