Hi there, I'm glad I found this website and forum. My husband was diagnosed with stage IV squamous cell carcinoma earlier this week. It appears that the cancer had spread from his tongue to lymph node(s) in his neck. CT scan showed that it has not metastasize to his chest area so that's good news. (diagnosis is T2N2M0) the surgery is in 2 weeks and i'm wondering what to expect post surgery. the doc has told us that he would need about 5 days in the hospital to be fed through the tube and then be home-cared for about 6 weeks. i'm wondering what would be the pain level that he would go through as the morphine wears off.. some told me it's not serious illness and others tell me it's going to be difficult.. just want to know what to expect (if that's possible at all..) and what i can do to give him good care. thanks in advance.

My cancer was stage IV as well, starting with my tongue as also spreading to my lymph nodes. A little less than half my tongue was removed and also the lymph nodes. I had my surgery about one week after diagnosis on a Wednesday and went home on Saturday. Will he have radiation and chemo as well? I actually had more problems w/the radiation and chemo than I did with the surgery. The surgeon gave me a prescription for pain to take at home (liquid) I had pain but it was manageable. Good luck to your husband. I am glad you found this site. I wish that I had found it when I was going through my treatments.

Ching, welcome. As many here will also tell you, we're sorry that your husband, and you, are having to go through this but very gratified that you've found this online community. It's a wonderful place.

You didn't mention what specific surgery your husband would be having. I'll let those who've undergone tongue surgery speak to that issue.

If he's having a neck dissection for the lymph nodes, it's of course serious surgery but something doctors are very skilled in. Barring complications he should expect to recover from it well, although there are various possible side effects - some short term, others longer, some perhaps permanent.

I'm just about 2 years post-surgery. My neck is still numb and stiff on the left side, though it has gradually improved and I expect more improvement. That is, the area of numbness has shrunk. In my case there was likely some nerve damage to that side of my tongue, which remains largely numb. Although my RO (radiation oncologist) has told me that feeling can take up to 5 years to return, so I'm hopeful.

Will your husband be getting any additional treatment - radiation and/or chemo? That's another whole area of discussion, to address as you need it.

Pain is of course individual. I didn't find the pain from the surgery itself terribly bad. Had IV Dilaudid during my 11 days in the hospital (don't be alarmed, there was a complication in my case requiring an emergency tracheotomy) but afterward didn't feel I needed anything. Of course, once I started in with RT (radiation treatment) it was another story.

I wish you both the best. Please keep us posted on his progress. We're all pulling for you.

David 2

Where on the tongue is his Primary?

Was he a tobacco user?

Hi, thanks so much All for your replies!
David - the Primary is on the left side of his tongue (top and side). Measurement is 11mm and depth is considered deep. Doctor didn't tell us how deep but that it was deep. Also not sure about the size of the cancer on his lymph nodes but that they're there..
No, he is not a tobacco user and doesn't drink.

David 2 - doc didn't mention the specific surgery.. just that a the Primary would be removed, as well as a neck dissection to take out the lymph nodes and then taking some skin from his wrist to cover the neck dissection part. He didn't recommend chemo or radiotherapy but that surgery operation would be more successful in killing the cancer cells. Not sure if it's due to age (hubby's almost 40). He's expected to be followed up every 2 months and see if there's a need for chemo or radiation.

Zengalib - i'm not sure if he'll have chemo or rad.. We're going to cancer agency this coming week. hopefully we will know more. I think we were both shocked that we didn't really know what to ask and just signed up for the operation as early as possible. It does sound very similar to yours. Glad to hear you had 4 clear scans!

I wouldn't consider myself totally knowledgeable but my husband has had two surgerys to remove lymph nodes now, - he now has a scar in the neck area basicly from ear to ear but has never had to have a graft from his arm to cover the neck dissection part. He did have a graft from his forearm to rebuild his tongue when he lost 1/2 of it due to the tumors. Just wondering.... I agree it is hard to take in all the info when talking with the Dr.'s. I used my cell phone to tape record the conversations and that helped a great deal. There were things said that we both did not remember the Dr. saying on the recordings.

Hi Ching, welcome to OCF. I did not have my tongue or lymph nodes affected any of the 3 times I was diagnosed with oral cancer. See, there are so many different places it can be, mine was in my cheek and behind my top left molar. Where is your husbands tumor? Right now Im sure you and your husband are trying to figure out all kinds of things. You have come to the right place, we will help you!

