CancerCompass message board discussion started by SatniteSpecl on 8/6/2008 http://www.cancercompass.com/message-board/message/all,26866,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Darn I had typed up a neat intro history and swoosh its gone.So anywho I have my final diagnosis this week  T1-N1-stage 3 scca of one tonsil as I work thru the steps of what's next I was told by the ENT that I need to have ALL my teeth pulled (why was that more shocking than "you have cancer"?). I went down to oral surgery and spoke with them and while they tend to agree full removal is the best option I could get by with maybe only losing 6.I would like to discuss the cons of keeping my teeth, I'm 50 and while they're healthy let's face it they're not going to be around forever.I understand about the weaken immune system which makes problems difficult.The possibility of necrosis although I couldn't really be told how often that really occurs.I also read about what's involved in having a tooth removed later if it is an issue (2 weeks of hyperbaric chamber sessions, wonder what dental plan would cover thet extraction) just trying to make a somewhat educated decision before next Thur when I've scheduled time to deal with this issue.Thanks so much for your time, remember what Red Green says "Hang in there we're all in this together" SatniteSpecl Wed, 06 Aug 2008 00:00:00 GMT  On 8/6/2008 SatniteSpecl wrote:Darn I had typed up a neat intro history and swoosh its gone.So anywho I have my final diagnosis this week  T1-N1-stage 3 scca of one tonsil as I work thru the steps of what's next I was told by the ENT that I need to have ALL my teeth pulled (why was that more shocking than "you have cancer"?). I went down to oral surgery and spoke with them and while they tend to agree full removal is the best option I could get by with maybe only losing 6.I would like to discuss the cons of keeping my teeth, I'm 50 and while they're healthy let's face it they're not going to be around forever.I understand about the weaken immune system which makes problems difficult.The possibility of necrosis although I couldn't really be told how often that really occurs.I also read about what's involved in having a tooth removed later if it is an issue (2 weeks of hyperbaric chamber sessions, wonder what dental plan would cover thet extraction) just trying to make a somewhat educated decision before next Thur when I've scheduled time to deal with this issue.Thanks so much for your time, remember what Red Green says "Hang in there we're all in this together"Hi I know what you mean about the double whammy - who would think that after being diagnosed w/ cancer we would get upset over something like having teeth removed.  I had cancer of the left tonsil and I only had 6 teeth removed.  I had to have a root canal and a couple of cavities filled along with the extractions.  No one (I went to two dentists, as well as an oral surgeon and the specialist for the root canal) suggested I have all of my teeth removed.  I had someone else mention it so maybe it is an older treatment approach - personally I don't see why we would have to have ALL of the teeth removed.  I know what they said about the problems later on IF we have to have a tooth extracted but what about dealing w/ dentures after undergoing radiation and chemo.  I am so thankful to have the teeth I have remaining even though it initially upset me to have the 6 extracted.  I had treatment July 07 through Oct 07 and just had my second clean scan since completing treatment - I am now cancer free. Good luck with everything - I agree that we are all in this together.  We've been there and done it and are now behind you all the way.Diana  Dlynn1210 Wed, 06 Aug 2008 00:00:00 GMT  On 8/6/2008 Dlynn1210 wrote: On 8/6/2008 SatniteSpecl wrote:Darn I had typed up a neat intro history and swoosh its gone.So anywho I have my final diagnosis this week  T1-N1-stage 3 scca of one tonsil as I work thru the steps of what's next I was told by the ENT that I need to have ALL my teeth pulled (why was that more shocking than "you have cancer"?). I went down to oral surgery and spoke with them and while they tend to agree full removal is the best option I could get by with maybe only losing 6.I would like to discuss the cons of keeping my teeth, I'm 50 and while they're healthy let's face it they're not going to be around forever.I understand about the weaken immune system which makes problems difficult.The possibility of necrosis although I couldn't really be told how often that really occurs.I also read about what's involved in having a tooth removed later if it is an issue (2 weeks of hyperbaric chamber sessions, wonder what dental plan would cover thet extraction) just trying to make a somewhat educated decision before next Thur when I've scheduled time to deal with this issue.Thanks so much for your time, remember what Red Green says "Hang in there we're all in this together"Hi I know what you mean about the double whammy - who would think that after being diagnosed w/ cancer we would get upset over something like having teeth removed.  I had cancer of the left tonsil and I only had 6 teeth removed.  