I was just diagnosed for oral cancer in the tongue. Will need another surgery and radiation. Not sure yet about chemo if it will be needed. They said the radiation is very painful on the tongue. That I may not be able to work. Anyone going thru radiation?

Welcome to OCF! You're in the very best place to get info and support to help get you thru your upcoming treatments and recovery.

I suggest reading thru posts and also on our main OCF site to absorb as much info as you can. An informed patient makes a strong advocate! Ive included a couple links to help you get started.

One thing you will quickly learn... everyone is different and will respond in their own unique way to treatments, medications, procedures, etc. Even when comparing patients who on paper appear almost identical is not an accurate comparison. Take patients who are the same age, sex, height, weight, similar medical histories, tumor size, stage and location as well as living in the same general area but these almost identical patients can have vastly different experiences. Ive seen this happen over and over. One patient will struggle thru treatments while another will sail right thru with barely any side effects. This is can be applied to how patients experience pain during treatments. Theres plenty of things that can be done to help get patients get thru their radiation treatments. Always remember what one person goes thru does NOT mean everyone else will experience the same or even similar things. Everyone is different and will have their own unique experiences. Focusing on what is within your control helps to make this easier too.

On very important thing patients can do to help make rads as easy as possible is to focus on your intake... starting right now. The better patients do, the easier they will get thru it. Its not going to be a walk in the park but you can do this, we will help you. Every single day your minimum intake must be at least 2500 calories and 48-64 oz of water. I know it sounds like alot but thats the least amount you should be taking in. If you can do more (3000 or even 3500 calories), then that will only help make all of this easier on you. Dont worry about gaining a few pounds, treatments can be difficult and most patients lose whatever they've gained.

Anyone you tell about your oral cancer (OC) will probably ask you what they can do to help. Most people truly want to help but just do not know what they can do. Make a list of those who offer their help by taking down everyones name and contact info, tell them when the time comes you will contact them. Theres a million small things that can be done to help you and your family get thru this as easy as possible. Friends and relatives can drive you to treatments, take turns sitting with you if you are hospitalized, cook a meal for your family, walk the dog, take out the trash, mow the lawn, pick up prescriptions, do some light housework, etc. We all need a hand at some point, nobody gets thru this alone.

If you havent already gone for a second opinion, it would be a good idea to get one. If you can get to a comprehensive cancer center (CCC) that would be an excellent place for your second opinion. Ive included a link for that too.

Hang in there and do your best to avoid "what if's" and comparing yourself to other patients. You have us to help get you thru whatever you are facing.

List of Cancer Centers

US News Best Hospitals List

Main OCF Site, Understanding section

I'm going through radiation right now and it's been a whirlwind journey for me. Be prepared for the worse but hope for the best!! I am scheduled to have 35 treatments done and I have 7 more to go. The first 4 weeks were fine for me. No problems at all. Week 5 came and I got an oral fungal infection and my tongue really swelled up. I've since been on an antifungal med and a steroid. Both help tremendously!! I've also been on pain meds since Week 3 or so. Increasing the amount as the weeks go on.
I had a feeding tube placed at my surgery 4 months ago and this is what is keeping me alive. No kidding. I borrowed a VitaMix from a neighbor and this has been a lifesaver. I throw everything into the blender, puree really well and inject in tube 5-6 times a day for nutrients. I'm also crushing all of my pain meds and injecting them through my tube.
Everyday I experience happiness, support and pain. I laugh each day and I cry ALOT each day. I've never been on an emotional rollercoaster as this. I've hit depression stages twice and reached out for help. My pastor at church and neighbors are gifts! Ask for help and accept help.
The only other advice I have is to accept your limitations. I was told by my surgeon that 4 months or so after surgery I'd be feeling a whole lot better. Ummm, not a chance. Everybody is different, no doubt. I'm now realizing that you should give yourself time for a full recovery.

Every time I see your name I think it's one of my posts! Nice to see someone with the same spelling, but this is going to get confusing fast.

Yeah, if you're so far out from surgery but now into radiation ... no way are you going to be feeling 'better' ... that won't come till after the radiation is over, because radiation continues to work for a time after you stop treatment. But sounds like you are doing well with the feeding tube, much better than I did, AND you had the sense to get on pain meds sooner than I did too. (Clearly you got the brains that go with this first name!) Do give yourself time and grace to heal. This is an EXCELLENT time to indulge in a DVD set of a favorite TV series and watch the whole thing, bonus content and all. (I think we watched all of Golden Girls, most of MacGyver, and all of Stargate, plus maybe Murder She Wrote too ... my kids were watching with me, and we had a blast with that part.) Too bad they can't write prescriptions for that ...

I LOVE the fact that are names are similar..very fun!!

Finally finished radiation this past week- hip hip hooray! What a relief to NOT have to go to hospital for treatment. That in itself is comforting. It's just Day 4 post radiation and I'm doing pretty well. Lots of excess mucous until today- haven't needed my spit cup at all! Pain is manageable (taking maybe 3 oxycodones a day) and getting lots of great nutrition. I cannot believe how much food I am consuming. I feel like a growing teenage boy. It's fun to put anything and everything in the VitaMix!
I've started to taper off of the steroid and doing great with the reduction of dosage.
Yesterday I was out gardening, grocery shopping and cleaning the house. I think the energy is from the steroids so we'll see if that continues as I am tapering off.
I'm in good spirits and the oncologist said that I'll see some nice health changes this first month. It'll then plateau for a bit but then start up again with noticeable changes. My plan is to keep in the feeding tube for awhile. We'll just have to see how I do...I am VERY hopeful. It's hard to truly heal when your body is being zapped w/radiation 5 days a week! I'm young and the oncologist said that I did an excellent job with the therapy. Feeling really good about moving forward!

@Kristen S... To avoid taking away from the original posting members questions, Ive moved your recent post to its own thread under the After Treatment Issues-Immediate section. It has been renamed "After Radiation treatment questions"

Diana Lynn, just read your post and I hope you are doing well. I too just finished treatment for a cancer on the side of my tongue. I had surgery in Feb and started radiation at the end of March and finished May 8. For the first 3 weeks you will probably have minimal side effects. Then it starts to get real. Everyone is different but I will share my story. There is no way I could have worked through this process, maybe the first 2-3 weeks if I had a desk job but not after that. The mucositis was the worst thing for me, I felt I was choking and it never went away even after gargling with salt water, it is still a problem weeks after I finished treatment. I was told coca cola helps too. Do not hesitate to ask for help with symptoms from your doctor or the nurses at the clinic, they will be your best resources. I did not have a feeding tube and I found it hard to keep up with my nutrition as time went on. I am lactose intolerant so the high calorie Boost was not an option for me and the plant based protein powder did not have enough calories even with added fruit and almond milk. But you really do need to get as much protein and calories as you can. I depended on lidocaine liquid and pain meds in order to somewhat comfortably eat and drink. Do not think you can get through this without pain meds. You will need non irritating toothpaste like Biotene and Aquaphor and Miaderm for your skin after treatments. It will be difficult but you will get through it. You will lose your taste buds, things will not taste good, some things will taste downright nasty (like chocolate ), just try to eat or drink what you can. I lost 30 pounds, most of that after treatment was finished. Even now, some taste buds have come back but food still has little to no flavor, it will take up to a year to find out how much will come back. Good luck and let us know how you are doing. If you have any questions you can send me a message any time.

Careful on the Biotene ... there are threads discussing this ... the old versions were good, the current ones not good, but new ones coming back out that should help again. (Read the thread, it's a long story. You can use the search bar to find it.)