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Advice before 3rd 6monthly check up #200405
09-16-2020 04:09 PM
09-16-2020 04:09 PM
Joined: Sep 2020
Posts: 3
J
Johnnyboy.1 Offline OP
Member
Johnnyboy.1  Offline OP
Member
J

Joined: Sep 2020
Posts: 3
Hi
Just joined the group, I have keratosis with mild dysplasia on floor of mouth. The area has gotten bigger
But no change in surface coloration or texture.
I’d hoped it wouldn't spread as I stopped smoking ( everything) the day I found out .
I’m shiteing myself ( Scottish for scared)
Thanks, any reassurance would help. 🙏


John mcniven
Re: Advice before 3rd 6monthly check up [Re: Johnnyboy.1] #200407
09-17-2020 08:21 AM
09-17-2020 08:21 AM
Joined: Jun 2019
Posts: 196
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 196
Hi Johnny

Welcome to the group. I'm sorry about your diagnosis. Do you know what's next for you, or are you waiting for your next appointment?

BTW I'm UK based too, although a little further South wink


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Advice before 3rd 6monthly check up [Re: Johnnyboy.1] #200408
09-17-2020 08:28 AM
09-17-2020 08:28 AM
Joined: Aug 2020
Posts: 10
Huntington Beach, CA
N
Nels Offline
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Nels  Offline
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N

Joined: Aug 2020
Posts: 10
Huntington Beach, CA
Hi Johnnyboy,

Welcome to the group. You will find many knowledgeable and helpful people here. I am new as well and have learned a lot since joining.

Sorry to hear it has increased in size. By the title of your thread, it sounds like you are getting regularly checkups by an doctor which is excellent. Have you had a biopsy recently? Trust your body, take pictures week to week or month to month to show the progression to your medical team. Take notes and keep a journal of questions. Insist on a biopsy.

The good news is if you catch it early, the treatment and prognosis is much better. I caught mine late, stage IV SCC on my tongue, but they were still able to treat me thru surgery and radiation. I am now back to full function (work and exercise) after about 5 months. Some foods are still hard to eat but that will improve.

So stay on top if it and know that is good treatment options no matter what happens and many people here to help and support you no matter what. Hang in there and keep us up to date.

Best,
Nels


OCC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Advice before 3rd 6monthly check up [Re: Dizz_zzey] #200409
09-18-2020 06:25 AM
09-18-2020 06:25 AM
Joined: Sep 2020
Posts: 3
J
Johnnyboy.1 Offline OP
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Johnnyboy.1  Offline OP
Member
J

Joined: Sep 2020
Posts: 3
Thanks for reply
Today at 0345 .... fingers crossed eh??


John mcniven
Re: Advice before 3rd 6monthly check up [Re: Nels] #200410
09-18-2020 06:29 AM
09-18-2020 06:29 AM
Joined: Sep 2020
Posts: 3
J
Johnnyboy.1 Offline OP
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Johnnyboy.1  Offline OP
Member
J

Joined: Sep 2020
Posts: 3
Had a biopsy the day it was discovered when I went to get wisdom teeth checked for pre op... and back Benin so that was 18 months ago
Today will be my third appointment check up.
Been taking photos regularly, stopped smoking the day I was told which has been great for me and also made me stop smoking weed.
The area has spread a bit , but will see today.
Thanks for the reply.
Means a lot
🙏


John mcniven

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