You should be encouraging your husband to eat right now. If he gains a few pounds that isnt a bad thing! Until the doc actually gets in there and operates, he cant be sure how much tissue will be taken. As far as the pain goes, the docs normally dont send patients home on morphine. Its usually some other pain med like oxycodone or lortab, make sure you ask for liquid. This can be put right down his tube! Make sure you flush it with water afterwards. If you need help with info on the feeding tube, let me know. I can help with that too.

A second opinion at a cancer center is a good idea. It can mean a completely different treatment plan. Its where a whole team of doctors discuss how best to treat your husband as an individual. Regardless of what caused the cancer, the treatment will still be the same, that doesnt change. If your husband is a smoker then his odds of a recurrence are greater than if this was caused by HPV.

Best wishes with everything!

Ching, I wish you and your husband luck in the coming weeks. You have come to the right place. My diagnosis really took me by surprise as well. The last time I had been hospitalised was when my son was born, and he is 32 years old. They really moved quickly with me. I was fortunate in that I didn't need skin grafts or a trach. I did have a PEG tube before I started radiation and chemo, and also a port. (I still have the port.) Be glad if he doesn't have to have radiation or chemo. I really had no problems with the surgery. Keep us updated on your husband's "new normal."

I had a similar surgery as your husband probably will have. For me, the right side of my tongue and neck. They took the whole right half of my tongue, and 40 lymph nodes from the right side of my neck.

Did they biopsy lymph nodes? Cuz they usually don't say it is for sure in the lymph nodes until they biopsy them.
But my doc, as well as many other docs, may follow this surgery with radiation, due to spread to lymph nodes, and depending on deepness.

Mine went from top to bottom of my tongue, so I guess you could say it was deep, . I also had perineural invasion, which means the cancer ran along/around my nerves, and because of how deep it was, plus spread to lymph nodes was why they chose to do radiation.

Surgery was a lot easier then radiation, but wasn't a cake walk. For me, I was in for 8 days, and had a about 10 hour surgery using the free-flap transplant from left wrist/forearm to recreate tongue, and 40 lymph nodes pulled during right side neck dissection. Also had a tracheostomy, and NG tube (feeding tube that goes in through nose, through digestive tract, into stomach). Those are both pretty much a guarantee, the feeding tube (whether it be a NG tube or a PEG tube) and tracheostomy as we are sometimes on a ventilator after such a major surgery.

My pain was always kept under control from surgery, it was radiation that it was difficult to manage, but every one is different for everything. Healing times, way they respond to meds, and how things heal.

I have pictures if you are interested, but best advice I can give you, is bring a notebook. Have any questions you can think of before your appointment written down, and bring them with you in the notebook, and write the answers down. That was a big help for me through it all. Also something for him to write on for communication after surgery would be a good idea. My hospital had a little dry erase board and marker i could use, but i was constantly have to erase that thing, due to tracheostomy, you can't talk unless they plug it. Thats the type I had. This doesnt mean your experience will be the same as mine. Many people get a special trach that allows them to talk without a problem.

Not trying to scare you by any means. If I did I am sorry I was just telling you my story which will be different than yours. If you have any questions, let me know. Where is he being treated at, and where do you live? One more question, do you know the date of his surgery yet?

I am sorry you had to find this site, but I am glad you did, it was a huge help for me, and I hope it is for you and your husband!

Most likely his cancer is not related to HPV due to the location of the Primary. He falls into that 3rd category of oral cancers which have become more prevalent in the last 3 years and that is Non smoking HPV negative and they have shown themselves just as aggressive as tobacco related HPV negative SCC. I would still try and get a 2nd opinion because in the 5 years I have been on this site I have never heard of anyone needing a graft for a ND. JM2C's

Hi
I am from Toronto and am just wondering where you are going for your treatments. I hope you are going to Princess Margaret, as it is a CCC like those in the US.

From your two posts it seems that the only doctor that he has been seen by is a surgeon, which of course means that the treatment plan is going to be surgery. Here in the states and predominantly in Canada, some combination of multiple treatments is becoming the norm. Surgery alone is only used in very early cancers by many institutions and with chemo and radiation in others. I hope that you are getting opinions from a treatment team (here in the US referred to as a tumor board), where doctors from different disciplines, (not just surgery) decide together what is the best course of action. That usually ends up with the best ultimate results.

You must have misunderstood the doctor, I have never heard of a graft being used for a neck dissection. And 40 is avery young man. He can tolerate (unless there are confounding other problems) physically any of the current treatments that they have to choose from.

