Hi Everyone

Dizz_zieMember

Hi all,

In May last year I was diagnosed with stage iv SCC in the tongue (T4 N2b M0). I had a total glossectomy in August 2019, neck dissection (79 nodes removed), split mandible, 10 teeth removed, radical free form flap and a skin graft. I was 39 and told I would never speak again and that I would need a permanent trachie and permanent feeding tube.

I've had 33 fractions of radiotherapy, 2 chemo (cisplatin) and 12 immunotherapy (2 pre surgery and 10 post) and I lost 7 stone in weight.

13 months on I no longer have a feeding tube or PICC line, my trachie was removed 1 week after my surgery, I talk with a speech impediment and I can eat a roast dinner (I just need lashings of gravy and a lot of water). It was hard work, so much hard work. OC recovery is 100% a marathon.

9/27/209:50 AM

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PascoeMember

Wow. That’s the surgery i had scheduled. They put it on hold 2 days prior to my operation. Watch and wait. Now I have pea size lesion on my tongue which is extremely painful. I have an appointment on Friday at GSTT and am worried that the cancer is back

9/27/2012:41 PM

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Dizz_zieMember

How come they put it on hold? Have you had any other treatment?
You must be in terrible pain. Where do you live?

9/27/207:26 PM

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PascoeMember

They sent my results and scans to a professor in Europe who advised that the further surgery would be over treating me at that time.

The new lesion, well when I say new it has been there for about 2 months, is so very painful and appears to be growing in size. I have my appointment at Guys on Friday and am anticipating that they will request a biopsy and possibly a CT. It’s all very worrying tbh.

9/28/2011:52 AM

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NaomiMember

Wow ! Dizz. Zie . You have been through so much. I just joined this chat today since looking for other young tongue cancer sufferers. I was lucky and only needs partial glossectomy ...... radiotherapy is the pits isn’t it? It’s funny cos when I say what I can eat I say roast dinner!

9/30/201:59 PM

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Dizz_zieMember

Hi Naomi,
Welcome to the group. You're in the right place.
Roast dinners are the best though, and everyone can relate to them. Radiotherapy is awful, and so are the weeks afterwards. I've never felt so uncomfortable and annoyed at my own body as I did getting through all that. Well done for going through it all, it's such an achievement.

9/30/203:26 PM

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Dizz_zieMember

Hi Pascoe,
I'd be worried too. Have you anyone to go with you as support?

9/30/203:26 PM

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PascoeMember

Hi

Thank you for your reply. Unfortunately, no one is allowed in to the hospital with me at this time. At least I know what to expect as I have gone through it before. I am dreading the biopsy as I know I will be in more pain afterwards and none of the pain relief is helping