Joansie,
So sorry to hear about your husband. This is a horrible disease, but you are taking the right steps in getting several opinions. Just don't take too long to decide what to do. Stage 4 is the worst because there are only 4 stages. If the cancer is already in the lymph nodes, time is of the essence. It can spread very rapidly through the lymph system.
You must weigh the pros and cons of all the opinions, but if the chief head and neck surgeon at Sloan-Kettering is saying no surgery, I would lean very heavily in that direction. I would also recommend going to Sloan for treatment. No matter how good your local doctors are, I feel it is much better to be treated where all the doctors are working in tandem.
If you scan back through some of my posts (just click on the number at the bottom of this post), you can read some of what my daughter has gone through and get a feel for why my opinions are the way they are. Of course, you must keep in mind everyone is different and what works for one person may not work for another.
Briefly, my daughter had stage 4 base of tongue squamous cell cancer. She had surgery and radiation. Chemo wasn't recommended, so she didn't have any. Her surgery was done 9/4/02, radiation was finished 1/3/03. She has just this week been diagnosed with a recurrence. This tumor is larger than the first one and is growing rapidly. Her only chance now is chemo and it is a very slim chance.
If we had it to do over again, she might still have had the surgery, but SHE DEFINITELY WOULD HAVE HAD CHEMO WITH THE RAD. We will never know if going that route would have prevented this recurrence, but I sure would recommend it to others, especially since a surgeon is also recommending it. The chemo supposedly will destroy any micro metastases that may have already developed. The cancer was in 4 of my daughter's lymph nodes and the chemo should have been done. The doctors had no way of knowing if any cells had gone beyond the nodes in her neck. I'm having a hard time trying to make sense of the fact that she was discouraged from having chemo.
Some people might remember that at one point, I said that it was good that Heather didn't hace chemo because she was having such a hard time with recovery. I felt having chemo would have made it even worse. However, it seems that this tumor was probably growing even while she was having RAD and the tumor actually was the cause of most of her problems. The surgeon feels it is the cause of her severe trismus and worse than normal pain. It also is the cause of the fluid pockets she has had and very possibly contributed to her problem with infections. About the only thing it probably didn't play a role in was her stomach trouble with the PEG tube. Therefore, if she had had chemo and the chemo would have killed those cells before they had a chance to form a tumor, she wouldn't have had most of these problems. Of course, this is all conjecture. We will never know for sure, but it sort of all fits together and makes sense.
Sorry, I didn't mean to rattle on. I just feel very strongly about this given my daughter's condition. If the cancer is in the lymph nodes, chemo should be in the treatment mix somewhere. Chemo alone is not the answer, but should be included in the treatment.
Rainbows & hugs,
Rosie