Ching,

I would highly recommend another visit with the surgeon prior to the scheduled surgery date. As others have said, grafts are generally not needed for a neck dissection but they are used to rebuild the tongue. I suspect that's what the surgeon was talking about. If that is the case, is only one surgeon doing both parts of the surgery? I had two surgeons - the ENT who removed the cancerous tissue and a reconstructive/plastic surgeon who rebuilt my tongue. I met with both before my surgery and was able to ask many questions about what to expect during recovery. I spent about 10 days in the hospital, including 2 or 3 days in the trauma ICU ward. It wasn't easy and any one who says this isn't serious just doesn't know what they're talking about. This is a very, very serious cancer.

- Margaret

sorry my bad. skin graft is for the tongue not for the neck.

We're in vancouver. Not sure if vancouver cancer agency is like CCC... the surgery will be done in the general hospital.

I'll be sure to ask about the treatment team when we go in next week.

Ching - it is a serious illness - it's cancer - I had a tumor on my tongue - the size made it stage 2 - 2.5 cm x 1.5 cm - from my CT and MRI scans I had no lymph node involvement - I will find out for sure today as I have my first post op check up. I had the same surgery as your husband will be having. It was a 10 hour surgery - part of my tongue was rebuilt with a graft from my wrist. I was in the hospital 10 days - I have heard of shorter times - I am not sure why - I think it's dependent on the dr. And the medical system in the country you live in. Possibly insurance related - however - I am three weeks post op and feeling good. I am not 100 % yet but operating at about 85% - my speech is still off because my tongue is swollen, my neck and shoulder are still stiff and numb - but I've had no real pain - even post op. They had given me morphine for the first 48 hours but it made me a space case - and since I wasn't in pain I asked them to stop. From that point on I had a couple of Tylenol 3s before bed. And by day 7 I was off pain meds. That said - everyone has a different pain tolerance - it's a big surgery - by no means is it an easy recovery - but things will improve daily. The wrist (my graft site ) is the worst of my scars. It has healed well but it's just ugly - but there's no real pain there either - the range of motion of my neck wrist and shoulder are still not perfect but I imagine a few months from now they will be fine. I am eating well (normal foods, small bites, though some foods like rice are unruly), and speaking with a lisp, but I think that will heal in a few months as well. everyone is an individual and I'm told I heal quickly, but hopefully this gives you some idea of what to expect with your husband. Take care and my thoughts and prayers are with you.

Hi Bethers0808 -

No, you're not scaring me. I prefer to know the facts beforehand so anything is good.
They didn't biopsy the lymph nodes, but through the CT scan, it showed at least one lymph node infected. I'll ask for the deepness of the cancer today with the oncologist.
He's being treated at Vancouver General Hospital, in Vancouver Canada. The date of his surgery is next Tuesday. It'll take about 10 hours or so followed by approximately 5 days in the hospital. The feeding tube is G2 Tube. From scanning a couple of posts, I see PEG and NG but not G2... That'll be one of my questions today.

I do have other questions if you don't mind..
1) some people told me I should monitor him at night too in case he chokes and can't breath. They said that if he has a hard time swallowing after the surgery, and he has phlegm build up in his throat, then there's a danger of him not able to breath. I don't even know how to begin to help him on that front. Is it to keep him not lying flat and have large pillows so he can kind of sit up while sleeping? sorry this may be a very dumb question.
2) he has allergies. in the morning, he spends a couple of minutes clearing up his nasal cavities as well as his throat. with the neck dissection, will he still be able to clear his throat?

thanks so much for your advice!

Thanks! I think I really need to record or tape the appointments with the surgeons.. Because the length of the cancer on the tongue (the Primary) is 11mm... but it's considered stage IV... I'll have to get all the facts straightened out today...

also, would the grafting part on the tongue be able to replace the part that's taken out or just partially? If you don't mind me asking, how long does it take to be able to speak or make some sounds afterwards (like uh-huh, or uh-um)?

i'm thinking after he comes home from the hospital, that I'll give him all liquids and then blended juices from potatoes, or fruits and veges, and then work it up to small bites of solid foods.

Thanks so much and hope your post op check up goes well!