I had to have a root canal and a couple of cavities filled along with the extractions.  No one (I went to two dentists, as well as an oral surgeon and the specialist for the root canal) suggested I have all of my teeth removed.  I had someone else mention it so maybe it is an older treatment approach - personally I don't see why we would have to have ALL of the teeth removed.  I know what they said about the problems later on IF we have to have a tooth extracted but what about dealing w/ dentures after undergoing radiation and chemo.  I am so thankful to have the teeth I have remaining even though it initially upset me to have the 6 extracted.  I had treatment July 07 through Oct 07 and just had my second clean scan since completing treatment - I am now cancer free. Good luck with everything - I agree that we are all in this together.  We've been there and done it and are now behind you all the way.Diana  Wonderfull news Diana - Best of luck to you in continuing to be cancer free.!!!  I know how you feel. I just had my second cancer freee scan in June of this year.  And, Satnite Specl (Great Tag!)  I hope you don't have to have all your teeth removed.  What a bummer.  Keep up the good fight and beat this monster!! Arnold Wed, 06 Aug 2008 00:00:00 GMT This is an area where there are different opinions.I was evaluated by a dentist who works with a lot of oncology patients.  He did a full mouth xray and an examination and determined I did not need to get any teeth pulled (my wisdom teeth were already pulled).So, I feel ok having all my teeth.  I am quite fastidious with my tooth care, since as you mention there are risks with removal in the future (I am told it's 30 days of hyerbaric oxygen).By the way, I was just 52 when diagnosed with cancer in my left tonsil with 2 lymph nodes.  I had a modified radical neck disection, and 6-1/2 weeks of IMRT with concurrent cisplatin and erbitux.  I am 2 years post diagnosis.Best wishes,Chris Chrismd Wed, 06 Aug 2008 00:00:00 GMT I was stage 4 scc of the left tonsil. I was told I had to lose any teeth that MIGHT have to come out in the next 5 years, as well as have any invasive dental work done that MIGHT have to be done (root canals, gum surgery, things like that). I lost a couple of molars and a couple of wisdom teeth, and had some fluoride trays made. Radiation and chemo leave you wide open for any kind of infection, including tooth decay, and the drymouth that follows also weakens your defenses against decay. I use the Biotene toothpaste and mouthwash at least twice a day, and use the fluoride trays as often as possible. I also see my dentist 3 times a year to catch any problems before they get out of hand. I'd ask for a second opinion before I consented to loosing all my teeth. There should be a good reason for you to have to undergo such a loss.Best wishes, Mike micromisterphone Wed, 06 Aug 2008 00:00:00 GMT While you are at the oral surgeon's, if you decide to keep your teeth, you might want to check on dental trays.  I was treated at the Cancer Treatment Center of America and they instructed me to get dental trays to help protect my teeth during radiation.  Diana  Dlynn1210 Wed, 06 Aug 2008 00:00:00 GMT i got all my top teeth taken out  i was a ice hockey player so i had lots of caps and bridges    they took out 4 bottom teeth that something could maybe go wrong with  I told them the same thing take them all out i dont want any problems i got cancer dont worry about my teeth.But you really want to keep your bottoms if you can top dentures aint that bad  after you heal you can get tops that you wont even know you got.But bottoms ive been told are difficult  victor53 Wed, 06 Aug 2008 00:00:00 GMT The reason is strictly preventitive measures I'm told. They're opinion is I will lose my salivary glands which are important to dental health and any tooth decay reaching the bone would set off the bone necrosis which in our instance would result in loss of the jawbone. Mon the oral surgeons are going to get another opinion whether I could just get by with having the 6 removed or in their opinion have them all taken, I'll being waying my options till Thurs next week.2 teeth are wisdom which never came all the way out, 2 are teeth with crowns on them (on the same side as the cyst oddly enough) and 2 are just questionable. SatniteSpecl Wed, 06 Aug 2008 00:00:00 GMT I had tonsil cancer Rt side 40 IMRT radiation and cisplatainI keep my teeth I had had all my wisdom teeth out but I di have two crowns and a gold inlay in a back moler, all on the Left side of my mouthMy dentist sad that my teeth where fine and at 47 I would rather keep them as long as I can She said that with the proper care between her and I we should be able to keep them a long timeI never got a second opinion  and I will admit that the teeth thing has made me nervous.but what is done is done I will take good care of them  no sugar, no sweets, no crap, brush 3-4 x / day, use Vince rince, trays , and Rx floride tooth paste.all I can doso far so good but I am only 3 months outjohn  mtkjohn1 Thu, 07 Aug 2008 00:00:00 GMT  On 8/6/2008 Dlynn1210 wrote:While you are at the oral surgeon's, if you decide to keep your teeth, you might want to check on dental trays.  