I need help and advise ( SASH and SOCCERFREAK)
My trach is being put in this Thursday as my anesthesiologist had trouble even getting a tube down for the biopsies. ENT is scared I"ll go to sleep one night and throat will close up and won't be able to get help in time. Please someone tell me about trachs too. The pain in my mouth is unbievable. So, I'm holding it together with Lorazapan and hyrocodone. My mouth wash numbs the skin.
I have asked for a referral to the H. Lee Moffitt Cancer Center in Tampa. If there's hope...it's there for me. I know no-one can tell me what to do. But I was hoping some that have gone through this will tell me...what it was like for them. The details of what to expect, recup time. What will my life be like. And this is from both sides. Radical surgury and the other. I also have been reading a lot of the diet info on alkaline cures. So much to take in at once and how to go. My head is spinning.
SASH and SOCCERFREAK i ESPECIALLY REMEMBER YOU TWO because of your experiences..please post. Thank all of you in advance....A very scared Lady..Rose
Comments
-
Rose
So sorry to hear of your biopsy results. A major center, with what your ENT has told you, should be your next step. Would seem that if they are talking major surgery- that's the sort of thing only the major centers could do the best.
Thanks to a car accident, I lived with a trache tube for some 26-months back in 68-70. There is daily cleaning of at least the inner tube with Peroxide, and I had no complications with the trache. Breathing was never easier than when I had the trache. It does take the lungs a little while to adjust to the new breathing, and the sometimes there will be more lung mucous than previous. Traches may have changed in the past 40 years, but mine were made of sterling silver.
In my hopes and Prayers, Rose.
Believe
kcass0 -
Rose, I have never posted to
Rose, I have never posted to you before but I wanted you to know that Connie and I will be praying for a miracle for you. Hopefully, God willing you can get the treatment you need. Their are no words that I can think of to comfort you. Keep your faith and take this one day at a time. You are special and hopefully God will come to the rescue. Loving you, Homer & Connie0 -
H. Lee Moffitt Cancer Center in Tampa
Excellent place from my understanding....
I live in Lakeland so I went to the Center for Cancer Care & Research - Watson Clinic, they are affilliated with Moffitt.
My ENT is MD. Serge Jean', he is an awesome MD, very knowledgeable and hands on...I am two year out, and he still sees me every few months and has since the beginning. He is also who diagnosed me, heads my team and removed my tonsils (the original culprit).
MD. Jean - Watson Clinic
If he is within your means and distance, I have total faith in this guy. He saved my life I am sure (along with the other MD's). My chemo MD was MD. Mulaparthi, she is awesome too, and my Rads were done under MD. Barrett.
Anyways, hope you find someone good and toughts and prayers.
John0 -
I'm terrifiedSkiffin16 said:H. Lee Moffitt Cancer Center in Tampa
Excellent place from my understanding....
I live in Lakeland so I went to the Center for Cancer Care & Research - Watson Clinic, they are affilliated with Moffitt.
My ENT is MD. Serge Jean', he is an awesome MD, very knowledgeable and hands on...I am two year out, and he still sees me every few months and has since the beginning. He is also who diagnosed me, heads my team and removed my tonsils (the original culprit).
MD. Jean - Watson Clinic
If he is within your means and distance, I have total faith in this guy. He saved my life I am sure (along with the other MD's). My chemo MD was MD. Mulaparthi, she is awesome too, and my Rads were done under MD. Barrett.
Anyways, hope you find someone good and toughts and prayers.
John
Rose, I have to say you terrified me. I don't know how you even wrote it. I'm also a little mad at your current doctor and then again he/she presented both sides to you. So I guess we come to the question you have to answer, fight or flight? I really don't know how I would answer it? I hope to start out as you did, looking for direction. That tells me I already know what you are going to do. You are taking a road trip. God speed!0 -
i like aggressive
The choice is only yours, Rose, as you know, and no one in here, not me, not SASH, no one can make that decision for you.
I can tell you that I have always chosen the aggressive route, even when it meant a 15 hour, a smaller tongue (half of it a replacement from my left arm), radical neck dissection, a four day coma (induced), and both rads and chemo.
