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Pam42 Offline OP
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Hello everyone,

This is my first post. My significant other was diagnosed with tongue cancer a couple months ago.

HIs surgery was Tuesday so for the past couple months I have been a nervous wreck worrying about so many things that I'm sure you all are all too familiar with. How would he look, Will he be able to speak. Praying that they would take less of his tongue than they originally thought, which we were told 56-60 percent in the beginning.

They removed 70 percent of his tongue and took lymph nodes from the same side of his neck and part of his jaw and bone. They used tissue from his arm and leg to re-build everything. I was expecting 50 percent of the tongue. I was hoping that it would be less. Less than 50 percent gave me hope that he could re-learn to speak and that we could go back to somewhere near our normal lifestyle.

70 percent sounds really scary. The doctors seem to think he will still be able to speak with only 30 percent of his original tongue, and the rebuilt portion, of course. They believe his biggest problem will be swallowing . Today the doctor told him that it is possible he could be on the Feeding tube for life. He is very upset about that.

Here is the good news. He looks great. Exactly the same as before he went in. (Besides the scar across his neck) I was so worried about the jaw surgery. It has been swollen for a day or two now but he looks so good. And he was in really good shape physically so he is healing really well. They expect to send him home in a couple days.

He says he cant feel his tongue at all yet. It's been 3 days. The Dr. said that is normal. He had a ton of mucous and has had to suction his mouth constantly. They have already began the process of removing the trach. They have told him he can't try to drink yet but they did let him swab his mouth with a moist swab thingy, (sorry I haven't familiarized myself with all of the terminology yet).

So, I'm still really afraid about this speech returning to normal after they removed so much of his tongue. And I am really concerned about him being able to swallow. They have told him not to try to talk or do anything right now. I have been able to read some suggestions on message board about beginning to practice moving your tongue and doing tongue exercises as early as possible but they haven't told him to do that yet.

I'm wondering about the swallowing thing. They didn't really explain why they are concerned about that. Is it because they took the portion of tongue that is used for swallowing, maybe? Is it possible that if he works really hard at strengthening it that he will be able to swallow and have the feeding tube (peg tube, I believe it's called) removed eventually?

So, if any of you guys have any answers or suggestion, I would greatly appreciate it.

Thanks so much,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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I only posted my first post about an hour ago and haven't had a chance to read as many of the posts here as I would like.

How do you find out how fast the cancer spread? My SO's doctor has offered none of that information.

I have been very curious for some time now. I wasn't sure if it was even possible to obtain this info.

Thanks,

Pam



Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Welcome to OCF, Pam! Im sure we can help you and your significant other with tons of tips and info plus some excellent support to help you both. Beings a caregiver isnt easy!!! Make sure you take care of yourself and take a break once in a while.

Your significant other has been thru a major surgery which will take time to bounce back from. The kind of surgery you described must have been a very long, intricate process. Im sure it wasnt easy for you to patiently wait for the surgery to be finished. You may not notice it but your significant other has lots of swelling which takes time to go down. It can be months before its gone. For now try to follow everything the doc recommends... take a deep breath! This is likely to be a long road for you both. Dont worry, we will be here to help you thru it.

The best thing for you both is to discuss everything with the doctor who is in charge of your patients care. Your questions are NOT simple black and white questions. Answering them isnt easy at all. You will see this over and over here ... everybodys different no 2 patients will ever have the exact same experiences or react the exact same way to medications, etc! One may sail right thru everything and another could struggle right from day 1 even when these patients have the exact same diagnosis and on paper as so similar they appear to be interchangeable. What works for one may or may not be appropriate for another patient. This goes for how patients respond to medications, surgeries, recovery... pretty much everything. If you havent brought a dry erase board to help your significant other communicate with hospital staff, please consider picking one up.

