Branchial cleft cyst excision- Face to Face to discuss results

Hi all,

I've recently beeen through montha of hell starying with me finding a lump in my neck to gp to the getting an urgent referral to ENT, to the neck lump clinic. 

I then had an endoscopy,  core biopsy and FNA biopsy. During my appointment the consultant had said i could have something called a branchial cleft cyst. 

I had another appointment made for end of April, but then had to chase for my biospy results for 3 weeks even though knew they were back.

To then have a really disappointing call with the consultant who said my results are inconclusive.

I was then sent for a CT scan,  and waited weeks for the results 

They the decided it was definitely a branchial cleft cyst,  I was booked in for surgery 2 weeks after that.

That was two weeks ago. The consultant told me on day of surgery the reason they wanted to remove is because they can still be cancer. He said routine histology would be performed on the cyst, and that he would write with the results as he expected it to not be. 

However today I got a phone call asking me to go back to see the consultant to dicuss my results face to face.

The doctor specifically said he would not see me unless the results showed 'something' 

I'm now really worried.  After months of stress and then thinking it was all ok,  I'm back to worrying.

Has anyone had this? If so what type of cancer was it? The doctor mentioned squamous cell carcinoma, but would this be from the cyst or from another primary site?

1 week and 3 days is such a long time. Especially after months already.

I can't see why they'd be asking to see me if it wasn't cancer, any help or reassurance would be gratefully received. 

  • Just to add. Finding any information online about cancer arising from BCC is so difficult.  

    I presume that's why I've never had any one reply when I've posted about it

  • Hi Lola1080,

    I can understand your concerns with all this waiting and then dealing with the uncertainty prior to having the results appointment. I hope it's not long to wait for this.

    It's very difficult of course to know what might be said at this appointment. If you'd like to talk things through with someone ahead of this, you are welcome to give our nurses a call. You can reach them on freephone 0808 800 4040 - Monday-Friday, 9-5 (excluding bank holidays).

    Try to take things a day at a time while waiting and keep busy where possible, and hopefully you hear more soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Thanks Ben, what I've  come to realise over months of worry. Is that its the fear of the unknown. Especially from reading so many similar posts of people going through the same diagnostic journey for all different types of cancer. 

    It's the 2nd September that my appointment is. Which will have been 3 weeks since my surgery.

    From what I can glean online, if the histology has found something it's either Papillary thyroid carcinoma or BCC carcinoma and both are not horrendous outcomes. Worst case looks to be  full thyroidectomy and radiotherapy. I appreciate there are people in much worse situations. I'm keeping busy. Working and using some 'dark humour ' to get myself and my partner through the next week or so. 

  • Hi Lola, I can definitely relate to this. 3 1/2 years ago I found a ridge on my left testicle. I went to the gp and she didn't feel anything but sent me for a ultrasound. 4 weeks later at the ultrasound the DR said there was definitely something but couldn't say what which led to a further 2 months of tests to eventually to be told they wanted to remove the affected testicle for biopsy to be certain. Nothing on tumor markers. On day of surgery I was told by the surgeon that he's seen thousands and it was not cancerous. But the face to face afterwards I was told after a month if sitting around that it was cancer. I'm now back to square 1 after a remission scan showing a lymph node in the lung is abnormal but can't have a scan until next month due to proximity between scans limit and the consultation has been booked for December.

    I hope you're not going to find the same situation as I did in your consultation. But remember people are there to support you and you aren't alone. The worst part is the waiting game we're forced to play. 

  • Hi   Thanks for your reply. That's horrendous for you. I hope your wait isn't too drastic and that you get answers soon. I'll keep everything  crossed for it being a good result   it's so hard to talk to anyone about it as well as I feel like I'm either being a bit much or dragging everyone else down and worrying them too.

  • My wife is my rock even with her own mental struggles but supervisors at work have been amazing for me willing to take a moment of their time to let me vent. I've bought myself a note book so that I can create a journal for this journey which I'm hoping will help me get out any emotions even if it's not to someone it might help. X

  • Glad to hear you have your partner. I really hope things turn out well for you. 

    I got my call from the consultant today.

    It's the news I was half expecting. But it will be fine

    And the sheer fact I actually felt relief when he said it. Shows just how awful the waiting is. 

  • I hope the news wasn't too bad. It's having the answer that oddly feels good even if it means the worst thing. I got my bloods later today but no word yet on the follow up scan yet

  • Fingers crossed you hear soon. Were your bloods ok? With me they have found papillary thyroid carcinoma in the wall lining in the Branchial cleft cyst.  So next is to have another round of scans. The consultant thinks maybe they missed seeing anything on my thyroid because they were focusing on the cyst.. then depending on what they find that will determine the treatment, and that where it's came from migrated from my thyroid  Or, it's literally only been in the BCC and they already got it all out. That's really rare though only having it in the cyst.  

    And funny about all this is my bloods have always been clear! They've done them twice I think. 

  • Hopefully will have the results for the bloods next couple of days.

    It's funny isn't it when I was diagnosed with seminoma 3 years ago all my bloods were clear the CT scan was inconclusive apart from there was a tumor it was purely the biopsy which said it was cancer. 

    Fingers crossed for the next stage and that treatment is kind to you x