Anyone have Throat dilitation advice?
My dad is 7 months since his last treatment rad and chemo for tonsil and lymph.
We are trying to get off the feeding tube and recently had a throat dilitation (may 9,)
the dr. Said it went well , he opened the stricture in his esophagus and to go at his own pace trying different foods.
that night he tried an omlette, ditalini and cofffee. It didn't go well. Is it too soon?
Is there a guideline to follow as to how to maybe gradually start re-eating or
Things to avoid? Tha hospital called tonight to see how he was doing and told us to
Avoid anything too hot ( that explains why the coffee didn't go down well!!!)
If anyone has any advice I would really appreciate it .
Thanks
Michelle
Comments
-
Swallowing
Hi Michelle, What happened when he tried to swallow? Did he start coughing? Did the food go down at all? Did the liquid come out of his nose? My stricture didn't start until I was about 3 years post radiation. What is ditalini? When I first started having dilations, it used to take about 4 days for the pain to go away.0 -
When he tried the ditiliniGeorge_Baltimore said:Swallowing
Hi Michelle, What happened when he tried to swallow? Did he start coughing? Did the food go down at all? Did the liquid come out of his nose? My stricture didn't start until I was about 3 years post radiation. What is ditalini? When I first started having dilations, it used to take about 4 days for the pain to go away.
When he tried the ditilini that is small macaroni he started coughing like it was getting stuck. The coffee burned really bad and the omlet same thing it felt like it was getting stuck, so he started coughing. Nothing came out his nose and the food did go down but he said it felt like it was getting stuck. He said his throat did still hurt but he was eager to try to eat something. He hasn't had any real food sine 9-18-11 when he got his peg .
Hope this info helps explain a little better. Sorry. Do you think we tried too much too fast?
Thanks for helping
Michelle0 -
Give it a little more timemichdjp said:When he tried the ditilini
When he tried the ditilini that is small macaroni he started coughing like it was getting stuck. The coffee burned really bad and the omlet same thing it felt like it was getting stuck, so he started coughing. Nothing came out his nose and the food did go down but he said it felt like it was getting stuck. He said his throat did still hurt but he was eager to try to eat something. He hasn't had any real food sine 9-18-11 when he got his peg .
Hope this info helps explain a little better. Sorry. Do you think we tried too much too fast?
Thanks for helping
Michelle
Hi Michelle, I would give it a couple more days for his throat to recuperate from the dilation. Since June of 2007, I've been dilated over 40 times. My problem recently was that I wasn't dilated for six months last year after surgery to replace half my jawbone. Now the stricture won't stay open. I have another gastroenterologist looking into the problem to see if anything else can be done. When I first started with dilations, as I said before, it took about 4 days to be able to swallow without pain. After each bite, I would take a swallow of milk which helped flush it down. What you don't want is food going down his airway. That's why I asked you whether he was coughing. That could be the body's natural response to keep that from happening. Hopefully things will get better by the end of the weekend. If they are, it's very possible that dad may have to have dilations every so often to keep the stricture open. I was having them done every 4 to 6 weeks. Let us know how he's doing Monday. George0 -
Hi Michelle
I'd bet on any advice George gives you in this, as I think he may be a world leading expert at dilations. Also, choose the easiest things to swallow first. Water goes down easier than maccaroni, and is less likely by far to cause aspiration pneumonitis.
Pat0 -
Hey Georga ...? for you ...longtermsurvivor said:Hi Michelle
I'd bet on any advice George gives you in this, as I think he may be a world leading expert at dilations. Also, choose the easiest things to swallow first. Water goes down easier than maccaroni, and is less likely by far to cause aspiration pneumonitis.
Pat
Michelle...hope your dad is doing better ....glad you posted bc I too seem to be having an issue...maybe...but if so it just started? Go figure.
George,
help me understand this procedure and why it is done.
I am 3.5 months since my last treatment and just this past 10 days it seems my throat is "closing up" and my voice has really started sounding like I have laryngitis?? When I breathe in ...it's as if my throat is constricted ...and I can kind of hear the air wheezing in.
