Hi,

I found this site whilst I was looking for some answers. If anyone can help that would be great.

My Father In Law is in hospital now 13 days post radical neck dissection. He had cancer of the right tonsil, soft palate, some surrounding tissue and some lymph nodes, (I don't know how many were removed).

He has had a fairly good recovery and now has his stitches out and only has his PEG tube and tracheotomy remaining. His arm is still in plaster following the graft.

Yesterday he had a Barium X ray which showed that the graft has healed very well but has a small area which is 'leaking'.

He has 2 problems. One is that from about 5 days post surgery he has produced a substantial amount of mucus which he is compelled to cough up. His mouth is constantly full of this sticky 'goo' which was very brown in colour but is now relatively clear. (He was started on Augmentin last Friday). It was coming out of his tracheotomy tube but that is now plugged. This is causing him significant fatigue as he has to clear it constantly. Is this normal? I can see no reference to it in anyone elses posts.

The other problem is that they won't remove his tracheotomy as when he is completely upright he can breathe through his mouth and nose perfectly but as soon as he leans back he feels that he cannot breathe and has to sit up again. He feels that something is obstructing his airway. Because of this he has not slept at all for 4 nights and this is now causing him immense anxiety.

Does anyone have any advice or experience they can share? I'd be so happy to be able to take him in some encouragement later today.

Many thanks for sticking with this wordy post!!

This message has been edited. Last edited by: Siobhan,

Hi Siobhan, I had a neck dissection about a year ago. After the operation I had something called a 'Chyle leak', I'm not sure if that's the same type of leak as you mention. I had some drain tubes attached to my neck for a few days to help clear the excess fluid until it calmed down.

Like your father in law, I had lots of problems with mucous after the op. My trach tube was constantly blocking up with the stuff, at one point I was having to get it suctioned out every hour and a half, to get rid of what I couldn't cough up. Also leaning back produced the choking sensation, so I had to stay pretty upright. It does get better though, though yes, sleepless nights are part of the process I think.

I think everyone has problems with mucous after this type of op, it's just a question of degree. The trach tube caused me more discomfort than anything else (apart from radiotherapy), I was so glad when I was able to get it taped up.

You mention his trach tube is 'plugged' - that is progress in itself, when the mucous is really bad, you can't really have a plug in because it fills up too fast to be able to cough out. So, not a lot he can do except hang on in there and remember that it'll get better soon.

Hope this helps, and good luck Siobhan.

John

Thank you John for sharing your experience with me. I am sure that as you say he just needs to hang on in there but at the moment that is proving very difficult for him, which is a shame as he had been so buoyant. It is clearing but very slowly and not without significant effort.

I'll pass on your comments to him, it will be good for him to know he is not alone.

Hello Siobhan

Maybe Mucodyne might help with the stringy mucous secretions. Ask your doctor.

Best wishes
Vinod

Thank you very much Dr. Joshi.

I am pleased to report that the secretions seem to seem to be easing a bit and he is more comfortable.

Good afternoon Siobhan,
The thick mucus problem can be rather distressing, I still have this from time to time and find any of the menthol/eucolyptus sweets help a lot.
Keep Smiling
John

Thanks for all your help and advices.

I have now found out that my Father In Laws cancer spread was extensive. The consultant has told me that it was a very big tumour which he removed along with half of his tongue. He has extensive lymph node spread and will require radiotherapy. The consultant says that after all of this his chances of beating it are at best 50/50.

I wondered if any of you have any experiences that you may be able to share with me?

Hi Siobhan, as I understand it, whenever there is lymph node involvement in oral cancer, the long term surivival statistics are quoted at around 50%.

This is based on historical survival rates, but the important thing to remember is that it's just a statistic. Plenty of people with lymph node involvement survive beyond five years.

In my case, the MRI and CT scans didn't suggest any lymph node involvement, but after the tissue from the neck dissection were analysed, several lymph nodes showed traces of cancer. I was already down to have radiotherapy and chemo, so in practice it made no difference to my treatment.

In the months to come your Father in Law will have plenty on his plate dealing with radiotherapy, getting his speech back to normal, learning to eat again and so on - chances are he won't be dwelling on the long term, because dealing with the present will consume all his resources - that's what I found anyway.

