I see a lot of people on here that say they lost their teeth, as I have. But I don't see anyone that has had dentures made. From what I read, you should wait at least six months after completion of radiation and chemo before getting dentures made. But do some people just stay "toothless" for the rest of their lives? I start my radiation and chemo Nov. 30th so I am new to everything.

Bloop, most people do not stay toothless. Im waiting to heal so I can get teeth made. Best of luck with your treatments.

Thanks Christine. That makes me feel a lot better. It looks like you've been through a lot. Is recurrence a common thing? That's another scary thing. How in the world do you cope with that?

Bloop

I cannot speak for Christine but it does seem to me that she and I who have had recurrences are in the minority of the 6,000 plus OCF members. The recurrence forum specifically references that we were "dealt a hard hand". I hope you never join our little recurrence club. It is extremely hard to deal with but what's your choice? Let's just hope this is merely an academic question for you.
Charm

Charm, Well I kind of feel like this is my second bout with cancer since the ENT told me after my partial glossectomy that he had gotten it all and there were clear margins. A month later it's in my lymph nodes. They are going to radiate both sides of my neck since the original tumor was in the middle of my mouth and they just did a right neck dissection. Hoping it doesn't go to my left side next. I'm just amazed at seeing clear pet scan, then recurrence. I don't get how in this day and age they can't get it all in one shot. Cancer is a BEAST.

Bloop

Certainly counts as a recurrence in my book. Sorry I did not pick that up from your signature line. BTW, your clear PETscan does not surprise me at all - regular readers know how worthless I have found them to be for oral cancer. I was especially ticked off to have a full October 08 Petscan show all clear on my left side but high SUV on the far right side and in Nov 08 have my ENT discover a lump on the left side of the base of my tongue with nothing at all on the right side. I'm with you on frustration over the 20th century Cancer tech in the 21st century

Bloop, please dont waste time being concerned about a recurrance. It doesnt happen that often. I unfortunately have had cancer 3 times in 3 years. I refuse to even consider that I am one of the people who die within 5 years of their first diagnosis. You were lucky to have had the cancer found so quickly after your first time.

With every recurrance, I have the same attitude as I did the first time. Just fix me. This time I was more insistant with my ENT, I told him I cant continue this every year, do what is necessary to remove the cancer. After each time I have had clear margins and clear PET scans showing no cancer. Now, to me the PET scan isnt something that I believe in anymore. Charm, Jim and I are definitely the minority. Just look at some of the other frequent posters like David and Jerry. They endured having oral cancer once and now are leading healthy, productive lives.

Christine, you've got a great attitude. I started off thinking do whatever is necessary, but as I go along I worry I've bit off more than I can chew. I haven't even started radiation and chemo yet and I feel like I've been through the mill. And I haven't had much of anything compared to others. What a learning experience. I am going to hope I can get strength by osmosis from you guys because I know no one else around here that understands in the least what kind of radiation it is with the mask and all. They've had skin cancer or breast cancer and they tell me radiation is only a few seconds and no big deal. My radiologist already said 20 minutes, so it's obviously something different.

Bloop,
My psychologist taught me how to relax. I will be using that when I go through the radiation. Think of a place that you would like to be that is peaceful. Close your eyes, take deep breaths if you can and note all the surroundings and details of that place. It works wonders for me. He even gave me a CD guiding me through the activity. If he will let me burn it I can send it to you. I used it yesterday to calm down and get rid of anxiety, and I will probably put it on again since it is 2:00 AM.

I think I need to add psychologist to my doctor list. It is covered with my insurance. I went when I broke my shoulder and it helped a lot just being able to complain to a neutral voice and giving my sister a break - lol. I thought I felt mamed then because I will never have full use of my left arm. But this is a whole different story of being disfigured. My sister said people probably think I had a stroke. That makes me not even want to go in public or if I do not speak, not to mention I have no teeth.

I guess I am luckier than most in some respects. I am a denture technician and can make all the dentures I want but have chosen not to do so at this point. In fact, the muscles in my neck and jaw and lips have become somewhat ossified and no longer respond to signals to open like they should. You should be able to open your mouth to where three fingers will go, in an up and down fashion, not flat. I can't get one finger between my gums! Now that is bad. I exercise my jaws daily just to keep them that flexible.

Bob in Rudy

SCC base of tongue Feb 08
PEG in March 08
Teeth removed March 08
5 weeks rad/chemo Cisplatin Feb/March 08
Surgery removed tumor size of thumb June 08
25 lymph nodes excised same surgery
Several Dilations
Larynx removed Sept 21, 09