I like it here, and I like the people
.
So I opted to stay, and to work through whatever problems the surgery and the other treatments dealt me, and I am now 5+ years cancer free with respect to head/neck cancer.
I had a PEG tube for four years and should probably still have one. THey had to use a pediblock (pediatric bite block) for my dilation yesterday because of trismus (my mouth doesn't open quite as much as it should). All worth it to be here among loved ones, to continue to experience all that there is in this wonderful world (with the occasional exception, of course).
I only had my trach while in the hospital, Rose, but it was plastic, as I recall. Are you sure you will have to maintain a a trach when you have recovered from the surgery? Are they perhaps talking about a voice box replacement?
Your post-surg, post-treatment, experience, is likely to be different than mine, as they saved part of my tongue, and I don't know how much of your 'throat' (esophagus?) they are removing or if you really mean your neck?
But there are ways to work around obstacles if you want to live, Rose. If you get a PEG tube, for example, it is inserted into your stomach and can be hidden from the public. You can live well on the protein and other nutrients you can get down that tube. You will, I would suspect, have speaking difficulties, but even they can be overcome to a great extent (see above reference to 'new' voice box).
I would advise that you be sure to remind your docs wherever you go that pain mgmt is a critical part of your plan (easier, so much easier, to quit, when you are in extreme pain). I would advise, to borrow a term used here frequently, that you prepare yourself for a 'new normal'. But if you feel as though you have more things to do in this world, I would advise that you go for it, Rose.
If you choose the other route, no one can show disrespect for that choice. It will not be a bed of roses, pun not intended. They will STILL need to remove some cancer one way or the other to give you a level of pain mgmt that you can tolerate.
They will have to give you chemo and/or rads, and they will have to give you pain medications, I would think.
Again, I have been aggressive, and I'm still here. That might just be the luck of the draw, but I would change very little at all about my treatment or my outcome.
I wish you the very best with this extremely personal and painful decision.
Take care,
Joe0 -
Trach etcsoccerfreaks said:i like aggressive
The choice is only yours, Rose, as you know, and no one in here, not me, not SASH, no one can make that decision for you.
I can tell you that I have always chosen the aggressive route, even when it meant a 15 hour, a smaller tongue (half of it a replacement from my left arm), radical neck dissection, a four day coma (induced), and both rads and chemo.
I like it here, and I like the people.
So I opted to stay, and to work through whatever problems the surgery and the other treatments dealt me, and I am now 5+ years cancer free with respect to head/neck cancer.
I had a PEG tube for four years and should probably still have one. THey had to use a pediblock (pediatric bite block) for my dilation yesterday because of trismus (my mouth doesn't open quite as much as it should). All worth it to be here among loved ones, to continue to experience all that there is in this wonderful world (with the occasional exception, of course).
I only had my trach while in the hospital, Rose, but it was plastic, as I recall. Are you sure you will have to maintain a a trach when you have recovered from the surgery? Are they perhaps talking about a voice box replacement?
Your post-surg, post-treatment, experience, is likely to be different than mine, as they saved part of my tongue, and I don't know how much of your 'throat' (esophagus?) they are removing or if you really mean your neck?
But there are ways to work around obstacles if you want to live, Rose. If you get a PEG tube, for example, it is inserted into your stomach and can be hidden from the public. You can live well on the protein and other nutrients you can get down that tube. You will, I would suspect, have speaking difficulties, but even they can be overcome to a great extent (see above reference to 'new' voice box).
I would advise that you be sure to remind your docs wherever you go that pain mgmt is a critical part of your plan (easier, so much easier, to quit, when you are in extreme pain). I would advise, to borrow a term used here frequently, that you prepare yourself for a 'new normal'. But if you feel as though you have more things to do in this world, I would advise that you go for it, Rose.
If you choose the other route, no one can show disrespect for that choice. It will not be a bed of roses, pun not intended. They will STILL need to remove some cancer one way or the other to give you a level of pain mgmt that you can tolerate.
