After radiation: Tracheotomy, feeding tube and hard to swallow

Posted by evamarie0077 @evamarie0077, Feb 28 4:14am

After radiation I cannot even take a sip of water I have a tracheotomy and feeding tube 60 % of the time I suffer even with medication I do not know why my throat bleeds at times I do not know a lot to help myself doctors etc seem to busy and rushed to answer my questions

Hi @evamarie0077, glad you found Mayo Clinic Connect and decided to reach out. Welcome. I am sorry to hear you are having such a difficult time after radiation. According to NHS, "Bleeding. It's common for there to be some bleeding from the windpipe (trachea) or the tracheostomy itself. It's usually minor and improves within a few days, although in some cases it can be significant and a blood transfusion may be needed." – Tracheostomy – Complications – NHS: https://www.nhs.uk/conditions/tracheostomy/risks/

May I ask a few questions to get a little more information from you?
Do you have esophageal cancer? and is it only when you have radiation that you can not drink any water?

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@amandaburnett

Hi @evamarie0077, glad you found Mayo Clinic Connect and decided to reach out. Welcome. I am sorry to hear you are having such a difficult time after radiation. According to NHS, "Bleeding. It's common for there to be some bleeding from the windpipe (trachea) or the tracheostomy itself. It's usually minor and improves within a few days, although in some cases it can be significant and a blood transfusion may be needed." – Tracheostomy – Complications – NHS: https://www.nhs.uk/conditions/tracheostomy/risks/

May I ask a few questions to get a little more information from you?
Do you have esophageal cancer? and is it only when you have radiation that you can not drink any water?

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Thank you so very much for getting back to me I really felt lost and alone in this , They say the cancer is gone it was on my flap on my vocal box I am going to be like this for life I was given 33 radiation treatments it is like my throat was welded shut the 3 surgeons say I cannot be fixed they have tried to operate twice they say it will rip and cause death , I was done radiation a year ago in November, I asked why so many treatments he says I have to have 33

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@evamarie0077

Thank you so very much for getting back to me I really felt lost and alone in this , They say the cancer is gone it was on my flap on my vocal box I am going to be like this for life I was given 33 radiation treatments it is like my throat was welded shut the 3 surgeons say I cannot be fixed they have tried to operate twice they say it will rip and cause death , I was done radiation a year ago in November, I asked why so many treatments he says I have to have 33

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@evamarie0077 First, please know Amanda was not the only one who saw your post and cared very much about the really rough time you have had and still have. Feeling alone in any cancer journey can sometimes be worse than the disease itself. While we can’t “fix” your situation, we can bring a community to you and help you find a way to find one of your own making. Can you please tell us some of what personal or medical “family “ you have had the past couple years? Also, are there any services you receive on a regular basis?
Nancy

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@1nan

@evamarie0077 First, please know Amanda was not the only one who saw your post and cared very much about the really rough time you have had and still have. Feeling alone in any cancer journey can sometimes be worse than the disease itself. While we can’t “fix” your situation, we can bring a community to you and help you find a way to find one of your own making. Can you please tell us some of what personal or medical “family “ you have had the past couple years? Also, are there any services you receive on a regular basis?
Nancy

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I was living in Florida my son came and got me and brought me to Indiana where he lives to be treated for the cancer my son does everything for me brings me to every appointment because I have trouble speaking so much he has also been my voice he protects me and really does everything right now he has to burn my stomach where my feeding tube is I have a big painful growth around where my tube is it has to be burned with a sulfur stick very painful until a few days after it’s burned , before I had radiation I had all the rest of my teeth pulled 12 I never even needed a pain pill I’m pretty good handling pain but it’s always something between my throat that feels like I have a curler iron on high in my throat and my feeding tube , after radiation I also developed narcolepsy and have Lymphedema I have to be on a humidifier machine up to 14 hours a day before I found out I had the cancer I was a happy person enjoying helping others my hobby is sewing i am a seamstress I invited my own bathing suit cover ups and other items most of the time I do not charge I enjoy seeing people happy I’m a bit nervous i really feel good that maybe even getting advice on a few things that could help me ty

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@evamarie0077

I was living in Florida my son came and got me and brought me to Indiana where he lives to be treated for the cancer my son does everything for me brings me to every appointment because I have trouble speaking so much he has also been my voice he protects me and really does everything right now he has to burn my stomach where my feeding tube is I have a big painful growth around where my tube is it has to be burned with a sulfur stick very painful until a few days after it’s burned , before I had radiation I had all the rest of my teeth pulled 12 I never even needed a pain pill I’m pretty good handling pain but it’s always something between my throat that feels like I have a curler iron on high in my throat and my feeding tube , after radiation I also developed narcolepsy and have Lymphedema I have to be on a humidifier machine up to 14 hours a day before I found out I had the cancer I was a happy person enjoying helping others my hobby is sewing i am a seamstress I invited my own bathing suit cover ups and other items most of the time I do not charge I enjoy seeing people happy I’m a bit nervous i really feel good that maybe even getting advice on a few things that could help me ty

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Hi @evamarie0077, I add my welcome. I enjoyed reading that you are someone who likes to help people and that you use your talents as a seamstress to give to others. It looks like it is now your turn to receive help. I've added this discussion to the Head & Neck Cancer group (https://connect.mayoclinic.org/group/head-neck-cancer/). In this group you'll meet other members like @alpaca @popeyegurl @msherfinski @arismac @deborahe @jeffk @phinken @loli @karly and more who have had laryngeal cancer or other head and neck cancer that required a tracheotomy and/or feeding tube. They can offer some tips and support for the issues you are facing after radiation treatment.

