Greetings,
My mother-in-law was diagnosed with tongue cancer this past June. On June 23 she had about 1/3 to 1/2 of her tongue removed, with reconstruction and lymph node dissection on one side (pardon me if I'm short on details--my husband isn't great at passing them all along). The lymph node biopsy came back negative. Her tongue has remained very swollen since surgery. She had most of the new flap surgically removed about a month ago, and the tongue barely fit back in her mouth for a few days before it became swollen again. She is still--after 3 months--with a trach and PEG and with her tongue swollen well out of her mouth. It is now the good side of the tongue, not the flap that is swollen. Her surgeon (supposedly a top orgal cancer surgeon at UPenn is stumped. He mentioned removing even more of the flap, removing teeth, etc. We just started her on steriods to see if they would help, and she has a MRI scheduled for next week. He reports that he's never had a case or heard of a case with such terrible swelling for such a prolonged period of time. Needless to say, we are all very upset with and for her. Does anyone have any input regarding such prolonged swelling?
Many thanks!

Hi Erica,

I am sorry you have had to come to this site but welcome. My daughter has the OC but in the maxillary top of the mouth so didn't have these issues. Hopefully there is someone here who has some information that may help. I will be praying for you and your mother, take care.

God bless,
Bonnie

Welcome to the board. Evidently a lot of people are busy starting their labor day weekend because normally 'introduce yourself' people get answers pretty quick. We all keep our eyes on this area of the forum with the idea of helping the 'newbie.' There have been very few posts today compared to most days.

My treatment was not as severe as your Mother-in-laws and can't give you a comparison. I'm sure someone will come along with some answers.

In the meantime, on the top menu bar of this page, you should go to 'my stuff' 'profile' and then fill out the 'signature' block at the bottom. Check someof the signatures to get an idea of what to put. That way people will know more about your MIL's cancer. Hopefully the swelling will start to go down and she will get some relief.

With the holidays, (doctors all go too) this couldn't be happening at a worst time. I have never heard of this in all the years of posting here before. I don't like the idea that the doc doesn't have a clue, but at least he has said as much. I would not opt for any tooth removal and such, as this is treating the collateral issues and not the problem. The solution isn't to make more room, the solution is to reduce the swelling!! Steroids are a good start, but if in 3-4 days there are not measurable improvements, I would be on the phone to the doc and directly ask him what he is going to ACTIVELY do. That logically would be to bring in others or a referral to a specialist that has more experience, since he is out of answers. But if the steroids don't do the trick, don't wait for this to magically resolve. Be proactive. Also remember if they were not on top of this enough to tell you that steroids can be hell on the stomach, and that once you start taking them in any significant dosage you should not go off of them suddenly. One of their issues is that they trick your immune system into thinking it isn't necessary to stay on top of things, and abrupt ends to steroid treatment can leave people at risk for other things that immune system would have intervened in, while it gets back up to speed.

Erica,

Wow. I had a good chunk of my tongue removed in May '08, and the swelling went down enough in a week for me to be able to close my mouth. Nothing like what is happening to your MIL. She must be so frustrated and even angry! I have no idea what would be going on with her, just wanted to give a little support.

- Margaret

Hi Erica and welcome....sorry we didn't get to you sooner!! I actually went to UPenn and didn't have a good experience. Also, saw the head surgeon (supposed to be the best at Penn) The surgeon I saw did 3 partial glossectomies (removal of some tongue) and by the 3rd I said why do you think this is happening? He said "I don't know" So I now go to Fox Chase Cancer Center. Not to say changing docs is the best thing to do but I would start looking for a 2nd or 3rd opinion. Especially if they current doc doesn't know what to do.

My tongue swelled up during my last recurrence, to the point where I could not close my mouth. My docs said it was probably due to my immune system's reaction to the tumor in my tongue. Steroids did help quite a bit, but the relief was only temporary. After I completed the round of steroids the swelling returned and my doctors were hesitant about giving another round of steroids. Fortunately, after I had 1 or 2 chemo treatments and a couple weeks of radiation, the swelling went down substantially and stayed down.

Thank you for your kind and helpful words. I'm curious about the type of surgeon most of you are seeing. Our surgeon is an otolaryngologist (I think I got all the letters in there), but I've seen much mention of ENT docs/surgeons, and also wonder about the role of an oncologist. If we were to move forward with a second opinion, where should we be looking?

ENT is a Dr of Ears, nose and throat, an Oncologist is a Cancer Specialist and an Oncologist is one that does cancer surgery, That is my undersatnding. But why are you all upset with and for your motherinlaw??

Erica

Your doctor is an ENT. [quote]Otolaryngology (pronounced oh/toe/lair/in/goll/oh/jee) is the oldest medical specialty in the United States. Otolaryngologists are physicians trained in the medical and surgical management and treatment of patients with diseases and disorders of the ear, nose, throat (ENT), and related structures of the head and neck. They are commonly referred to as ENT physicians.[/quote]
As EZJim pointed out, an oncologist is any type of doctor or dentist who treats Cancer. As far as a second opinion, the general consensus on this board has been to seek one from an integrated team at a CCC (comprehensive Cancer Center). Your current doctor can arrange to have all the tests etc sent to a CCC. There not only an ENT surgeon but also a doctor of radiology (RO) and a doctor dealing with chemo (MO) all collaborate on a TX plan. My ENT had it all done for me at Georgetown University CCC Lombardi Cancer Center.
Good luck
charm