They will have to give you chemo and/or rads, and they will have to give you pain medications, I would think.
Again, I have been aggressive, and I'm still here. That might just be the luck of the draw, but I would change very little at all about my treatment or my outcome.
I wish you the very best with this extremely personal and painful decision.
Take care,
Joe
joe, thank you for responding. I was going to private message you but don't know how. My ENT is puttinand wg the trach in because when I went in for biopsies, the anethesiologist had trouble getting the breathing tube in my throat. Evan faxed that repost to me at home. So, my ENT is putting the trach in so that my airwave isn't cut off in the night and I can't get Emergency help fast enough. That;s the whole reason. I almost said no...but thought he must know best what's going in my throat at this time.
To be honest with you he tried to talk me out of total surgury and take the sit back approach. Constantly bring up "Quality of life." But, I remembered you and sash. and said...geez they did it...so can I. I have already had radiation 2 time and chemo once in conjunction with first rads. Last time I had paroid gland removed with rad only. Then this happened. It was only Sept..when my scans came back clean and then this. I can't even remember all he said..wish I had recorded it. But, basically..h e feels my whole tongue would be removed, voice box.and part of my throat.he says I have BOT tumors inaddition to tumors in tongue. Also, I already have a peg and post from first set of rad and chemo.
I wasn't so much asking you what I should do...but what happened to you surgically. I thought it might help me make a decision. The thought of it scares me to death but the alternative is just as scarey. The thing with me is no more rads. I've been told I am maxed out. Personal message me if you want. I need info. thanks again Rose0 -
Rose
Sorry to read about your results Rose. No words are adequate; just here for you and praying for you.
Bob0 -
So Sad
Rose, your post is so sad. Thoughts and prayers for wisdom go out for you and doctors.
I thought I would share my experience with trach. I have had mine now 33 months. The first couple were a challenge only because of the unknown. i went in for biopsy and came out with trach and biopsy's. So it was a surprise and that was part of the challenge. I was given the trach for the same type of reason you are getting one. I say this that I felt the help with my lungs that the trach was helping. They were working easier. Day after day it was easier and then week after week. The first approx. six weeks I used the suction machine some and less and less as time went on. Now it seems like I use it very little. I clean my inner canular every hour except when I sleep. It sure has helped me sleep alot easier. I change the trach it self about every three weeks. I have three that i use all the same size. Something I thought of was you may get a different trach if and when you have surgery, one that is more permeant. You will need to ask your doctor about that.
I will say today it has become part of my new normal life that keeps changing. So I certainly can live and deal with it as I am blessed just to be here.
Prayers for peacefulness going out your way.
John0 -
No NO don't be terrified.ratface said:I'm terrified
Rose, I have to say you terrified me. I don't know how you even wrote it. I'm also a little mad at your current doctor and then again he/she presented both sides to you. So I guess we come to the question you have to answer, fight or flight? I really don't know how I would answer it? I hope to start out as you did, looking for direction. That tells me I already know what you are going to do. You are taking a road trip. God speed!
Ratface, that's the last thing I want to do is scare anyone. And you are right...I will fight if I can get to Moffitt. I will take anything they can offer. I have much to give back yet. and I feel It's not time to stop giving.
I'm a little upset with my Doc now also. And will let him know that at the ptpper time. But now isn't that time. But, I'll be in surgury at 7:30am tommorow so say a little prayer for me.
Being here on this network and in this group has been so important to me. Outside in my world Everyone around me is scared to death of cancer and almost act like it's contagious. Thay try, God bless them, but it's so hard for the others too.
Thank you to all that have sent blessings and I send mine back to you because I how you have things too that are fearful. Love to all here...Rose0 -
SKIFFIN AND Moffitt etc.Skiffin16 said:H. Lee Moffitt Cancer Center in Tampa
Excellent place from my understanding....
I live in Lakeland so I went to the Center for Cancer Care & Research - Watson Clinic, they are affilliated with Moffitt.
My ENT is MD. Serge Jean', he is an awesome MD, very knowledgeable and hands on...I am two year out, and he still sees me every few months and has since the beginning. He is also who diagnosed me, heads my team and removed my tonsils (the original culprit).
