So glad you found this forum, Suzy - it's the best place to be for the latest information and compassionate suggestions from people with similar experiences. My son also had the swelling in his neck but he did the massage as suggested in above posts and it went away after a while. And now, almost 4 years later, the scar is barely noticeable. It would be a good idea, as mentioned above to check with the doctor about the swallowing problems. Do let us know what happens and how you are doing. If you would like to list info about your treatment under your signature line (see mine below), just go to the top of this page where it says "my stuff", click on "profile" and scroll all the way to the bottom and you will see a box where you can fill in whatever information you like.

Suzy:
I echo the seeing a physical Therapist for massage techniques. I had the "Turkey Waddle" going on and found it uncomfortable, for lack of a better word. The massage processes I learned help move the lymphatic fluids around and lessen the amount gathered just under the chin. The swallowing piece is still a challenge 4 years out but all the mayo and gravy help keep the weight at a comfortable range, otherwise I probably wouldn't garner enough calories. I still get some fluid build up with changes in weather (Maybe there's a new profession hidden there-LOL) so i utilize the massages routinely. Also, Biotene products were mentioned earlier. I use most of their products and whatever you do STAY HYDRATED, it helps. As for the scar tissue speak to your doctors about it. Hopefully it isn't a large part of the swallowing issues and if so maybe there are some alternative solutions to at least some of it.
Warm Regards,
Steve

Hi Suzy from a fellow "Brit".You have had some brilliant help and advice from the gang,and i have just a few things to add that are relevant to UK users.Firstly don't despair if you don't get any answers to your posts for a while.This is to do with the time differences.Our USA family hit the boards late afternoon until about midnight,Aussies tend to reply early hours of the morning and things can be a bit sluggish over the weekend.

Secondly unlike our friends in the states,we are bound by the rigid appointment system of the NHS,and are not able to ring our consultants or ask to be seen whenever we wish,this can mean a long time between appointments and a lot can change over a few days in the post treatment phase of Oral Cancer.

If the swelling is very bad,then contact your local hospice.Most hospices in the UK have a Lymphoedema clinic and a specialist lymphodeama nurse,who is specifically trained in lymph massage.Bombard your GP until he refers you for help.Contact Macmillan or Marie Curie and ask if they have a service which may help, and always remember there is a support system here and also on our British based sister foundation The Mouth Cancer Foundation run by a Doctor based at Saint Lukes hospital in Bradford.I have an e- mail address in my profile that you are welcome to use any time.

good luck

Hi Suzy

Prior to being treated for left tonsillar cancer Carol couldn't eat and had a very difficult time even sipping water which ended up coming out through her nose. After radiation and chemo she was beginning to eat some very soft foods. Unfortunately she had a recurrence shortly after and underwent surgery. Carol is 3 months post surgery and it still feels as if something is stuck at the back of her throat, having difficulty swallowing. She is doing the massages and exercises but her neck is still very stiff and can't lift her left arm too high. It is still too soon after surgery and hopefully this will lessen over time.

It is indeed good news you are able to eat some foods so soon. This is a positive sign and you are on your way to healing! I would also strongly encourage you to talk to your doctors about your issues and getting them addressed.

Sorry I'm not able to give you anything directly related to your questions, but you have come to the right place. The folks here are a wealth of information and insight. I haven't posted in a few months, but this is the site that provided me with tons of info to OC, both the pros and cons.

Linda

Wow !! It is great to have access to so much information, more importantly, this is 1st hand experience that you are all sharing, with great compassion and it makes a real difference to get such responsive support. I want to say a very big "Thanks" to all of you, I have read through your replies and you show much empathy, alongside some good solid advice regarding things that have worked for you and suggestions that I can try.

I feel like I need to give this all I've got now and will be getting down to some PT next week, as well as trying some other things you have advised. It seems the surgery can heal differently after RT, but as my SCC was advanced, it was not possible to do the neck dissection before RT.

Good luck to each and everyone of you.
Suzy (London)

After my surgery, swallowing wasn't too back once the initial healing of the tongue happened. It went downhill fairly seriously towards the end of Radiotherapy (June 2010) but is now somewhat improved. I still feel a tightness in my throat when I swallow but I sense it is slowly (and I mean slowly) improving as is my supply of saliva. For some time I used to wake up 3 or 4 times with my tongue glued to the top of my mouth but now I make it through the night albeit with a slighlty gummy mouth most mornings. My consultant says things will continue to improve for some month still so I remain optimistic. (only way to be!)
My chin is looking fairly good after the neck dissection (April2010) althought my neck is a little lopsided after they removed lymph nodes from one side. The tissue around the scar is still quite stiff or hard to touch but again I am sure it is slowly improving. I do some simple neck stretching exercises as recommended by my physio which I believe assist in healing the scar tissue but I dont use any creams.
Hope this helps Martin

Hi Suzy,
I'm glad you got some good responses and ideas from the others. Mike did not have the neck dissection, but he did have the choking sensation and the feeling of items getting caught in the throat. He also got the "turkey chin". That went away on it's own. The swallowing got better with time, and he needed a couple throat dilations to help it along.
I am wishing you the best as you try some of the suggestions offered as well as your PT.
Keep us posted as to your progress.

