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Author Topic: Oral Cancer  (Read 10835 times)

getting_old

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Oral Cancer
« on: November 25, 2020, 12:26:24 AM »

I just had an emergency biopsy on a lump in my mouth. Doctor has said he's almost certain it will confirm oral cancer then I'll be referred to a specialist.
I'm absolutely terrified and will need to go to consultations alone. Its moving so fast  :'( 
No idea what I should be asking or planning.
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CLKD

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Re: Oral Cancer
« Reply #1 on: November 25, 2020, 08:36:18 AM »

Oh I'm so sorry!  Make a list of your queries.  Where abouts is the lesion?

MayB contact AgeUK to see if they have a buddy system i.e. someone who can go with you.  Do ring the Department and explain that you won't be accompanied and that you will require a Nurse to be present - that's a right for patients anyway - and how frightened you are.  Do you see a Dentist on a regular basis, they are trained to pick up oral problems.

 :foryou:
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Changes can be scarey, even when we want them!

Taz2

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Re: Oral Cancer
« Reply #2 on: November 25, 2020, 08:43:06 AM »

It's understandable that you are worried but try to concentrate on the doctor saying "almost certain" as nothing is definite yet.

It is difficult at this time of Covid having to go to consultations unaccompanied but I'm sure you will find the staff reassuring and kind. It will help to take something with you to makes notes on - some hospitals are allowing you to record consultations I believe so that you can play it back and listen to the information you have been given. It will be worth asking.

Any idea when you will get the result?

Taz x  :hug:
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getting_old

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Re: Oral Cancer
« Reply #3 on: November 25, 2020, 11:46:42 PM »

Thank you so much for the suggestions. I need to go to the appointments alone because of Covid  :'(
Everything is so new that tbh I really don't know what to ask.
There's so much going around my head and I didn't sleep last night. The doctor mentioned x-rays or scans to see if it's spread, and surgery to remove the lump and some of my jaw bone. I don't think he knows exactly and it will probably depend on the specialist, and obviously whether or not it's spread.
I've had the lump for a month or two but it wasn't painful and when I saw the hygeinist in August she didn't think there was anything to worry about.
I'm sorry, I'm all over the place.
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groundhog

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Re: Oral Cancer
« Reply #4 on: November 25, 2020, 11:54:06 PM »

Hi. I've recorded consultations before with my urologist so I can take all of it in later. Ask them to write down any key points and words you don't understand. There should always be a specialist nurse in the room too and her number to contact if you need to ask anything or you're worried. Macmillan have a phone line too. The staff in oncology are second to none.I speak from experience. If you can have someone with you at future appts it will help to have another pair of ears. The hospital may well send you a letter containing everything you've discussed and their findings in detail. Addenbrookes does this for me and it's really helpful.Don't Google!  ;) Whatever happens you can manage it and you will be ALRIGHT! :-* :-*

That’s very good advice especially as we have to go to consultations alone .  It’s quite usual for mind to go blank and forget what was said.  I like the idea of asking consultant to write pertinent points down - I do notice they do often send a letter these days to confirm what was said, helpful in many ways and protects from crossed wires,
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groundhog

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Re: Oral Cancer
« Reply #5 on: November 26, 2020, 12:04:26 AM »

Thank you so much for the suggestions. I need to go to the appointments alone because of Covid  :'(
Everything is so new that tbh I really don't know what to ask.
There's so much going around my head and I didn't sleep last night. The doctor mentioned x-rays or scans to see if it's spread, and surgery to remove the lump and some of my jaw bone. I don't think he knows exactly and it will probably depend on the specialist, and obviously whether or not it's spread.
I've had the lump for a month or two but it wasn't painful and when I saw the hygeinist in August she didn't think there was anything to worry about.
I'm sorry, I'm all over the place.
Hi getting old, I’m so sorry you are going through this.  The stress of just awful. The mind racing and worrying is unbearable.  The fear of what MAY happen overwhelming.  I know it’s so so hard but try and find some way of not going to these places as it helps nothing and just makes things worse,  don’t google.  I call google Dr Death now as when I googled my condition, it sounded like a death sentence as they only mention worse case scenarios.
My heart goes out to you but remember this is a new problem and IF it is what your GP is saying ( quite  prematurely and very alarming for you IMO) then they are on it xx
Keep posting if it helps you, I posted everyday when I was going through my nightmare and it helps to talk it through.  Lot of ladies on here been through so much , oh my goodness, and they are a wealth of knowledge and have an abundance of kindness.
Xxx
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CLKD

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Re: Oral Cancer
« Reply #6 on: November 26, 2020, 08:09:54 AM »

Have U been told that you need to be alone?  That in my opinion is at this stage of C-19 inhumane.  I would ask my GP 2 ring the Dept. to make sure that you will be met by an appropriate Nurse - Hospitals are after all public places, paid for by Taxes. 
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Changes can be scarey, even when we want them!

