Hi Subiedoo,

It sounds like you have been through a lot with all this and I can understand what you say about it being entangled, and that you are still dealing with a lot of things.

I see that your appointment was yesterday, so I hope that it went OK.

Do remember we are always here whenever you may need it, even if it's just to write things down. I know that it can be difficult when those closest to you are worrying - sometimes it is helpful to talk to others who you may not know so well, but who can understand, such as those on this forum.

If ever you feel you'd like to talk things through regarding what you went through with your mum, it might be worth having a look at Cruse. They have lots of resources and a helpline, and also links to local support options.

I hope that it's not long for you to wait to find out more following your appointment, and in the meantime I hope that the forum can be helpful for you and that you get some more replies soon. If not, you can also search for other discussions (using the bar at the top of the page) and people to connect with.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thank you so much Ben.

I realise reading my message back that I just blurted all the sadness out which happens now & again. Some days I feel at peace with it all.

Cruse is a good shout, I did have 2 lots of private counselling but that was before I was diagnosed with dysplasia.

I read another persons post, seabreeze I think, and they made me feel more determined to be as brave as possible yesterday, thank you whoever you are ️

The biopsy went well, I took paracetamol and ibuprofen before my procedure, the Dr put in 3 injections, although I felt those I just counted and winced but felt nothing else, it was so much better than last time and I am so grateful for that.

For anyone else going for a biopsy that maybe anxious, make sure to let the team know beforehand, I did. They booked me in at 9am so I didn’t have to wait around and they gave me more injections, I didn’t have 3 last time, they talked to me in a calming manner throughout and I felt really cared for.

I have a 2-3 week wait for my results.

My husband and I are hoping for the best but I think we are both accepting of whatever comes.  

Cancer Research has always been my husband’s and I monthly charity donation but I never thought I would be helping myself.

Thank you for the support, it means so much.

Sorry just to add — I have been diagnosed with severe dysplasia / early invasive SCC and will be having surgery early February to remove it along with some healthy margins too.

Hi Makkie,

Thank you for your reply and positivity.

Yes I was informed my tongue surgery removed the dysplasia with clear margins back in 2022 but during my October 24 check up the consultant saw an area on my tongue that looked red and it was/is sore.

He thought it best to biopsy that section. I had the biopsy on 4th December. I was scheduled to get my biopsy results on the 17th December but that appointment was cancelled because my results hadn’t come back.

My results appointment is 28th January, this Tuesday, which has taken some time to get to but I have checked and they do have my results back now.

I am sorry to hear that you have dysplasia too, what surgery are you having in February?

I am sure you will have a great medical team working for you, they are amazingly skilled and everything crossed for you that you get a great result post op.

Happy to talk through anything if it helps leading up to surgery.

I joined the mouth cancer website group, I occasionally join in with the Monday night support group. A great bunch of people and very supportive.

Sending best wishes to you.

Hi Subiedoo,

Glad to hear your initial surgery went well. Hopefully it'll be positive news tomorrow, best of luck and please do let us know how it goes!

I think my surgery is similar (or even the same) as the one you had which is a wide local excision. I was supposed to have it on Saturday just gone but felt unwell so it had to be postponed. 

Thanks very much. I hope your appointment tomorrow goes well.

Take care

Hi,

Thanks for your good wishes, my biopsy was clear but the consultant asked me to go back in 8 weeks for a check up, then have a 12 week follow up. If all is ok reverting back to 6 monthly appointments.

My tongue is still sore so we shall see.

Re your forthcoming surgery, if you need to ask anything let me know.

sorry to hear you have been poorly.

This journey is certainly a rollercoaster ride.

All the best 

Glad to hear that your results were clear!

I've used difflam when I had a sore tongue, it helped. If you haven't tried it, I would recommend it.

Get well soon!

Thank you -- I am dreading it but my family are helping a lot.

Hi Makkie,

How are things going for you?

I know you said your surgery was early Feb so unsure if it’s taken place yet, if so rest up.

Thanks for the difflam details, I will get some of that.

Take care 

Hi Makkie,

How are things going for you?

I know you said your surgery was early Feb so unsure if it’s taken place yet, if so rest up.

Thanks for the difflam details, I will get some of that.

Take care 

Hi Subiedoo,

I had my surgery and unfortunately I have a lot of pain on my right hand side of face along with the ear. I am unable to swallow properly and trying to take fluids in.

I was discharged the next day but had to go back in via A&E which took 7 hours. Pain was too much.

Hope you are well.

Thanks

Hi Makkie, sounds unpleasant. Too early a discharge is such a false saving of resources, especially if have to go back through A&E.

Did  you have to be an in-patient again?

Hope pain easing.

I had biopsy in I think 4 discrete areas of what could be leukoplakia last Tuesday. Results awaited some time.....

Look after yourself, best wishes, 

Dave.

Hi Makkie,

Wow it’s been a year, how are you doing now?

best wishes,

Sue

Hi Dave,

How are things going for you?

Best wishes

Sue

Hi Sue, this came out of the blue! Oral "stuff" is fine. Prostate not so. Diagnosed recurrent and now Stage 4 advanced metastatic diagnosed last September. No curative treatment, delaying HT only. 

Now 77, I'll be calling it a day well before I'm 80. 

Hope you're in a better place.

Good luck, Dave 

Hi Sue,

Thanks for your message! I am better and speak normally. I’ve been on regular check ups and in my most recent check up (after 12 months!) they noticed a very small 2mm spot beside the surgical site so I am going to have a biopsy. 

Hoping it won’t be anything, if it is, will likely have to have it excised.

How are you?

Thanks 

Sorry for not responding earlier. Sorry to hear the position you’re in, I wish you the best Dave. 

Hi Dave,

Wow sorry to hear the prostate news and completely understand what you say about going forward.

I wish you as much joy as possible before that time comes.

Sending my best wishes to you and your wife.

Sue x

Hey Makkie,

So great to hear the speech is good and that you are on regular check ups.

I had my second tongue excision and ablation op yesterday and it couldn’t have gone better. 
I will get the results at my next appt, maybe 8 weeks but whatever it is I will deal with it.

Yes definitely sending positive vibes for the biopsy result and that the pesky 2mm spot is nothing to require further action.

Although after having my op yesterday I feel if another one is necessary then so be it.

Let us know how you get on.

Best wishes,

Sue

Hi Sue, thank you! 

It has been a while, I hope you’re ok after your operation. Best of luck with the recovery and I hope the results will be good news. 

Can I ask, did you also have your lymph nodes removed please? Or did they stick to removing the dysplasia from the tongue only?

Is there a reason why ablation was also recommended? As I thought for early stage it’s normally an excision of the dysplasia.

Wishing you the best x