Oral Cancer

[Boland]

Hi all,
I was recently diagnosed with severe oral dysphasia/oral carcinoma in situ stage 0 of the tongue following a biopsy. I first felt discomfort in November of last year (2022). I'm meeting a surgeon this Thursday 7th April. I'm just wondering if anyone has experienced this. Also, I'd really like the surgeon to remove the lesion ASAP as the anxiety is preventing me from sleeping. How soon can I expect them to remove it? I'm afraid that if they leave it too long it might spread. Any advice or suggestions would be much appreciated.

So sorry op this must be incredibly stressful. Send an econsult to your GP, ask for a short course of sleeping meds, completely reasonable in the circumstances.

I'd guess they will plan to remove it asap. Obviously you'll find out on Thursday, reassuring for you that it is stage 0 so caught very early. Best of luck .

Thanks so much for replying Janiie,
I'm going to try magnesium supplements for the sleep issue. I'm a bit nervous when it comes to sleep medication. Just want the whole thing to be over as soon as possible. I'm hoping it's just a health blip and that it'll be done and dusted before the summer. I suppose I'm just in shock at the moment. I don't drink or smoke so I never expected a cancer diagnosis.

I’m so sorry to hear this. Incase you are looking information up it’s not oral dysphasia as that’s a language disorder. Do you mean dysphagia ?- swallowing difficulties. Treatment should be to remove it asap like you said and then prognosis is good as it’s stage 0. I hope it all goes well for you.

I have a friend who has just gone through this. She had a cancerous lesion on her tongue. She had a piece of her tongue removed and the lymph nodes on that side of her neck.
She is doing really well and doesn't need radiotherapy or any further treatment.
Her neck is a bit sore but she's getting better every day.
I wish you well OP 💐

@CoralDaffodil

I’m so sorry to hear this. Incase you are looking information up it’s not oral dysphasia as that’s a language disorder. Do you mean dysphagia ?- swallowing difficulties. Treatment should be to remove it asap like you said and then prognosis is good as it’s stage 0. I hope it all goes well for you.

I expect she means dysplasia.

Dear OP it's difficult to guess how long you'll have to wait but would have thought within the next 2-3 weeks. With a carcinoma in situ, your outlook is very good so please try not to stress too much.

Thanks so much for replying guys. I really appreciate it. I meant to write oral dysplasia. Sorry about that. I'll keep you posted on what happens next after my appointment on Thursday. Fingers crossed the whole thing is done and dusted quickly. I have two little boys, 3 and 7 to take care of so this health situation is a bit worrisome.

Just keep telling yourself it's stage 0 so may be removed by the most minor of procedures. I don't want to minimise but it's abnormal cells in the surface layers it may well be sorted quickly albeit with obvious follow up and screening.

I know it's a worry with young dc. I had major surgery when ours were that age and I thought they'd be scarred for life with all the upset and disruption but they have no recollection of it all. Good luck for Thurs.

I hope your appointment goes well tomorrow. Thinking of you. X

Hi guys,
Just following up on the oral cancer appointment. I met the surgeon at the dental hospital last Thursday. He was very nice. The operation will be happening in the the next few weeks. I should receive a letter this week or next week with the date. They'll take the cancerous tissue and some healthy tissue and analyze it. I'll get the results two weeks after that. They also said they discovered (from a blood test I had during the initial consultation) that my ferritin levels are quite low and that I need to take a supplement. This makes a lot of sense as I've been completely exhausted for the last few months. Have any of you guys ever had low ferritin? The doctor recommended Spatone to address the deficiency. They also identified a candida problem from the first biopsy and said it's related to the low ferritin issue though they didn't explain exactly how. Anyway, things seem to be moving in the right direction. Thanks again so much for the support.

Hope it all goes ok op. Keep us posted.

I take spatone and it keeps my ferritin up but its about 8 quid for a months supply on amazon. Just send an econsult to your gp and ask for a 3m supply of ferrous fumarate. If the candida is in your mouth ask for a prescription of nystan to clear it up before your surgery. It's syrup you take 4 times day, tastes pleasant!

