Hello Everyone,

I have been lurking around the board for the past few weeks mostly looking for details of what to expect for my Radiation and Chemotherapy treatments which start next week. I had two confirmed oral cancers last year, involving 4 surgeries. One was on my tongue (left lateral border) and the 2nd was gingival, behind my left back molar. My last surgery was a partial mandibulectomy in September last year. I had good margins and no neural, bone or vascular involvement and it was decided that apart from close watching no further treatment was needed.

All my subsequent scans and check ups were clear and I really thought that the worst was behind me! How wrong I was! I turned 50 in April and my husband I planned an escape to Singapore along with a week long cruise in South East Asia. I had a clear check up 6 weeks before but about two weeks before we were due to leave I started feeling that something was wrong. I became sure that there was a lump in my neck - but my husband (Andy) and teenage children couldn't feel it. Anyway because I was stressing my husband took me to the ENT who agreed that there was probably something there and sent me for a CT. This came back with a 1.7 cm node that was suspicious enough that he wanted to remove it. Long story cut short we decided to take the holiday (couldn't get a refund and didn't want to turn 50 in a hospital bed!)

After I got back I had a PET scan and needle biopsy that both came back NEGATIVE! Despite this the node had grown to almost 3cm and I had surgery on the 12th May. A frozen section was done while I was under and this confirmed that the node was cancerous with extracapsular spread. A neck dissection was then performed with 48 further nodes removed which all showed negative for cancer.

I woke up very sore and sorry with drains in place and a few days later came home from hospital. I still have a bit of swelling especially under the chin (looks like a big double chim) and lots of numb patches from my left shoulder to my ear (and behind it)and on my neck. Some spots are hyper sensitive and I can't stand anything touching them. I also have some , as yet, unresolved nerve damage to my lower left lip giving me a lop sided smile and misalignment when I talk. All else is good, if a little stiff. No shoulder or arm problems and a scar that is healing really well. I did have one scare, though, about 4 days after I got home. Lots of fluid built up in the centre of my neck just above where the collar bones meet. I felt like I was choking and finished up at the hospital to get it checked. All was okay though it wasjust oedema caused by the lack of lymphatic drainage pathways. I still have some swollen spots that come and go.

My RO has told me to expect similar problems during treatment. Has anyone else had problems with oedema during radiation - and if so how bad does it get?

I have found this board an invaluable resource for getting relevant and practical information on dealing with the problems that this disease presents, so I would like to pass on a BIG THANK YOU to everyone who has posted their stories and offered advice in these forums. I'm sure that there are lots of 'silent' watchers like me who have been able to get heaps of value from your postings.

Thanks for Listening!

Sue G