Having a neck dissection Friday what to expect

Hi Crazydoglady. Sorry you’ve landed here but it’s a good place to be for support and advice. 
Try not to worry about the neck dissection. The surgeons are pretty good with hiding the scar in your neck creases. I personally didn’t have any surgery so I’ll leave that description up to others who will pop on to explain. 
Do make sure your surgeon and CNS explain thoroughly so that you understand. Take pen and paper in to your consults or even record it on your phone. I think these days you can take somebody in with you. An extra pair of ears hears stuff you don’t. 
I did have radiotherapy. Mine was targeted in my throat and did have nasty acute side effects but it’s all doable and I am completely recovered. 
Yours I suspect will avoid much of your mouth so that’s a godsend. 

The treatment itself doesn’t hurt but your skin is likely to burn. 
Leeds teaching trust has a little video to explain how they make a mask to keep you still and in the same position every day in the treatment table 

https://www.leedsth.nhs.uk/a-z-of-services/leeds-cancer-centre/your-treatment/radiotherapy/your-radiotherapy-team/the-mould-room/

Might I suggest you ask for eyeholes to be cut out  it reduces claustrophobia if you are that way inclined  

I had them cut out because I’m nosey and wanted to see what was happening 

Im sure you’ll have many more questions as time progresses. Don’t hesitate to ask. No question is daft and somebody will be able to answer 
Good luck and best wishes 

Hi Dani

Thanks for all the information ,I have not been contacted by a cns yet ,and my operation is on Friday ! to be honest Its only just all hit me and did not really ask many questions as was all over the place but now it's near I wish I had asked for more information , will watch the video and yes think I will have eye holes cut out of my mask that's a good idea , how many sessions do you have to have of radiotherapy or do they tell you once they test your tumour after your operation. Thanks xxx

Hi. I had 30 sessions. That the usual. Some people have 35. Both are gold standard. Yes the radiotherapy sessions are planned after your mask is fitted, based on the CT scan they do at the time or shortly after 

Oh that's a lot but better to get any cells left behind ,how do you feel after does it make you feel sick ? Many thanks xxx and how long after your operation do you start treatment ,I really did not ask any questions wish I had put pen to paper but I was all over the place I feel and hope this part of the waiting for the operation and the pet scan results was the worst bit of all of this  it's all the anxiety ,I had a panic attack and did not want to go out the house for a few days then you feel ok for a few days then you start feeling anxious again .

I think most RT starts around six weeks after the operation. 
For me I didn’t really feel any effects till the end of week two. Throat was a bit scratchy and taste disappeared. By the end of week three my mouth was a mess of ulcers and I was fitted with a nasogastric tube as I couldn’t swallow anything and I was on morphine. There are a few details in my blog. 
I don’t think the radiation made me sick but the morphine did. There are plenty of things you can do and take to make yourself cope and to feel better 
radiotherapy peaks two or three weeks after treatment ends so you’re in a lot of discomfort for a few weeks. 
One if our forum member has an excellent diary if you look here 

https://community.macmillan.org.uk/members/markel

It really does depend on where they are targeting the radiotherapy and how much you get. 
Contact your consultants secretary for how to speak to your CNS? Then you might have some idea of what’s happening 

It might be too early to jump to conclusions 

Thanks Dani 

I am going to sit down and read your blog and the other's today as I am self isolating before my operation many thanks xxx

Hi Crazydoglady.

welcome to the forum sorry you’ve found yourself here.Danis covered pretty much everything so won’t repeat my self. Ihad 35 radiotherapy and 2 chemo sessions I had tonsil cancer with several affected nodes. I didn’t have operation as one if my nodes  was very close to spinal cord..I am now 3,5 years post radiotherapy and happily living my life. 
Keep off Dr Google and deffo ask for eyeholes to be cut out if mask. Radiotherapy isn’t easy it does depend where they target as to severity if side effects. 
Good luck with op Hazel 

Thanks Hazel yes got loads of good information and glad all is good for you that's great yes Dr google gives you nightmares  so glad I found this lovely forum and really think it's good to read people's story's it really does help and your getting the real story's which is brilliant  thanks xxx

Hi Crazydoglady and welcome from me.  Is the name as a result of the dog or its owner??   Hopefully you will appreciate some lightening of the tone.

I've had 2 neck dissections.  The first to remove an enlarged lymph node (which was cancerous) and the second to remove all of the lymph nodes on that side.  They did impact on a number of my salivary glands - they can't help it - but yours is obviously targeting a primary salivary gland.

I think recovery will be very much the same for all neck dissections.  In my case for the first one I was in overnight with a drain in my neck.  That was removed the following morning (not a painful experience) and I was able to go home that day.  For the second I was again in overnight but did not have the drain.  Again home the following day.  Wherever possible I spend as little time as an inpatient as I can. Associated with the second dissection I had a full tonsillectomy (ouch - be grateful you are not having that!)

I found recovery from the dissections quite easy.  Keep up with the painkillers even if you don't think you need them.  Eating and drinking was normal.

I found sleeping slightly upright helped.

Watch what you do with your head in the first few days as you start to heal, remembering that a lot of muscles have been cut on the side of the dissection and your head can "flop" and needs support if you tilt it over to one side.  Upright not a problem.

I hope the surgeon has discussed with you possible side effects??  There are nerves that run through that area that control the mouth and the shoulder.  They do their upmost not to cut them, but sometimes just moving them can lead to damage.  I had shoulder problems for about 18 months afterwards, but now I am fine.  You will probably loose skin sensation in some areas of you neck, shoulder and chest.  Not painful, but strange.  Other times the nerves may heal a bit "crooked".  I can scratch my neck and it feels like I an scratching the top of my ear.  None of this is life changing in my case.

The scar can only be seen if you really look for it.  At last I am grateful for the family double chin!!  Seriously, the surgeon was amazingly skilful and what he did in no way represents what you see on Google - hence the advice not to go onto Google!

You can expect to be healing for 10 days or so.  I was on an aircraft on the way to the Florida on day 16 after my first one and whilst there managed roller coasters.

Stitches or staples may be used.  Either come out easily with little pain.

Longer term you will have a lack of saliva as a result of the surgery.  I have, and I did not have a major saliva gland removed or go on to radiotherapy as there was no clinical benefit in my case.  That is probably more of a rare pathway, but if they have good margins then you may be spared.  Lots of hydration helps from the moment you come round from the operation and forevermore.

Try to get exercise.  A walk in fresh air ASAP will do wonders for your recover.  Don't be impatient for healing.  Let your body tell you what it needs.  After the initial scar has healed expect around one month for each hour you are under for the body to fully recover.

Do any exercises they give you religiously.  Physio really does help with the recovery.

In summary it is a big operation, there may be some side effects a few of which may be with you for life, but many will resolve with time.  You will be OK.  Long but I hope it helps. 

Hi

im 11 weeks on from neck dissection (but I also had reconstructive surgery on my palate using tissue from my arm)
I do twice daily exercises which I search for on Google (hospital sources). Sounds like most people have physio. I have a weak arm/shoulder on that side and some muscle wastage but the exercises are helping and my arm and shoulder are getting stronger. I’m still numb on the affected side including ear, and initially was quite swollen but neck self massage and time has improved that. I had a drain for about 2 days. I get a stiff neck so just massage and do exercises when this happens. The scar is pretty good and follows a crease! I’m using bio oil to massage it which is good for scarring. but still early days. 
i start radiotherapy soon and went for the mask fit last week. It is very tight mesh but I was warned about it on here and so was well prepared before I went. Oddly because of that I found it ok if not quite comforting lol 

good luck with your surgery, you’ll be fine! 

elaine