MD. Jean - Watson Clinic
If he is within your means and distance, I have total faith in this guy. He saved my life I am sure (along with the other MD's). My chemo MD was MD. Mulaparthi, she is awesome too, and my Rads were done under MD. Barrett.
Anyways, hope you find someone good and toughts and prayers.
John
John, thank you for message. I don't know where to begin. Well, first I have insurance but it's HMO Humana. But, I see that Moffitt takes medicare and medicaid so I figure they will take mine. For me that's always the problem is having every thing cleared through them first. That's the only hurdle. I'm in Clearwater so it's a bit of a distance but not when it comes to saving my life. I'll get there. Yes, Moffitt is suppose to be one of the leaders in cancer and also on the cutting edge. But, I will have to use the doctors that are there if all is cleared by insurance and that's ok.
I have to admit I have lost faith in my doctors here and if I get to Moffitt...I will drop them like a hot potatoe.
I didn't want to post my bad news because it's scary and I was concerned I might upset someone here that's fragile or having bad times. But, I needed you all so much. I have people around...but they just don't know what to say. They try but...cancer is something that is a big mystery and they feel lost to help. But, as soon as I saw posts I began to get brave again. Amazing how it helps to talk to people that have been there can make so big of a difference.
What really has got me is that my Pet showed no spreading to the rest of my body. Just my entire mouth. How, easily he threw out the words terminal to me. Well, yea I would be terminal if I don't do something and let it spread. But this type of surgury is beyond their expertise so maybe that's why. But, I've been on the internet a lot and seee that people live with total removal of tongue, voice box and part of throat. Not a pretty picture but talking is highly overrated..LOL and I can survive peg feeding. So, it would be my new Normal.
Thanks again for supporting me. One of my next appt will be with a priest. I'm Catholic so Ihave to have their support too.0 -
fISRPOTPEfisrpotpe said:So Sad
Rose, your post is so sad. Thoughts and prayers for wisdom go out for you and doctors.
I thought I would share my experience with trach. I have had mine now 33 months. The first couple were a challenge only because of the unknown. i went in for biopsy and came out with trach and biopsy's. So it was a surprise and that was part of the challenge. I was given the trach for the same type of reason you are getting one. I say this that I felt the help with my lungs that the trach was helping. They were working easier. Day after day it was easier and then week after week. The first approx. six weeks I used the suction machine some and less and less as time went on. Now it seems like I use it very little. I clean my inner canular every hour except when I sleep. It sure has helped me sleep alot easier. I change the trach it self about every three weeks. I have three that i use all the same size. Something I thought of was you may get a different trach if and when you have surgery, one that is more permeant. You will need to ask your doctor about that.
I will say today it has become part of my new normal life that keeps changing. So I certainly can live and deal with it as I am blessed just to be here.
Prayers for peacefulness going out your way.
John
Thank you for info on trach. I was getting a little edgey about that but reading your post cleared up a lot. I guess it the same reasons. Throat is too tight for air to pass if there's emergency. And better to be ahead of that. I will go for the surgury if I can get into Moffitt. I've already decided that. Yesterday fear was all I felt...today the fight is coming back. (Tale of the tiger LOL) Don't know more then that. Tommorrow Trach in. Hospital stay about 3-4 days. And then hopefully I'll get appoinment with moffitt.
I'm not terminal till God tells me I am. And it hasn't gone anywhere else in my body so...I'll fight. Thank you sweet man. Rose0 -
Tale of the Tiger~honeybelle22 said:fISRPOTPE
Thank you for info on trach. I was getting a little edgey about that but reading your post cleared up a lot. I guess it the same reasons. Throat is too tight for air to pass if there's emergency. And better to be ahead of that. I will go for the surgury if I can get into Moffitt. I've already decided that. Yesterday fear was all I felt...today the fight is coming back. (Tale of the tiger LOL) Don't know more then that. Tommorrow Trach in. Hospital stay about 3-4 days. And then hopefully I'll get appoinment with moffitt.
