Hi Everyone. Its so nice to have found this place. I just came home from mouth and throat surgery yesterday.Its still really hard to talk and swallow but Ill get there. My cancer got diagnosed about a month ago. It started out with a sore on my gum and a sore on my cheek. My dentist said it looked suspicious so I had a biopsy done and it was positive. A couple of weeks later my throat started hurting so they checked that out and yes again more cancer on 2 lymph nodes.
I had my surgery done at UNC Chapel Hill here in NC and while it was not a pleasant experience it was the best hospital experience Ive ever had as far as care.
Its now day 7 post surgery and Im finally able to swallow a bit of soup and Im trying to stay hydrated. They tell me I wont need any reconstructive surgery or speech therapy (although right now I sound as though I have a mouth full of socks!)
I am doing so much reading on my down time and I really want to improve my lifestyle. I did quit smoking about a year ago (30 year addiction) so thats one hurdle I wont have to worry about.
Well...just wanted to introduce myself! Thanks for having me!

Welcome aboard and congrats on the stopping of smoking! Yes stay hydrated and eat to stay healthy and help with the healing. Nutrition helps healing! Glad to see you found this too! I am!

Hi
I'm brand new here and going to the ENT tomorrow to discuss if I need a biopsy.
Can't really offer any advice but just wanted you to know that I'll be thinking about you.
Am I wrong to think they don't automatically check to see if the cancer has spread when your dx?
Was really surprised you had to go back with symptoms before they did further testing.

Brenda

Hi Plantgirl, a few days have passed and I am hoping you are more comfortable now and using fewer pain meds. My surgeries were in August and Sept of this year so my memories of post op eating is very clear to me. I did a lot of reading too on my downtime since chatting on the phone was out of the question!..my mouthful of socks probably sounded about the same as yours. if you like Interior Decorating the Nate Berkus tv program might be nice for you to spend some time with. Just a thought! He has a living plant wall as part of his set, truly beautiful.

keep posting Plantgirl we would like to follow your recovery with you!

Light and blessings,

Meggie

Welcome to the forum, Plantgirl. It's a great place to come and ask (or answer) questions, to give and recieve support, even joke around or just plain vent when you feel the need. There are people here who's experiences are similar to yours and people who's experiences vary widely as this disease affects us all in different ways but whatever our individual experiences, we're all here to support each other. Best wishes to you.

PG, welcome. I'm sorry you have to be here, but it's a great place under the circs. You sound as though you're getting excellent care. You didn't mention whether or not your docs have recommended radiation or chemo. If they do you'll find plenty of people here who can help you through that experience as well.

If you'd like you can make yourself a signature. There's a page of abbreviation explanations on one of the forums if you need help.

Stay in touch. Your attitude is wonderful!
David 2

Hi Plantgirl and welcome to OCF. Your diagnosis was just like mine. I had a sore on the inside of my cheek and another one on the gum behind my top molar. Its unusual but not unheard of to have 2 completly seperate tumors at the same time. I didnt have any in my lymph nodes. What a difference in treatments too. You had surgery while I had chemo and radiation. Will you be doing radiation treatments?

Best of luck with your recovery.

Thank you all for the replies. Im sorry i havent responded sooner but the last week has been hell for me. I went back to my Dr last week with a very very sore roof of my mouth.(they used tissue from it so it is very raw. I couldnt see my surgeon as it was his day off and saw one of his collegues who pretty much told me to tough it out. Thank God Im seeing my surgeon tomorrow because i just cannot take this pain any longer. Im still on painkillers 1 or 2 every 4 hours and I do not want them any more. Im not really sure what i am feeling, it feels like nerve pain, my whole upper mouth is so sore, even my teeth. My throat is better, Im able to swallow now so that is good. I started swishing with warm salty water today and that seems to be helping a bit. I will also find out tomorrow if Im going to need radiation. I really hope not. Does anyone have any suggestions on how to minimize my mouth pain? Thanks in advance. you all are so nice and friendly. Im so glad I found this forum.

Plantgirl,

You will find that most on this board are in favor of whatever pain medication is necessary to keep you comfortable. If you have a good doctor he or she will understand this.

I heard somewhere that oral cancer is at about the top of the list for pain where treatment is concerned. Some of the pain medication can be very addictive as it involves narcotics, DON"T worry about this. Your doctor will help you wind these down when that time comes.

I was on fentanyl which is very powerful and went off it myself thinking it was no big deal. I just about lost it for two days. My doc was a bit upset with me as he said he should have been told what I planed as he could have helped a lot.
Pain is part of this process, but your doc can do a great deal to minimize this. Feel free in calling in to your doctor�s office and talk to the nurse if that�s all you can get. They are very good about pain issues.

Thank you Kelly. You are right, my Dr was very agreeable to giving me as much pain meds as i want today when i saw him. I found out that I will be having radiation too. dont know how i feel about that yet, Im meeting with the Dr on Tuesday.

