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getting ready for tounge surgey

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

I also am due for surgery on Jan 30th.But on the 16th they are doing an exploratory operation .I had a petscan and just had cat scan also.Was seen by my ent doctor and he referred to a surgen that did wanted the cat and wants to the exploratory which I'm not sure why.He did talk about a trac tube and food tube and said it is pretty standard.With mine I just thought it was some kind of growth which started last Aug but by Nov never cleared up no matter what I did.Still alittle confusing since I have no pain or blood just feels like something is stuck.Is there anything

KTeacher
Posts: 937
Joined: Jan 2011

Welcome to our little group, a club that no one wants to join.  I am a survivor, many times over.  I suggest that you read the Superthread at the top of the posts.  It will let you know what you will need to get ready for the fight.  Keep posting.  You have found a great group of honest, caring people.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

Sounds like me four years ago. I had tongue cancer and I also had food getting stuck in my throat. My first ENT thought it was nothing to get alarmed about. Until a second ENT's opinion after exploritory surgery who then sent me to a surgeon 75 miles away who performed the second exploritory surgery 4 days before he went back in and removed part of my tongue and my epiglottis. I had a trach and a feeding tube until the swelling went down and I learned how to swallow without an epiglotis. I am certainly glad I went through with it giving me (just like many others) the opportunity to tell you about the ordeal and to push you to do whatever it takes to get rid of this F’en disease. Your battle may seem long and drawn out but it is worth every ounce of energy you can muster to rid yourself of cancer. There are many on here who can answer all your questions throughout your journey and we promise not to sugar coat it. It is or can be a tough battle, and if I can do it ...................... anybody can do it. Please don't hesitate to ask any questions, we are all here to ride the storm with you.

      Jeff

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

What do they do during exploritory surgery? All I know right now that it is outpaitent I have never really heard of anyone with this type and just thought it might a cyst back in Aug but never went away.Luckily from the petscan was told it's only located at the side and alittle at bottom of tounge but they are going to remove lumth nodes on the left also.

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Hey Jeff just curious about the pain mangement? Yesterday was pretty good with exploratory nothing that could see down in throat so lucky there.But wondering about the main the surgey.My understanding is that they will rebuild whatever part of the tounge they remove from my leg tying the nerves back togther and thats the need for a trach and food tube they don't want anything to interfer with the healing but am wondering how they handle the pain...

CivilMatt's picture
CivilMatt
Posts: 2962
Joined: May 2012

thennies61,

Welcome to the H&N forum, where many of us felt nothing.  For me I did feel a lump, which sprang me into action.

I also had tongue surgery and a Jugular Vein dissection to remove a lymph node.  A little discomfort from the surgery, but no pain (for me).

The PET & CT scans will show areas of interest and sizing of the areas.  Then your  team will map out a plan for treatment, to get you back to square one.

This is the time to wonder how and why and be scared, but there are no easy answers, it just is.  Be assured we have all been there and we feel deeply for your condition, but rest easy it will all be taken care of soon.

Matt

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Sorry you had the need to find us but glad you did. My situation was different from yours, cancer in jaw. Both my trach and g-tube were temporary. The reason was for safety, in the event of swelling. Made sense. Some of these things are more acceptable when you understand the need. Don't hesitate to ask questions of your doctor, nursing staff or on this forum. It's not helpful or healthy to read allot on the Internet.  You can do this!

Candi

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Thanks Matt I felt no pain and no blood last Aug when I finally noticed something thought it was a cyst or maybe a sliva gland blocked which my brother had.I thought it would it go away with mouthwash for mouth sores .Felt better but didn't go away just felt like I had food stuck somewhere.Then in oct noticed a small hole under tounge and said thats not good and in nov went to ugent care since I never really had a doctor whech she sent me to the ent.He took a sample and ordered a pet he said it looked like the beginning of cancer and so it was when I went back.He then sent me to the surgen for a game plan and had a ct but haven't heard anything back on that except now for exploratory on the 16th and orginal date for surgeyr was the 23 now pushed back to the 30th.He did say whatever is taken will be replace with skin and muscle form my thigh.And your right am wondering how and why basically because I never heard of anyone going though this until I came to this site.My doctor did say it is getting more and common. I've always been up beat and that won't change cause like you said it is what is and lets go after it.It's nice to know what is is going on the unknow is more scary then the known.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

