Referral for tongue biopsy

Bloody hell, Gill. That must have been such a tough time to get through. Did your partner losing his speech come.as a terrible shock, or had you been prepared for the possibility in some way? 

Hiya.

No, it didn't come as a shock, to me anyway.

I'm pretty intuitive, and realistic, and saw what was on the cards months before H got his head out of the sand, inasmuch I knew he'd got cancer and told him so.

My continued nagging at him to see a doctor about his worsening hoarse voice paid no dividends - until one fateful Saturday evening when he told me he couldn't breathe.  Off to A and E and all systems go!

You're probably like me and research everything?  In some ways it's good as you're prepared, but you also scared the living hell out of yourself.

I'll tell you something.  When H and me were in your very early 'shoes', he was in a daze and I was in controlled panic.  It's natural and normal, but as time, and operations, passed us by, we kind of 'settled in' to our new routine.

I won't call it the 'new normal', what's remotely normal about someone inserting a silicone tube into a hole in her bloke's throat four times a day?!!  (Grins grimly.)

After all the visits to our second homes (four different hospitals) and being surrounded by droves of people all having some form of cancer, a kind of normality washes over.  And then gallows humour kicks in but that's another story...

Righto, I've banged on long enough, and you may have nodded off from boredom, but my Spidey senses detect you'll be seeing your twins off to uni, down the aisle and beyond.

All my very best and hang on to your humour.  It'll see you through all the crap.

Gill xx 

ScaredBrightonGuy said:

Just wanted to record being awake in the middle of the night, feeling really alone and scared. 

Really hate the feeling of waiting to see how bad and widespread my cancer may be. 

At vulnerable times like this, I don't feel mentally equipped to deal with it. This feels like a nightmare. 

Intrusive images of my children grieving really don't help. 

Hi

Hang on and have faith in your consultant telling you it's an early cancer. Your type of tongue cancer doesn't usually spread distantly though it is locally aggressive. Your medical team is on it. 

I know it's hard. At the beginning I knew I was going to die. I settled all my affairs, updated my will, left a tearful letter to my daughter who lives in Berlin; a letter I rewrote so many times I threw it away..... I manage the house ( ha ha what wives don't) my husband hadn't a clue about washing machines and paying bills...still doesn't. Once my life was sewn up and I knew he could manage I felt better.

That didn't stop me feeling cheated. There were things I wanted to do. I felt guilty that I would be a burden. My daughter's father died nearly twenty years ago. Her step dad would have looked after her but it's not the same, is it?

At my first oncology appointment my doctor sat me down and said he would cure me and all the rubbish stuff in my head went away...just like that. He took a year out of my life but he did.

This morning over six years later I sat outside in the early morning sunshine with dog and coffee and heard a cuckoo. 

Thank you Dani - that made me cry while strolling along Brighton seafront.

Yes, I am very much in that first phase you describe. 

I want to sort out my will.

I want to record videos for my sons to watch in future, if need be.

I want to use AI to preserve my voice, which now seems to be frighteningly yet wonderfully easy to do. 

But more than that, I want to live. 

I'm quite suggestible when it comes to health, and so am now hyper aware of my body. Every symptom seems like cancer that's spread. I'm noticing small skin changes that may have been there for years and I'm only just noticing them.

Oh, lovely stuff.

You mentioned in a previous post how this type of cancer "rarely" moves past the lymph nodes, or similar? I liked that. 

Once cancer spreads beyond the tongue, radiotherapy has to enter the picture, right?

Beesuit said:

At the beginning I knew I was going to die

 ScaredBrightonGuy 

That's one of the reasons I'm still here six years later. I know how that felt and want people to know that it's normal but it's largely not true

ScaredBrightonGuy said:

Once cancer spreads beyond the tongue, radiotherapy has to enter the picture, right?

Yes but surgery is the better cure. You'll only get RT if the surgery cannot clear margins

But you are ahead of yourself. rememberer my neighbour. Her tongue cancer was caused by Lichen Planus. She had a simple excision and that was it

ScaredBrightonGuy said:

that made me cry while strolling along Brighton seafront.

It's many years since I was in Brighton. I had friends in Kemptown and Hurstpierpoint. I remember visiting one time we had the most brilliant sunset. I lived in Teddington outside London at the time and friends watching international rugby at Twickenham said even there the sky was red. Something to do with Sahara dust or something. I shall see if I can find a photo. Quite spectacular.

Thanks Dani. And on the topic of lichen planus, here's a weird side thing - one that makes me extra glad for the anonymity afforded by this forum.

About a month ago, I went to a sexual health clinic for symptoms involving my genitals. The skin specialist was positive that these symptoms weren't cancer ("If I thought it was cancer, I'd do something about it right now"), but booked me in for a biopsy in July.

He said it could be lichen planus. When I showed my GP my alleged ulcer, I mentioned the sexual health issue and she said there could be a link.

Not sure what it all means, and the idea that the genital issue really is cancer is worrying me.

Someone suggested I could get the sexual health clinic to refer me to urology at Brighton hospital...

It's hugely unlikely that you are dealing with two STI cancers (Oropharyngeal cancer is considered an STI these days if it is down to HPV) but for your peace of mind get urology to look at it. You know it makes sense. If you don't you will just worry more. The likelihood is that your mind will be put at rest straightaway

Thanks Dani, you're right, will do.

I'm also worried (oh yes, Worry Number 858!) about how potential treatment I have will impact my ability to host my children at home.

I usually have them for 3 weekends each month. And so I'm wondering how (a) tongue surgery and/or (b) radiotherapy will negatively affect my ability to wrangle two six year olds - and for how long that will be the case. :(