I just had my 1st PET / CT scan May 7th and I got the all clear ...and on May 10th I saw the ENT and he scoped me, stuck his finger down my throat, blah blah blah ...you know the drill...and he said all looked good. My ENT also reviewed the scans and said all looked good to him and both the ENT and Onc gave me an all clear.
I did tell them about my voice (they could hear it as well in the office) and I told them my ear canal still hurt on the left side (my base of tongue tumor was on the left side of my tongue as was my left lymph node also had cancer in it NOTE: I was base of tongue primary, with one lympn node stage III HPV positive) and I told them my throat had a mild burning sensation in it ...the really did not say anything but "could be allergies, could be a cold and of course could be post treatment side affects). NOTE: I did not have surgery or chemo ...I only had radiation and Erbitux:
So today (as I started to say earlier in the post) it just seems like I'm really struggling to catch my breath if I do anything physical (I really don't like that) ...
I got a copy of the PET / CT scan written report and it did say / note things like the following::::::......
"Persistent but decreased soft tissue thickening of the left tongue base with new circumferential soft tissue thickening and mild FDG activity of the oropharynx and hypopharynx pharyngeal space, most compatible with post treatment change. Small focus of residual disease in this area could be obscured by the posttreatment changes."
Also this:::......
"there is slight asymmetry to the left side of the base of tongue with very subtle enhancement. This is less evident than on the previous examination. This may represent a residual amount of the disease or scar".
Also this:::.....
Slight increase in density within the fast of the false cords and true cords most likely related to treatment. No masses seen.
Also this::::......
Symmetric uptake is present in the glottis, primarily posteriorly, likely physiological".
LOL ...I just realized how much of the report I posted ...but I'm trying to figure out why I'm having such a time with my voice when all seemed so well 3 months after treatment ...and now the last 10 days my voice is like laryngitis and I feel like I have a blockage in my throat ....
So just asking your thoughts since you seem to be the expert on this procedure to have your throat "stretched" for a better word ??
Or anybody that wants to provide feedback ...love to hear if this is normal ...or even the new normal...
Thanks,
Tim0 -
Pat is the resident doctor on the boardTim6003 said:Hey Georga ...? for you ...
Michelle...hope your dad is doing better ....glad you posted bc I too seem to be having an issue...maybe...but if so it just started? Go figure.
George,
help me understand this procedure and why it is done.
I am 3.5 months since my last treatment and just this past 10 days it seems my throat is "closing up" and my voice has really started sounding like I have laryngitis?? When I breathe in ...it's as if my throat is constricted ...and I can kind of hear the air wheezing in.
I just had my 1st PET / CT scan May 7th and I got the all clear ...and on May 10th I saw the ENT and he scoped me, stuck his finger down my throat, blah blah blah ...you know the drill...and he said all looked good. My ENT also reviewed the scans and said all looked good to him and both the ENT and Onc gave me an all clear.
I did tell them about my voice (they could hear it as well in the office) and I told them my ear canal still hurt on the left side (my base of tongue tumor was on the left side of my tongue as was my left lymph node also had cancer in it NOTE: I was base of tongue primary, with one lympn node stage III HPV positive) and I told them my throat had a mild burning sensation in it ...the really did not say anything but "could be allergies, could be a cold and of course could be post treatment side affects). NOTE: I did not have surgery or chemo ...I only had radiation and Erbitux:
So today (as I started to say earlier in the post) it just seems like I'm really struggling to catch my breath if I do anything physical (I really don't like that) ...
I got a copy of the PET / CT scan written report and it did say / note things like the following::::::......
"Persistent but decreased soft tissue thickening of the left tongue base with new circumferential soft tissue thickening and mild FDG activity of the oropharynx and hypopharynx pharyngeal space, most compatible with post treatment change. Small focus of residual disease in this area could be obscured by the posttreatment changes."
Also this:::......
"there is slight asymmetry to the left side of the base of tongue with very subtle enhancement. This is less evident than on the previous examination. This may represent a residual amount of the disease or scar".
