I know, it can be overwhelming. Eventually everything will fall into place.

As far as all your teeth being removed, that's not done automatically anymore. It depends on the condition of your teeth, and gums, and if compromised can they be repaired or then extracted. Before my initial radiation I had one extraction, one root canal and filling. During and after radiation utmost oral care is needed, including prescription fluoride for life.

On another note, after treatment, dental care is not covered such as the case with Medicare. Before treatment, if any dental work needed to have treatment is covered.

Christine,
I am being treated at the Comprehensive Cancer Center in Las Vegas. Is this what you were referring to, because the link does not work?
Camille

There are many CCC's. The top CCCs that come to mind are MD Anderson, Moffitt, Sloan Kettering, Johns Hopkins. Im not familiar with a CCC in or near Vegas. Sometimes it gets confusing trying to tell the difference between facilities. Are they using a team based approach where all the professionals work together as a team to create a treatment plan? Maybe your treatment facility is a cancer center instead of a CCC? At OCF, we value our members privacy and since we arent in the physician/facility referral/feedback biz, dont feel you need to tell us where you are being treated thats your private business.

I'll fix the link and add it below. Im very sorry it didnt work!


NCI Designated Cancer Centers, search by state or map

If you are with a CCC, it’s worth finding out if there is a dental department. The dentists there specialist in cancer patients and their difficulties with teeth, mouth opening etc. they can also consult with your regular general dentist if necessary.

I hate to add to your confusion and debated whether to post, but feel I must comment about the rad oncologist's response to your husband about dental questions. It is correct that teeth are no longer routinely removed prior to rad therapy. However, saying it can be taken care of down the road is not good advice (unless delaying rad therapy is inadvisable.) However, I do not see that that reason was given. Any dental restoration that can be done prior to treatment should be considered. It's not just extractions as Paul explained.

Were you not advised to have a comprehensive dental evaluation with teeth mapping and fluoride trays made? Only then can an educated decision be made about any dental problems. It's important to see a dentist knowledgable about oral cancer, which is difficult outside of a CCC. It's overwhelming, I know and sorry you have to deal with this.

Hi all,
Well I had my appointment on Monday with my surgeon and he went over the biopsy he will do this Saturday. I also met with the surgeon who will do my port for the chemo and my PEG tube at the same time while I am out for the biopsy. I keep having conflicting feelings on this PEG tube. Part of me thinks I don't need it and I am really dreading it, and then part of me says maybe it's for the best. I just don't know what to do, but know the thought of it really scares me. Can anyone here that has had one be so kind as to enlighten me what it is like? I also met with the oncologist who will do my chemo and he said it will be once a week for 7 weeks. He said he could go once every 3 weeks but that is very brutal and he doesn't think I would tolerate that well. He is supposed to talk to the radiation oncologist and give me a date they will start all this. I think reality has really set in now, and it feels like I am in a nightmare I can't wake up from. Just having a really down day, but keep telling myself it will get better.
Camille

Wow, you have done alot! Im glad to see you will do weekly chemo instead of the 3"big bag" method. Smaller weekly doses are so much easier to tolerate.

Often cancer patients feel so overwhelmed and like they do not have any choices regarding their treatments. When they get the opportunity to make a decision they will usually say no. This is all too true when it comes to feeding tubes. I too thought it would be awful to have one but that quickly changed when I started having problems eating and was dropping weight so fast my nurses started weighing me daily. Its better to have one and not need it than to need one and have to wait a couple weeks to get one. Your sense of taste will change and you will probably have a very sore throat making swallowing a challenge. You could have these issues for many weeks making eating and drinking pretty difficult. Im very pro-tube. After watching hundreds of patients over the years go thru rads, its pretty rare someone gets a feeding tube and doesnt use it. On the other hand Ive seen too many suffer thru not being able to eat or drink very well and drop significant weight only to end up getting an emergency feeding tube. Its better to have it than to end up struggling and waiting to get one. I also suggest eating all your favorite foods now so you dont go into your treatments having any cravings.

Christine,
Thank you for answering my question. I know the PEG tube will be for the best, as right now I am having a hard time eating anything. My tongue is so sore and in constant pain, if I try to chew anything. I just tried to eat some pudding for lunch and couldn't even manage more than a few bites of that because of the pain. My ear and jaw are still aching also, so eating anything is just too painful right now. I have lost 4 pounds since last week, so know that's probably not good. Guess I will see what I find out from my biopsy on Saturday and then find out when my treatments will start. My chemo oncologist gave me a prescription for Magic Mouthwash and i tried that last night but my tongue and throat burned so bad after that. Is that normal or is it too soon to start using that already? Thank you for all your help. I just want to get this started and done and over with.
Camille

Hi all,
I had my biopsy of my tongue on Saturday and my surgeon said it is another squamous cell carcinoma (this time at the back of my tongue). He thinks it broke away from the one at the front of my tongue and was too small to be detected by the PET scan I had done in April before my first surgery. I also had the PEG tube inserted along with the port for the chemo. I don't even really feel any pain or tenderness where the port is, but where the PEG is my stomach is so sore I can hardly stand it. Can anyone that has had the PEG tell me if this is normal and will this soreness subside? The surgeon showed me how to do the cans of J (forgot the name sorry) and I have been doing them as my tongue is still so sore, I am having a hard time eating anything. Not sure what happened either during all the procedures but got home from the hospital Saturday evening and my left eye is all swollen and bruised on the eyelid. Looks like I lost a boxing match lol. Anyway, looks lie I will start my chemo and radiation next week. Hope I feel somewhat better by then.
Camille

Yes, unfortunately most patients are very sore after getting their feeding tube. It does subside but the first 2-5 days most patients are in alot of pain. You never know just how much you use your abdominal muscles until you try taking it easy and not using them. I felt like I was sore for a couple days more due to moving differently and babying my abdominal muscles. Kinda like when limping the next day your entire body hurts from walking differently.

If you need any help with the feedings, let me know. Ive used a feeding tube for most of 10 years and have many little tricks to help make it easier to tolerate. For example... if you have an upset stomach after feedings, usually slowing down and adding water will solve the nausea.

You should be feeling much better by the time you begin your chemo and rads.