Surgery sounds Radical and Scary to me

Val12

I went for my saliva scan and test on Friday. What we have to do when we have been diagnosed with such a horrible disease. First off I was not allowed to swallow saliva for 5 minutes, then she swabbed my tongue with lemon and I had to repeat the 5-minute thing again.
I was then taken to a room where saliva scans are taken. Had pictures of my glands taken for about ½ hour. Half way through he told me he was going to squirt strong lemon water into my mouth twice and I was to swish it around in my mouth and swallow. Anyhow after he told me he could not tell me about the lemon water beforehand cause it would make my saliva work hard and he would not be able to get a comparison. He even actually apologized for not telling me before hand. These tests will be done again just before I start treatment, after treatment and 6 months down the road.
These tests are done for the “Submandbular Salivary Gland Transfer. They will move my gland on the left towards the centre of my chin, and they will shield this gland from radiation during my treatment. In the end this will give me more saliva for swallowing chewing, speaking etc. The gland on my right side will be removed, as they are pretty sure it is diseased.
So with this transfer trial they also use the IMRT which will protect the Parotid salivary gland for radiation exposure.
Anyhow any of my head and neck buddies who are having troubles with saliva, THINK LEMONS, LEMONS, LEMONS!!!!! Maybe it will help to get those saliva glands working!!

So this surgery I am having is a bit more serious then I was prepared for. Or maybe it is scarier when the doctor actually explains it as to researching it off the Internet. My date is booked for February 18, but he said there is a good chance he will be able to move it up.
I am told that it is a 12 to 15 hour surgery, YIKES! It is actually a few small surgeries wrapped up in one major surgery. The first part includes a radical tonsillectomy, modified radical neck dissection, and the Submanbular Salivary Gland Transer. The second part is to reconstruct everything. He will be taking the skin grafts from the inside of my arm and wrist. Anyhow I am scared stiff about this all!!
He said they will be doing a tracheomtry, and I will have a feeding tube up my nose. He said he won’t do a peg tube unless it is needed for the surgery part and after. He said that the best way is to try hard to swallow from the beginning. Basically what he said was “ if you don’t use it, you lose it!” (Swallowing, that is). He also said that I won’t have the issue with the dry mouth because of the trial I am involved in. Anyhow he did say I may need it for treatment and he will install one if I find it to hard on me.
Also he said they will not let me go home until I can swallow, eat, talk, etc. He told me I would be in the hospital for at least 2 weeks. And all the therapists will work me hard to get me back to normal.

So please friends tell me this is normal please and tell me it won’t be as bad as it looks!!! I am scared stiff! What we have to go through!! I wonder if things will ever be “normal” again. And thank you for letting me vent !!!
Valerie

micktissue

Valerie
I am sorry that you have to go through this. I know the fear you are talking about as do many who post here. I am 2 days out of surgery and am grateful and fortunate that my surgery is going to give me the chance to live longer than if I had done nothing. So for me there was no decision to be made other than who to tell and from who to ask for support.

The fear you have, while not nice, is normal. You have a dangerous illness and you are taking it seriously. I'd suggest talking this through with the people who love you and can hear how scared you are. In my case I was scared right up to the point I went under. I am still scared, but I am still alive and plan on doing whatever I can do to stay alive.

I don't know about the salivary gland procedure but it sounds like a good thing once you are through this. It's a long road but you will be amazed at your strength and your resilience. Please continue to let is know how you are doing.

Warmly,

Mick

debbiejeanne

micktissue said:

Valerie
I am sorry that you have to go through this. I know the fear you are talking about as do many who post here. I am 2 days out of surgery and am grateful and fortunate that my surgery is going to give me the chance to live longer than if I had done nothing. So for me there was no decision to be made other than who to tell and from who to ask for support.

The fear you have, while not nice, is normal. You have a dangerous illness and you are taking it seriously. I'd suggest talking this through with the people who love you and can hear how scared you are. In my case I was scared right up to the point I went under. I am still scared, but I am still alive and plan on doing whatever I can do to stay alive.

I don't know about the salivary gland procedure but it sounds like a good thing once you are through this. It's a long road but you will be amazed at your strength and your resilience. Please continue to let is know how you are doing.

Warmly,

Mick

your illness
Val and Mick, I just wanted to tell you both that I am very sorry to hear of your illness and let you both know I will pray for you. You both have the right to be scared and I would be just as scared if it were me. I'm 14 wks out from my last rad treatment for throat cancer and I'm still scared! Anyway, be sure you pray and I will also pray for you. God will give you the strength you need to get thru this. God Bless You Both!!
Debbie

soccerfreaks

Pioneer! (is this a Willa Cather reference?)
Val, in the autumn of 2005 I had a 15-hour surgery of my own, mine to replace half of my tongue, along with a radical neck dissection. I think what took so long was that they also transplanted nerves from my arm to my 'new' tongue.

Afterward, I was in a medically-induced coma for four days and, as it seems it will be for you, spent two weeks in the hospital recovering.

