Head & neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Waiting for op -seems like a long time!

Posted by

I first went to my GP in December as I had a suspect lesion. I had biopsy in January and got my diagnosis early Feb. I've completed all the tests and scans two weeks ago and saw the consultant about ten days ago.

My question is about how long did you have to wait until you finally had the op? It just seems that time is dragging and, although scared out of my wits, I'm keen to get this cancer removed. I swear it's four or five times bigger than when I first started this journey. Is it normal for it to take this long? I'm concerned it's going to spread to other areas. I would ask my Clinical Nurse Specialist but she has left the department and the consultant is only there once a week and a nightmare to get hold of. 

How much notice could I expect to be given when a date is finally sorted? There's much to do before I go in and I'm just living in limbo. I can't arrange to do anything more than one or two days in advance because I feel that the call could come and they're going to say they need me in tomorrow!! I'm aware their operation day is Weds and admission days are Tues.

It's a real pain not having that liaison person and my care seems piecemeal and uncoordinated!

Posted by
Hello Noggin, I'm sorry you're having such a worrying time - I think we all know what that one feels like. I'm not sure there's a simple answer to your question as how urgent it is it will depend on what the scans showed up. It is a very scary time between diagnosis and treatment starting and it may well be that your perception that the lesion has got worse is subjective. It's unlikely you'd be kept waiting if your consultant feels your op is urgent but it's absolutebly fair enough to want reassurance about that. I had the result of my biopsy at the end of July and the op a month later. Again, I think it's unlikely that you'll be called in at moment's notice though; I think I had about ten days' notice but everyone's experience varies. It's a real shame about the Clinical Nurse Specialist having left, perhaps you could ask your GP for advice about how to chase things up? Sorry if this isn't a great help but good luck with it all. Rosame
Posted by

Hello Noggin.   I am sorry that you are becoming worried regarding your operation date, as everyone else will agree the waiting is particularly hard. As it's almost five years since my surgery some of the dates have become vague, although I do recall what seemed a long wait before I went into hospital .... perhaps about five weeks after my cancer was confirmed.

Once the date had been decided it was then all action with lots of pre-op checks to go for, so time did speed up a little there. You should be given adequate notice as they have to know when the Consultant can operate and there has to be a bed on the Ward for you. Perhaps you can try and see if your chap has a secretary that you can contact .... if not, then try your own GP ?

Hope that you hear something soon, but they won't keep you waiting long enough for the cancer to grow .... take care and keep your chin up.

Joycee x

Posted by

Hi Noggin, Yes the waiting is sometimes the worse thing - just not knowing when they are going to operate/start treatment is a nightmare. Your consultant though will have a secretary that you should be able to contact. He/she should be able to give you a rough idea - or at least be able to email/phone the consultant, to ask him your specific question. If you can't get the secretary's name from the hospital - just Google the consultant's name. You might get his private secretary - and she should be able to give you contact details for his NHS secretary. I know all this cos I had to do this pallaver for my partner when things seemed to be delayed and he was left in limbo. Let us know how you get on. Ackers x

Posted by
Hi I'm sorry to hear you are going through a tough time and agree the waiting and not knowing is so hard. As others have said the wait between diagnosis and surgery varies I think. My husband was diagnosed a couple of years ago and he was fortunate that he didn't have to wait long at all. He was diagnosed on the 16th dec and was in having his surgery on the 11th Jan. for us it was quite short notice they gave us, if I remember correctly we had a call on the Wednesday to say surgery would be that Monday coming. it sounds really frustrating not being able to speak to a specialist nurse or have a main point of contact. Others have suggested contacting your Gp which is a good idea or you could also ring into the main reception of the ENT department at the hospital and explain that you need to talk things through and they may be able to get another doctor/nurse in the department to meet with you if the consultant is too busy. Once my husband had had his surgery we were regularly at the hospital and got to know many of staff and there were several involved in his case so I'm wondering if there is someone other than your consultant who can be a point of contact who will also be involved in your care?? Good luck xxxx
Posted by
Hi Noggin 18 months ago I felt like you I had my biopsy in January and then saw my new doctor in London and then finally had my op on 15 March. It felt like such a long time and like you I wanted it gone! I think that once they know what they are dealing with then you know you are in the right hands and that timings will come together. Good luck with it all keep us informed how you get on Hugs Jayne