Hello to you all. I have been reading some of your stories for some time now and have finally decided that it was time to dive in. I am inspired by all the incredible stories of determination and hope.
I was diagnosed with two oral cancers in 2009, at the age of 46. Because of the early stages, T1 & T2, and the location of the lesions, it was decided to treat with radiation only. I had NO idea, really, what I was getting into. I am still finding out 3 years later. I read a post where someone referred to radiation as "the gift that keeps on giving" which I am finding out seems to be true. Anyway, it turned out that I was very sensitive to the radiation and since completion of the treatment, the tissue in my mouth is in a constant state of chaos. My saliva is pretty good, but I have ongoing sores that appear and disappear. Any advice out there on how to deal with the constant fear/anxiety that any one of these sores might be a recurrence?
I am currently a month+ away from my next follow up and am full of anxiety that a recent sore throat is an ominous sign.

Hi LBB! Welcome!

I was diagnosed on December 07, 2011 with Stage 1 Right Tongue SCC. Had 2 surgeries (partial glossectomy and Selective Neck Dissection).

You were treated with radiation only? Your both lesions were diagnosed at the same time?

I didn�t had radiation but on january had a sore for more than 3 weeks that made me crazy. Furtunately in was a "traction" healing area due to surgery. My doc said that I only need to get worried if it looks like an ulcer (hardened ou something).

Can you share more about your story?

Hi there, I'm from Toronto, (well Mississauga...) where we're you treated? I know radiation is one of the treatments for this but usually oral cancer - tongue, floor of mouth, gum, and soft palate - is treated first with surgery - then rads and chemo (if needed) -I was a T2 at diagnosis - my dr. had already booked the surgery with the plans of removing 40 lymph nodes - and resecting my tongue with a graft. One lymph node became cancerous between DX and surgery but it didn't matter as it was coming out. I then had 33 radiation with cisplatin. I'm 1 year out of surgery - almost 11 mos out of rads. Radiation wasn't a picnic by any means but I muddled through it. I'm still best friends with my water pik and manuka honey... I get the occasional sore but for the most part feel ok and it's gone in 3-4 days. But I know it's still early after treatment. Sorry you're still having trouble I find that if my mouth gets irritated its something I've eaten - generally I take a day or two off and use gentler choices, by staying away from acidic foods. Tomatoes, vinegars, anything with a rough texture (crispy fries etc..)

One thing I do find that helps is diet, make sure you're getting enough protein. (preferably non animal based) I generally have a big protein shake in the morning for breakfast. And have my vitamins etc. which helps with immune system and healing.

Sorry you're having such long lasting effects - I imagine I'll be in the same boat at some point - but the plus is you're 3 years out! Congrats! Ps we're the same age...

Thanks Braziliangirl!
Here is more of my story:
I had a history or canker sores over the course of the last decade, so it was no big deal when I had yet another one in October of 2008. By early 2009, when the canker had not resolved, I sought out an ENT who treated the area to no avail.
He took a small biopsy that showed at least SCC insitu and referred me for furhter investigation. That turned out to be the T2 lesion, which was located at the very back of the right side of my mouth (right soft palate and anterior tonsillar pillar)
While they were initially looking at the first lesion,they noticed a small bump under the right side of my tongue and they decided to biopsy that when they took the larger biopsy of the intial site. That second area turned out to be cancerous as well.
The Otolaryngologist didn't feel that there was a role for primary surgery given the early stages of both cancers and the extent of disfigurement that would result from primary surgery.
I don't really know what the average dosage of radiation that is given in these cases, but both the ENT and the Radiation Oncologist were absolutely confident that radiation only was the way to go.

Welcome to OCF, Lori! Its always nice to have another survivor join our ranks.

Sorry to hear you are still running into after effects at almost 3 years post rads. It really stinks that you still have mouth sores. Im sure they are quite painful and annoying. Wish I had something that would ease your mind. My advice is to keep yourself busy and try to rinse frequently with a mixture of warm water, 2 tsp baking soda and 2 tsp of salt. There is also a prescription Magic Mouthwash that you can get from your doctor to help numb your mouth to enable you to eat easier.

