dear all,

i'm new here. here's what brings me here:

my sister was diagnosed in december/03 with stage IV SCC, maxilla (sp?); and had a left subtotal maxillectomy within 2 weeks after diagnosis (massive effects from the surgery), followed by 37 radiation sessions. before radiation was over, a new lump appeared on the other side of her neck. the same doctors who rushed her into the surgery the first time thought this might be a simple infection and did not run any tests until a month later. biopsy, MRI and PET scan all have returned positive, and they show *suspicious* new growth in the first surgery bed. the new lump has grown very quickly. they wanted to do another surgery on her. she went for 2nd and 3rd opinions and opeted for different doctors, hospital and approach. they started her on chemotherapy on tuesday. the idea is to see if that has a noticable effect on the new tumor and then decide whether to continue with the treatment. meanwhile, for the past few days, she's been having severe pain in the area of surgery and irradiation. (if i'm sketchy on details it's because my sister is in los angeles and i am in toronto and get my info second-hand.)

my family are told that there is nothing to do but wait. they are much happier with the new oncologist and the care that he gives my sister and the time he spends with her and them explaining things and laying out the data, etc. the problem is that there seems to be no conclusive data on whether the cancer has in fact returned to the irradiated area, although the tests and her pain point in that direction. the oncologist thinks chemo will have little to no effect on these areas, and he thinks that if the new tumor on the other side of her neck doesn't shrink by 20-25% after the first round of chemo, there will be very little else to do.

my sister is fighting and her spirit's up, but she is physically quite weak from the surgery and the long radiation. (she's been feeding through her stomach post surgery.) so, they're only giving her the chemo at 80% of usual dosage.

none of this sounds any good to me. having talked to an oncologist i know here and based on a bit of research, it is pretty clear to me that there have been many disasterous mistakes made so far, specifically by the first medical team who rushed her into surgery and radiation rather than trying chemo and radiation first to shrink the tumor to reduce the damage by the surgery itself. also, the fact that they did not take the new growth seriously at first has made me loose faith in the system altogether. though the attitude of the new oncologist seems much more acceptable, i worry that he too might be off track here and we might be loosing precious time.

i am not familiar with the american medical system and norms of practice. so i would very much appreciate any thoughts, suggestion and advice you may have in terms of what my family in los angeles should be looking into in terms of diagnosis and current treatment. thank you.

my good wishes have been with all of you since i found this board a few days ago.

be well.

gita