My brother had a total glossectomy in October and went through radiation and chemo that finished in January. His problem (besides not being able to talk, eat or swallow!) is a persistent swelling in his neck and jaw, mostly on his left side. He has been prescribed antibiotics, anti-inflammatories, etc., to no avail. He cannot sleep well or at all and now the swelling is becoming hard and painful for him. So my question is, is this a normal reaction that will subside as time goes on, or is it something to get worked up over? His ENT has seemed to lose interest in his case now that his surgery is over and my mother (his primary caregiver) can't seem to get anyone to give her an answer. Maybe there is no answer? If that's the case, we would all rather know the truth so we can all prepare for what lies ahead.

Thanks for giving me this forum to look for answers and ask questions.

I had lots of swelling after radiation--I still do have some in my neck, though very minor compared to what it once was, so I think it's early days yet in terms of your brother--the swelling from the radaition will go down over time.

I was still taking prescription painkillers at two months after rad and chemo (didn't go off them unti, about four months out--I still had some really bad mouth pain even then) so whatever pain I had from the swelling was controlled pretty well. is your brother getting adequate painkillers? It sounds like if it's pain keeping him up at night the answer is no.Perhaps that is what you should be discussing with his doctor.

Good luck. The recovery period can seem so long and the progress so slow sometimes but it really does get better.

Nelie

Dear 096, I think I would be camping out on the ENT's doorstep until you got some help- OR the radiation Doc's doorstep or your brother's primary care Doc's doorstep to get referred to someone else. Your brother has alot of recovering ahead and will need some good medical help along the way [and so will your Mom} Don't let any of the medical folks intimidate you. Amy

This swelling is not from infection. It is caused by lymphatic fluid build-up.
The normal paths of lymph drainage have been compromised by radiation. This swelling is more prominate during times of slight other infections, viral invasions and common colds.
When I get a cold, my neck swells like a bull in season.
Darrell

Right Darrell. And that big lump on __________ neck is not cancer, it's from a cold.

Hi Simmons,
Since you are in Houston, I assume your brother is being treated at MD Anderson. If not, I would suggest that you get a second opinion on the best protocols for post-surgical treatment from them.

Most comprehensive cancer centers (maybe all of them) use a team-based approach so that you have a number of specialists to provide support in a situation like this. Best, Sheldon

Well, tried to post a reply but since I'm kind of new to this, it vaporized...

In any event, I just wanted to say thanks to all who offered advice. This has been a difficult time for Mark and all of us, so I know some of his discomfort is just anxiety and stress. He's practiced yoga for years and that has certainly helped him through this. He is excited about feeling better so that he can do some of the more strenuous exercises.

And Ssax, unfortunately, he's not at MD Anderson. He is a daytrader without insurance and couldn't get in there in time. He was able to get surgery at UTMB in Galveston, though, and they have been truly wonderful and professional. I just get the sense that some of those docs are focused on the 'big' cases and post-surgery consults are not where the excitement is. Maybe I'm too far removed because I haven't been there all day every day with him. It seems strange to me though, that if you have a patient who has been through life-altering surgery and is now communicating to you that he can't sleep and his neck looks like the Elephant Man... you do something! They give him liquid morphine when it gets really bad. Is there anything else that you guys think he should be taking?

Thanks for all the replies. It really helps. It's amazing to me that this kind of surgery is possible at all, so my family is grateful that he's still here with us. I have to say, in spite of not having a tongue, he's actually doing pretty good. I'll forward your replies to my mother who will make some detailed notes to take to the docs at UTMB. And we will camp out on their doorstep! I don't have a problem with that at all!

Please make sure someone addresses your brothers problems. Two reasons........one so that any pain he is having can be controlled. Two so that if this swelling is any remaining cancer that it can be dealt with. That said, let me say that I did have swelling in my neck from the disection, but I don't see that your brother had a neck disection?? I would push hard to have him examined by someone serious about getting to the bottom of the problem

Hello - my husband John had a lot of swelling around his jaw and into his neck area after completing chemoradiation in December. He didn't have any surgery. It was ( and still is) worse in the morning after sleeping all night.

The radiation oncologist dismissed it as "radiation dewlap" - the build up of fluid that others have talked about due to disruptions in lymphatic fluid flows. Lately, it has taken on a more woody texture but the doctors keep assuring us that these changes are normal for many people.

John has no pain associated with the swelling though and that is a big difference from your brother's situation.

Mary

The last CAT scan he had (2 weeks ago?) revealed no cancer, so that was good news. The concern I have is that his neck is now getting hard and tough, still swollen, and red. Is that to be expected? I realize that the radiation has literally burned him from the inside out, but not having had any experience with it, I got no clue...

I think he signed up today after I emailed the link for this site so maybe he'll post with more detailed information than I can provide. I'll encourage him to do so. Thanks again to all. This site is a lifesaver!