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Cheryld #131124 03-11-2011 05:13 PM
Joined: Oct 2003
Posts: 89
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Posts: 89
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




History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
michelle41 #131125 03-11-2011 05:34 PM
Joined: Mar 2008
Posts: 3,082
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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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #131419 03-16-2011 10:04 AM
Joined: May 2010
Posts: 224
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Posts: 224
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.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #132001 03-25-2011 12:27 PM
Joined: Feb 2011
Posts: 9
ching Offline OP
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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!

ching #132073 03-27-2011 06:02 AM
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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,


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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