Good luck .

Thanks Janiie,
I'll ask my GP about those.

Hello,
Just wanted to say I had surgery today. They removed the cancerous tissue and a margin of healthy tissue. I have to wait 3 weeks for the results. Fingers crossed this will be the end of my run in with cancer. By the way, I mentioned I'd been having trouble sleeping. I've recently started taking magnesium orally and applying it topically at night and I think it's helping, in case anyone else here is dealing with insomnia.

Glad it went well and it sounds very positive if they managed clear margins. I know the next 3 weeks will be extremely tough, there's no getting away from the stress and worry just do a day at a time and try to plan things fo keep you busy if possible. Hope pain isn't too much of an issue, I know anything like oral ulcers can be bad enough so I can imagine it is very sore. Lots of ice cream and frozen smoothies maybe!
Best wishes .

Hi all. I'll be going back to the oral surgeon next week to get the results following the removal of the lesion. It seems to be healing well so fingers crossed this will be the end of it. I was just wondering if any of you had any advice on how to deal with another issue. There will be a family get-together this weekend and I want to be there but I'm dreading being around my mother-in-law, especially if I end up being left alone with her. I'm feeling a bit vulnerable at the moment with what's been going on with my health. She has a habit of poking at me, making little negative comments. For example, she gave me a hard time when I got pregnant at the grand old age of 41. Another example would be her callous remark when my father was dying that his death was just a "blip." Her latest thing she likes to say is that I must have been very spoilt as a child as I am the youngest in my family. I don't like to respond to her as I don't want to give her the satisfaction of getting a rise out of me, although on occasion I have stood up for myself. It's just that at the moment I'm feeling anxious and a bit vulnerable and not really up to dealing with her. Any suggestions as to how I can attend the gathering, remain civil but not allow her to bully me.

Can your husband help re mil?

This is going to sound really weird. But imagine a forcefield around you that is protecting you from everything she says. Another thing is making yourself laugh or smile when she says anything rude or hurtful. It really confuses people when they're trying to be mean to you!
But also, yes. Can you tell your husband how you're feeling and would he stick by your side and defend you from her?

Thanks for replying. I'll give it a go. I've asked my husband to stay by my side but the men usually end up heading off to chat about sport etc. leaving the women to do our thing.

This is related to her own low self esteem.
She needs to make herself feel bigger and better by picking on you.
Once you understand that you can pity her in a way.
Think of a neutral, non leading reply to all these remarks.
Dont argue/ explain or defend yourself, she will get fuel from it.
I used to reply with " interesting"said in a flat voice and walk away.
They would just stand there , gaping 😂

Ps sorry to hear about your health issues and all the best

Glad you're feeling better. Your mil sounds horrible, a 'blip' when your df died?! Sorry for your loss .

Just keep your kids close by, any attempt at your mil to engage (unless with genuine pleasantries obviously) just change the subject and turn your attention to your dc.

This is the last thing you need and I absolutely understand when feeling crap after surgery and awaiting follow up opas insensitive prats can just be the last straw so don't give her the power, keep her at arms length and talk to others. Good luck.

'I used to reply with " interesting"said in a flat voice and walk away'

Great plan! I like it

Thanks for all the kind advice. I'm afraid I actually chickened out and didn't go to the family get-together in the end. I went back to the Dental Hospital yesterday to get the results following oral surgery. They said that they had removed the severe dysplasia and a margin of tissue around it. They divided the margin into 4 sections. Two of the margins were found to have moderate dysplasia and two have mild dysplasia. I suppose it's good that they removed the severe dysplasia, but I had hoped that the margins would be completely normal. I have to go back every three months to be checked. I'm not sure how to feel about the result.

I know this is an old thread but I was wondering how you are doing?

I have just been diagnosed with the same and hearing of your own experience I wanted to ask how everything is for you now?