Hi
Although I haven't actually had my cancer confirmed as I am awaiting biopsy results, the Consultant has told me he is sure I have pharyngealcancer.Iwas told this yesterday and after spending all today on the internet I am feeling scared.
I had Bronchitis 6 weeks ago and then the first sympton I noticed was a swelling on right side of neck. I thought it was to do with just getting over Bronchitis, but went to see GP who looked in mouth and said I had some sort of growth at the back of my mouth but he had never seen anything like it before!
He referred me to a ENT Consultant who I saw yesterday. I was told the growth is on the back of my tongue and then goes over to where my tonsil used to be and also on my soft palate.
I didn't have any symptoms from it - the swollen lymph gland aches a lot so that was my main concern.
I still can't take it in - I feel fine apart from my neck.I have to go back on the 10th Dec for results and find out what treatment is possible.It seems so far away to wait and my imagination is in overdrive wondering how long I've got live!
I shouldn't really be suprised to get cancer as I had cervical cancer six years ago.Unfortunately I have a disease called Lupus which I got when I was 19 which started me on a life of hospitals, operations,illnesses etc.Apart from the cervical cancer which was early and only needed surgery, I had to have 4 hip replacements and 1 knee due to side effects of prednisilone and then my kidneys failed and following 18 months of dialysis, I got a transplant 4 years ago.
My new kidney has been working brilliantly but obviously with the drugs needed to stop my kidney rejecting I always knew I was a high risk for anything going!
Although I have been through quite a lot I think this is the worst thing I've ever had.I'm worried that because of my suppressed immune system that I won't be able to beat this.Also, I know it sound vain, but I am terrified of what sounds like awful side effects fron Radiotherapy and being disfigured from surgery.
I was wondering if because my cervical cancer was caused by HPV, whether it is likely that it is the same virus causing the pharyngeal cancer and if so is that better or doen't it make any difference.
Sorry to ramble on - I'll try to keep future postings shorter!

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Sanjan

Sorry to hear of your diagnosis over all that you already have had to cope with. Speak to your oncologist about your concerns. I am sure that your doctors are aware of additional precautions needed to minimize the side effects in view of your reduced immunity. I suspect your treatment will be a combination of chemo and radiotherapy. (To reduce side-effects you might wish to ask about IMRT.) If the HPV is involved, you might indeed have a better prognosis. I would suggest that you focus on getting through the treatment. We will be here to support you all the way.

Best wishes

Vinod

Dr Joshi
Thank you for welcome and advice.
Is IMRT available in all hospitals - I don't want to upset my hospital by asking to be referred elsewhere!

I am waiting for my MRI scan and am dreading it due to being quite claustrophobic.How long will it take? I am having head,neck and chest done.If I suddenly have to get out due to a panic attack will it mess the scan up?

On a completely different note - my mother swears by Manuka honey for everything! and thought it would be good to sort of slowly let it slide over the cancerous areas to let it soothe and possibly help prevent inflammation/infection.I have just started doing this and it does feel pleasant but I have now read that sugar can encourage cancer to grow!Am I doing myself more harm than good?

I would be grateful for anyone's advice.

Hello

No one seems to want to speak to me! Am I doing something wrong?!
Anyway I'll just keep amused by posting to myself for the time being
I am just abit worried as if you read my previous postings, I was due to see the Consultant + team on the 10th to get biopsy & scan results.
I have now had a call this morning asking me to go in tomorrow instead! I haven't even had the scan yet and surely they wouldn't have got any biopsy results back yet if it was only taken last friday evening.
I can't help thinking this is not a good sign!
Please anyone - tell me what you think...

Sandy

Hello Sanjan.
Try not to get to worked up thinking to much ahead. I had myself gone domented while I was waiting for my results. I was giveing away my jewellery I am glad it was my daughter i gave it to at least I could get it back not dead yet. I had my surgery last april and R/T in july. It has not been easy I am still having a hard time eating the texture of food has changed so I am not that interested in eating I think I want something and when I go to eat I dont want I have lost a couple of stone at this stage I think its the same for everybody having gone through treatment Icould afford to lose some I still miss it.
It is a very scary time it is the fear ot the unknown, and the people on the forum are right you will be surprised at how well you will cope by the time you have gone through surgery and maybe treatment you are tired and that is a blessing in itself all you want to do is sleep hope for the best I will be thinking about you and wishing you well
Noreen

Hi Noreen

Thanks for your post.I know you're right - I'm driving my hubby mad wanting to talk through different scenarios, I think I'm just trying to prepare myself for the worst but hope it will be better.I'll let you know what they say tomorrow.

hi sanjan

your mind will be in overdrive, it's a horrible time but try not to second guess what might or might not happen it can drive you insane. (easier said than done) Whatever the results when you get them let us know and noreen is right , you will be amazed at yourself at how you will learn to deal with and face whatever lies ahead. Wishing you all the best and let us know how you come on.

gordon

Hi Gordon

I will try and "chill out" as best I can!