I was treated at the Cancer Treatment Center of America and they instructed me to get dental trays to help protect my teeth during radiation.  Diana  My husband is 8 weeks post treatment and doing great!  He had to have all of his upper teeth pulled before starting treatment.  I asked the dentist about the dental trays because I had heard the radiation can cause burns from fillings.  She said they were going to replace my husband's metal fillings with ceramic, and that we would not need him to wear a tray.  He didn't have any burns from the fillings - just FYI... Babzilla Thu, 07 Aug 2008 00:00:00 GMT  On 8/7/2008 Babzilla wrote: On 8/6/2008 Dlynn1210 wrote:While you are at the oral surgeon's, if you decide to keep your teeth, you might want to check on dental trays.  I was treated at the Cancer Treatment Center of America and they instructed me to get dental trays to help protect my teeth during radiation.  Diana  My husband is 8 weeks post treatment and doing great!  He had to have all of his upper teeth pulled before starting treatment.  I asked the dentist about the dental trays because I had heard the radiation can cause burns from fillings.  She said they were going to replace my husband's metal fillings with ceramic, and that we would not need him to wear a tray.  He didn't have any burns from the fillings - just FYI...I am 9 months post treatment and they also replaced my metal fillings with ceramic beforehand but my oncologist still wanted the dental trays (he didn't even know I had metal fillings).  They pulled 6 teeth - back all 4 sides - anything that was already compromised had to be remedied.  Sure glad I have all the others left.  The trays help to protect the roots and nerve endings from radiation.  I still use them now for flouride treatments because as we all know - it is minor before radiation to have a cavity filled or a tooth pulled but becomes a major production after radiation.  I hope everything goes as well for your hubby - I just got my second clean scan since completing treatment last Thur.Diana Dlynn1210 Thu, 07 Aug 2008 00:00:00 GMT I'm two years post and still have all my teeth, including my wisdom teeth.  I'd think long and hard before I'd let them pull all my teeth.  It seems to be pretty common practice in Europe, but hit or miss in the US. ThreePutt Thu, 07 Aug 2008 00:00:00 GMT SatniteSpl,                 Allot of good advice has been posted. The main thing to remember, it is your decision that is the final say here. The Doctors are trying to give you good advice, and you may get several views. Weigh your options and look at the big picture.                With that said, I was sent to the Dentist at the Hospital that I was going to have the Surgery. The Dentist told me that my gums were on the border off him suggesting pulling all of my teeth out and getting Dentures. I asked him if Dentures could also cause a problem down the road. He said yes, poor fitting Dentures rubbing on the gums, etc.               He told me that I would have to maintenance my teeth everyday and do Flouride Trays daily for the rest of my life. I told him that I wanted to keep my teeth. He said that he was hoping that I would say that. I was 57 at the time. I am now 61 and have had no problems with my teeth.                Like it was mentioned by others prior to this post, no sugar and strict maintenance, you should do well keeping your teeth. The trays during Radiation are helpful I think. Saliva returns for some, not for all. I do get saliva when I chew gum and only then. I rely on the Flouride trays to protect my teeth and staying away from sugar. On occassions, I do eat cake and ice cream at birthdays, but brush as soon as I'm done eating.                My Best to Everyone here and good luck in your decision what ever it might be. Pop-Pop Thu, 07 Aug 2008 00:00:00 GMT While I'll admit, I'm not a dentist and I don't know your dental history, I find it a bit odd that they'd recommend full removal unless your teeth are in really, really bad shape.In my case, I was stage 4 primary base of the tongue cancer with both tonsil and lymph node involvement and while I went into my dental eval assuming I'd have to have most if not all of my teeth removed, it turned out that I only had to have one tooth removed, one old filling replaced and a few smaller cavities filled. So, from my own experience, it's not a foregone conclusion that you'd have to lose all your teeth. I should also point-out that I've had no major dental issues since finishing treatment either (knock wood). Again, I don't know your history or anything about how they will target your cancer with the radiation (although I doubt it will be that much different than my treatment), but from the sound of it, I'd get a second opinion because  they don't pull otherwise healthy teeth usually -- only the ones that are bad enough to put you at risk for necrosis.The only future risk to otherwise healthy teeth is the damage to the salivary glands.  Saliva aids your dental health -- protects your teeth to some degree from acidic foods and such. When you can't produce saliva, you are more likely to develop cavities -- which puts you at greater risk for necrosis.  