A year on from surgery I feel pretty much the same - I'm too focussed on the day-to-day to worry about the longer term. I do what I can to stay healthy, have a good diet, exercise and generally make sure I'm in the best condition possible. The rest is out of my hands, so I try not to spend time worrying about it.

regards
John

quote:

Originally posted by Siobhan:
Thanks for all your help and advices.

I have now found out that my Father In Laws cancer spread was extensive. The consultant has told me that it was a very big tumour which he removed along with half of his tongue. He has extensive lymph node spread and will require radiotherapy. The consultant says that after all of this his chances of beating it are at best 50/50.

I wondered if any of you have any experiences that you may be able to share with me?

Siobhan,
I am so sorry to hear about your Father-in Law's difficulties. It is a tough road but John is very right to say it is important to focus on improving things day-to-day. My husband went thru surgery removing lesion from his tongue and neck dissection in February. He suffered a lot of mucous also and felt choked. Unfortunatley the nurses told him he was just having panic attacks and to try and relax-that's until went off the deep end and made them put him back on oxygen to give him that extra feeling of relief. I don't know how it is in England but unfortunately here in the US you sometimes have to be aggressive with the nurses. (I feel I can say this because I am going to school to be a nurse.) It is important to let the nurse and his doctor know of any problems and don't be afraid to voice your concerns REPEATEDLY if necessary.

Our thoughts are with you and your family,
Kimberly

I am so grateful to you all for your very helpful comments.

I now have his discharge form and it says "Excision of Rt tonsillar tumour, bilateral nexk dissection. Lt I-III, Rt I-V.
It goes on the mention the forearm flap etc..

I am suprised to see bilateral as I had only thought he had one side excised.

Can anyone explain to me what the rest means, I assume it is to do with degree of cancer?

Thank you all.

Hi Siobhan,

'Excision of Rt tonsillar tumour' is pretty obvious - just means they surgically removed a tumour from the right hand tonsil.

'bilateral neck dissection' means they removed lymph nodes from both sides of the neck.

'Lt I-III, Rt I-V' I'm less sure about - I think it just means they removed more lymph nodes from the right hand side than the left. I think the roman numerals refer to different groups of lymph nodes. I would ask the next time your Father in Law has a check-up if it's something that concerns you.

I guess your Father in Law is home now then? Hope his recovery is going well.

John

quote:

Originally posted by Siobhan:
I am so grateful to you all for your very helpful comments.

I now have his discharge form and it says "Excision of Rt tonsillar tumour, bilateral nexk dissection. Lt I-III, Rt I-V.
It goes on the mention the forearm flap etc..

I am suprised to see bilateral as I had only thought he had one side excised.

Can anyone explain to me what the rest means, I assume it is to do with degree of cancer?

Thank you all.

Thanks John.

Yes my F.I.L is now home and is doing his best to swallow which is proving to be very difficult. I don't know if that's because of the throat surgery or because they removed about 50% of his tongue. His mouth is still almost constantly full of saliva/secretions which makes communication tricky.

He still has his PEG device and is trying to work out the best way to syringe in his food. He tried it all at once but that was uncomforable so he's going to try little and often.

He has an appointment on Wednesday with one of the consultants team and we should know a little more then.

I really appreciate your comments.

Thank you.

i know its a little time after your post but was trawling through to find a remedy ref this mucous problem. on reading your last post about syringe i have just had 3 days on that type of feed and enough is enough i was shooting it in too fast and making myself sick and now i am on a pump ,,,sound awful but its not you wont believe it when you see it as your dietitian if your fil can have one hten he can feed at night when asleep and not worry about all the fuss and mess of syringing it it , i only mean well not to interfere Carl..

Thank you Carl, I really appreciate your comments.

He seems to be fairly comfortable with his feeding tube now and is still syringing it in. I don't doubt that he would prefer the pump though.

He's now 2 weeks into his chemotherapy and radiotherpy and the secretions are really thick and his speech is becoming more indistinct. Does anyone have any useful tips?
Thanks.

Thanks again Carl, I really appreciate your help.

He's finding it all very tough going but is now 2 1/2 weeks through his 5 weeks of treatment so at least there is light at the end of the tunnel!

How are you getting on?