Hi, new here and very new at dealing with cancer. I have mouth cancer. I don't smoke, drink or chew. I stopped smokeing 32 years ago. They say my cancer is most likely cause from my partial rubbing. I went in on July 8th. 2008 to have a sore place checked and she took a biopsy. On July 11th. the butte image call me to confirm a appointment and when I said I didn't know anything about it, she said the doctor's office set it up and I said that means something wrong with the biopsy and she said yes. What a way to find out on a Fri, when the Doctors office would be close the next 2 days. When I went to doctor on Mon. she had already set me up for surgery. She wouldn't give me details or answers to my questions, besides she was going to take the place out and I didn't want mouth cancer. she order pre-surgery test, It was a mad week I'm worried to dead and trying to get test and records from other doctors become a night mare. I had surgery on July 24th. She come in and told me that she got all the cancer out of my mouth and that it was not in the bone. (she also told husband and family this) When I went back to doctor on Aug. 4th. she told me it was on the bone and she couldn't be sure she got it all. she told me I would have to make up my mind whather to have chemo and ratation, I said why would'nt I want it if it would kill the cancer and I ask again about the side effects of chemo and she munble something about hair lost. I told her at this point, hair was my least worry. I feel like she lied to me, I will never trust her again. When I try to ask her questions about the cancer and what to expect and she just kept talking about something else. The 4th. time I asked her she threw up her hands and said we could take your jaw bone out and take a place off your arm and patch it, you don't want that. I left there thinking it was so bad that she couldn't tell me. I wonder how long I would live, 2 months maybe a year. I went to the cancer center on Aug. 7th. They answered all my questions and more too. they told me the good and the bad. They are going to do a pet scan and give me radation and small amounts of chemo. they said it would burn my mouth and throat so bad I would have trouble eating they want me to get a feeding tube. I'm scare, but I feel so much better knowing what to expect. I got a copy of my records from the cancer center. It tells how deep the cancer was and all about it. one place catch my eye it says the wound was carried deeply to the mental area, what is the menal area of your mouth? I understand down in the muscle and the rest of it, just not the mental area.

Wilma:

Welcome to OCF. It sounds like you have already gone thru some rough times with your treatment and have more to go. Its not an easy thing going thru cancer treatments, especially for oral cancer.

Its a good thing you have gone to a cancer center. Im sure it has eased your mind having answers to your questions. Im sorry but I dont know what they mean by the mental area either.

It would be helpful if you could add any info you know pertaining to your type of cancer and your treatment to your signature. It will help others to respond to your posts. There is alot of helpful articles on the main pages of OCF. Feel free to ask any questions you have here, there are alot of people that will try to help you thru this difficult time.

Hey wilma.you sure are doing this tough girl.As to your question,i just wonder if you have read the word correctly i havent heard of this area,but i am sure if you have read it right brian or some other authority on anatomy will fill you in.The nearest i can get is the medial area.

its a good job you have found a cancer centre,and lets hope they continue to keep you in the loop.

liz

Thank for replys, yes I read it right and grand dautgher read it too.
I went and added to my signature, I will find out when I post this if I did it right, I'm new at this.....

Hi Wilma,
Was the record you are reading from typed or hand written. I am thinking it may read mandible ?

there is a mental foramen in the mandible about right under your bicuspid area. It is a hole in the bone that nerves pass through.

It is typed, it's talking about going thur the gingival area down to periosteum superiorly and leaving a margin as best as could be visualized with the 15 blade, extending into subcutaneum and down into the muscle. the 15 blade was then used to scrape the specimen off of the periosteum and bovie cautery was used for hemostasis. the wound was carried deeply into the mental area. don't know if that helps that is word for word part of the report. there is a lot more, she had to pull skim up from chin and lip area to cover. after she had stitched and was done she checked test that was done on a specimen taken at time of surgery she had to go and do more surgery to take more out.

thanks Brian

Wilma,

Continue being pro active in your care. Ask all the questions you want and make sure you get answers that YOU understand. Take your daughter with you and write down all your questions and their answers. Ask any questions here as well and vent when you need to. The mental aspect of this cancer is 50% of the battle and it's often overlooked when you get treated for the cancer.

You might want to read up on HPV as it may have been the cause of your cancer. Just click on HPV and it will take you to tons of info. You can have your cancer cells tested for the virus if you want to.

