Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, Well that is good news/bad news, I guess. It is good that it does not show in the bone. How much radiation is he recommending? This is like doing chemotherapy when you have breast cancer but it is not in the lymph nodes. Or radiation. Often recommended as all cancer cells can never be accounted for. Let us know how your research goes. We will be praying for the best decision. Lynda At 05:43 PM 3/20/2008, you wrote: >The surgeon removed the staples today - is leaving the stitches for >the next appointment in two weeks. > >The pathology report says ALL margins were clear. The doc said that >surprised him in one area.. . He was sure the cancer had invaded the >bone. The tumor is classified as a T1 (scale = T1- T4) . . . as good >as this cancer gets. > >However, he's recommending radiation as a precaution. He said that, >should the cancer reoccur, it could be devastating. But, if I have >radiation, it will destroy the salivary glands on both sides. I'll >have a dry mouth 24/7 forever! . . There are other side effects I >could live with . . but I'm not sure about the dry mouth! > >The good news is that I have time to check all this out . . . He >suggested that I talk to another of his patients who did radiation >and is doing well now. > >Hugs, > >Rogene > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene- All of our prayers have been working!! Yeahoo!!! Do the radiation too because you don't want that nasty cancer to come back and be worse!! You can live with dry mouth...just chew lots of gum...lol!!! ~Krista > > The surgeon removed the staples today - is leaving the stitches for the next appointment in two weeks. > > The pathology report says ALL margins were clear. The doc said that surprised him in one area.. . He was sure the cancer had invaded the bone. The tumor is classified as a T1 (scale = T1- T4) . . . as good as this cancer gets. > > However, he's recommending radiation as a precaution. He said that, should the cancer reoccur, it could be devastating. But, if I have radiation, it will destroy the salivary glands on both sides. I'll have a dry mouth 24/7 forever! . . There are other side effects I could live with . . but I'm not sure about the dry mouth! > > The good news is that I have time to check all this out . . . He suggested that I talk to another of his patients who did radiation and is doing well now. > > Hugs, > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Lynda,It would involve radiation five days a week for six weeks. . . That much I had already decided I could do . . . It's having a permanent dry mouth that is a major concern. . One needs saliva to digest food, to talk, to eat, to keep the mouth healthy. . . I've already got a permanent metallic taste from cutting the taste nerve to one side of my tongue. Tastes have changed. . . Anything with vinegar tastes bad. I'm not very concerned about dying . . . But I want to be able to enjoy whatever time I have.Thanks for all your prayers,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 I hate gum! . . . LOL!But it takes saliva to chew gum anyway!Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 I hate gum! . . . LOL!But it takes saliva to chew gum anyway!Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Oh crap Rogene! Well...what are their recommendations for what you can do in lieu of having natural saliva? Seems like there HAS to be something that could help! > > I hate gum! . . . LOL! > > But it takes saliva to chew gum anyway! > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Oh crap Rogene! Well...what are their recommendations for what you can do in lieu of having natural saliva? Seems like there HAS to be something that could help! > > I hate gum! . . . LOL! > > But it takes saliva to chew gum anyway! > > Rogene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hi Rogene,Glad the path results turned out great! That's wonderful news. As far the dry mouth, I came across this...sounds interesting, yet I didn't see what the actual ingredients are so who knows. It says it does contain active enzymes though. Love, PHhttp://www.quantumhealth.com/productgroups/dry_mouth_xerostomia_treatment.html > >> > I hate gum! . . . LOL!> > > > But it takes saliva to chew gum anyway!> > > > Rogene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hi Rogene,Glad the path results turned out great! That's wonderful news. As far the dry mouth, I came across this...sounds interesting, yet I didn't see what the actual ingredients are so who knows. It says it does contain active enzymes though. Love, PHhttp://www.quantumhealth.com/productgroups/dry_mouth_xerostomia_treatment.html > >> > I hate gum! . . . LOL!> > > > But it takes saliva to chew gum anyway!