Also this:::.....
Slight increase in density within the fast of the false cords and true cords most likely related to treatment. No masses seen.
Also this::::......
Symmetric uptake is present in the glottis, primarily posteriorly, likely physiological".
LOL ...I just realized how much of the report I posted ...but I'm trying to figure out why I'm having such a time with my voice when all seemed so well 3 months after treatment ...and now the last 10 days my voice is like laryngitis and I feel like I have a blockage in my throat ....
So just asking your thoughts since you seem to be the expert on this procedure to have your throat "stretched" for a better word ??
Or anybody that wants to provide feedback ...love to hear if this is normal ...or even the new normal...
Thanks,
Tim
He could probably explain this better than I but I'll give it a shot. Visualize two tubes running down in your neck. One is the esophagus where your food travels and one is the trachea for your air. They both meet high up in your neck. The epiglottis is like a flap of skin that covers the opening of the airway when you swallow. An esophageal stricture (or narrowing) occurs a lot of times after radiation. That is when you start having to have dilations or stretching. Unfortunately, once you start having dilations, you will most likely have to have them on a fairly regular basis because the stricture naturally wants to keep closing. It's a simple procedure lasting maybe 15 to 20 minutes where the gastroenterologist keeps using instruments of increasing diameters to get the opening to the esophagus to open back up. It's an outpatient procedure that leaves your throat sore for anywhere from 1 to 4 days. It's done under a general anesthetic so you don't remember a thing. Propofal is most generally used to put you under. I always check with the anesthesiologist beforehand to make sure he/she is not planning on using ketamine. It's rarely used but I did have it once and it was not pleasant.
As far as your voice goes, I think Pat could answer that much better. I suppose the trachea (windpipe) could become contricted due to radiation. I have gone through the same problem and never really got into the mechanics of why it happened. About one and a half years after my last radiation treatment I was driving down the road talking to my sister. All of a sudden my voice cracked. I said to my sister that it sounded like I was going through puberty again. I didn't laugh too long shortly thereafter I couldn't talk above a whisper. This was back in 2006 so I'm not sure exactly how many months it took for me to get my voice back. Once I did though, it was very raspy and alot of people on the phone couldn't understand what I was saying.
As far as the technical jargon from the report, I wouldn't worry about it unless your oncologist says you have a problem. The assymetry is to be expected. I am not now nor was I ever a doctor (you can step in here Pat). Good luck, Tim!0 -
Thanks George - Pat did step in ...Lucky meGeorge_Baltimore said:Pat is the resident doctor on the board
He could probably explain this better than I but I'll give it a shot. Visualize two tubes running down in your neck. One is the esophagus where your food travels and one is the trachea for your air. They both meet high up in your neck. The epiglottis is like a flap of skin that covers the opening of the airway when you swallow. An esophageal stricture (or narrowing) occurs a lot of times after radiation. That is when you start having to have dilations or stretching. Unfortunately, once you start having dilations, you will most likely have to have them on a fairly regular basis because the stricture naturally wants to keep closing. It's a simple procedure lasting maybe 15 to 20 minutes where the gastroenterologist keeps using instruments of increasing diameters to get the opening to the esophagus to open back up. It's an outpatient procedure that leaves your throat sore for anywhere from 1 to 4 days. It's done under a general anesthetic so you don't remember a thing. Propofal is most generally used to put you under. I always check with the anesthesiologist beforehand to make sure he/she is not planning on using ketamine. It's rarely used but I did have it once and it was not pleasant.
As far as your voice goes, I think Pat could answer that much better. I suppose the trachea (windpipe) could become contricted due to radiation. I have gone through the same problem and never really got into the mechanics of why it happened. About one and a half years after my last radiation treatment I was driving down the road talking to my sister. All of a sudden my voice cracked. I said to my sister that it sounded like I was going through puberty again. I didn't laugh too long shortly thereafter I couldn't talk above a whisper. This was back in 2006 so I'm not sure exactly how many months it took for me to get my voice back. Once I did though, it was very raspy and alot of people on the phone couldn't understand what I was saying.