Ginny

Suzy, welcome to OCF. Im so glad you have so many responses to your questions. Im sorry I didnt see your post til now. I always try to make the new members feel welcome. Its important for us to look out for each other. Ive made many friends over the past 3 years on OCF. While the majority of us do not have medical backgrounds, we do know quite a bit just by being patients and caregivers. Im glad you found OCF to help you with your recovery.

I noticed a few things you mentioned in your post. First was the fact that you very recently finished with radiation and then had the neck dissection last month. After undergoing radiation the healing process takes much longer. You mentioned suffering from another problem which further comlicates your ability to heal. I had a long surgery last year and it took me 10 months before a tiny hole would close. This hole was located next to the area that was radiated. I have experienced things taking up to 10 times the normal rate of healing in this area. My docs always are telling me to be patient and that it takes a full year before things will heal. Unfortuantely it can take up to 2 years to recover from radiation. It continues to work long after you have stopped having treatments.

As far as the eating and swallowing goes, I would consult with a speech therapist. They can do a swallowing test and help to figure out what has happened to make it get worse. I suspect it may be due to swelling from the neck dissection. This is a very uneducated guess. Im thinking you are probably still swollen from having radiation and the neck dissection further irritated this and caused more swelling. My docs tell me swelling can take 6 months or more to fully subside.

Have patience, its going to be 2 steps forward and 1 step backwards for a while longer. But soon, you will start having more good days than bad. I wish you the very best in your recovery.

Hello I can't add a whole lot that wasn't said already. We know that though we share the same disease everyone's cancer is individually different and we respond differently too treatment as well. I do agree with the swallowing exercises; though my swallow is fairly well. My hospital never gave me swallow exercises; I am talking to a girl now is is going through treatment at MD Anderson and she was given swallowing exercises right away. Some people may have had swallowing problems before this even started but didn't realize it. Also, as woman you may be very petite so less tissue, surface to work with; which brings me to the one thing know one spoke about surgery after radiation. I like most people was able to have the neck dissection before radiation and it effected very little tissue. However, in your situation I'm not sure why they waited either they thought they could go with out the neck dissection like Michael Douglas or the tumors where in operable in the neck at the time; but I was told and have read that surgery on irradiated tissue is a lot more difficult. This may be where your problem lies. All I can say is take the other members above advice, also not sure what hospital you are at but if you are not happy with there therapy u may need to search elsewhere. Best of luck! Big Hugs!
Charles

Dear Suzy,

I am so sorry to hear of your ongoing problems with the side effects. I can empathize with how little the Docs can seem to care about getting to the bottom of some of these life altering problems and how hard it can be to find the right help.

I will divide my comments into 2 parts: first my theory on the direction that your surgical oncologist should be going in to figure out what is going on with your swallowing and second, my scenario which may help with the process of elimination.

My Theory: Since your swallowing problems appeared after the neck dissection, the possibility that a nerve was nicked or severed should be considered. For example the vagus nerve controls the action of the cricopharngeus muscle, (also known as the Upper Esophageal Sphincter, or UES) which is normally flexed and must be relaxed to facilitate swallowing. Of course there are lots of other nerves involved. Your surgeon should be forthcoming in helping with the testing necessary to determine if nerve damage during the neck dissection is indicated; after all, if medical practice in the UK is like it is in the US, you signed a complete release of liability before they proceeded with the neck dissection.

My Scenerio: I had tongue cancer which had metastasized to neck nodes on the right. Treatment was a partial glossectomy and right neck dissection followed 3 weeks later by 6 weeks of chemo radiation including Cisplatin and about 60 GY to oral cavity and both sides of neck. After surgery I was OK. During chemoradiation I lost the ability to swallow anything, taste anything or generate any saliva. I was on a feeding tube for 10 months. After 2 months of not being able to swallow they did a swallowing study where I attempted to swallow liquids and they observed with x-rays. The liquid seemed to be getting stuck at the UES. They concluded that the neck muscles that act to help pull the UES open through a connection involving the Adams Apple had been atrophied in the radiation treatment and had me doing neck and swallowing exercises. This went on for 2 months with no results. Finally I saw an ENT who specializes in esophagoscopy with a tube equipped with a video chip. The problem was immediately identified as a stricture, ( scare tissue) located just below the UES. Hence the reason for the misdiagnosis from the swallowing study.

A bogie dilation procedure was done to open the stricture. I have been able to swallow fine ever since. Unfortunately I have severe xerostomia and have not gained back much ability to taste. I get my nourishment from chocolate Ensures.

I saw on one of the other posts a reference to botox treatments but no explanation. My understanding is that botox reduces hypertonicity of the UES muscle. This may help if nerve damage is suspected. The downside is loss of protection from reflux.

I hope you find relief soon. If you want more info from me write directly to [email protected]

Sincerely,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09, biopsy got it all, praise God!