Now, don't quote me on this, because it's been a while since I read these studies and I may be misremembering them  but as far as I can recall, and while the numbers vary by study, the occurences of radionecrosis are fairly low. Getting dental work done before treatment  contributes to this low number, but so do new treatments to protect the salivary glands and proper dental care during treatments.  I would consider all of my options and get more information before making a final decision, like talking to another oral surgeon.  Ultimately, though, you have to do what's best for you and what maximizes your overall chances for survival and if that includes having your teeth pulled . . . that's not necessarily an entirely unreasonable sacrifice to make.   On 8/6/2008 SatniteSpecl wrote:Darn I had typed up a neat intro history and swoosh its gone.So anywho I have my final diagnosis this week  T1-N1-stage 3 scca of one tonsil as I work thru the steps of what's next I was told by the ENT that I need to have ALL my teeth pulled (why was that more shocking than "you have cancer"?). I went down to oral surgery and spoke with them and while they tend to agree full removal is the best option I could get by with maybe only losing 6.I would like to discuss the cons of keeping my teeth, I'm 50 and while they're healthy let's face it they're not going to be around forever.I understand about the weaken immune system which makes problems difficult.The possibility of necrosis although I couldn't really be told how often that really occurs.I also read about what's involved in having a tooth removed later if it is an issue (2 weeks of hyperbaric chamber sessions, wonder what dental plan would cover thet extraction) just trying to make a somewhat educated decision before next Thur when I've scheduled time to deal with this issue.Thanks so much for your time, remember what Red Green says "Hang in there we're all in this together"  cautusasterius Fri, 08 Aug 2008 00:00:00 GMT Of course, everyone's story is different-but here's mine. Stg 4, unknown primary. Cisplatin, IMRT-X-35, dissection. Went into it with good teeth-had had plenty of cavities, 4 root canals & numerous crowns. Still have 3 wisdom teeth. Never was advised to pull any. Had flouride trays. Afterwards, had check-ups every 4 mos & teeth perfect! Even had 1 more crown, at 1 yr post TX's. Now back to reg. 6 mos check-ups & so far, so good. No saliva-but mouth not as parched as in the beginning-per dentist, there are more than one kind of gland. always meant to research that! Anyway-I would not have had teeth yanked unless I got alot of opinions that it was my only option! Gayle  gayleann Fri, 08 Aug 2008 00:00:00 GMT Thanks so much for the input its been helpful.Its possible this lets yank 'em all is a european attitude towards radiation  and possibly this is the attitude at the hospital, mind you they backed down abit so I havent made my mind up yet. Besides Kaiser poo-pooed their responsiblity for their part in it so I have a battle coming up over it anyways.I have an appt with my dentist Wed so we'll get some more info there. Looks like instead of getting my teeth pulled I'll be meeting my radiation therapist or whatever they are called Thurs - I believe I'm going for 7 weeks once a day for treatments. I will say that ending up with dentures and the assurance that there will be very little chance of complications later in life really is'nt such a bad thing in my opinion. No sugar in my coffee huh? Eww that will be tough. SatniteSpecl Fri, 08 Aug 2008 00:00:00 GMT you may not be having coffee at least caffeine coffee??Caffeine is a real problem for dry mouth so the no sugar may be easier than you think.I kept all my teeth and try to really clean them as soon as I canproblems do happen faster to us than other people but it does not happen the second we put something in our mouths and as long as we are diligent then we can keep our teeth.I guess that I am willing to take care of problems as they happen rather than have no teeth at 47!!!!!!!!!!johnso no sugarno caffeine do not eat or drink any crap  mtkjohn1 Fri, 08 Aug 2008 00:00:00 GMT This topic could have not come at a better time ! I am 2 years post treatment stage 4AN2 Tonsil cancer, 37 rounds of rads, 12 rounds of chemo , when I was diagnosed my teeth were in unstable shape some of the top teeth the enamel was starting to erode (I was told from cancer) These teeth were pulled before treatment. Now 2 years later I am faced with the bottom teeth also loosing the enamel and I am faced with extracting the remaining teeth (9) I am scared to death of possible complications and loss of my jaw bone and possible resection if narcrosis occures. I have a meeting with my dentist in 2 weeks and a letter from my radiation onocoligist stating this was caused from after effects of radiation and dry mouth due to loss of saliva , this should now be looked at as a medical treatment prompted loss of teeth , hence a medical/dental procedure in the eyes of insurance. I will have to go in hyperberic OX for 1 week prior to work and 2 weeks after for 3 hrs a day to help with healing and to ward off possible complications. The moral of this post ,, If I had to do it over again I indeed would