As far as the technical jargon from the report, I wouldn't worry about it unless your oncologist says you have a problem. The assymetry is to be expected. I am not now nor was I ever a doctor (you can step in here Pat). Good luck, Tim!
George..your comments were well understood ...and thank you for your time and energy on this thread and one other you responded to with regards to a SS question.
I wish I could give back what you and Pat have given me ...huge relief and a wealth of info to chew on ..
Truly thankful
Best,
Tim / Idaho
timcogdill@yahoo.com
208.630.4842 cell0 -
Hi TimTim6003 said:Thanks George - Pat did step in ...Lucky me
George..your comments were well understood ...and thank you for your time and energy on this thread and one other you responded to with regards to a SS question.
I wish I could give back what you and Pat have given me ...huge relief and a wealth of info to chew on ..
Truly thankful
Best,
Tim / Idaho
timcogdill@yahoo.com
208.630.4842 cell
No problem. Glad I could help. I wish I had discovered this board when I was initially going through this. I would have done some things a little differently. We're here to help each other with situations that are new and scary to us. God bless you and keep hanging in there.0 -
Thanks soo muchGeorge_Baltimore said:Hi Tim
No problem. Glad I could help. I wish I had discovered this board when I was initially going through this. I would have done some things a little differently. We're here to help each other with situations that are new and scary to us. God bless you and keep hanging in there.
Thanks George for your time and concern. Today for mothers day we are having a BBQ. I am going to try
Spegitti with shrimp and clams for dad. He only has the speg and juice and when he first ended treatment
this was one of the dishes that did seem to slip down. Last night he tried watermelon as suggested but
He said it felt stuck and did cough a lot. He had previously had a swallow study and esophagram which
Showed that he was not aspirating. It did show a very swollen epiglottis however and I do feel this adds to
His problem of swallowing as well as a fear of choking. This morning the coffee (which we put an ice-cube in)
Went down but just like before not any better. (very small sips) . Could it have closed back up so quickly?
I hope not and will keep praying that it will get better.
I will post later or Tom. To let you know how it goes. Thank you soo much.
To all the mothers out there a very happy and healthy day to you.
Michelle0 -
No changemichdjp said:Thanks soo much
Thanks George for your time and concern. Today for mothers day we are having a BBQ. I am going to try
Spegitti with shrimp and clams for dad. He only has the speg and juice and when he first ended treatment
this was one of the dishes that did seem to slip down. Last night he tried watermelon as suggested but
He said it felt stuck and did cough a lot. He had previously had a swallow study and esophagram which
Showed that he was not aspirating. It did show a very swollen epiglottis however and I do feel this adds to
His problem of swallowing as well as a fear of choking. This morning the coffee (which we put an ice-cube in)
Went down but just like before not any better. (very small sips) . Could it have closed back up so quickly?
I hope not and will keep praying that it will get better.
I will post later or Tom. To let you know how it goes. Thank you soo much.
To all the mothers out there a very happy and healthy day to you.
Michelle
So dads says there is no real change since his dilitation on the 9th. Spoke to the dr. And he said go for a swallow study in a few weeks. ( I guess give it some time) dr. Says he should be eating that he opened the stricture.
Could it be since he has a swollen epiglottis that it it weak and just not Able to push the food down? I asked him to start doing his exercises again we learned in speech therapy specially to strengthen that muscle.
I hope that works he is at wits end!!!!
Thanks
Michelle0 -
Dilitationmichdjp said:No change
So dads says there is no real change since his dilitation on the 9th. Spoke to the dr. And he said go for a swallow study in a few weeks. ( I guess give it some time) dr. Says he should be eating that he opened the stricture.
Could it be since he has a swollen epiglottis that it it weak and just not Able to push the food down? I asked him to start doing his exercises again we learned in speech therapy specially to strengthen that muscle.
I hope that works he is at wits end!!!!