Okay - I was eating solids by day ten - omelets etc...(but I am told this is a little earlier than average. Rice is still hard because it's messy - and gets everywhere mashed foods too, then with limited tongue mobility cleaning the stuff out of your mouth is a task - I used to take a swig of water after each mouthful to swish it around and clear out the foods and help swallow. It takes time to figure out what works but usually it's easier to chew and swallow on the unaffected side.
Usually staging is based on size and I am sure If i am wrong someone here will correct me But it also has to do with how involved the cancer is. If there is at least one lymph that's visible on a CT scan - then there are possibly more
and that I believe does change the staging.
The grafting replaces what is taken out it's usually quite swollen. For the first couple of weeks making it hard to eat and swallow. Plus there are stitches inside his throat and and on his tongue as well as on the outside of the neck. Whether he will be able to speak is dependent on whether he has a trache put in temporarily or not - facing a ten hour surgery with a reconstruction my dr. Wouldn't do the surgery without one. This was the worst part for me. The trache they put in in the OR allowed me only to breath through the trache hole - with that in I couldn't talk - have a pad and paper nearby so he can write his requests. On day 3 they changed my trache to a fenestrated trache and from that point on I could talk (though it was very mumbly) and breathe through my nose and mouth.
Day 5 they removed my hrache completely and i was breathing through my nose and mouth but found it more comfortable to sleep if i was laying on my side and with some pillows and my head elevated that way my tongue could loll to one side making it easier to breath. You should ask the dr. if he will have a trache in.
I found the soft diet to be a pain and opted for small bites of softish foods like egg, soft small veggies, half grapes, berries etc.. I avoided seedy things though because those things can hide in your mouth. Juices and stuff are great - but if he's swallowing without pain and his good side has mobility then he should be okay with small bites as well as the juices.
I would play it by ear - see how he feels and what his pain level is.

Thanks so much - My post op was good - I have to have radiation and chemo but my dr is using it as insurance as he believes he got it all so I'm good with it. Best of luck with your hubby it's not an easy surgery but with your help he'll do well because you sound like a very supportive caregiver. My though and blessings are with you.

Hello,
My experience, unfortunately, was not as rosy as some of the previous posters.
I don't want to scare you, or others reading the post, but feel the need to be blunt or honest with my experience.

But on the positive side - I am still here. I am a 7+year oral cancer survivor.

First off, as you read posts on the OCF website you will see that this cancer can be a very deadly cancer - even in young, and otherwise healthy people.

In my opinion, you need to view this as a fight for your life.
You need to be aggressive with the treatment. You do NOT want a recurrence.

You need to do what you have to do. Don't be afraid or worried about the pain, or discomfort, or what you will lose (teeth, speech, good looks, etc)
If you lose your life, those things don't matter.

You will be surprised what you and your husband can endure. You are fighters and can do it. There will be rough moments.

I think caretakers have a very difficult roll because they have to sit by & watch. That is hard. It is frustrating.

I had a Stage 2or3 diagnosis (T2N0M0) - left lateral tongue in Sept 2003. I was in the hospital for 10 days after an 11 hr surgery for a hemiglossectimy, neck dissection, and reconstruction using a free flap from my pectoral muscle.

To address some of your questions - and as you may have found out by now since it sounds like surgery was earlier this week:

Pain? That wasn't really a concern. In the hospital they will give plenty of medication and you can and should let the medical staff know if it is not working.

Rather than pain, I would describe it as more of discomfort. I had pain medication, I was groggy and sleepy and out of it for days. The frustration of not being able to move or do things was hard. This continued once home - not the pain, but the other side effects were very difficult.

I was not allowed to drink water or take anything by mouth. I had a nasal tube through my nose that was used for feedings & IVs. Rather than pain from surgery I found the tubes and bandages, etc. to be in the way or irritating. I couldn't drink water and my lips were dry. I didn't feel pain, but I couldn't roll over or get comfortable. I had a tracheotomy for a week, and didn't get out of bed for the first several days. I was amazed at how weak I had become and how difficult it was to simply walk or get up or use the bathroom.

As for whether you need to monitor him for breathing that may depend on the nursing staff - that is what they are there for and should answer calls.

I could not speak for about a week. I used paper & pen to write.

As for phlegm & mucus in the throat - that was a major problem for me and very uncomfortable. The 2 solutions used after surgery - the nurses would suction out the fluids through the trach opening. It is similar to the suction hoses used by dentist offices. The other help for breathing was that oxygen was provided - I don't really know the set-up since I was on the otherside of it and couldn't see, but I think there was a constant flow of oxygen through a tube that was taped to my face under my nose.

I would have to press the call button often to call the nurses to suction my throat. Honestly, this was about the worst part - not being able to breath is very scary, and before it got to that level it was just very uncomfortable. I don't know if it is possible to get any decongestant or allergy medicine that might reduce his nasal issues.

