Hi there,
Decision day was grim, new scan results showed spread to multiple, bi-lateral lymph nodes and a poorly differentiated (aggressive)tonsillar primary.
Treatment recommendations are now for chemo/radio to large field as spread is as far down as clavicle and surgery is out of the question. Ho hum here we go - had mask fitting done and ready to roll soon.
The only unscanned part of me is my brain and of course there is a recurring worry that it might already be lurking there and that all this treatment will be in vain ( in my weaker moments only)Does this ring bells with anyone? Did you ever feel like running away to the mountains for your last few months?
Am trying to come to terms with the gross incompetance/delay/ignorance that has allowed my cancer to spread to the other side of my neck - it was clear last month and the margins on the right side were clear and operable! At least my medical team now are wonderful and have restored my faith somewhat but I feel that I could maybe have been the spared chemo and possibly even my life!
Am off ski-ing now with my sister and my dog, feeling fine in myself and the whole surreal nightmare can wait until tomorrow!!!
Best wishes to all,
Frances and Meryl.

Why can't you have radical neck dissection on both sides ?

I was diagnosed Stage 4 left tonsil cancer with multiple lymph node invilvement (left side), I was also poorly differentiated SCC. I remebered my ENT surgeon said if I had nodes on both sides, he would do the neck dissection on botrh sides.

You could have neck diseection on the sides with large lymph nodes then let the Chemo/RAD take care of the rest. In my opinion, get rid of the tumor is important

Dear WZ
Thanks for prompt reply.Guess that the tumour has invaded local structures and has become entangled in the carotid etc. I will check this out with the Radiologist tomorrow. I was pencilled in for surgery tomorrow and I guess that they would have gone ahead if they felt it appropriate. They have told me that I have a life threatening situation and the only viable option for me is to recieve carboplatin and 5FU along side radical radiotherapy. I believe these guys are really on my side, I have to! What is your treatment plan? Sounds like us young un's have to play with the bigger girls and boys eh?
Best wishes Frances and my sister Meryl

Frances
My husband's tumor(lymph nodes) was touching the carotid artery but not wrapped around it. The CT scan showed the tumor was right there but they couldn't tell if it had invaded the atery etc.He was told if during surgery they see it is wrapped around the atery they would stop the surgery, and radiation and Chemo would have to do the work. They were very concerned because my husband wanted to take a 2 week break/vacation with the kids before the surgery and the ENT surgeon told him it could be too late for a succesful surgery if he waited.
We decided to have surgery 4 days later. The tumor was peeled off the atery. He had radiation and cisplatin 3 weeks after surgery and so far so good!!
Good Luck Frances you will be in our prayers!!
Sherrie and Dan

What I had is tonsillectomy and radical neck disection. He removed about 70 lymph nodes. The surgeon cut my mandible in order to get adequate access to the tumor site, I had a pectoral skin graft made from my left chest and transplanted into my mouth/neck to cover/fill the void left by the surgery. A metal plate was installed to the mandible to connect it together.

Following the surgery, I had 30 RAD and concurrent weekly Chemo of Cisplatin. Two weeks into the RAD, I developed an infection, I had a surgery to drain the pus from my left chin, so, the RAD stopped for more than a week, then the Doc increased the number of RAD to 33.

My treatment was done late Nov 2002. again I had several infections in my left chin since then, so the Doc sent me to Hyperbaric oxygen treatment now, it will be done late Jan. At this moment, I still feel throat pain and all the side effect from both surgery and radiation.

Wishing you good luck in your treatment

Frances,
My base of tongue tumor had grown too large for surgery and therefore I was treated with Radiation and concomitant chemo only. As of now both the tumor and three cancerous neck nodes are gone. So, this stuff can work without surgery.
You go girl! I like your attitude.

Danny G.

Hi Frances:

I've been following your posts and am sorry to hear your situation and options have changed. My partner Dave had a radical neck dissection on one side after discovery of a tonsillar tumor and one lymph node in August, 2003. He also had post-op radiation but no chemo.

Funny you get to know people here by their medical diagnoses first! Anyway, there is hope and life after treatment for oral cancer and Dave's first day back to work post-treatment is TODAY!

Let me chime in to wish you our best and we are pulling for you!

Kim & Dave

Frantastic news for you both. Take it easy Dave, don't work too hard. Unfortunately Frances is spending the night in hospital after a peg fitting that has turned into a bit of a nightmare for her. Very painful with lots of vomiting. We have had a very hard day, its so hard to leave someone you love in other peoples care and trust them to look after them. As a nurse it has certainly given me new insite into the whole Nurse/patient/relative relationship. So tomorrow she is having an ultra sound of her abdo,if everything is ok its off for treatment planning and a trip to the dentist! Something for her to look forward to!!! Life is a bitch at the moment.
Take care all out there. Best wishes
Meryl - The sister.

Hi Meryl,

So sorry to hear of Frances' problems with the PEG tube. My daughter also had a lot of pain with hers. No vomiting though. She has continued to have some trouble with it the whole time she has had it.
BUT she still is glad she got it in. It really is essential. Tell Frances to hang in there. The first couple days were the worst. IT WILL GET BETTER!

Rosemary