Hi everyone. Im doing fine at work and the surgeons are happy with me so far. Im feeling brill at the moment. Hope everybody are ok and you are all always in my thought and prayers.

Keep well.

I had cancer of the tongue which had spread to my lymph nodes on the right side of my jaw. Treatment was chemo (96 hours on the first week and fourth week), radiation (30 sessions of 5 passes each session), and radical neck disection resulting in removal of the nodes, some muscle loss, and all subcutaneous tissues from my jaw to my collar bone.

Chemo was a snap compared to the radiation and neck disection. The radiation left me burnt from my jaw to my collar bone which took very long to completely heal. 4 months following my radiation I underwent the neck disection which was something I wouldn't wish on my worst enemy. I am now down the road 9 months from that surgery, and still experiencing a lot of pain and discomfort, difficulty eating, a lot of swelling due to accumulations of lymphatic fluids, total loss of sensation on the right side of my head, face, and neck (except for the pain of course). But, I AM ALIVE! In spite of anything else a person might think, living through this disease is the goal, and worth the effort. I wish I knew when and if my life was going to RESEMBLE normal. If I knew it was going to be better over time, that would reassure me. However, right now I feel like this is the way my life will always be, and that to me is a very disturbing thought.

Hi lifeisgood. Im sorry to hear about your experience and really feel for you. Keep battling on and please believe me when i say it will improve, slowly but it will. I really hope all goes well for you and you will always be in my thoughts and prayers.

Hi, Russ. I,m Jola and cannot really get in touch with anyone here. If you are interested, I'm waiting here or on my emai - jolanta.pietrasik@wp.pl

Hi lifeisgood, please can you elaborate on neck dissection as I may have to have one, my surgeon says there are no side effects as the nodes he is removing are not needed. However I do not trust him as he has been more than economical withthe truth on many prvious occassions!!
Thanks Sue

Re my message dated 23/1/05 to Lifesogood. Can any one else answer my question?
Sue

Hello Sue Many of us here have had a neck disection as part of the surgery to remove the tumour from somewhere in the mouth. The procedure is to remove some of the lymph glands in the neck to prevent the cancer from travelling around the body via the lymphatic system (as I understand it) It is usually done as a precaution. Apparently we can do without most of the glands. The scar runs from ear to ear if both sides have been done - not so drastic if only side. I had my surgery in March last year and the scar has healed and is fading nicely. It needs lots of cream and gentle massage initially (once the stitches are removed of course). This all sounds quite horrific I know, but it's not that bad really. I don't know your situation re surgery but hope this helps a bit. Do ask your doctor to explain everything to you or a nurse on the ward who is familiar with the procedure. Regards Brenda x

Hi Sue

I have had neck disections on both sides, they removed both my sub-mandibular salivary glands (as these were where my tumours were) and lymph nodes, one surgery was in October the second was 3 weeks ago, my scar goes from ear to ear as brenda says, but they really don't look too bad now. Quite horrific at time, but they are healing pretty well.
The problem with the disections are that the nerves to the mouth and tongue are in this area, so it is very delicate surgery, I have lost the movement in my bottom lip on the left side,which at the time was traumatic, i kept biting my lip and making it bleed as I couldn't feel it, even now 3 months on I still have to move it manually if I take a bite of something. I was told this would heal, but it hasn't.
The second surgery has damaged my tongue on the right side,which has caused problems with my speach, but I have exercises to do as they have told me this is temporary as the nerves were bruised, so I live in hope.

I don't want to alarm you, I really am doing well and these are minor problems considering what I have had done and still to have done (6wks radiotherapy) but I know in my case I wanted to know everything and as your doctor isn't very forthcoming maybe this information will help.

I wish you all the best and keep us posted

Love
Tracey

Hello Sue

You might find this previous post on 'Neck Disection' of help. You could also look up 'neck disection' in the surgery sections of two cancer textbooks available on the RDOC website.

Best wishes
Vinod