I'm not terminal till God tells me I am. And it hasn't gone anywhere else in my body so...I'll fight. Thank you sweet man. Rose
Thoughts and prayers are with you Tiger!0 -
Advice
Rose,
Sorry you are going through all of this. Moffit is one of the best places in FL for cancer treatment. I went to Sylvester in Miami and they were great. One of my nurses came from Moffit.
If I was to have surgery first, it would have been similar to what you are being told. Entire tongue and voice box removed, PEG feeding for the rest of my life, etc.
My doctors thought that I would be able to handle simultaneous radiation (46 doses) with 12 weekly chemos. This was an attempt to try and shrink the tumor so the surgery wouldn't be as extreme. After all the treatments, surgery was scheduled to remove 85-90% of my tongue. Luckily the only thing they found in doing 6 deep tissue biopsies while I was on the operating table was scar tissue and dead cancer cells.
You can look at humana's website to see if Moffit is covered. My work is changing to Humana next month and I have already verified that all my doctors and Sylvester are covered for both HMO and POS.
The trach wasn't bad and it did allow for breathing when air wont pass from the head to the lungs. I only had mine for about a week so you can't really judge my experiences with it. There are some people that live a long life on feeding tubes and trach tubes and everyone is different so recoup time and daily function is all based upon you. Some are proud of what they have gone through and don't let scars, tubes, holes, etc. stop them from living their lives, while others keep to themselves. This only you can decide how you are going to "live".0 -
No advice, just love.SASH said:Advice
Rose,
Sorry you are going through all of this. Moffit is one of the best places in FL for cancer treatment. I went to Sylvester in Miami and they were great. One of my nurses came from Moffit.
If I was to have surgery first, it would have been similar to what you are being told. Entire tongue and voice box removed, PEG feeding for the rest of my life, etc.
My doctors thought that I would be able to handle simultaneous radiation (46 doses) with 12 weekly chemos. This was an attempt to try and shrink the tumor so the surgery wouldn't be as extreme. After all the treatments, surgery was scheduled to remove 85-90% of my tongue. Luckily the only thing they found in doing 6 deep tissue biopsies while I was on the operating table was scar tissue and dead cancer cells.
You can look at humana's website to see if Moffit is covered. My work is changing to Humana next month and I have already verified that all my doctors and Sylvester are covered for both HMO and POS.
The trach wasn't bad and it did allow for breathing when air wont pass from the head to the lungs. I only had mine for about a week so you can't really judge my experiences with it. There are some people that live a long life on feeding tubes and trach tubes and everyone is different so recoup time and daily function is all based upon you. Some are proud of what they have gone through and don't let scars, tubes, holes, etc. stop them from living their lives, while others keep to themselves. This only you can decide how you are going to "live".
Rose,
I started to write yesterday and then I wanted to think what I could say that would help in some way. I want you to know that all of us here are fighters. We have proven that, so have you. Many here have had to fight two or three times. I just found out Jim in Delaward has lung cancer and started his fight this week. Well I just want to send you love and strength to fight through this ordeal. We are all here for you when you need us. If love and prayers can help then the H&N gang will do our best to support you. Know you are not alone in this fight. Keep fighting hard....
All the best with love,
Steve0 -
Good Luck Rosehawk711 said:No advice, just love.
Rose,
I started to write yesterday and then I wanted to think what I could say that would help in some way. I want you to know that all of us here are fighters. We have proven that, so have you. Many here have had to fight two or three times. I just found out Jim in Delaward has lung cancer and started his fight this week. Well I just want to send you love and strength to fight through this ordeal. We are all here for you when you need us. If love and prayers can help then the H&N gang will do our best to support you. Know you are not alone in this fight. Keep fighting hard....