Thanks
Michelle
I had two stretches but I also had therapy where I had electrodes put around my throat and then proceeded to eat and drink different things. I had a PEG Tube and wanted it out in the worse way. It all takes time, hard to be patient. My throat was very weak but after two months with a speech therapist I was able to start eating more the way I wanted. As my mom would say "Rome wasn't built in a day".
Good luck
Nancy0 -
Vital stim?nwasen said:Dilitation
I had two stretches but I also had therapy where I had electrodes put around my throat and then proceeded to eat and drink different things. I had a PEG Tube and wanted it out in the worse way. It all takes time, hard to be patient. My throat was very weak but after two months with a speech therapist I was able to start eating more the way I wanted. As my mom would say "Rome wasn't built in a day".
Good luck
Nancy
His nancy,
Thank you for your information and my dad wants his
PEg put soooo bad it's heartbreaking to not be able to fix this.
Was your electrode therapy the vital stim because I had heard about this.
My dad insurance does not cover it I think it was like $175 per visit and you needed
12 to 14 visits. Does this sound right?
If it helps I will certainly look into it for him.
Thanks for your time
Michelle0 -
I'm back, sorry for the delaymichdjp said:Vital stim?
His nancy,
Thank you for your information and my dad wants his
PEg put soooo bad it's heartbreaking to not be able to fix this.
Was your electrode therapy the vital stim because I had heard about this.
My dad insurance does not cover it I think it was like $175 per visit and you needed
12 to 14 visits. Does this sound right?
If it helps I will certainly look into it for him.
Thanks for your time
Michelle
Hi Michelle, I'm happy to hear that he is not aspirating, so that's one GOOD thing. With the epiglottis being swollen, it might not be making a good seal over the trachea when he swallows. My speech therapist explained how the electrodes worked but I don't remember enough to state for fact how it works. Somehow, I think it works to strengthen the muscle when you swallow. When i had it done, it was covered fully by Medicare and my medi-gap. Didn't cost me a cent. Is dad on Medicare? Was his speech therapy paid for by insurance? If so, the attachment of the electrodes certainly should be paid because it's done during the same session.
If he's not aspirating the food and it's not coming back out his mouth, it's got to be going down his esophagus even though it feels like it's getting stuck. Does he try to rinse each mouthful down with a swig of liquid? That's how I used to manage it. Good luck. I know how frustrating it's got to be for him!!! I torture myself by watching Food Network shows and thinking, "Oh, that looks good!" Knowing full well I may never be able to try the recipe again. Tell him to keep doing the swallow exercises. It will pay off one day.0 -
Vital StimGeorge_Baltimore said:I'm back, sorry for the delay
Hi Michelle, I'm happy to hear that he is not aspirating, so that's one GOOD thing. With the epiglottis being swollen, it might not be making a good seal over the trachea when he swallows. My speech therapist explained how the electrodes worked but I don't remember enough to state for fact how it works. Somehow, I think it works to strengthen the muscle when you swallow. When i had it done, it was covered fully by Medicare and my medi-gap. Didn't cost me a cent. Is dad on Medicare? Was his speech therapy paid for by insurance? If so, the attachment of the electrodes certainly should be paid because it's done during the same session.
If he's not aspirating the food and it's not coming back out his mouth, it's got to be going down his esophagus even though it feels like it's getting stuck. Does he try to rinse each mouthful down with a swig of liquid? That's how I used to manage it. Good luck. I know how frustrating it's got to be for him!!! I torture myself by watching Food Network shows and thinking, "Oh, that looks good!" Knowing full well I may never be able to try the recipe again. Tell him to keep doing the swallow exercises. It will pay off one day.
I am pretty sure that was what it was called. You got hooked up to a machine with electrodes on the part of your throat that showed during the swallow test where your issues were. I did one month and then had another swallow test and had another month's treatments. they kind of hurt when they would turn up the voltage but it sure made a world of difference. I look back on what I could eat when I started and where I am today. It is so hard to be patient when you want to eat "normal". There are some things I know I will never eat again or at least not on a regular basis. Chicken breasts became very hard objects in my throat. I fare better with chicken thighs...I do eat alot more seafood, especially scallops.
