I Think I Have Tongue Cancer.

Ingrid K said:

too much already

Gavin

you have a LOT more patience than I would have.  I would be burning up the phone lines, and might have even paid them an inperson visit by now.

There is no good reason to add to a patient's anxiety by making the wait so much longer than it has to be.

Good Luck and hopefully you will hear something soon.

 

Thanks all for your on going concern, advice and tips.

Overall I am feeling relatively calm now. Many of the symptoms I had when I first started posting here have eased. I've even started putting weight back on in the past couple of days. I'm convinced most of my symptoms were down to anxiety and stress.

Looking back now I'm just astonished at the way I worked myself up during the weekend before the biopsy. I can't believe that was actually me that wrote that original post. :O

I'm fairly relaxed now. If I have cancer I will hear no later than next week so for now I'm happy to wait and enjoy one final "pre cancer" weekend with my mum and dad.

I guess theres also an aspect of "ignorance is bliss" going on. I don't want to have to face the reality of cancer until I have to and I certainly don't want my parents to have to face that reality until they have to. So a couple more days won't make much difference.

All will revealed one way or another soon enough...

GavinP said:

Thanks Billie

I guess I'm used to how the NHS works, so delays are not a surprise.

One thing I've not said is that I'm amazed just how bad my tongue had been feeling (with the original lesion) Because it had slowly creapt up on me over five years or more I hadn't realised how bad it had got in terms of numbness and feeling weirdly leathery.

Now that much of the thickened area has been taken away it just feels like normal tongue again and clearly how it was before had become very abnormal.

And still no news from the hospital (thats the NHS for you - They really do think they can leave you hanging around for weeks waiting to find out whether or not you have cancer)

I'm taking it as a good sign that I've heard nothing (my radiologist friend thinks I have nothing to worry about now) but of course, theres still that nagging doubt in my mind.

I think I'm going to ring the hospital on Monday (will be three weeks since the biopsy) if no copy of the results turns up in Monday's post.

Meantime, I continue to feel well, have gained weight, look much better and am getting on with my life a lot better. No new areas of leukoplakia have appeared, which I'm also taking as a good sign.

Will let you all know when I have news.

fishmanpa said:

Patience

I have to say, you have more patience than anyone I know. The ENT I went to initially examined me, looked me in the eye and said it was cancer. He didn't know what type but he had seen enough to know it was. I had a fine needle bipsiy done to confirm and diagnose on November 21st of last year. I had my results by the 30th. During those 9 days I was a wreck! My appointment would have been sooner if not for the Thanksgiving holiday. I know I would have been at the lab personally if I had to wait more than I did.

I don't know how you've gone 3 weeks without breaking the walls down at the lab! Sure hope you get the news and it's positive. I think you're right though, by now, if it was serious, you would have heard something. Good luck with everything. Let us know when you find out.

"T"

I don't think I'm a particularly patient person, I'm just used to the snails pace that the NHS runs at.

I've had lots of paperwork over the last few weeks. Appointments. Confirmation of appointments. Cancealled and remade appointments. A copy of a letter from the doctor I saw on initial assesment to my dentist (interestingly the doctors initial diagnosis was two humogenous areas of leukoplakia without any obvious lymphatic swelling) However, the one thing I havent had is the one thing I actually want - To know whether I have cancer or not!

You can see why the UK has such abysmal cancer survival rates compared to the rest of the western world can't you?

GavinP said:

LOL!

I don't think I'm a particularly patient person, I'm just used to the snails pace that the NHS runs at.

I've had lots of paperwork over the last few weeks. Appointments. Confirmation of appointments. Cancealled and remade appointments. A copy of a letter from the doctor I saw on initial assesment to my dentist (interestingly the doctors initial diagnosis was two humogenous areas of leukoplakia without any obvious lymphatic swelling) However, the one thing I havent had is the one thing I actually want - To know whether I have cancer or not!

You can see why the UK has such abysmal cancer survival rates compared to the rest of the western world can't you?

Hi all,

Sorry I've been away for such a long time. I lost my internet connection for a while.

Anyway, I got my answer to the biopsy results and I don't have cancer at the moment.

However, I do have homogenous, idiopathic, leukplakia with cell abnormailty that could lead to cancerous potential. I'm going to have laser surgery on April 30th to remove the patch and the doctor is hopeful this should resolve the problem.

Overall I don't think its too bad an outcome?

Thanks for all you help, advice, time and patience. When I read some of threads on here I feel kind of ashamed at myself now for the state I worked myself in to given that I don't even have cancer, but you guys certainly made this whole process easier for me to deal with and for that I'll always be eternally grateful.

I'll keep you updated on my progress, if thats OK.

Grandmax4 said:

I'm in Ohio

spring is taking it's sweet time getting here too, thanks for letting us know who and where you are..no wonder you were in a twist, your voice is your living..continued blessings

Hi all,

Well, I went into hospital on April 30th and had the laser excision of the patch of leukoplakia.

Everything went well. They excised virtually the whole of the right side and floor of my oral tongue from the back (near the large taste buds) through to the tip - Much more extensive than I thought it would be, but I'm guessing a lot of what they've done will be precautionary?

Was told that the first biopsy showed "Moderate dysplasia" so things were indeed getting really quite serious and I was well on my way to oral cancer - Get the feeling I've had a very luckey escape...

Am now home recovering from the operation (Only had to stay in hospital overnight which was good) Obviously very sore and having problems eating and speaking, but overall it's not too bad. I've certainly had far worse medical issues over the years in terms of pain. Having to use two different mouthwashes, which isn't much fun, but given the alternative treatment I could be facing right now it;s not too bad.

Everything they excised has been sent for biopsy, so I;m once again waiting around for biopsy results. Obviously this one is far more extensive than the first one, given it covers vurtially the entire right hand side and floor of my tongue, so I I suspect this will give the definative answer as to whether any of the cells did actually become cancerous?

Have been given a follow up appointment for August 1st, but obviously I'll be in quicker if carcinoma is found in the new biopsy. Overall though, I'm feeling pretty positive and thinking I may, just may have gotten away with it.

Thanks again all. You've been great. Will keep you all updated on my progress.

GavinP said:

Thanks guys...

Billie, nobody has ever used "carcinioma in situ" and when I asked my specialist out right when he gave me the first biopsy results "So I DON'T have cancer?" he said "No. It's Pre-Cancerous"

However, we who go through this know its a very fine line between moderate/severe dysplasia and carcinoma in situ, so they could well find some cancerous cells on this second biopsy. Wouldn't be at all surprised.

Sorry you couldn't get to my YouTube page. I've actually got a website that I upload the videos through to;

[Removed Link]

If you play the video you'll see (and hear) who you've been speaking with these past months.

Have just edited one of my old post's.

Didn't realise it would push the thread back to page one.

Sorry all.

Hope everyone is OK?

I don't have anything to report. Still waiting to go back to hospital on August 1st for post op follow up appointment. Will let you all know what happens when I've been seen.

Tongue has NOT healed all that well, so I'm a bit nervous about what doc will say, tbh.