Swallowing muscles when not used can quickly forget how to function together. This may be whats behind the lack of details provided? Im sorry but as a group of oral cancer (OC) patients and caregivers, we arent qualified to second guess the reasoning behind why the doctors have done what they have done or guess what their motives were for doing anything. Its best when the doc or medical team are there and talking to you and your significant other to ask them all your questions. If you arent understanding something, remember they work for both of you so ask for clarification until you do understand everything. So much better to get their expert input at the time when they are face to face and can examine the patient if you have concerns about something. Im sure they have many other patients to tend to but remember.... they work for you both so dont hesitate to pick their brains while you have the chance. Before swallowing is attempted a barium swallow test may be given to ensure all the swallowing muscles are functioning normally. Prior to any exercising, especially only a couple days after such a major surgery wait to get the OK from the medical team. Starting exercises now could do significant damage to the newly constructed mouth and cause a medical emergency if something would rip open.

Its not easy but do your best from getting too far ahead of yourself. Try to focus on what is within your control and avoid negative thinking. Over the past 12+ years after my original oral cancer (OC) diagnosis, Ive learned an incredible amount of important medical info and feel like Im now a completely different person living a very different life than when I was first told I had cancer. Looks are NOT everything, neither is speech or the ability to eat. Sure those things seem like they're some of the most important things right now but if every one of those 3 things changed or were gone your significant other still will be the same person regardless of their looks or abilities to eat and talk. All those things seem to be of the utmost importance but surviving is the real issue above anything else. lts not easy to see the big picture all the time especially when being overloaded with learning all the new medical jargon and more about the recent major surgery. Survival and eliminating the cancer are the goals with everything else being secondary. I wasnt able to see this until the day I first walked into the bathroom about a month after I walked into the hospital for my very early surgery. When I teetered my way to the bathroom on my very wobbly legs with the equilibrium similar to being on a small boat in a big storm, I hadnt yet been told what Id been thru so I had no idea it was a month later. Not recognizing yourself in the mirror is shocking!!! Even though I didnt look very good, I survived (which was the real goal) and nothing in the world can take away the person I am inside. The more you read both the posts here and the main OCF site, the better you will understand just how serious OC can be. This will make you a strong advocate for your patient and in time bring the closest couples together with a stronger bond ever.

Hang in there, its a long road but you both sound like you are on the right track smile . Plus now you have us to help you both get thru everything.




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Hi ChristineB,

Thank you so much for your quick response. Although it has taken me awhile to be able to respond, I was able to read it right away and it brought tears to my eyes (as many things seem to do these days.) I'm so sorry to hear about all of the hardships so many of you have been through.

I'm sorry I did try to read over the rules for newcomers but I have been scrolling and googling for the past few months and have come across a few different oral cancer support groups and may have gotten mixed up on some of the rules. I did try to do the signature thing tonight as well as I could. If it isnt right, I can change it or add more.

As I said before, the 2 months before the surgery were really rough and stressful and I've hardly been able to focus very well on anything. I have felt better since the surgery seems to have gone as well the doctors say could be expected and possibly(?) even better than I, personally, expected.

I believe I was getting ready to go back to the hospital that day I read your response and had plans to respond once I got there but as you see, that didnt go as planned...

So, I will update from where I left off and also try to add more information I may have left out before. So I posted on August 2nd. That would have been Friday. His surgery was Tuesday, I read your post Saturday, went back to the hospital that night, got a total of around 2 hours of sleep that night then we got to come home on Sunday at around noon. Well, I got to come home on Sunday. He got to leave the hospital, but his mom felt better to have him stay with her because I needed to get back to work and she wanted to be able to watch after him and especially to help him with his feeding tube. I, personally, also feel better about him staying with her through the week, especially while I'm working and also especially since i still havent been able to clean the house as well as I would like and I was hoping to set things up so he could be as comfortable as possible. But I had also hoped that he would come home on the weekends at least.

Since I'm back at work, I have a pretty long commute as it is, then I go across town to his mom's to check in on him and straight back home to get ready for bed and for work the next day so if anyone responds to my post, I may not be able to respond again until next weekend, unfortunately. frown

So, I do have a few questions for you all and I will try to get to it...

