Hello,
It has been a while since I have posted so let me update you. I have been recouperating from the lung surgery I had 2 months ago, I had 8 nodules removed from my right lung and 4 lymph nodes from my chest. It was all metastisis from my tongue cancer. My lung surgeon said he could not guarantee he got it all and recommended me to a medical oncologist for chemo. Yesterday I went to the oncologist expecting to get going on chemo, she looked at old CT scans and said that I still have a nodule in my left lung and she won't do anything if I still have nodules popping up like dandelions. She said that chemo does not work on Head and Neck patients and the only reason I got the lung surgery was because I am young. So the next step is to have another CT (Aug 26) and then I am to meet with surgeon and oncologist at the same time.

I can't keep going thru lung surgeries. I don't understand why everyone in the US gets chemo, yet the doctors in Toronto at a major cancer center (Princess Margaret Hospital) say that chemo does not work for Head and Neck cancer. Has anyone heard of this?

Wow! I'm really surprised to hear this. I can only think to bring up this board, and that many people have had chemo on it. Then ask why was it recommended for them and not for you?

I'm glad you're through your initial surgeries. Obviously we wish more weren't necessary. I'm also a bit shocked at her comment that you rec'd it only b/c you're young. It seems like pretty poor bedside manner.

Is there anywhere else nearby you can go? Or a different doctor you can see?

Sabrina

Hi Sharon,

I have met to the lungs but they aren't as concerned with that as they are the reoccurance in the original surgical bed. (right tonsil)

They also told me that mets to the lungs cannot be cured. I thought that rather odd. If you read my posting on my recent (8/6/04) scan results you would understand my confusion. The scan showed a noticeable decrease in mass of abnormal enhancing soft tissue in the right tonsillar bed since the previous study. (6/6/04) They inferred this is just a slow down and not a cure. Although happy with the scan results they were vere cautious about giving me any false hope.

If what they predict is true I am terminal. It may be 6 months or it may be 5 years. No one can tell me anything for sure. I feel fine and continue to be as active as i can.

Please know I and many others are thinking about you Sharon. Hoping your treatment delivers what we all seek.

Danny Boy

Sharon,

I have been wondering about how you made out. I guess, probably because of Lynn, I was afraid to ask. There has been several recent studies that support the use of chemo in treatment of head and neck cancer metastases. I will find the articles, from june, and give you more information. I am certain that some of the studies were from Canada.

I just went through this at MSKCC and, as you have learned, metastases from head and neck cancers don't get the doctors jumping up and down to treat them. You may recall, I had one tumor removed from my left lung in may. The 28 nodes removed during the surgery were clean and that left me with a tumor in my right hilar region. My surgeon sent me to the oncologist but until they got together, post-op, they were at odds on treatment options. I am now on chemo for the remaining tumor and, if it responds(it has), surgery may follow. The meeting on the 26th sounds like a necessary next step and hopefully the 3 of you will come to terms. If you don't like the outcome you need to look elsewhere.

Glenn

Sharon,
My mother-in-law has been treated at Princess Margaret Hospital for the last 6 years. That being the first occurence, re-occurence a year and a half ago and another one July of this year. She is now only being monitered as they say treatment is futile. Chemo was only ever mentioned once, because I asked for it. I was told that she was too fragile medically for it to be of any use. I really like the doctors at this hospital but you really seem to have to do your own homework, they don't offer anything but the basics, I suspect this is because of our health care system "free". However we were not told it wouldn't work on head and neck cancer, just that in her particular case it wouldn't help and she couldnt go through it.

Karen

Sharon - as you know my sister Cathy was treated at Sunnybrok (the other major cancer centre in Toronto. She had weeks and weeks of radiation but the cancer is still there. We talked to a medical oncologist about chemo and he basically told us the same thing - that there is no definitive chemo regimen that works for head and neck cancer - that is why you see so many variations in the chemo drugs people are on. Cathy has been referred to Princess Margaret so it will be interesting to see what they say at our appointment on tuesday.

sharon,

i'm not sure why they're telling you that chemo would not work for head and neck cancers. it is true that chemo drugs in use currently for head and neck cancers were developed originally for other cancers, but it is becoming standard to use one or another combination of chemo drugs even prior to surgery for oral cancers. try to get your doctors to explain why they won't consider it as an option. i've seen doctors change their mind when they're questioned from an informed position.

i send you good thoughts for healing and peace.

gita

Sharon:

Chemo is standard as an adjunct therapy to radiation or as primary treatment (with or without surgery too) for some types of mets. The information you were given isn't accurate. If you don't get anywhere with your current facility, would it be feasible to travel here for a consult? Mass General, Dana Faber, and Mass Eye & Ear Infirmary in Boston all have renowned head and neck centers.

Keep us posted,

Kim

sharon,

one more thought: if possible, it would be worth doing consultations at Sunnybrook or Mount Sinai. both of these toronto hospitals have very strong cancer treatment programmes. one thing to keep in mind about princess margaret is that it is a major research centre which doesn't necessarily make it a good treatment hospital.

gita

Thank You everyone who has posted. I will definetly follow up with your suggestions and I will be asking for a second opinion if things don't go well with my appointment with the lung surgeon and the oncologist on Sept 7.

Kim, I will be sticking with hospitals/doctors in the Toronto area since it is free and going to the US would cost me a fortune. Thanks for the advice though.