Hello,
I'm a caregiver and husband to (Katie B. on these boards) who was diagnosed October 2012 with cancer of the tongue. She had two partial glossectomies followed by radiation/chemo (and then more chemo).
A PET scan, a CAT scan, and an MRI later, all point to *something* at the base of the tongue. It may be scar tissue. It may be a tumor. I'm terrified of it being the latter. A biopsy is scheduled for 9/11/13 in NYC (of all days!) and we'll know the results on 9/25. One fear I have is that it's a tumor and the surgeon will want to do a total glossectomy.
I have to say that the last 10 months have been among the hardest of my life. Having to constantly be the rock for everything to break against is bone-weary tiresome. Our kids (ages 5 and 6) are young enough that they don't really understand what's going on (a blessing, perhaps), but I'm actually having nightmares about possibly having to explain to them that "Mommy can't talk anymore" and "Mommy can't eat anymore."
Katie's in a great deal of pain and is not sleeping at night. I've finally convinced her to meet with a pain management specialist and am hoping that she'll soon have some different meds to aid in her sleep.
Katie's been on these boards but hasn't been active in awhile. I'm actually quite curious whether she'll find these posts on here.
I know that it's probably premature for me to be asking questions about a total glossectomy, but I'm trying to prepare myself for one possible future, as depressing and terrifying as it might be:
1) For those of you who have had a total glossectomy, is it true that all speech is gone? What about the mechanical voiceboxes I've seen some throat cancer patients use (usually because their larynx is removed). Does the loss of a tongue prevent even those kinds of devices from working?
2) What about eating? If Katie loses her tongue, is all food off the table? I understand the difficulty in swallowing without a tongue. Can the mouth or throat muscles be re-trained to do some of that work?
3) If the biopsy shows that there's a BOT tumor, does that automatically mean that they'll do a total glossectomy or are there such things as three-quarters glossectomies where some of the tongue is left behind upon which other tissue can be grafted? I've read about some of this, obviously; I guess I'm looking for first-hand accounts of people who have already gone through total (or almost total) glossectomies.
4) If we end up having a consult with the surgeon about a glossectomy, what questions should I make sure to ask him/her? I have a few already but I'm quite sure there are things I haven't thought of.
----
Damien, caregiver/spouse to Katie B (age 39)
09/12 Diagnosed SCC on right side of tongue.
10/12 Partial glossectomy
11/12 2nd partial glossectomy, MND (3/28 nodes positive for SCC)
01/13 RO and Chemo
04/13 2nd round of Chemo
08/13 CAT/PET scans show mass at BOT
09/13 Biopsy (awaiting results)