All the best with love,
Steve
Rose: I am new to this forum and to this horrible disease, but I wanted to wish you the best possible outcome. You have proven already that you are a fighter, and I am sure you have some more fight left in you. You are in my prayers and am sending you virtual hugs,
From Ingrid in Chicago0 -
RoseIngrid K said:Good Luck Rose
Rose: I am new to this forum and to this horrible disease, but I wanted to wish you the best possible outcome. You have proven already that you are a fighter, and I am sure you have some more fight left in you. You are in my prayers and am sending you virtual hugs,
From Ingrid in Chicago
Sent you a Private Message. On the left-side of this page is "CSN Email," and that's how you access it. Sash's post in this thread is worth another read, Rose.
kcass0 -
All the good energy I can muster up...Kent Cass said:Rose
Sent you a Private Message. On the left-side of this page is "CSN Email," and that's how you access it. Sash's post in this thread is worth another read, Rose.
kcass
...is being sent your way. Some have posted who have more experience in facing what you are about to face. There is one fellow who has not yet posted who was given a prognosis 6+ years ago of a feeding tube for the rest of his life and loss of voice. He stands over 6 feet tall, looks as strong as an ox, talks great, (writes great too) and eats like normal, just slower. He had one of the best H&N docs in the area who predicted the gloomy fate...and yet he defied the prognosis.
I am never one to pass up an opportunity. And if there is an opportunity to overcome, to fight, to defy the prognosis...then take that opportunity.
I recognize the decision is personal. Mark wanted quality of life. It was a huge factor in chosing his treatment plan. His words were "I am not afraid of treatment, I am not afraid to die; I am afraid to not have a quality of life". That can only be measured by one person.
Rose, go forward and know that you are supported wholely here as you journey on.
Kim0 -
"They did it . . . so can I"honeybelle22 said:Trach etc
joe, thank you for responding. I was going to private message you but don't know how. My ENT is puttinand wg the trach in because when I went in for biopsies, the anethesiologist had trouble getting the breathing tube in my throat. Evan faxed that repost to me at home. So, my ENT is putting the trach in so that my airwave isn't cut off in the night and I can't get Emergency help fast enough. That;s the whole reason. I almost said no...but thought he must know best what's going in my throat at this time.
To be honest with you he tried to talk me out of total surgury and take the sit back approach. Constantly bring up "Quality of life." But, I remembered you and sash. and said...geez they did it...so can I. I have already had radiation 2 time and chemo once in conjunction with first rads. Last time I had paroid gland removed with rad only. Then this happened. It was only Sept..when my scans came back clean and then this. I can't even remember all he said..wish I had recorded it. But, basically..h e feels my whole tongue would be removed, voice box.and part of my throat.he says I have BOT tumors inaddition to tumors in tongue. Also, I already have a peg and post from first set of rad and chemo.
I wasn't so much asking you what I should do...but what happened to you surgically. I thought it might help me make a decision. The thought of it scares me to death but the alternative is just as scarey. The thing with me is no more rads. I've been told I am maxed out. Personal message me if you want. I need info. thanks again Rose
You got that right, Rose. Recover quickly from tomorrow's surgery - hope it makes it easier on you. Hope you can get to a medical team ready to fight as hard as you. Do well.0 -
Honeybelle22Kimba1505 said:All the good energy I can muster up...
...is being sent your way. Some have posted who have more experience in facing what you are about to face. There is one fellow who has not yet posted who was given a prognosis 6+ years ago of a feeding tube for the rest of his life and loss of voice. He stands over 6 feet tall, looks as strong as an ox, talks great, (writes great too) and eats like normal, just slower. He had one of the best H&N docs in the area who predicted the gloomy fate...and yet he defied the prognosis.
I am never one to pass up an opportunity. And if there is an opportunity to overcome, to fight, to defy the prognosis...then take that opportunity.
I recognize the decision is personal. Mark wanted quality of life. It was a huge factor in chosing his treatment plan. His words were "I am not afraid of treatment, I am not afraid to die; I am afraid to not have a quality of life". That can only be measured by one person.
Rose, go forward and know that you are supported wholely here as you journey on.
Kim
I don't even know what to say right now. You are dealing well with this as just reading your post scared me half to death. Hearing those words is seriously my worst nightmare.
Just wanted to let you know I am saying extra prayers for you right now. I also pray that whatever you decide to do, you will be strong in that and know that you have done the best for you.
Hugs and blessings,
Sweets0
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