Wilma,

The description of where the surgery was is using the term mental in order for the doctor to show the location of where the surgery was and you really don't need to bother too much about this. Brian, as always, is correct. This is the area where the bicuspid teeth are. These are the teeth right behind the canines and are the 4th and 5th teeth back from the middle.

It's unfortunate that your doctor refused to answer your questions and there is no excuse for that. It seems like maay members have run into this problem with their docs. I just don't get it. No one should be treated that way. It sounds like you are in a better situation right now.

Good luck with your treatment and keep us posted.

Jerry

One thing I was wondering about is, if they put in a feeding tube will I still be able to drink or eat anything thur the mouth, It would be nice to at least be able to drink as long as I can, to keep the mouth wet. how long do they leave in the feeding tube after ratation? Most likely it would be till the mouth and throat heals, I wonder if the burn is like the one you would get from boiling water and would take about the same amount of time. I'm hoping I'm looking at about 6 weeks of treatmemt then 2 more weeks to heal...I also know that things don't alway go as planned.

Wilma,
yes! The PEG tube does not prevent you from eating and drinking normally. Those who have it use it only when they have to. Also most continue to at least drink some liquids normally.
If it becomes to uncomfortable to eat drink normally you switch to the PEG and as soon as you can eat and drink normally you switch back. For most this is also gradual. It is also great to ensure that you get the hydration you need. The feeding tube comes out once it is clear that you get enough calories the regular way, so that time varies. Taking it out is a snap! (literally).
The timeframe you list is extremely optimistic, I am not trying to freak you out, but you are not just treating a cold here. You may be up and perhaps working 2 weeks after the radiation ends. If you are very lucky and even then you are most likely as weak as a dog and are nowhere near where you were before the ordeal.

Best

M

Wilma:

As far as the feeding tube goes, it will be up to you how long you have it. You must be able to take in enough calories by mouth and of course swallow meds to be able to have the peg tube removed. Keep eating and drinking during your treatments it will help you to be free of the peg tube faster. Everyone responds to treatments differently some are rid of the tube a month after treatment ends, others like me still have it a year later. Same goes for the mouth sores and all the other side effects, everyone is at their own pace. Sorry there isnt better news about a timeline.

Thanks, I'm so glad I found this site, the cancer center is good at answering questions.....but people that has been thur it can answer them better and as I sat here and things pop into my mind, I can just ask without waiting to see someone, this is great. again thank you
Wilma

Feel free to ask your questions. There are many who will be able to answer them for you.

I think maybe you better plan on more like a few months to heal properly. Not trying to scare you, just being honest like these people were with me. I sometime wish I hadn't of turned the tube down and maybe I wouldn't have lost 70 lbs, but I did. I wish you all of the luck in the world and the best to you.

Ezjim what was it like without the tube, he told me I didn't have to get it, but if I got where I couldn't eat, that they would have to stop the radation untill I healed and then put a tube in and start again. I don't know if I want to prolong treatment like that....I need to know all I can, and I know everyone is not the same....but it helps to know everything....Thank you
Wilma

Wilma,

I didn't want the Peg and my doctors went along even though I couldn't afford to loose a pound going into Tx. I didn't find this site until after my Tx was over so I didn't have this site's wisdom to help guide me. It probably wouldn't have made a difference in my decision not to get the Peg because I was in denial and I wouldn't have listened anyway.

That said, I am glad I didn't get the Peg but I will tell you there were times when I could have used it. There are times when my mouth was so sore and the pain meds were making me so nauseated that swallowing anything was horrible to impossible so I would lie to my wife and tell here I was drinking my water and my food when I was not. That led to dehydration, constipation, weakness and 3 trips to the ER to get fluids. The reason I am glad that I didn't is that it did cause me to keep swallowing every day and I never have any swallowing problems.

If I had to do it over again, God Forbid, I would want weekly chemos instead of a big bay every 3 weeks; I would want frequently SCHEDULED IV fluids; I would want to target 3000 cals a day instead of 2000; I would get a Port and I wouldn't get the Peg.