Hi Cheryl, I'm technically not from Toronto either (I live near Brantford), but was treated at Princess Margaret. I hear you about making gentler choices in terms of food, I can't really do anything acidic, or the least bit spicy, and vinegars are completely out for me now. I can eat tomatoes or apples if they are cooked.
Although I don't know exactly how deep the cancer lesions were exactly, I was told that the cancer was very superficial. I believe that is the reason they did not think surgery would be needed. They did take a rather large biopsy of the tongue lesion but I still have the bulk of the tongue.
The radiation was VERY difficult for me, although I managed to keep my weight up during radiation thus avoiding the dreaded "feeding tube". I did spend a great deal of my spare time throwing up....thankfully, I have an incredible husband who was pretty much by my side all the way through it, and will continue to be no matter what happens.
I am very happy for you that you seem to be doing well.
Thank You for the great advice...It is funny that sometimes you need to hear what you already know from someone else, like it somehow validates it. I am just frustrated because I have not really been able to have my whole mouth feel good at any point in the last three years. That is as it is, I guess. Now, please tell me more of you story. Where did you receive treatment? How much of you tongue did they take and how are you doing with eating now? Did you have a lot of issues with eating and swallowing?
I LOVE hearing about all the successful outcomes here. It keeps me looking forward and hopeful!

Thank You, Christine, for you words of welcome. I have not been here long but long enough to run across your story and know that you are clearly an OCF "Superstar".
Your story is truly inspirational. Thank You for being so open about your journey!
I have not really thought about rinsing my mouth that way since I finished radiation, but I will try that again. Thank You for the reminder.
I know Magic Mouthwash well, and dislike it about as much as I do the sores. I find that it takes whatever small pleasure I still do get from food away. I do know that is an option if things do not improve, but right now, I am not in danger of losing my ability to eat....and for that I am truly thankful.

Hi Lori...

I was diagnosed with T1N0M0. Fortunately i didnt got radiation, just surgery - one for the mouth and another for the neck.

Im still speaking a bit strange, but eating perfectly normal. Able to eat anything i want, fortunately. The only thing that bothers me is that i cant stick my tongue all over my mouthnsince i had primary closure. But fortunately my tongue is almost preserved.

My neck nodes were all free, which made me so happy. My tumour was 0,7 x 0,5 x 0,6 depth... But i lost about 2x3cm of my tongue.

Did u had any risk factors? I had none of them...

Hi Lori... Wow! I'm surprised they gave you rads and chemo first. I had my surgery with dr. Johnathan Irish at PMH (he's head dude there) as well. he does a special surgery where he can see the cancer in real time as he's cutting. he was seriously considering not giving me rads and chemo because he was petty certain he got it all. He removed 1/3 of my tongue it was rebuilt by a dr. Goldstein in the same surgery he did a fantastic job. My tumor was 2.4 x 1.4 cm - They decided to add rads and chemo because I had perineural involvement and ECE of my node. Both him and the rads guy were on the fence but I wanted this treated aggressively so they went ahead with it.
I had a tube but couldn't tolerate the feeds - so I sucked it up and chugged ensure. I'm doing fine right now, hopefully things stay that way - you never know with this disease. Eating is fine - some acidic and spicy foods irritate me but I'm not really restricted I just take them minimally. I don't eat meat - so that's not an issue and I've given up bread because I don't do white flour or sugar any more, I'll occasionally have a multigrain wrap or multigrain bread but rarely.
Other than that I pretty much eat what I want, but I also do physio, lymphatic massage and acupuncture it's all helped with the healing.

Branford must have been a big drive, but you got treatment at a great hospital. My rads guy was dr. Cho.



Feel better... So glad your so far out! It's awesome.

Hi Lori - So glad you found this place and also that you found other "Canucks" here. I lived in Quebec (next door to Ontario) for a couple of years and still have friends there. The only thing I would add to the good suggestions above is about Magic Mouthwash. My son used it and had good results with it but what happened with him is that he noticed after a while it was not working as well so he went to something over-the-county that worked very well (recommended by the pharmacist). When the second "formula" quit working he went back to the Magic Mouthwash and found it provided relief again! Keep in touch and let us know how you are doing.