Plantgirl

Let me echo Kelly's advice about painkillers and go a step further. Better living thru Chemistry, I disregarded all those namby pamby labels and most definitely augmented the opiates with some beer (with the full blessings of my ENT and RO).
Unlike the PEG wars, there simply aren't enough patients who go without painkillers to have a debate. And of course, no caregiver wants the patient to suffer needlessly. Addiction as a result of oral Cancer TX is a chimera, a boogeyman of puritans, which is why competent doctors are [quote]very agreeable to giving me as much pain meds as i want today when i saw him [/quote] just as you experienced. Pain will hinder your healing.
Okay, radiation has issues, so here is my advice: Get a TSH blood level test NOW before any radiation. Why? While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level went down to 3.04 on 25 mcg ,2.17 on 50 mcg and now 1.73 on 75 mcg. Without a baseline TSH, you won't even know what is "normal" for you.
Keep the faith
Charm

Try rinsing your mouth with a combo of 16 oz warm water with 2 tsp baking soda and 2 tsp salt. If that burns, decrease the salt to 1 tsp. Rinse several times per day.

Another thing to help with pain is something called magic mouthwash. There are several different variations of this medicine. The MM I had was made of malox, lidocaine, and benedryl. You swish it around in your mouth for about 15 seconds then spit it out. That would be good for short periods of time, like when you want to eat. It lasts about 15-30 minutes max. This is by prescription so ask your doc.

Mouth pain is the absolute worst pain! Sure hope you begin to feel better very soon.

Radiation is good in making sure it's gone for longer, or never comes back. It helps to eliminate microscopic cancer cells. I had it after surgery, even though I didn't really want it, and went through hell when i had it, but now i am glad i did.

I would suggest you use whatever pain meds you can get, but use them as prescribed, and don't go off of them altogether, you have to be weened off so you don't go through withdrawal stuff.

Also, if it's just that you don't like taking pills, the fentanyl patch is a great alternative, and took a lot of pain away when i was in radiation that the pills just couldn't touch!!

If you have any questions about radiation, let me know! It's not the same for everyone. Some skate through with little to no problems, and others like me just go through hell and get every symptom and side effect on the list, even the ones they say you won't get, lol.

I will be thinking of you and hoping that this all goes smoothly!!
I do have to say, i am a bit jealous that so soon after surgery you are able to eat and swallow again, very lucky .

If you are having radiation for sure, eat as much as you can now and keep doing it till you can't. Radiation almost always makes it pretty much impossible or at the least very difficult to eat and get nourishment. I lost 45 lbs from radiation alone and 25 from surgery, and it wasn't good weight loss, all muscle! So exercise to keep up muscle function and eat as much as possible,

Wow 45 lbs? Dang...I lost 15 from the surgery and Ive been eating quite a bit, though Im really not that hungry. Thanks for the tips on the painkillers. I will definately look into the Fentanyl patch because Im really tired of this pain. It just never goes away and with the radiation Im afraid it will just get worse.

Hey all,

I'm new here as well (1st surgery less than a week ago), but noticed Charm's comment above: "there simply aren't enough patients who go without painkillers to have a debate".

I guess I'm in the minority in that I've used only minimal painkillers. Hated the opiates, and so was sent home from hospital, rather amusingly I think, with children's tylenol. Since it's liquid I can ingest it.

I'd love to discuss this with others, since I feel like it's not a common choice. Since I'm new, I wanted to make sure...is the appropriate thing to do for me to start a new thread elsewhere?

:^) Rahel

Hi Rahel,

I hated the opiates too. After being on them for awhile you really build up a tolerance and I feel they start to just mess with your system. If you need them you need them of course. How are you feeling after your surgery? So sorry that you had to go through it.

Kate

Rahel

No problem at all in starting your own thread to discuss going thru this ordeal with minimal painkillers. It'll be interesting to read. Many OCF posters accepted painkillers with trepidation and disliked the effects of opiates yet still did them.
A word of caution: don't make the mistake I originally did of carelessly using words that gave an unintended slight and or insult to those who chose differently. If I could go back in time, my PEG wars posts would make it clear that every patient who goes thru TX deserves a medal whether or not they had a PEG.
Charm

Hi Charm,

Thanks for the guidance - I will indeed start a separate thread for the discussion. And thanks for the word of caution. I *certainly* didn't mean that any one way is better than another! Just seeking to process my own experience. (If anyone took offense at my post, please accept my apologies.)

Talk to you on another thread...

Rahel

Rahel

Looking forward to it. BTW, there was absolutely nothing offensive about your post, my caution was proactive. Turns out our female caregivers are fiercely protective of their mates (Step back Sara Palin, these are the real Mama Grizzlies) so any innuendo that a TX choice means they weren't "tough" triggers passionate responses. I thrive on conflict but the very fact that you even asked what was appropriate rather than just doing it indicates a greater sensitivity (although I do feel bad later and have to apologize when I give into my Alpha Male macho mode.)