My husband's oncologist and ENT surgeon are disagreeing about what to do at this stage of his treatment. (He has cancer in hard palate, right tonsil, and right lymph nodes of neck). The oncologist says chemo is not working much, if at all, based on current CT. But the surgeon says he needs to see more results from chemo because he is thinks he cannot remove all cancer with surgery.

We learned this yesterday when Scott went back to the oncologist for more chemo (his second round of Methatrexate, which is very mild and easy on him compared to the previous drugs tried: Taxoterre, 5-FU, and Cisplatin. They abandoned those drugs because the bad effects outweighed any good they might be doing.)

The oncologist thinks we should just have the surgery before it gets any worse hold on Scott, but the surgeon feels that we need to keep trying chemo until we find something that works. I'm torn here. Being in a holding pattern is difficult because the cancer could be spreading, yet we don't want to push for surgery if that will put off chemo and allow any remaining cancer to get another head start. ARGHH! This is so frustrating. My husband is being very patient and positive, thankfully, but last year we were lulled into waiting by a previous doctor and now here we are with a major recurrence.

How do we deal with these delays and differing opinions? We went to several doctors before settling on these and I don't even know if seeing someone else at this stage is a good idea.

Any words of wisdom would be appreciated.

Christine
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Husband diagnosed with stage I SCC of retromolar area 10/02; surgery 11/02; 33 radiation ending 2/03; recurrence (or new primary?) 9/03 of hard palate, right tonsil, lymph nodes of right neck.

Hi Christine
Wish I had words of wisdom for you, but I don't. I feel that although Doctors do not necessarily agree over treatment, it doesn't mean either are wrong. Two doctors stood and talked over me for 20 minutes, even at one point asking me what I thought? So I'm back there on a monthly check again, my point? Do you have faith in the Doctors and the treatment? If not follow your own gut feelings, then whatever the outcome you will not be saying I wish I'd had my say. Hope someone else can do better!
Prayers Love and Hugs Helen

Hi Christine,

These times are a bit difficult. I do not recall what options you have for more opinions but I strongly recommend you getting to a large medical center with a tumor board. A tumor board is a larger group of specialists that will review Scott's case and come up with a plan based upon a large base of knowledge. Brian Hill or some others may be able to direct you. It is possible that the doctors you are working with now are at the limit of their experience level. I don't get the feeling you will get a timely (IMPORTANT) resolution with the doctors you are working with. Seek experience and quality now!

Mark,

Actually, it IS a large medical facility (University of VA) with a tumor board. I should have made that clear in my post to this folder.

I talked to the oncologist's nurse today, and she said Scott's case will go before the tumor board this Thursday. One problem is that we came to UVa after being with a local doctor who put us off and let things get out of hand, in my opinion. So, we have only been at UVa since October and I know they are competent, concerned, etc, but it seems like trying out various chemo coctails is only going to allow the cancer time to grow. (Radiation is out since he had it a year ago on what was only a tiny spot in this mouth...)

We don't know exactly how big the cancer is (the doctor showed us the CT but it looked like those pictures being beamed back from mars), but it's big enough that Scott's right neck/jaw area has been swollen/ mishapen for over 3 months now. The roof of his mouth hurt him over a year ago but the first doctor didn't think it needed a biopsy (not even when they found the first T-1) and now we know that his whole hard palate is cancerous. So, who knows how long this cancer has been there.

I understand that the surgeon wants the cancer to shrink before surgery (because surgery will be pretty massive anyway) but how do we sit on our hands in the meantime? I feel like I'm going completely crazy one day and then I have strength to go on the next. I can't help but feel the clock ticking on this. We lost so much time with the other doctor before coming to UVa. Our hope is that the tumor board will help the oncologist and otolaryngologist find a solution. I guess I still feel so let down by the first ENT that I have a hard time fully trusting any doctor. It's like watching a bomb ready to explode any minute. I want to say, SOMEBODY DO SOMETHING but what?

I have got to be strong and positive (I usually am) but this seems to really be kicking my ass to the curb.

Christine

Helen...by the way, I did originally have a good feeling about Scott's doctors. I'm not sure why I'm doubting them lately. I think it's more that I feel totally helpless and the waiting game is a nightmare. I thought I was equipped to cope with this but I am seriously doubting myself. It is certainly helpful to be able to talk here.

Christine