Both exploritory surgeries were so two different doctors could see it first hand and take tissue. I thought the same thing as you but then realized I was in a situation of being a truck driver with cancer asking two well known doctors why they are treating me. Don't be afraid to ask them, I asked questions all the way through some serious and some joking just to throw them off guard. Keep a positive attitude and have trust and confidence in your professional team. Second quessing tends to take away from confidence and the positive attitude.

Alot of us have been on the road your about to travel. You have a big advantage over me because I didn't really find this website until my battle was over but these great people certainly helped with the healing.

      Jeff

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Thanks Jeff

The first doctor did an exam in Nov and took a a sample tissue and said it had cancer cells so wanted a petscan.When I went back he said they they did a whole body scan and it showed it was only located on the left side under tounge and that most likely the lobe on the left side would be taken out also.He then made an appointment for to see a doctor that specialises in this.And went there last monday and he did the same exam plus ordered a cat.And wants to do an exploritory on the 16th as an out patient so just not sure what that involves.And wanted to do the operation on the 23rd then called yesterday and pushed it back till the 30th.He said most likely will remove the underside of the left side and he has another doctor that he works with will rebuild it with tissure and muscle from my leg.Insert a trach and food tube he said it will help with the healing.And the trach can removed at his office.He said most likely will miss 3-4 months of work.Will have it done at university in cleveland.

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

just wondering now how long do the tubes stay in?

MarineE5
Posts: 754
Joined: Dec 2005

thennoies61,

I will try to give you a ball park idea of the time frame that I had with the tubes. I had a trach, drain tubes and feeding tube installed when I had my Base of Tongue Surgery. The Drain tubes were for the Radical neck disection which included the removal of over 30 Lymphnodes, 2 affected. The drain tubes remained in for about 2 weeks. I was at home and had to record the amount of fluid draining twice a day and when I was seen by the Surgeon at the 2 week mark, the drains were removed.

The Trach was installed due to the swelling involved with the surgery and I had the Trach tube for roughly 6 weeks. It was down sized every 2 weeks as that was how often I was seeing my Surgeon at that time. Eventually, it was removed and healed on it's own very nicely I might add.

The PEG Tube, I had to use right away as I mentioned, I had Base of Tongue cancer and over 1/3 of my tongue was removed and the tongue needed to heal. I had the PEG Tube from the start, but after having the Trach removed, I was instructed to start eating orally with soft foods until I was comfortable eating the soft foods then move on to other foods being careful not to choke.

The PEG tube stayed with me until after my Treatments of Radiation as we get sores in our mouths during treatments and eating orally can be an issue. The Doctors don't want us to lose any weight so we may need to supplement our calorie intake with liquid nutrution via the PEG tube. I had the PEG tube removed about 2 months after my final treatment of radiation once my Radiation Ocologist saw I was gaining weight back orally.

Again as it is often mentioned here, your time frame will vary from others, as we are all different and heal at a different rate. I hope this is helpful and gives you an idea as to the tube situation.

My Best to You and Everyone Here

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I would get a detailed explanation about the need for the exploratory surgery from the surgeon who wants to do it and a second opinion aso, just to be safe.

 I was told I would most likely have a temporary trac after my tongue base surgery and left neck dissection but I did not require one as I did not swell very much.  I was lucky I guess. I did have an NG tube for 3 days that the nurses put my pain meds in but they had me swallow to eat which was wierd since it hurt like H***.  After my major surgery experience I would ask what the pain management plan is.  I was in a university hospital and the pain management was inadequate.  They offered to give me morphine on the 3rd day after I had suffered horribly with PRN (as needed) Vicodin Q 4hours.  PRN means you have to ask for it which is hard when you cannot talk or fall asleep so that plan is terrible!

