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. 

Parents
  • 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

Reply
  • 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

Children
  • 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.