have had them ALL removed from the get go ! Good luck to you..glowworm glowworm Sat, 09 Aug 2008 00:00:00 GMT I'm sorry if this sounds stupid, but what is the problem with getting a tooth pulled after radiation? I've never heard of this before. I guess generally if you have cancer it would probably be the least of your worries, so maybe that is why I've never heard about it. My teeth are getting bad anyway, I've been thinking about getting dentures so it wouldn't be a big deal, but I would really feel bad for younger people with generally good teeth, double whammy indeed. That would really suck!! pam123 Sat, 09 Aug 2008 00:00:00 GMT I have a problem with the recommended oxygen treatment several of you have mentioned.I had that a couple of years ago after breast cancer treatment and radiation damage and it caused hearing loss for several months, dental work on an unknown cavity near old filling, several sore teeth that were okay before, and no improvement in radiation damage, the very thing I was taking the treatments for! So, examine your options and read the fine print about side-effects. I did, but was assured the possibilities were slim and nil, and it was not true.  BarbInTexas Sat, 09 Aug 2008 00:00:00 GMT Pam,The problem with getting teeth pulled after radiation (of the head and/or neck) is osteoradionecrosis which is death of bone caused by radiation treatment. It can happen at any time on its own but it is more likely to happen if you have any teeth pulled. It is extremely painful and can lead to removal of the mandible (lower jaw). The patient must spend time, usually weeks, in a hyperbaric chamber before and after extraction to try to ward off the necrosis but if it reaches stage 3 or 4 the jaw must be removed. That's why the removal ofany potentially problem teeth is recommended before radiation treatment of the head and neck. Small price to pay.Good Luck!Joe Defjoeb Mon, 11 Aug 2008 00:00:00 GMT  On 8/6/2008 SatniteSpecl wrote:Darn I had typed up a neat intro history and swoosh its gone.So anywho I have my final diagnosis this week  T1-N1-stage 3 scca of one tonsil as I work thru the steps of what's next I was told by the ENT that I need to have ALL my teeth pulled (why was that more shocking than "you have cancer"?). I went down to oral surgery and spoke with them and while they tend to agree full removal is the best option I could get by with maybe only losing 6.I would like to discuss the cons of keeping my teeth, I'm 50 and while they're healthy let's face it they're not going to be around forever.I understand about the weaken immune system which makes problems difficult.The possibility of necrosis although I couldn't really be told how often that really occurs.I also read about what's involved in having a tooth removed later if it is an issue (2 weeks of hyperbaric chamber sessions, wonder what dental plan would cover thet extraction) just trying to make a somewhat educated decision before next Thur when I've scheduled time to deal with this issue.Thanks so much for your time, remember what Red Green says "Hang in there we're all in this together"It is really good to hear from someone who shares my same sentiments...I cried uncontrollably when they told me I had to have all my teeth removed.....but not when I was told I had cancer...that is weird...I have never discussed this with anyone..either....but here goes...Diagnosed 10-11-2007....4th child was 11 months old and I was still breastfeeding...I was 39 yrs old.   I had to face weaning my baby, pulling all my teeth out, {looking old} chemo, radiation, recovery, keeping my family together, keeping myself together and knowing which decision to make.   In the end, my dentist fought for me saving teeth, but we talked about it and my teeth weren't in the greatest shape,,,,,,,,but ultimately I could not see myself going through that hyperbaric oxygen chamber...I am highly claustrophobic which scared me instantly...then when I did go throug Radiation...where I had to wear a mask bolted down to a table, I had to take medicine...cuz I couldnt do it....the first day the fit me for the mask I cried and told my doctors I could not do that...so erego medication....Sorry...I got carried away...had all my teeth pulled...fitted for dentures..and started treatment....I did ok for awhile, but once I was heavy into the chemo and radiation...did not care one bit about teeth or dentures...lost all the weight...made it through treatment..finished Jan 14,2008...no cancer thus far....slowly gaining weight back....but havent been able to wear dentures...dont fit...too thin....but I am sure I w;ill have some problems with them as do others...but I have done pretty well with no teeth and gaining weight....it is a constant struggle...but gotta do it...I don't know if I would have changed anything....what is hard is people think I am my son's grandmother cuz of how my mouth looks...old...but the rest of me looks great...so....who cares what others think....I know what I have been through...what I fought and came out shining...so good luck and best wishes....guess it is all just a guessing game and what you think you can handle....God Bless..Cheryll  Cheryll Mon, 18 Aug 2008 00:00:00 GMT