for those who have had surgery for BOT cancer, wondering what recovery was like. Our area does radiation and chemo before doing surgery but I know some areas start with surgery.

If it is oropharyngeal base of tongue cancer, at our hospital they only do radiation and chemo. One doctor once commented that it’s very difficult to do surgery because it is hard to get to. He said something about breaking the bones in the jaw and cutting out the tongue. I don’t know if he was being humorous or brutally honest. However, I have read on this forum that a couple of people have had surgery, though this seems to be a very small number of people.

My husband had about 80% of his tongue removed and a radical neck dissection then had 30 radiation treatments and five doses of cisplatin. The recovery from the surgery itself is tough but I will say that once Bob had the surgery, the pain was gone. I was amazed that two days post surgery, he was only taking Tylenol for pain. I think for him the hardest parts were the drains in his neck and the tracheostomy. He had four drains in his neck and two in his thigh (where they harvested muscle for his flap). His speech came back fairly quickly (two weeks or so) and he was pretty easy to understand. Certain sounds are gone forever but he can usually find another word that works just as well. Bob had speech therapy, lymphedema therapy and physical therapy. He did lose some range of motion in his right arm due to nerves being damaged or cut during the neck dissection but as he says, he’s not pitching for the major leagues so it’s not a problem. Swallowing took a lot longer than we expected but he made small improvements every week and was eating some soft food yogurt, soup, ice cream within 12 weeks or so. Unfortunately, his cancer has returned and has spread to his left lung so much of his progress has been lost. Bob said he’s glad he had the surgery as hard as it was because if he had opted for just radiation and chemo, he might always wonder what if.

thank you for the responses.

this is what we are looking at possibly. he had radiation and chemo and now they are going to do a biopsy and if it's positive, do the surgery through his neck on the spot.


so sorry you are dealing with this Eileen. I am beginning to think I need counseling to go through this all again.

Thanks, Connie. We knew it was a possibility because after the surgery they told us there were positive margins. Just thought we’d have more time. I wish you all the best!

I’m sorry to hear that Connie. Has he been offered immunotherapy? Ask your doctors about it.

Doesn’t it sometimes feel like you can’t get off the treadmill? If you need counseling, it’s perfectly all right. I saw a therapist too.

thanks Gloria.

the worry may be for nothing. he had one before but the cough is back, voice issues, etc. I've been sitting back and concerned for a couple of months now.

consultation isn't for 3 weeks so no news for awhile.

hard to sit back and watch so much drinking, really poor diet, just sitting since no jobs have worked out..