Sandy

Hi Sandy,
Sorry you've had to join our club. It's no good saying don't worry but try not to panic about things you cannot change. A positive attitude and a sense of humour is a big must. I don't know if you've read any of my postings, but I had a pretty horrendous time a year or so ago and my attitude to what was happening to me definitely kept me going. Good luck anyway, and let us know how you get on. We'll all be thinking of you.
Dian x

Hi Sanjan, Sorry to hear what you think is wrong.
Just try relax and wait until you see them.
The Consultants are very good and if they can get your results back quicker they do.
Have experienced this many times and the wait is menatl torture.
I do hope you get good results and either way let us know how your doing.

cheers

Paul

Hi Dian

Many thanks for your reply - I will read your previous postings tonight. Thank you to Paul too for your support.

Well I had my revised appointment this afternoon and saw the Consultant. The reason it was brought forward was because the biopsy taken last week had come back and when he saw it, it looked quite mild (I don't think that was the word he used, but you know what I mean!)and he knew this wasn't the case as it had spread to my lymph glands.
So he took another biopsy, this time from my tongue as he thinks that is where it started from.He then put a tube up my nose and down my throat to look more clearly at it on a screen - first time I've had that and it was not pleasant!

The outcome of it all is that he thinks the cancert is linked with HPV and started on my tongue and progressed over to my tonsil tissue, then above that on to my soft palate and on to my right side lymph gland. He also said it may have gone down to the base of the neck - whatever that means. He said I will need to have some surgery in my mouth(I assume to remove a bit of my tongue) and also to my neck to remove lymph nodes, followed by radiotherapy and chemotherapy. I'm not sur in which order or even if it's all at the same time!! He said he can't give me more specific details until the results are back. So it looks like they will be throwing the lot at me.
I have to have an MRI scan tomorrow which I'm not looking forward to in case I have a panic attack and then a CAT scan next week.
I then have an appointment on Thursday to be told the details of my treatment.

I think one of the worst things is telling other people.I've had a bit of time to sort of get used to it - yes, I know you wouldn't think so by my postings! but it comes a total shock to them especially as I look fine.

Ian(hubby) and I are due to go on a short cruise for 5 days from 18-22 December so I don't know if they begin treatment straight away in which case we won't be able to go or if they won't start until after xmas.

However I'm very glad that I joined this site as I think I will be calling on you all for help and support on a regular basis!

Sandy

quote:

I have to have an MRI scan tomorrow which I'm not looking forward to in case I have a panic attack and then a CAT scan next week.

Hello Sandy

You will find the advice given in these earlier posts about coping with an MRI scan helpful. Good luck.

Best wishes
Vinod

Sanjan,

It sounds like your doc is on top of things and is moving quickly. I wouldn't freak over the MRI. The equipment they used for me (because the scan was only to my head and upper part of my body) was adjusted so that the tube didnt encompass my entire body. Although lying flat, I could see and there was a break in the tube right around my waist and it was open probably to my knees. You can see through that space - it's not as if you're in a coffin with the lid closed! There are lights and bleeps and ticks and loud noises made by the machine when it's moving/scanning - you'll have plenty of stuff to keep your mind occupied. If you let the doc know in advance that you're claustrophobic he can have an open MRI machine scheduled for you. Mine wasn't the true open machine, but was open enough so that I didn't feel enclosed at all. Make sure they give you earplugs!

This is a pretty funny clip of what it sounds like:

What does it sound like?

It's loud enough to scare dogs! My point is that it's something you can laugh about later if you've got a sense of humor, as this kid and his family obviously have.

You can also go to google.com and type something like 'what is an mri like' and get some information from patients. If you just type 'mri' you'll get an overload of technical info.

Best of luck to you,

Mimi

This message has been edited. Last edited by: Mimi McC,

Thanks Dr Joshi and Mimi

It really helped reading about others having an MRI and the youtube clip was hilarious! - now that I have had the scan it is so like that!!

The Dr suggested wearing a loose eye mask so that I would have the effect of shutting my eyes but can still see plenty of light around the edges and I found this really helped.It was the noise that was so loud even with ear defenders, so there was no way I was going to be able to hear the cd I took with me.
I have to admit I was very apprehensive whilst having my head put in the cage to keep my head still and the machine came down to my knees.

Once I had been in the machine for a couple of minutes and had got used to the surroundings and noise(although they craftily change the type of noise just when you get used to it!)I actually didn't mind it all and could have quite happily stayed there for longer!

So a very small victory ticked off...

Ct scan on Wednesday, which I'm ok about and then the BIG DAY when I meet the Oncology team and find out what exactly is going on with me and what the treatment regime is going to be.

Sandy

Well done Sandy.

Keep going and wishing you all the best

Ken