Hi,
Saw consultant today re my iodine scan results and said that you haven't got a lingual thyroid so have to have a biopsy done in two different places in two to three weeks time- i know one's on my tongue....don't know where the other place is??? I didn't ask him because my mind just went blank. I suppose In some ways it's better because I would only worry more.
He said he will be doing it under anaesthetic so will be asleep for it and will be a day case.
I'm still worried about having it done and how painful it will be afterwards.
Can anybody recommend any painkillers I can take for it??
Thanks for reading,
David.

David
Your consultant seems to be well on top of things and seems to be doing all the right things. Do you go to the appointments on your own? you maybe need to take someone with you then they can ask the questions when your mind goes blank. Something I am all too aware of!
If you have any questions afterwards phone the consultants secretary and ask her to get them. My consultant has phoned me a couple of times when I have asked questions. You seem to be so caring when you answer posts on this site maybe you need some tlc.
As regards the pain killers I have found that when I have been into hospital they always see to be ahead of the game and send you away with painkillers suitable for your needs.
Hope this helps
Take care

Hi there,
Thanks for your kind reply...it really helps doesn't it. I don't know why I went on my own.I suppose it's because I don't like worrying family etc.... I know it isn't a good idea but until I know for definite I especially don't want my parents worrying about me unless it is bad news and then I'll have no choice.
I have told a few friends about going for the tests and they've been ringing me which has helped.
One good thing I suppose is he can't think it's too serious or I think he would have done the biopsy earlier than two to three weeks.
I really like him as well....I feel confident in his abilities which I think is important isn't it.
Will keep you updated with the next chapter and hope everybody is ok and fighting strong.
Best Wishes to you all,

David.

I know what you mean when you say you do not want to worry your parents, Mine are both in their seventies, my mother has smoked like a trooper (is that the right saying) since she was 20 and has not really had an illness in her life, my dad is quiet fit and well also. When i told the tests I was having on my neck lump they said I looked too well to be ill, and as I didnt smoke, no history of cancer in the family and I looked after myself it wouldnt turn out to be cancer. When I went to see them after the diagnosis my dad didnt take it at all well the remote control was flung with some force at the TV. He has calmed down now and has a great attitude for me telling me he wont worry until there is something to worry about and he is sure I will get through this. He takes me to my radiotherapy appointments which is a little embarrassing at times as it is assumed he is the patient and not me.
David make sure your parents do not find out from other sources of your tests. Take a friend with you next time, you say you have great faith in your consultant and sometimes this is half the battle, I know its easier said than done but stay positive. (I say this but I have really strange mood swings really ok one minute quiet down the next) But I am hoping time will be a healer and I will look back on this rough time in years to come.

I'm already on anti depressants and anxiety and blood pressure tablets on top of all this.
I feel quite depressed and can feel my mood lowering.I just sit in front of the computer all night and can't be bothered speaking to my friends.
I need to snap out of it but can't seem to find my way out of the black hole that I'm in at the moment.
I've got OCD as well which isn't helping.I'm seeing my psychologist tomorrow but there's not much he can do is there?
Sorry to be on a downer I need to snap out of it.
Hope everybody else is ok,

Best Wishes,

Dave.

David,
you say you need to snap out of it but thats a hell of a lot easier to say than do. I feel cancer is a much easier subject to talk about than anxiety and depression. When you see your psychologist tomorrow, talk to him see if you can have some counselling around what you are going through now, At times like these you need the extra support and he will realise that if you just tell him. You owe it to yourself and you need to be in abetter frame of mind when you have to tell your parents what you have been going through, on your own!!!

Hi,
Thanks,you are right what you are saying.I see him tomorrow so will mention it to him.I've bought a book that he's recommended to me called The Worry Cure...I'm sure it was written for me.
Thanks again and hope you are doing ok?

David.

Thank you David
I am doing OK i have had one lot of chemo and three radiation treatments. As I have already mentioned my father takes me to the hospital and I have a group of friends who text me often and some I meet up with either for a coffee or they visit me at home. My husband is really good as well. When I got my diagnosis I wanted everything to carry on as normal as possible and to a certain extent it has. I know that I have a good support network around me so I suppose thats why your posting really struck me, I hate to think of you going through all this on your own.
Take care

Hi David,

Just want to say I really feel for you having to wait for all these tests and going to some of the follow up alone. Is there anyone close that could accompany you to the next round of tests and results. Its an awful thing to go through on your own and its really helpful to have 2 sets of ears listening to what you are told and to have someone to distract you from the worry. It is amazing how strong people that love you can be.

I am still suffering tremendous guilt about not going to the check up when my partner was diagnosed and not having read more about cancer at the time. He thought he was just going for a routine post op check up when the news was delivered and his account of what he had been told was very vague. I have been to every check up since and as I have done extensive reading since feel much better equipped to ask the right questions and disagree and debate with advice and procedures! Am currently in the middle of a wrangle about a scan.

Anyway at least you can come here for support and to get things off your chest.