First of all, One reason I'm worried about getting the house cleaned is because the hole in his neck where the trach was is still not closed up and I know that needs to stay as clean as possible. I have a little dog that sheds and I need to vacuum and dust really well, which will require me, on my own, to move all of the furniture out, and I had wanted to also steam clean the carpets. The doctor, nurses, etc, didnt cover, or tell him to cover the hole that is left in his neck and I, personally, feel like it is looking worse now than before. Would it hurt to cover it?
We saw the doctor on Wednesday, 4 days ago, and I guess I should have asked him but it seemed to me that it was healing better before we saw him. I only noticed the next day that it looked worse, possibly bigger and, I thought it might have pus in it but apparently the home nurse visited yesterday and said that it was mucus.

His mucus problem also seems worse to me now. It seemed like it was getting a bit better before he left the hospital. They sent him home with a suction but it doesnt seem to work as well as the one he had at the hospital. Maybe we can order a better one? And they did give him some robitussin in the hospital but didnt tell us to continue using it. I have read a lot about people having trouble with mucus after this procedure but its all kind of in circles in my mind right now and I cant remember if they said that it gets better or if this is a life-long, constant issue. I really hope not. frown

He was a smoker for 30 years before his surgery. He didnt quit until the day of the surgery and he hasnt smoked since his surgery. I really hope he doesnt start back. I still havent quit. I have tried slowing down and have had some better days but the stress isn't helping the situation at all. That is another reason I'm not complaining, to him at least, about him being at his mom's. I certainly wouldnt want him to come home and resort to his/our old habits. I really hope that I can quit before he comes home, but that's all on me.

Another question: he only told a couple nights ago that his tongue feels swollen. I dont know if it actually is swollen or if it just feels that way to him because, it actually is a kind of a foreign object so of course it is going to feel different. We went to his follow-up with his doctor on Wednesday, and I asked the doctor all of the questions I could think of. I had taken notes but he hardly asked any questions and since he didnt mention how his tongue felt to me until afterwards, I didnt know to ask. I did ask the doc if he would need any speech therapy or a nutritionist and he said no. He said things are healing well and that he can begin talking now and that talking IS speech therapy. But I have read about tongue exercises, swallowing exercises, etc. and I'm sure it wouldnt hurt for him to try to different things if anyone has suggestions. ??

His jaw is still swollen so maybe his tongue is as well. He was taking ibuprofen before the surgery but had to switch to tylenol because ibuprofen thins the blood. I suppose he could start back on Ibuprofen now but not sure because it has that protective coating and we are having to crush his pills for his peg tube. I don't know if that would hurt his stomach?

Oh, another thing we found out from the doc on Wednesday, there was cancer in 4 of the nodes they removed. The original plan had been radiation 5 days a week after the surgery, now we're told he needs chemo. I've barely had any time to read much about chemo. Of course I know all of the things, i think most people know, like how weak it can make you, etc. but I dont know what to expect other than that. I was already so nervous about the radiation because I feel like, as soon as he begins to possibly have decent, not so bad days, again and his mouth possibly begins to feel better, they will come along with the radiation and ruin all of his progress.

As far as comfort, what do you guys think would be best for him? Should I set up a recliner? He is using one at his mom's now but he says it doesnt matter to him. And how should I set the bed up? Should i try to get a special type of pillow. It seems like I remember reading that it would be best if he sleeps on an incline.

Also, the long term problem that I asked about in the beginning, swallowing...

He has been able to drink some water since they allowed him to start trying but that is about it. frown
He tried a bite of jello yesterday and couldnt get it down, then tried a bite of applesauce today and couldnt do it either. frown I hate this...

Luckily we havent had any setbacks but the progress has been really slow this week. I understand that it's going to take time and even can get much worse. I just want to do everything I can to make it as easy for him as possible. Thank you all in advance for any suggestions.

Also I realize this post was really long. I just wanted to add all of the info I can while I have time. I may start new threads about each individual problem if and when I get a chance.

Thanks again,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jun 2007
Posts: 10,507
Likes: 6
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I just wanted to post a quick reply to let you know theres no need to make individual posts for each question or problem. That would be several different ones and other members may get mixed up trying to follow along. Im actually glad you wrote so much. smile It makes it easier to reply when knowing more of someones situation.

