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really scared now
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posted
about 18 months ago went to gp with white scaley and lumpy cheek infection gp did tests and found i was a diabetic and put mouth infection down to thrush. Now after several doses of anti viral drugs and no cure i was recommended to see a specialist at the local hospital (i think i should have been there 18 months ago). I had an appointment 9 days ago where the specialist stated i need a lip and cheek biopsy asap and also a panarax x ray of my jaws done at the time and biopsy's done 5 days ago. i have to go back in nine days for result. Despite asking what they thought it might be3 i was told they need the results for a diagnoses before they can say what treatment is needed. Though i am sure they might know what it is and it is what they are not saying that's really scaring me. I have looked at the internet and am convinced the results are not going to be good and i am so scard of the result appointment on the 3rd.
 
Posts: 3 | Location: suffolk | Registered: 23 September 2011Reply With QuoteReport This Post
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Hi John

You're right--you should have been sent to the local hospital sooner.

Be patient (no pun intended)--it takes as long as it takes to get test results. Your doctors might suspect what is wrong, but it really would be irresponsible of them to tell you and recommend a treatment regimen without knowing with a certainty.

For the time being, and for your own peace of mind, you might want to stop your internet diagnostic efforts. You don't need that stress at the moment.

When you go back for your results appointment, please don't go by yourself.

You're not alone in this, and please let us know how it turns out.

Julia


Howdilly doodilly, survivorinos!
 
Posts: 974 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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Hi John

The waiting for results really is the hardest thing, but hang on in there, it might not be as bad as you think!
As Julia says, you're not alone.
best wishes
Vicky
 
Posts: 120 | Location: cornwall | Registered: 05 August 2010Reply With QuoteReport This Post
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Just to let you know its been a very bad day got results today and i have advanced cancer of lip and left cheek was sent for a chest x ray and have to have an mri scan with in next two weeks then i will be referred to the N and N hospital for a meeting with their mdt team to discuss any treatments that might be possible. But i got the feeling that from the look of the doctor and his use of the words its advanced there will not be a lot they can do. I just wish my gp had sent me over so much sooner
 
Posts: 3 | Location: suffolk | Registered: 23 September 2011Reply With QuoteReport This Post
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Oh, John, I am so sorry for the way this turned out. I hope you were not alone when you got the news.

I'm certain that there's someone on the site who's been through what you're facing--the folks here are quite friendly and helpful.

Is there any disciplinary action you can take against your GP?

I'm sending you positive thoughts.

Julia


Howdilly doodilly, survivorinos!
 
Posts: 974 | Location: Hollywood on the Huron | Registered: 15 February 2008Reply With QuoteReport This Post
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John - I'm so sorry that you've had such bad news. I would urge you though, whatever they say to you at your hospital, that you get a 2nd opinion from a London hospital. You can do this on the NHS. (I actually got 2!). I recommend either UCL or the Royal Marsden. You might be a candidate for PDT which your local team will probably know very little about. The man to see is Mr Hopper at UCL and you can read all about it on the Killing Cancer website. (just do a search on google). Don't let your local team tell you you are not a suitable patient for PDT, make sure you get an opinion from Mr Hopper himself. My local hospital is a leader in the field of PDT for skin cancer, but they still were woefully ill informed about the potential it has for head and neck. As it turned out I wasn't a suitable patient for it, but not for the reasons that they said.
You might be able to take action against your GP. I had mistakes made by 2 x Ent consultants but didnt have a case against them for various flimsy reasons, however, it's worth looking in to but probably not at the moment, you've got enough on your plate.
Good luck and keep up informed.
Vicky
 
Posts: 120 | Location: cornwall | Registered: 05 August 2010Reply With QuoteReport This Post
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thank you for your advice I wasn't alone but it was still a shock. I am looking at London hospitals as I really want the best treatment and not sure the local hospital is up to it. Not sure what pdt is will look it up. Not sure going at my GP would achieve anything though I have booked an appointment to ask why i was not referred earlier and to ask if he could send a referral through to royal Marsden for a second opinion. would like advice from any one who has gone through a smiler experience though.
 
Posts: 3 | Location: suffolk | Registered: 23 September 2011Reply With QuoteReport This Post
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sending a hug from across the pond - wish i had more to offer!
 
Posts: 345 | Location: USA | Registered: 16 July 2008Reply With QuoteReport This Post
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So sorry to hear of your diagnosis John. Do everything you can, lots of good advice on here for you from these people. Try to stay positive, that's what I tell my friend who is a survivor, even when it's difficult. It's all we have, really, our outlook!
Best wishes to you, I hope you are able to find some great treatment.
 
Posts: 2 | Location: Kansas City, MO | Registered: 06 October 2011Reply With QuoteReport This Post
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