I did have a great surgeon so do your homework up front while you have the time.  Keep a record book of the names of health care professionals you speak to and the answeres to all your questions, that will help you remember and sort things out.  I always had a friend or family member along too so we could compare notes.  Often we were like deer in the headlights and did miss things.

Make an appointment to speak to the surgeon to get the plan before surgery and also with the anesthesiologist if you can, otherwise you are left to ask questions and get explanations while they are ready to wisk you into surgery and you are trying to prepare mentally for the surgery to take place and need to be calm.

Best of Luck and may your guardian angels be with you,

PJ 

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

As far as I can tell they want to go in and explore to come up with a game plan for the following surgery two weeks later.I know they knock me out for it and most likely groggy after but wondering what kind of pain after and if they give me anything for it.As I said this is all kind of new haven't been on the table since I was 8.Did anyone else not have any pain or blood? All it felt like that something was stuck back in Aug and when it wasn't going away went to see an ent.

lornal's picture
lornal
Posts: 230
Joined: Sep 2013

I had it on Mondsy for my new cancer. I needed a Trach so he looked around to see where the tumor was hiding (and it was iding well because 4 other docs never saw it Or suspected my issues were anything other than radiation scar tissue)

After exploring and biopsies the came up with the game plan. 

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Thanks lornal I thought that was the whole idea to go in take a look and then make a game from there along with the pet and cat scans.I don't have any problems swallowing once I get the food past the base of tounge and chew slowly so have gone to a softer foods instead of thing like meat.Just not sure how long an exploratory and biopsies takes or if that knock me me out or numb me.Doctor never said.

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Just wondering after exploratory surgery is there any down time or is everything pretty sore.

lornal's picture
lornal
Posts: 230
Joined: Sep 2013

I got a Tracy at the sametimer so there downtime for that. But, I would guess it is similar to when I had me esophagus dilated and a biopsy. I was at work the next day.  Earlier dilations were harder to recover from because I was dehydrated. After the peg, it was easier. 

I don't knowthat I was supposed to drive the next day, but I did

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Just called to see about my explortory.She said it is for thursday afternoon.Asked what was involved.She said it takes about an hour and they run a scope down my throat and take a look then biopay of tounge again.My first doctor already did that last month.Now wondering if they are being though or is that standard for this type of surgery.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I am thinking each Dr. wants to have their own look. As I said, both mine took a chunk of the cancer while doing their own exploring. I had no down time with either. Look at it as getting aquainted. (Doc - cancer...........cancer - Doc) They can ussually give you more of their plan of attack after their exploration. I would view it as a plus as in my case he went in on a Monday to explore, met with him Wednesday to explain the major surgery he was going to do that Friday.

       Jeff

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Kind of thought that plus will get to see the people that are going to work on me.I was suppose to have the surgery on the 23rd then after cat scan pushed it back to the 30th.The only time my tounge actually hurt was the next day after the first chunks were taken out .Guess I can look at it as my first step towards recovery..

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

sometimes you wonder why lots of poking, prodding, and testing but better to have more looks than less. In the end you will have more comfort that your diagnosis and treatment plan are based on truer facts. Once the diagnosis an treatment plan are firmed up and you get past the time gap before treatment actually get going, you will feel more comfort that things are finally underway. Easier said than done but you will endure and make it through.

Don

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Very true I would rather have the doing all these tests to come up with the right game plan.Then I start thinking how much worse can the tounge become while having these tests being done over the last 2 months

thennies61's picture
thennies61
Posts: 188
Joined: Jan 2014

Hadmine done yesterday running way behind had to be there at 11:30 supoose to do it at 1:00 never got into the or till 3:30 good thing was done by 4:30 and home by 6:30.As far as I know everything went good nothing down in throat and looks like it's locatcated along left side of bottom of tounge.Gave me a slight pain med from biopsies out side of that had a great night if sleeping.

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