I found when I was first experimenting with trying to eat again that milk worked better to wash things down than water did. And I drank no pop until much later.
Just tell your dad to keep up the swallowing exercises, try small amounts of food he thinks might go down easier and not to get too upset. One day at a time.
Will be thinking of him and please keep us posted
Peace
Nancy aka toughcookie0 -
thanks for your time and concern.George_Baltimore said:I'm back, sorry for the delay
Hi Michelle, I'm happy to hear that he is not aspirating, so that's one GOOD thing. With the epiglottis being swollen, it might not be making a good seal over the trachea when he swallows. My speech therapist explained how the electrodes worked but I don't remember enough to state for fact how it works. Somehow, I think it works to strengthen the muscle when you swallow. When i had it done, it was covered fully by Medicare and my medi-gap. Didn't cost me a cent. Is dad on Medicare? Was his speech therapy paid for by insurance? If so, the attachment of the electrodes certainly should be paid because it's done during the same session.
If he's not aspirating the food and it's not coming back out his mouth, it's got to be going down his esophagus even though it feels like it's getting stuck. Does he try to rinse each mouthful down with a swig of liquid? That's how I used to manage it. Good luck. I know how frustrating it's got to be for him!!! I torture myself by watching Food Network shows and thinking, "Oh, that looks good!" Knowing full well I may never be able to try the recipe again. Tell him to keep doing the swallow exercises. It will pay off one day.
George,
First, thank you for your help dad is on medicare he was 69 when diagnosed
and has since turned 70 and a very healthy and active young at heart man.
And still is thank god it al helped get threw it. The dr. Is sending us for a
Modified barium swallow study on the 30 th of this month so I may hold off on
Anything else like the vital stim until after that. It is sooo frustrating waiting and
I wish we had started sooner trying to fix this but its never too late0 -
TimTim6003 said:Hey Georga ...? for you ...
Michelle...hope your dad is doing better ....glad you posted bc I too seem to be having an issue...maybe...but if so it just started? Go figure.
George,
help me understand this procedure and why it is done.
I am 3.5 months since my last treatment and just this past 10 days it seems my throat is "closing up" and my voice has really started sounding like I have laryngitis?? When I breathe in ...it's as if my throat is constricted ...and I can kind of hear the air wheezing in.
I just had my 1st PET / CT scan May 7th and I got the all clear ...and on May 10th I saw the ENT and he scoped me, stuck his finger down my throat, blah blah blah ...you know the drill...and he said all looked good. My ENT also reviewed the scans and said all looked good to him and both the ENT and Onc gave me an all clear.
I did tell them about my voice (they could hear it as well in the office) and I told them my ear canal still hurt on the left side (my base of tongue tumor was on the left side of my tongue as was my left lymph node also had cancer in it NOTE: I was base of tongue primary, with one lympn node stage III HPV positive) and I told them my throat had a mild burning sensation in it ...the really did not say anything but "could be allergies, could be a cold and of course could be post treatment side affects). NOTE: I did not have surgery or chemo ...I only had radiation and Erbitux:
So today (as I started to say earlier in the post) it just seems like I'm really struggling to catch my breath if I do anything physical (I really don't like that) ...
I got a copy of the PET / CT scan written report and it did say / note things like the following::::::......
"Persistent but decreased soft tissue thickening of the left tongue base with new circumferential soft tissue thickening and mild FDG activity of the oropharynx and hypopharynx pharyngeal space, most compatible with post treatment change. Small focus of residual disease in this area could be obscured by the posttreatment changes."
Also this:::......
"there is slight asymmetry to the left side of the base of tongue with very subtle enhancement. This is less evident than on the previous examination. This may represent a residual amount of the disease or scar".
Also this:::.....
Slight increase in density within the fast of the false cords and true cords most likely related to treatment. No masses seen.
Also this::::......
Symmetric uptake is present in the glottis, primarily posteriorly, likely physiological".