Cathy

Hi GD and Cathy thanks for your posts.
GD-it sounds like you are getting through the treatment which is good and sounds like you have a good support network.I have told some people at work and it's as if they don't know what to say and if they do ask it's as if it's "taboo"? Can you relate to that? Don't get me wrong one friend at work has listened to me a lot and is supportive but I feel like I'm burdening her with my problems.I went to see my psychologist today and he said I need to tolerate the uncertainty...that's what he said my problem is.He did say that it's quite rational to worry about it but have to do other things that are more helpful.I spend a hell of a lot of time researching tongue cancer and then end up ruminating about it...that's OCD for you??
I haven't been diagnosed with it yet so it might not be tongue cancer but can't help thinking that it is...which I suppose it's something that everybody goes through.
He has told me to not go on these websites because it's not helping me but I feel like it is because it's only you and the other members here that know what you go through??
I don't feel like other people really understand and when they do they look and talk to you as if you are going to be on death's door?? I think it's because they don't know how to cope with it either?
Don't get me wrong I've got some great friends who have phoned etc....it's just my parents and brother.I did tell my brother I went for a scan but haven't told him I'm having a biopsy done.
I hope I don't have to wait too much longer?
Cathy - thanks for your post as well.I feel the only real support I'm getting is from here and even though I don't know you all personally you bring great comfort and strength to me and want to thank each and every one of you for your messages....it really has helped me.
I'm dreading the biopsy though.When I try and think about other things the thoughts go away but the feeling of dread in my stomach doesn't and don't know how to handle that one??

Sorry about the long post...at least I've got it off my chest and hope I can be of help to anybody else?
I'm off to bingo tonight with my cousin so might win some money!!!
Speak soon,
Dave.

I found a lot of people are very uncomforrtable talking to a person with cancer about cancer.
I think they feel it's like talking to "dead man walking". As a topic it does make many people feel uncomfortable. The best people to talk about it are those who have already "been there".

all the best tony k

Thanks Tony - you are spot on there. I have just got the biopsy date which is Monday 15th March.It seems a long time to wait...three weeks.I don't know if it's a good thing or a bad thing?? A good thing that he's not doing it straight away so it can't be serious.Or a bad thing that if it is cancerous it's going to get bigger?
Did anybody have to wait this long and then it turned out to be cancerous? I've had an MRI scan done and a radioactive iodine scan.Would they have indicated if it's cancerous or not?
Just wondered what everybody's thoughts are?
I do feel like if I eat for eg: Bread or tablets that they seem to take a few times to swallow before they go down my throat.I did mention it to the consultant and he said it's because I'm conscious of it being there?
Thanks for reading and hope everybodys ok out there.
Have a good weekend everyone,
Best Wishes,
Dave.

Hi David,

We had to wait three weeks - for a biopsy of a suspected cyst that proved to be cancerous. Consultant thought it was benign but he turned out to be wrong. ..and we didnt get the results for another 3 weeks! And were then told we would have to wait a further 3 weeks for a scan to identify a primary! We sped that up and had the scan done privately.

I often wondered whether we could have sped the process up had we thought it was cancer. I am not sure, but I if I thought it was cancer I would have definitely been on the phone trying. I am furious that the consultant did not suggest that it was. Its well documented in the literature that a male over 40 presenting with a lump in his neck should be presumed to have cancer until proved otherwise and tests like FNA s are often inconclusive. If I had read that then I would have been all over the NHS like a rash!

If I were you I would contact local MacMillan staff at your hospital and explain your situation and anxiety and ask whether that is a 'normal' wait time in your area.

I realise this might seem drastic as you may well not have cancer. However, if I was going through anything similar myself I would want the testing and treatment plans to be based on the assumption it could be cancer till proved otherwise. If it isnt the worry is over sooner and if it is the treatment can start as soon as possible.

It is certainly useful to have a worried relative or friend on your side to do some of the chasing. I always find it much easier to fight for others than I do myself.

Do let us know how you get on.

Hi David,
The thing is, David, you have to have your scan results discussed with you and for you to ask the right questions. I know this can be hard to do when you feel you are on the spot so to speak. Now you are left with,what appears to me,to be a long wait time for a biopsy.
Firstly - get these scans interpreted to your satisfaction - you will feel much better mentally overall.

A biopsy is the ONLY definitive way of diagnosing if you have cancer or not..

I had a massively swollen lymph gland for nearly 7 months before I had a biopsy.- the incompetent bastards!! Maybe your wait time isn't too bad after all!!

good luck tony k

Hi Tony and Cathy...thanks for your posts.I have to go for a pre op on the 11th March so will write some questions down to ask them.A few of my friends know now which has helped but not as much as the support I've had on here...nobody "really understands."
Tony I can't believe you had to wait 7 months!!!
Can't remember if I've also mentioned this but I'm being tested for cushings disease as well as this and the endocrinoligist I saw back in Sept explained to him that I felt I couldn't taste my food properly and didn't even look in my mouth.To cut a long story I got a 2nd opinion from his senior at the same hospital a few weeks later and said he hadn't done all the tests he should have done which is why I ended up having the MRI scan on my Pituitary Gland which also detected the lump on my tongue.
As I was waiting for the results the previous doctor came out and walked straight over and shook my hand and asked me how I was...which I thought was "over the top" and then the other doctor gave me the results!!!
I think he probably got a telling off from his senior because my friend has cushings disease.I wouldn't mind but he didn't even look in my mouth.