So: you are a pioneer, it sounds like, with respect to the salivary gland goings-on.


To be honest, Val, I do occasionally question the choice to go for it. I did not do so early on, and when I am considering it in the clearest light, I am certain that I made the right decision.

Still, when you read from others on this board, and when you talk to other survivors, when you learn that they avoided these measures that I experienced and which you are about to deal with, you DO wonder.

Wondering is fine, Val. Being fearful is understandable, Val. But be sure to keep your eye on the prize: to be free of cancer AND in your case to have the opportunity to approach your former 'normal' once all is said and done.

When they told me that Amifostene might save my glands, Val, I took two shots each day prior to radiation treatment, 66 shots more or less, over a seven week period.

We do what we have to do.

And you are a pioneer, it seems.

I wish you well.

Take care,

Joe

Hondo

Hi Val

Be strong and put your faith in the hands of God to lead your doctors to make the right decision. Cancer is like a dark tunnel but on the other side is the light of Gods love showing you the way through, don’t be afraid just believe.

ratface

Hondo said:

Hi Val

Be strong and put your faith in the hands of God to lead your doctors to make the right decision. Cancer is like a dark tunnel but on the other side is the light of Gods love showing you the way through, don’t be afraid just believe.

Saliva is the key
Hi Val

I was eating some steak and rice with my college age son a few days ago. He would eat steak every day if posible. Anyway I do not normally suffer through steak as it is a tremendous amount of work to chew and swallow but I wanted to finish this meal. We were seated at a table playing a game of chess, so time was on my side. At a point during the meal I looked up and counted three empty water bottles on the table as well as one in my hand. All this to get down a small piece of very tender steak. I would gladly trade a 15 hour operation to have the ability to eat as I used to. Saliva is such a critical function of the human body that can really affect quality of life. Personaaly I would think it is worth any procedure to maintain. My own experience has only been a selective neck disection with nine nodes removed and found that to be a walk in the park compared to the chemo and radiation. If this procedure is preserving saliva function I would not question it for a moment. !5 bhours now or countless hours trying to eat later.

Kent Cass

ratface said:

Saliva is the key
Hi Val

I was eating some steak and rice with my college age son a few days ago. He would eat steak every day if posible. Anyway I do not normally suffer through steak as it is a tremendous amount of work to chew and swallow but I wanted to finish this meal. We were seated at a table playing a game of chess, so time was on my side. At a point during the meal I looked up and counted three empty water bottles on the table as well as one in my hand. All this to get down a small piece of very tender steak. I would gladly trade a 15 hour operation to have the ability to eat as I used to. Saliva is such a critical function of the human body that can really affect quality of life. Personaaly I would think it is worth any procedure to maintain. My own experience has only been a selective neck disection with nine nodes removed and found that to be a walk in the park compared to the chemo and radiation. If this procedure is preserving saliva function I would not question it for a moment. !5 bhours now or countless hours trying to eat later.

going forward
Val, it is somewhat different than others, but maybe that's for the better. We all seem to have had our saliva productivity compromised, as I have mine- which is like a thick white foam. And when I open my mouth and see the loss of gum tissue, which appears to still be continuing so long after treatment, and realize that my saliva cleansing may have helped prevent some, or much, of that loss- could be your Op. will be a very good thing for you. I, as do all of us, hope so. Please keep us informed on how it goes with you, and believe you are doing the right thing.

Believe.

kcass

wboaz

ratface said:

Saliva is the key
Hi Val

I was eating some steak and rice with my college age son a few days ago. He would eat steak every day if posible. Anyway I do not normally suffer through steak as it is a tremendous amount of work to chew and swallow but I wanted to finish this meal. We were seated at a table playing a game of chess, so time was on my side. At a point during the meal I looked up and counted three empty water bottles on the table as well as one in my hand. All this to get down a small piece of very tender steak. I would gladly trade a 15 hour operation to have the ability to eat as I used to. Saliva is such a critical function of the human body that can really affect quality of life. Personaaly I would think it is worth any procedure to maintain. My own experience has only been a selective neck disection with nine nodes removed and found that to be a walk in the park compared to the chemo and radiation. If this procedure is preserving saliva function I would not question it for a moment. !5 bhours now or countless hours trying to eat later.

Amen brother!
I do eat a lot more veggies now though and that is good. But I would pay a big chunk of change to get saliva function back.

Val12

wboaz said:

Amen brother!
I do eat a lot more veggies now though and that is good. But I would pay a big chunk of change to get saliva function back.

Thanks to all of you!
I know I am lucky to have the chance to be included in this trial, and being the doctor who pioneered this proceedure, he has done it many times. I just needed your words to help me through the next month. The surgery is booked for Feb.18th, he said he is going to try put it sooner,but being a 12 to 15 hour surgery that probably would be hard.
Again like usual you all have made me secure in my decisions on my surgery choice.
Sunshine and Smiles Val