Taz2

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Re: Oral Cancer
« Reply #7 on: November 26, 2020, 08:53:02 AM »

Have U been told that you need to be alone?  That in my opinion is at this stage of C-19 inhumane.  I would ask my GP 2 ring the Dept. to make sure that you will be met by an appropriate Nurse - Hospitals are after all public places, paid for by Taxes.

If you attend a hospital appointment or visit A&E at the moment you are not allowed anyone with you unless you need a carer. If you go in for an op you are also not allowed anyone with you or any visitors. This is to cut down the covid transmission risks.You are met by a member of the department you are visiting.

Taz x
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CLKD

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Re: Oral Cancer
« Reply #8 on: November 26, 2020, 10:30:34 AM »

Apparently.  What happened to humanity and the Hypocratic Oath.  By now each Hospital should have dedicated non-clinical staff to meet and greet .......... gowned up to offer support and assistance. 
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Jeepers

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Re: Oral Cancer
« Reply #9 on: November 26, 2020, 02:03:29 PM »

Hi getting_old

Firstly, I am really sorry to hear that you are going through such a worrying time, it must be so very difficult.

My partner is a dentist, and his brother was a maxillofacial surgeon, until he retired recently (slightly differrent to oral, I know).  I spoke to my partner about your post, and he said "I'm really surprised that the GP said that, it must be a heck of a lump for him to be so sure".  He also said that the most serious cancers tent to present as ulceration on the side of the tongue or the floor of the mouth.

So, as Taz says, nothing is definite yet, and the GP could very possibly be wrong.

Sending you hugs

Jeepers xx
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getting_old

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Re: Oral Cancer
« Reply #10 on: November 26, 2020, 06:19:40 PM »

Thank you everyone. I'm sorry that I'm so erratic. I've not slept for 3 nights now, and wasn't sleeping that well before because I knew the biopsy was coming. I do appreciate everyone's comments, and keep telling myself that I'm jumping the gun, however I want to get things sorted in case I do have to start treatment. At least it's keeping me occupied and distracting me during the day.

I have to confess to taking a few looks at Dr Google. That said it does look like there are many other things that the lump could be, but I just don't want to get my hopes up only to have them smashed down.

CLKD I had to go to the biopsy alone because of Covid. There was an older gentleman there with his wife looking after him, and I wouldn't want to take anyone along if it raised either their risk or that of others. I will definitely ask about having a nurse or recording the conversation. I think my biggest worry is not asking the right questions because I don't know what they are.
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CLKD

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Re: Oral Cancer
« Reply #11 on: November 26, 2020, 09:21:37 PM »

I would want to know :  biopsy result. If negative less of a worry

If it is suspect then what is their treatment suggestion/s.  ? surgery followed by ?  how soon is intervention necessary and which hospital?  Which type of surgeon ......

Wait and watch?

Will any treatment suggested by affected by C-19 and if so why? and if so, is there an alternative hospital?
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getting_old

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Re: Oral Cancer
« Reply #12 on: November 30, 2020, 12:39:38 AM »

Again, thank you so much for the comments. I'm sorry. I realise I wasn't clear in what I said. I'm still not sleeping and having trouble thinking straight.

When I saw the hygienist the lump wasn't painful however the reason I got it looked at was because it became very painful and I was getting really bad earache too. The doctor said it was a sore and after trying various treatments and it not healing after 8 weeks they did the biopsy. The doctor's thinking is because it's not healed after so long then it's got to be cancer. When I mentioned the pain they said that pain / no pain didn't mean it was or wasn't cancer. 
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CLKD

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Re: Oral Cancer
« Reply #13 on: November 30, 2020, 09:38:37 AM »

Dr thinking aloud, forgetting what he is ......... or did you ask outright?

Let us know how you get on.
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Changes can be scarey, even when we want them!

getting_old

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Re: Oral Cancer
« Reply #14 on: November 30, 2020, 07:53:23 PM »

Dr thinking aloud, forgetting what he is ......... or did you ask outright?

Let us know how you get on.

I asked outright, and they said it was extremely likely to be cancer based on how it looked and the fact that it hadn't healed after so long. I said that it had been really painful until a day or so before the biopsy, then there was hadly any pain and they said that that didn't mean it wasn't cancer. Since the biopsy it's been incredibly painful  :'(
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