Thank you David this is what I'm looking for, the truth of what other people has gone thur and what they would do if they had to do it again. All of you are just great, With your help I know I can get thur this. One more question, (well maybe a few later...lol)did you have to give up driving? My husband is a lot older and needs a lot of care about meds. cooking, shopping. we can get some help from family, but they all work or have small children. Will I be able to do any shopping, maybe with the help of a cart, or do you have any better days? Do I need to see if I can get some kind of help with house, shopping,and picking up meds, things that have to be done.
Wilma

Wilma:

I dont want to scare you so I will start off by saying everybody is different. I was unable to drive at the first week of treatment. The first round of chemo wasnt so bad that hit me about 10 days later. I was already feeling pretty lousy by the time treatments started. I had the peg tube and port placed, had 3 teeth removed and already had a very sore mouth only a couple days before treatment started.

I had no strength to do grocery shopping, cleaning, laundry. I wasnt going to be out in public picking up so many extra germs when my immune system was already so compromised. That isnt even taking into account for the nausea I got just going from the car into the hospital for treatment. A few times I was frantically running looking for a place to puke. Also several times I wasnt strong enough to walk and needed a wheelchair.

If I had to do it again, I would still have gotten the peg tube and port. Both have been very useful to me. The only things I would have done differently are to get more helpers and drink more fluid or put more down the tube. Then I would have avoided being admitted twice to the hospital for dehydration.

Basically you will need help. Anybody who asks what they can do for you, give them a job, now isnt the time to be proud. If you havent already, call the American Cancer Society. They can help to find someone who may be able to transport you to treatments. They will can help pay for medicines as some are very expensive ($100 a pill). Start lining up helpers now so your mind is at ease when you dont feel the best.

Dont forget, everbody isnt the same going thru this. Some people dont get the worst side effects til the last week of treatments.

If I'm I getting this right I would most likely be better with a peg tube and still drink all I can thur mouth to help keep it moist and so it won't be a problem with swallowing later and useing the peg for high engery drinks, when I just can't eat. and to get plenty of water in me, no mather what.
I think I knew about driving....lol I was just hopping that I would have a few better days, like week-end when I didn't get the radation. I don't feel like cleaning house now, so I gusse I had better start planning. I have about 6 weeks before they start, they want me to come back on the 2nd. of Sept. Now I'm wondering about the 5 teeth that I have it's set up with a lot of medal to hold the bidge. He ask me if it was wired in. I told him no. it was put in over 40 years ago, it is cemented in good. He just wrote it down, I wish he had told me. I most likely have filling in the teeth, it's been so long I don't remember.
Thanks Wilma

Wilma:

Its entirely up to you if you decide to get the peg tube. There are both pros and cons for having it. The main thing is that there could come a time when you can barely swallow water much less eat something. Thats when the peg tube is a lifesaver. It can be uncomfortable at times and its a bit of an adjustment having it there. No matter which way you go, just remember trying to get 2000 preferrably 3000 calories in per day without one isnt easy. Same goes for minimum 48 oz water and still try to swallow everyday. There are some people here who can do it, I wasnt one of them. Just keep eating anything and everything you want now. It could be some time once treatment starts til things taste like they should again.

You have lots of time to prepare for everything you need to do. Lineup the helpers now.

Hi Wilma, I am going to second what Christine just said- If you are THE caregiver to your husband now, it is probably going to be very tough going for you while you go through your treatment. Round up all the help you can for shopping, cooking, house keeping whatever -- as to the feeding tube-- if your husband isn't able to help you go through this, then a peg tube will be a really good safety net for you if for no other reason than getting medications down and staying hydrated. [and having a port for chemo and blood work and invusions is a "no brainer" to me, but I guess it depends on how good your veins are and how much you like being poked on]. Some people sail through this, but most do encounter some rough spots along the way. We just want you to be prepared. Best luck. Amy

Wilma
you definitely do NOT want to take a break in your radiation schedule.
Also, if it turns out that you would need a PEG the effects from the insertion are likely to be miserable (inflamed mouth).
I did not use the PEG for a long time and I hated the thing, but if I had to do this again, I would get both the PEG and the port again. Having a PEG does not mean that you all of a sudden forget to swallow.
I used mine primarily to supplement my liquid intake (about 4 weeks) and for a shorter time for food supplementation (2-3 weeks). No ER visits for dehydration.