Communicating was hard since I couldn't talk, but I also was heavily medicated and under a fog so even thoughts were more basic, I think I did mainly hand gestures or head shaking for the first few days. I could grunt a little and make speech-like sounds after 5 or 7 days once the trach was removed and they put on a different type of trach fitting that allowed me to talk. I didn't use it much - writing on paper was more efficient.

I didn't have it at the time but I could see now using a cell phone, ipad, or laptop to communicate. Besides being groggy, the entire mouth, surgical area is swollen so moving a mouth to speak didn't even seem possible.

As for the grafting & reconstruction procedure. In my case the skin and tissue was used more to repair the surgical damage than to "reconstruct" the tongue, it was used to repair or reseal the floor of the mouth. My tumor was also "deep" or invasive so I think they had to do more excavation on the floor of the mouth/base of tongue. With the pectoral muscle they also rebuilt the left side of my neck where many lymph nodes were removed (fortunately all clear!)

I did not eat food at all while in the hospital or even at first when home. As many others here have found cans of Ensure or other nutritional beverages will become a main food source.

I don't think I was prepared for how much the long-term, or permanent speech effects would be. Also eating has been a life-changing issue. But as I said - view it as a fight for life. As many here would echo - the changes can be tough, but its better than the alternative.

Little things that helped me a lot: 1. take it one day at a time, 2. It could be worse, 3. Appreciate the improvements you made since the day before or the week before, not comparing it to life before cancer.

Hang in there! It is tough but you can do it!
feel free to contact me if you have questions or would like to talk.
Michelle

As for choking in your sleep, the first few months, I slept sitting up with pillows propped under me. Even now, two years after surgery we have the bed itself elevated six inches at the head and I use a double pillow to keep my head elevated. I automatically wake up now when I'm choking and just go to the bathroom sink and spit it all out.
I thought I would die of choking in the hospital since the nurses were so cavalier about it, insisting I suction myself.
Ask about getting a home suction machine, it was really great the first few months to be able to plug it in and suck all that stuff out, just like in the hospital. The hospital set it all up before my discharge.
Michelle spelled it out with her 1,2, 3 so I'll just say Amen.
Best wishes
Charm

I never had any issues choking in my sleep. I was in the hospital for 8 days, and I had my ng tube in for 3 almost 4 weeks and had my trach in for almost 3 weeks. When the trach starts to clog up, he can cough it up, or try to, and if that doesn't work, they should teach you how to suction it out if he goes home with it in. Most don't go home with it in, but I did.

I slept flat on my back until radiation, and then I just slept on the couch with a wedge pillow under my head and that was because of the peg feeding tube I had in.

As for eating, they should give you a plan, or have you meet with a dietician when the time is right to start him back on eating.

I went from ng tube to food that was the consistency of mashed potatoes, or baby food and just went from there. It all depends on how they handle things though.

Before I was allowed to eat, I had to show my speech therapist that I could eat applesauce ok and swallow water ok. It was exciting but also nerve wracking. But it was much easier to eat soon after surgery then it was radiation, that took a lot longer.

I wouldn't try things too soon though. Just go with what the docs advise. I hope surgery went well! thinking of you both and hoping for the best.

Thank you all!! Much appreciated. The surgery went well except for a minor complication of a hole that was opened up during the surgery. It has since healed and closed.

The stay at the hospital was longer than expected because his neck and arm got viral infection. It has since been reduced. Although the opening in his neck (where they took out the lymph nodes) had to be opened up more to let the pus out and stop the drainage issue.

Pathology report came back and indicated that there were three lymph nodes in his neck that were affected. Radiation to commence in the next little while. I'm wondering would they do radiation on a spot where the skin has not fully closed up? Something I would need to ask the radiation specialist..

He also passed the swallow test "with flying colors" (his own words) so he's drinking lots of boost and will start to eat bits of fish tomorrow.

It's fortunate that other than the bleeding on his arm and neck, he's for the most part, functioning like how he was before the surgery.

I'm wondering what would be the cause of occurrence of cancer cells? If all the lymph nodes on the left side and the primary on his tongue have been taken out, would it now be diet that would be a major cause of the occurrence? hopefully it's not stress due to the caregiver... :S

wishing you all the best!

Usually they wait for him to heal before radiation as it is harder for radiated skin to heal.there may be some microscopic cells still in his system - hence the radiation. To kill any stragglers! Best of luck and glad he's doing well,