I'm really glad that you have your son to help you through this. Are you now in the care of the cancer team in Indiana? Does your team include an Certified Wound Ostomy Continence Nurse to help with the management of the trach and the feeding tube?

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@evamarie0077

I was living in Florida my son came and got me and brought me to Indiana where he lives to be treated for the cancer my son does everything for me brings me to every appointment because I have trouble speaking so much he has also been my voice he protects me and really does everything right now he has to burn my stomach where my feeding tube is I have a big painful growth around where my tube is it has to be burned with a sulfur stick very painful until a few days after it’s burned , before I had radiation I had all the rest of my teeth pulled 12 I never even needed a pain pill I’m pretty good handling pain but it’s always something between my throat that feels like I have a curler iron on high in my throat and my feeding tube , after radiation I also developed narcolepsy and have Lymphedema I have to be on a humidifier machine up to 14 hours a day before I found out I had the cancer I was a happy person enjoying helping others my hobby is sewing i am a seamstress I invited my own bathing suit cover ups and other items most of the time I do not charge I enjoy seeing people happy I’m a bit nervous i really feel good that maybe even getting advice on a few things that could help me ty

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@evamarie0077 Hi again. Thank you for such a good update. Your son seems to have inherited his mother’s giving heart. It warms my own heart to know that you have that blessing. I find it very appropriate that Colleen moved you to another group where you will find more people who share your journey. It will help you find that you definitely are not alone. There is a good chance you will find others who can benefit from things you have learned along the way. You may even help them learn that they also are not alone. Meanwhile, I hope that the team you currently work with continues to meet your needs. Please continue to let us know if you are finding the help you hoped for. Peace, Nancy

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@evamarie0077

Thank you so very much for getting back to me I really felt lost and alone in this , They say the cancer is gone it was on my flap on my vocal box I am going to be like this for life I was given 33 radiation treatments it is like my throat was welded shut the 3 surgeons say I cannot be fixed they have tried to operate twice they say it will rip and cause death , I was done radiation a year ago in November, I asked why so many treatments he says I have to have 33

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There is a surgeon at Wake Forest Baptist Hospital who has developed a new surgical technique for cases like yours , and mine . I find out 4/13 how it works , for me .
PM me if you want more info .

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@jbhart38731

There is a surgeon at Wake Forest Baptist Hospital who has developed a new surgical technique for cases like yours , and mine . I find out 4/13 how it works , for me .
PM me if you want more info .

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meant for @evamarie0077

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@jbhart38731

There is a surgeon at Wake Forest Baptist Hospital who has developed a new surgical technique for cases like yours , and mine . I find out 4/13 how it works , for me .
PM me if you want more info .

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Hi, I am new to this site, and my username is Suz22. I also have a trach and I'm on a permanent feeding tube. I also do bleed under my trach. My situation is very similiar to evamarie's. I can't eat, drink, and can only whisper. Can you please let me know of the new surgical technique? My medical team told me they can't remove my scar tissue or fix my epiglottis, which is fused to my throat wall. They said I need a larengectomy. But too afraid to do that, and don't want it. Feel depressed at times. Appreciate any responses. ThanK you, God bless, and big hugs!

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@jbhart38731

Hi, I sent a post 2 days ago. I have a very similiar condition as Eva marie. You responded to her post saying thier is a new surgical technique. Could you let me know on 4/13 what that entails? I would appreciate any help you can give me. Thank you!

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@suz22

Hi, I sent a post 2 days ago. I have a very similiar condition as Eva marie. You responded to her post saying thier is a new surgical technique. Could you let me know on 4/13 what that entails? I would appreciate any help you can give me. Thank you!

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@suz22 and @evamarie0077 I haven’t touched base with Cynde for awhile and need to introduce myself to Suzz and find so many things that make two similar. As a Volunteer Mentor on Connect I had the pleasure of meeting Cynde several weeks ago. I think moving to a new group was beneficial and I would like to suggest that Suzz would find many good connections there as well.
https://connect.mayoclinic.org/group/head-neck-cancer/
Meanwhile, although I have a totally different medical path, I don’t want to think of anyone not finding someone to talk with. So I will always be here for both of you, and hope that you might find help and support in knowing each other. Perhaps @jbhart38731 will post to share his findings from April 14. Since this is actually the first time I have paired two who have not “met”, will you please let me know if it is helpful to share the similar path with each other? And Suzz, how does the other site fit for you? Peace, Nancy

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@suz22

Hi, I am new to this site, and my username is Suz22. I also have a trach and I'm on a permanent feeding tube. I also do bleed under my trach. My situation is very similiar to evamarie's. I can't eat, drink, and can only whisper. Can you please let me know of the new surgical technique? My medical team told me they can't remove my scar tissue or fix my epiglottis, which is fused to my throat wall. They said I need a larengectomy. But too afraid to do that, and don't want it. Feel depressed at times. Appreciate any responses. ThanK you, God bless, and big hugs!

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Hi @suz22, I'd like to add my welcome too. It sounds like you are having a difficult time with the trach, scar tissue and bleeding. I'm tagging fellow members @karly @sepdvm @jeffk @phinken and @alpaca in the hopes that they may have experiences and tips to share with you.

Suz, have you considered getting a second opinion?

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