M

markus, how long did you have the peg, how long after radation was it taken out? what kind of problems did it give you?
was you able to eat soft food and drink, all but the 2-3 weeks that you did food supplements. I think I could go that way. eat what I can and take in extra water or what I need thur the peg. I'm not wanting to come depended on the tube, If I go that way I only want to use it when I have too and get rid of it as soon as possable. If when I started loseing too much weight or not being able to get what I need thur the mouth can I do both. like do at lest 1 food supplement a day. untill I have to depend on the tube. From what I'm reading there is times when it is inpossable to eat or drink. I do know that everyone reacts different to the tube and radation and chemo....It just helps me knowing what can happen, I don't like susprises. If it can happen I want to know, If it don't happen no harm done. It helps me deal with things. I want to keep all the water and food in me that I can. most likely, most of it I will throw up anyway. Boy I'm really looking forward to this....NOT

one more question He said I would need radation with a small amount of chemo, how is that done, He said that they would put a port in, he checked the veins in my arm, do i get both at same time or wait till ones done to get the other?

Lets see
I got the PEG after the first or second Rad treatment (24th of May). At that point there were no effect from the radiation. It was taken out in August, once it was clear that I could eat enough normally. I would not worry about PEG tube addiction, I cannot imagine how one gets addicted to the thing. Pain medication, is a different story.
It is best if you do not throw up. The medication/chemo makes you nauseous but there are drugs to hopefully avoid this, this is something to prepare for (your mouth is really sensitive).
Re small amount of chemo. I am not sure what this exactly means. From what I gather you are getting radiation with concurrent chemo. There are generally two ways of doing this. Big amounts of (cisplatin or carboplatin)** typically 3 times, or alternatively, weekly. If you get this weekly the dose is lower (see my signature) and the drug is better tolerated. The point of concurrent chemo is to sensitize the cancer cells and thereby enhance the effect of the radiation and also to provide some protection against cancer cells that may have migrated or are about to do so. I think this is what he MAY have meant but you want to check on this! In order for chemo to be useful you cannot just take a little bit.

** You could also be getting other chemo drugs such as 5FU etc or something like Erbitux.

Hope this helps

Wilma,

Each of us can respond differently so you will just have to wait and see how you will handle this crap. Again I was/still am a very do it yourself stubborn type and I drove myself to and from Tx which was an 85 mile RT way more than I should. I didn't want to impose on my wife or others to cart my butt around but there were many times towards the end that I shouldn't have been allowed behind the wheel not only for my safety but for everyone else around me. Sometimes I would go thru a stoplight and not even remember if it was red or green!! Finally it got so bad for me the 2 weeks post Tx that I had to let others drive.

During all of my Tx I never drove at night so I went appx 9 to 10 weeks without night driving and when I drove at night for the first time, it was weird to say the least.

Wilma,

If you are going to get the PEG..and it looks like you are leaning that way, I would recommend that you have the surgeon put your port in at the same time. One anesthesia, one day and about three days of recovery at home. In Bill's case, he took his first weekly chemo on Thursday, had his PEG and port placed on Friday, recovered at home over the weekend and then started his radiation on Monday. He was sore and needed someone to care for him during those 3-4 days but by the next week he was doing better and able to go to work. Starting about week four of treatment, he needed someone to care for him...driving was not safe and he felt lousy. He never had severe nausea..and never threw up...just felt lousy and weak and his mouth and throat hurt requiring heavy pain meds.

You will be able to eat and drink by mouth as much as you like with the PEG tube..it doesn't get in the way of that at all (except for the couple of days following the surgery when you don't feel that well.) In Bill's case he ate by mouth all the way thru week three of his treatment but starting mid-week four, the pain got severe enough that he went totally on to the PEG for his food (we had cases of cans ready)and meds and only drank 1 bottle of Gatorade by mouth per day to keep his swallow mechanism intact (I would set the bottle beside his chair each day and remind him to finish it...not easy, but he did.) He started eating by mouth two weeks after his treatment ended.

He had a very easy time healing from the tube placement...no problems with infection or soreness (after a week or so.) I would clean the area on his belly after his shower each morning and put a fresh gauze pad around it (they make a split pad that slips under the little button on your belly,) then help him wrap a large ace bandage (with velcro closure) around his torso to hold the tube in place. He made the decision to keep the PEG tube until his second checkup, so 5 months or so.

Hope this helps you make a decision,

Deb