Head and neck cancer

Hi Mummy13,

Such a worrying time for you. Is the op you mentioned a mandibulotomy?

little-fi x

I’m so sorry to read this. 
I think there are a few people on this forum who have had surgery for H&N cancer. I’m sure someone will be along soon to give their thoughts and advice.

What type of operation is being discussed?

Sending hugs love Sharon xx

Hi Mummy 13

Sorry to read about your dilemma.  First and foremost you need to get all the information you can from the surgical team so that you can make an informed decision.  If you have a CNS or Macmillan Nurse on the team perhaps in advance of the meeting you could call and ask for the information i.e. what does the imaging show, how extensive, what is the expected outcome, has any staging been done, what type of operation is being considered.  The CNS may not be able to give you that info before the meeting but you won't know unless you ask.

If you cannot get that info till the meeting ask for all that info and ask for time to consider your options.  The team should be happy for that as it is obviously a big decision to make.  

Considering your other medical problems has the relevant specialists been involved ie respiratory specialists?

After you have all the information that you need then you can consider what is best for you. Have you used the Macmillan Nurse telephone helpline?  I have found them to be very knowledgeable and have been helpful in getting us to ask questions we may not have thought of.

I wish you luck in going forward.

Regards

BrandyGirl

Hi Sharon if in both of my lymph nodes be both and tongue cancer

Hi. I am sorry to read your update. I had a Modified Neck surgery Op last August if I can help with anything. I had an SCC lump in my neck which was removed along with lymph nodes and 2 showing signs of being whatsits, together with chemo/radiotherapy afterwards. Not all Ops are undertaken in the same way but, if you have a question, I will see if I can help..

Sending all good wishes.

Tricia (piya10)

1. Hi Tricia ive definitely got it in one side,they think it's in the other lymph nodes too.the op is horrendous isn't it.has chemotherapy and radiotherapy got rid of it all.radiotherapy didn't work for me,got ultrasound Wednesday.x

Hi Mummy13, please do not think the operation is horrendous as many can vouch for, its only search engines ,google etc that put the fear into some people. On here you will hear honest replies from people gained from having the experience of operations or treatments themselves. Take care .

                                                                 Chris x

Hi Mummy13 The dissection surgery wasn't too bad actually. You wouldn't really know to look at me that I had had an Op as they follow the natural lines in your neck. My PET/CT scan was all clear in february. I had 2 chemo sessions week 1 and week 5 and 30 sessions of RT. This was the standard suggested for me right at the outset by The Marsden. Keep me posted if there is anything else I can help with. All good wishes for wednesday.

Tricia

Hi Mummy13.  I've been away so only just catching up on the site.

Yes the op can be quite traumatic in some circumstances. 

HOWEVER, they have been into my neck twice and you can barely see the scar.  They took care to go in where the folds in the skin hide the scar.  Even the scar is not too bad - barely noticeable.  Recovery was good and relatively painless.  I had stiches the first time and clips the second.  Clips were better at coming out!  There are some possible side effects and you need to talk to your team and understand them.  I now have a weak shoulder - strangely I can pick up a bag of cement, but cant reach out for a cup of tea!!  I also have numbness in my right chest (it was a right neck op) which is strange by not overly troubling.

There are potentially other issues but I've not had them.  I was out of hospital within 48 hours.

Take on board the advice and issues from your team and make your decision.  I've not regretted the surgery.

Good luck!

Hi. Am still struggling with the new website, so I hope this is the correct response to a suddenly gone question !!

I had no choice, surgery had to go ahead to remove Squamous Cell Carcinoma in left neck near collarbone. I started exercises as soon as I could and was able to put arms above head within 4 weeks but, I had a very funny Elvis lip as I did so for a while. I can smile symetrically and pick up anything either to the side or in front of me. My neck is annoyingly tight down the scar line, but does ease if I do the neck exercises (doesn't go altogether). For me (and this might be due to where the surgeon did the cut), the biggest annoyance is the slower movement in my neck turns. Physio had helped a lot before they were unable to see patients, so I am still hoping that if I can get further physio, the stretching will make a further improvement. My left area above collar bone is quite numb and my left ear is also annoyingly numb. But I say again, I had no choice to refuse surgery and I have enjoyed my 2 new grandchildren for a year now, even if I can't quite bounce around like I used to. All the best.

Tricia