> > > > Rogene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, That's GREAT that it did not spread to the bone!! I can understand you not wanting to deal with a dry mouth. What kinds of things can you do to help it? I would think talking to others that did the radiation and are now living with a dry mouth would be very helpful for you to talk with. Maybe it won't be as difficult as it sounds! Take Care, Jill Re: Update on my ear Lynda,It would involve radiation five days a week for six weeks. . . That much I had already decided I could do . . . It's having a permanent dry mouth that is a major concern. . One needs saliva to digest food, to talk, to eat, to keep the mouth healthy. . . I've already got a permanent metallic taste from cutting the taste nerve to one side of my tongue. Tastes have changed. . . Anything with vinegar tastes bad. I'm not very concerned about dying . . . But I want to be able to enjoy whatever time I have.Thanks for all your prayers,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, That's GREAT that it did not spread to the bone!! I can understand you not wanting to deal with a dry mouth. What kinds of things can you do to help it? I would think talking to others that did the radiation and are now living with a dry mouth would be very helpful for you to talk with. Maybe it won't be as difficult as it sounds! Take Care, Jill Re: Update on my ear Lynda,It would involve radiation five days a week for six weeks. . . That much I had already decided I could do . . . It's having a permanent dry mouth that is a major concern. . One needs saliva to digest food, to talk, to eat, to keep the mouth healthy. . . I've already got a permanent metallic taste from cutting the taste nerve to one side of my tongue. Tastes have changed. . . Anything with vinegar tastes bad. I'm not very concerned about dying . . . But I want to be able to enjoy whatever time I have.Thanks for all your prayers,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, All in all, it sounds like a good outcome for what you went through. I will continue to keep you in my prayers...... I know you will do what is needed to feel comfortable about the future outcome.... Love, Beth Update on my ear The surgeon removed the staples today - is leaving the stitches for the next appointment in two weeks.The pathology report says ALL margins were clear. The doc said that surprised him in one area.. . He was sure the cancer had invaded the bone. The tumor is classified as a T1 (scale = T1- T4) . . . as good as this cancer gets. However, he's recommending radiation as a precaution. He said that, should the cancer reoccur, it could be devastating. But, if I have radiation, it will destroy the salivary glands on both sides. I'll have a dry mouth 24/7 forever! . . There are other side effects I could live with . . but I'm not sure about the dry mouth! The good news is that I have time to check all this out . . . He suggested that I talk to another of his patients who did radiation and is doing well now.Hugs,Rogene Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, All in all, it sounds like a good outcome for what you went through. I will continue to keep you in my prayers...... I know you will do what is needed to feel comfortable about the future outcome.... Love, Beth Update on my ear The surgeon removed the staples today - is leaving the stitches for the next appointment in two weeks.The pathology report says ALL margins were clear. The doc said that surprised him in one area.. . He was sure the cancer had invaded the bone. The tumor is classified as a T1 (scale = T1- T4) . . . as good as this cancer gets. However, he's recommending radiation as a precaution. He said that, should the cancer reoccur, it could be devastating. But, if I have radiation, it will destroy the salivary glands on both sides. I'll have a dry mouth 24/7 forever! . . There are other side effects I could live with . . but I'm not sure about the dry mouth! The good news is that I have time to check all this out . . . He suggested that I talk to another of his patients who did radiation and is doing well now.Hugs,Rogene Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, So many facilities have targeted radiation, just to a single area. There must be a way to target the area and skip the other areas. Have you checked with large facilities like MD Houston? Many things are possible. I don't think large areas have to be irradiated to accomplish something like assuring that no cancer lurks nearby. Lynda At 06:45 PM 3/20/2008, you wrote: >Lynda, > >It would involve radiation five days a week for six weeks. . . > >That much I had already decided I could do . . . > >It's having a permanent dry mouth that is a major concern. . One >needs saliva to digest food, to talk, to eat, to keep the mouth healthy. . . > >I've already got a permanent metallic taste from cutting the taste >nerve to one side of my tongue. Tastes have changed. . . Anything >with vinegar tastes bad. > >I'm not very concerned about dying . . . But I want to be able to >enjoy whatever time I have. > >Thanks for all your prayers, > >Rogene > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, So many facilities have targeted radiation, just to a single area. There must be a way to target the area and skip the other areas. Have you checked with large facilities like MD Houston? Many things are possible. I don't think large areas have to be irradiated to accomplish something like assuring that no cancer lurks nearby. Lynda At 06:45 PM 3/20/2008, you wrote: >Lynda, > >It would involve radiation five days a week for six weeks. . . > >That much I had already decided I could do . . . > >It's having a permanent dry mouth that is a major concern. . One >needs saliva to digest food, to talk, to eat, to keep the mouth healthy. . . > >I've already got a permanent metallic taste from cutting the taste >nerve to one side of my tongue. Tastes have changed. . . Anything >with vinegar tastes bad. > >I'm not very concerned about dying . . . But I want to be able to >enjoy whatever time I have. > >Thanks for all your prayers, > >Rogene > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Thanks PH . . . Reading further into the website doesn't make dry mouth sound good at all!I've got a lot of thinking to do before I'll agree to radiation!Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Thanks PH . . . Reading further into the website doesn't make dry mouth sound good at all!I've got a lot of thinking to do before I'll agree to radiation!Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Krista,A relative has to take meds that dry her mouth out . . .She says it's miserable. Hard to eat, hard to talk . . . the list goes on. No one in the family is encouraging me to do radiation. A silent sister sent me info on a high tech radiation treatment . . . I'm going to check into that tomorrow. Hopefully it wouldn't damage adjacent tissues.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Krista,A relative has to take meds that dry her mouth out . . .She says it's miserable. Hard to eat, hard to talk . . . the list goes on. No one in the family is encouraging me to do radiation. A silent sister sent me info on a high tech radiation treatment . . . I'm going to check into that tomorrow. Hopefully it wouldn't damage adjacent tissues.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Lynda,M.D. is where I'm checking tomorrow. I'm calling their Proton Beam Radiation Therapy Center. The machine is the most expensive medical equipment in existence. There are about 6 in the states, with another 6 in the planning or construction stage. It's used for situations where the beam must be precise and not damage adjacent tissues - like the brain.The problem is that the area that needs to be treated isn't a tiny target! If you can imagine the surface area of a small egg, smashed down and twisted about, with ragged edges.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Lynda,M.D. is where I'm checking tomorrow. I'm calling their Proton Beam Radiation Therapy Center. The machine is the most expensive medical equipment in existence. There are about 6 in the states, with another 6 in the planning or construction stage. It's used for situations where the beam must be precise and not damage adjacent tissues - like the brain.The problem is that the area that needs to be treated isn't a tiny target! If you can imagine the surface area of a small egg, smashed down and twisted about, with ragged edges.Hugs,Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, I think the Proton Beam Radiation can handle that area and target it so that the radiation stays in as small an area as possible. I would certainly really try to get an answer from them using your records and scans and surgical results. They have different shaped beams and they go as small as possible to get the exact area. Hope this is another option for you. Lynda At 10:20 PM 3/20/2008, you wrote: >Lynda, > >M.D. is where I'm checking tomorrow. I'm calling their >Proton Beam Radiation Therapy Center. The machine is the most >expensive medical equipment in existence. There are about 6 in the >states, with another 6 in the planning or construction stage. It's >used for situations where the beam must be precise and not damage >adjacent tissues - like the brain. > >The problem is that the area that needs to be treated isn't a tiny >target! If you can imagine the surface area of a small egg, smashed >down and twisted about, with ragged edges. > >Hugs, > >Rogene > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Rogene, I think the Proton Beam Radiation can handle that area and target it so that the radiation stays in as small an area as possible. I would certainly really try to get an answer from them using your records and scans and surgical results. They have different shaped beams and they go as small as possible to get the exact area. Hope this is another option for you. Lynda At 10:20 PM 3/20/2008, you wrote: >Lynda, > >M.D. is where I'm checking tomorrow. I'm calling their >Proton Beam Radiation Therapy Center. The machine is the most >expensive medical equipment in existence. There are about 6 in the >states, with another 6 in the planning or construction stage. It's >used for situations where the beam must be precise and not damage >adjacent tissues - like the brain. > >The problem is that the area that needs to be treated isn't a tiny >target! If you can imagine the surface area of a small egg, smashed >down and twisted about, with ragged edges. > >Hugs, > >Rogene > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Thanks Lynda,I plan to contact MD, and if there's any possibility, put them in touch with my surgeon. He'll be happy to work with anyone. He's a really, really nice guy! . . . He feels really bad about having to do the damage necessary to remove the cancer. Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Thanks Lynda,I plan to contact MD, and if there's any possibility, put them in touch with my surgeon. He'll be happy to work with anyone. He's a really, really nice guy! . . . He feels really bad about having to do the damage necessary to remove the cancer. Rogene Quote Link to comment Share on other sites More sharing options...
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