One thing stood out in your long reply... your husbands stoma. I dont know if its necessary to cover it or if leaving it open is best? One vitally important thing with an open stoma is NEVERT GET WATER IN IT!!!!! Patients with open stomas can drown if water goes in there. When taking a shower, the stoma must be completely covered so not one drop of water, nothing can get in. I had a stoma from a trach 10 years ago. At that time I was hospitalized for 2 months and cant really remember much about the trach or stoma except when my ENT who was the head of the hospitals ENT/head and neck dept stopped by to check on me and saw my stoma/trach was not kept clean, he was NOT happy. He cleaned it himself as all the nurses scurried around more concerned about getting in trouble than taking care of me. I was moved to another wing a couple hours later. The visiting nurse should be able to tell if the stoma site looks infected but dont ever hesitate to call the doctor and take your husband in to get checked if you see something that doesnt look right.

I'll reply more over the next few days.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Hi Christine,

I sent you a PM in reply to your post, hopefully it went through.

The stoma is closed now so that is out of the way. Yay. I really hated everything about the trach.

A couple more questions...

1. What is the best way to clean the PEG tube? Or do you have to replace parts often to keep it from getting clogged?

2. I may have forgotten to mention this in earlier posts but they removed all of his lower teeth during the surgery. As I said before, the doctors said their main concern would be his ability to swallow. He was allowed to begin drinking/trying to eat as of last week. He is drinking a lot. He says he doesn't have a problem with drinking and he also ate some yogurt and ice cream. He says that he thinks he would be able to swallow anything if he could chew it. I know Christine mentioned having a Barium swallow test performed. They didn't do it at the cancer center because he has the PEG I guess. I don't know. I think I am going to request they go ahead and do it. But I also wondered, is it important that he try to swallow as many different kinds of textures and things as he can, I just keep remembering hearing so much about "use it or lose it".

Is drinking enough to keep those muscles working or do I need to try to get as many different foods, types of foods, purees, etc. to make sure those muscles keep functioning?

I hope all that makes sense. And I know, I'm a huge over-thinker. wink

Oh, one more question. He has a huge scar on his forearm from the skin graft. Best cream or lotion to use to keep moist, prevent scarring, etc. I went with Aquaphor and Cetaphil (gentle soap) as I know it is Dermatologist recommended for things like laser treatments, etc. But this is a really deep wound so, any suggestions would be appreciated.

Thanks!

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Oct 2012
Posts: 1,275
Likes: 7
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You don’t need to clean the PEG tube. What you should do is to put in a syringe worth of water at the end of each feeding. That’s hydration as well as rinsing for the PEG. It is, however, important to clean the insertion site. Dab it with a wet piece of gauze and then put cream on it and a dressing to cover it. Don’t rub it because it will cause granulation which is very painful for the patient.

Our RO said even if the patient does just dry swallows, it will help the muscles. I am not sure about the need to swallowing food of different textures. I would think if the food is all chewed up, the texture won’t matter. There is difference, however, between swallowing food of different thickness, for example, water, nectar, honey and pudding are words used to signify the different grades of thickness of what the patient is swallowing.

The swallowing test is used to determine how well the swallowing process works in the patient, is there any narrowing of the esophagus or if there's aspiration. They do give it to patients with a PEG tube because they sometimes need to ascertain if a patient can swallow properly because they remove the PEG.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2019
Posts: 34
Pam42 Offline OP
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Ty gmcraft. We do flush the peg each time before and after meals. It seemed to be a little clogged but I looked it up on YouTube and found out that we can flush it with warm water. So that's under control.
He's supposed to go for dental work on Wednesday. I don't know if they will finish removing all of his teeth or just the really bad ones. I wish I had checked to find out if he should do the swallowing test before or after the dental work because now I believe we're going to have to wait until after whether that's best or not. smirk


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Jul 2019
Posts: 34
Pam42 Offline OP
Contributing Member (25+ posts)
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Posts: 34
And yes you're probably right. Thickness maybe the word I should have used instead of texture.


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Joined: Oct 2012
Posts: 1,275
Likes: 7
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Just a tip I got from the visiting nurse — if the tube does get clogged, put in a syringe of soda/pop. The bubbles will push whatever is clogging the tube into the tummy. Of course, if it’s really clogged, you should go to the ER.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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