LOL ...I just realized how much of the report I posted ...but I'm trying to figure out why I'm having such a time with my voice when all seemed so well 3 months after treatment ...and now the last 10 days my voice is like laryngitis and I feel like I have a blockage in my throat ....
So just asking your thoughts since you seem to be the expert on this procedure to have your throat "stretched" for a better word ??
Or anybody that wants to provide feedback ...love to hear if this is normal ...or even the new normal...
Thanks,
Tim
Is your voice and throat better now? I had a sore throat for a couple of days a while back and happened to also have an ENT appointment and mention it to him after the exam. He said it was just a normal throat irritation but after we go through scchn we worry more than we used. His feeling is give it a few days because if it is nothing it will take care of itself like these things always have otherwise make an appointment.
I really don't know what all the PET comments mean. I assume the reference to residual disease is just due the recent rt and that is why they are not concerned and gave you the thumbs up. Are they going to stick with PET scans or alternate with CT?
John0 -
Hi jtl (John)jtl said:Tim
Is your voice and throat better now? I had a sore throat for a couple of days a while back and happened to also have an ENT appointment and mention it to him after the exam. He said it was just a normal throat irritation but after we go through scchn we worry more than we used. His feeling is give it a few days because if it is nothing it will take care of itself like these things always have otherwise make an appointment.
I really don't know what all the PET comments mean. I assume the reference to residual disease is just due the recent rt and that is why they are not concerned and gave you the thumbs up. Are they going to stick with PET scans or alternate with CT?
John
well.....yes and no.
Voice is still quite hoarse and is the same ..but my throat does not "burn or feel scratchy like it did ....but I sound really rough.
I sounded that way at my ENT and ONC visit May 7th and May 10th ...the scope or scans did not show anything (but if you notice in the written report verbiage above it seems as if they are saying that residual disease could still be hidden). .....
Based on everything I have read it seems like a hoarse voice or vocal cord trouble could be delayed affects from the radiation...??
Longtermsurvior (Pat) chimed in on one post and put me quite at ease so I have not been too worried about it (I hopte that is smart on my part) ...
I will get monthly scopes and finger exam by the ENT (I think he is very good) and you know, I don't know the answer going forward on how often or what type of scans I will get ...can somebody tell me what type of scanc I should be getting and how often? If so I would appreciate that.
...If up to me ..I want a PET/ CT scan at minimum every 3 months.
Thanks for asking John.
Tim
NOTE: my voice was not hoarse initially after treatments - it becamce this way just a week before my 3 month follow-up and has remained that way till now.0 -
TimTim6003 said:Hi jtl (John)
well.....yes and no.
Voice is still quite hoarse and is the same ..but my throat does not "burn or feel scratchy like it did ....but I sound really rough.
I sounded that way at my ENT and ONC visit May 7th and May 10th ...the scope or scans did not show anything (but if you notice in the written report verbiage above it seems as if they are saying that residual disease could still be hidden). .....
Based on everything I have read it seems like a hoarse voice or vocal cord trouble could be delayed affects from the radiation...??
Longtermsurvior (Pat) chimed in on one post and put me quite at ease so I have not been too worried about it (I hopte that is smart on my part) ...
I will get monthly scopes and finger exam by the ENT (I think he is very good) and you know, I don't know the answer going forward on how often or what type of scans I will get ...can somebody tell me what type of scanc I should be getting and how often? If so I would appreciate that.
...If up to me ..I want a PET/ CT scan at minimum every 3 months.
Thanks for asking John.
Tim
NOTE: my voice was not hoarse initially after treatments - it becamce this way just a week before my 3 month follow-up and has remained that way till now.
PET/CT at 3 month intervals is not necessary by any stretch. Most docs would say now wait at least 6-9 months. There is a school of thought that unless a physical exam finds something (remember the ENT now has the primary location) there is no reason to do any PET/CT for a year or more. My non-professional opinion is that you will be fine. You are not that far post treatment and are a long way from what you remember pre treatment. Do what you would have done a year ago for a hoarse voice or sore throat.
Take Care,
John0
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