Thank you all.
Heather will be starting RAD Monday. I feel chagrined now about delaying the few days. I'm beginning to think that I shouldn't have done so much research. Although, if days are so important, I'm wondering why we didn't meet with the oncologists sooner. We weren't given a sense of urgency by the surgeon. Don't get me wrong, he is an excellent surgeon. Everyone says he is the best in our area. But I'm thinking he should have set us up to see the oncologists sooner. Even if she wasn't healed enough to start RAD, we at least could have had the options presented and decisions made earlier.
Anyway, although she does have nodal involvement, and I do understand the severity of this, we are holding on to the fact that the largest node is only 1.2 cm, there is no perinodal extension, no vascular or perineural invasion, no tumor necrosis or multicentricity, it is well differentiated and the mucosa is non-neoplastic. Now I understand the basics of all this, but I have no idea which of these diagnoses have the most impact. Does the fact that 4 nodes are involved mean the rest of the data is relatively meaningless?
She did have a neck dissection so the affected nodes were removed. Can we at least have a little hope that it hadn't spread beyond that area yet or is that mostly a false hope?
How true is it that this cancer is more aggressive in young people, therefore the chances it has spread further already are high?
Just as a recap, she first had pain in May, nothing was visible to the dentist in June (and he does do an oral check at every cleaning), nothing was visible to the GP in June or July, nothing was visible or palpable to the ENT the beginning of August, a CT scan showed nothing, but by the time the CT results were in, about a week, the tumor was visible & palpable. That sounds like it had a real fast spurt of growth and I'm assuming that is not a good sign.
Her CT scan of the chest and abdominal area are back and they are negative. But since nothing at all showed up on the original scan of the head and neck, how can we know it isn't in the nodes on the other side of the neck? They didn't re-scan that area. The RAD oncologist did want to radiate both sides of the neck, but the medical onc. doesn't seem to think that is necessary. And given the almost 100% chance of zerostomia, Heather is reluctant to do both sides. They will be giving her amiphostine, but it will be of no help if she can't tolerate it.
The doctors are sticking by the idea that chemo given with the RAD is not of enough benefit to be warranted and that the increased side effects are not worth the negligible benefits. We will be looking at maybe doing a chemo wash afterwards. We are still confused by this issue, but in order to get the RAD started, we had to make a decision.
I guess only time will tell if it was the right one.
Kim, I don't have the report in front of me, but basically her surgery consisted of removing a small portion of the back of her tongue (the tumor itself wasn't on the mobile tongue, but on the base), removing 2 teeth because it was very near the gum (it did not invade the bone), removing the 3 cm tumor and doing a left neck dissection. The path report shows that a 2.4 x .3 x.3 cm piece of anterior tongue was negative for carcinoma. The dental margin was also negative. It was 2 pieces each .8 cm in greatest dimension.
The neck dissection included the submandibular gland and was 16.2 cm long and varied in diameter from .8 to 4.0 cm. The submandibular gland was okay. The partial glossectomy measured 5.0 cm from anterior to posterior, 3.2 cm lateral to medial and varied in depth from 2.0 up to 3.5 cm. All the margins were negative for carcinoma. Now I understand most of what I just wrote. The rest is about the tumor itself, but it is a little murky. I am going to put it exactly as stated in the path report. Any enlightenment would be appreciated.
"Centrally located on the mucosal surface is a depressed area with a friable gray ulcerated lesion measuring 3.0 cm from anterior to posterior and approx. 1.4 cm from left to right. Anterior to this lesion is a firm white plaque-like area measuring up to 1.5 cm in greatest dimension. This white plaque is located 3.0 mm from the resected anterior mucosal margin. Located 2.0 mm from the sutured dental margin is a glistening tan raised nodule measuring 1.5 x 1.0 cm."
What do the white plaque-like area and the tan raised nodule mean?
We do not have an MD coordinating everything. We have just been referred from the surgeon to the medical oncologist to the RAD oncologist. We have talked to an onc. nurse and have been given lots of info about pain, feeding tube, importance of nutrition, maintaining weight, etc.
I'm sorry this post is so long. If you got this far, thanks!
Rosemary
(I should change my member name. Don't know why I picked Rosie, haven't been called that for years except by my Mom and sister.)
