Convinced I have tonsil cancer. Help :(

[ClipClop]

Hey Carrie,

I do completely understand. I have been there too when you're struggling to work and have normal conversations when all you're desperate to do is research your symptoms or find some sort of reassurance from somewhere... Anywhere! The worry in itself is like a full time occupation! It is also completely exhausting and dominating. I really, truly feel for you.

Firstly, yes, I too have had a rebellious past :-). Please try not to worry too much. 10 years of smoking is really not a huge amount of time (especially when you compare it to people who have smoked for 60+ years and are still going strong!!). Also, tonsil cancer in itself is incredibly rare, even if you have smoked. I know this will be worrying you. But how many people do you know who smoke? And how many people do you know who have tonsil cancer?? Hopefully the difference here will be huge.

Re the GP, did they say what they are likely to do when you come back for a recheck or was it a mere "come back in two weeks if it hasn't gone away" wish washy thing? In all honesty, they will most likely refer you to an ENT consultant unless it all miraculously goes away on its own (which, as I said before, is pretty rare with chronic tonsil infections). If you've had the problem a while I would be tempted to go back sooner (just to stop you from worrying) and just say something like "I've been thinking about it and I'd like see an ENT specialist. Please can I have a referral?". Any doctor can do this for you. Just remember, and this is important, that you won't be going there for any great dose of reassurance (they are GPs- they know bits about everything - but they are not specialists). My GP knew nothing about asymmetry, tonsil stones etc etc... (and she was a very good GP don't get me wrong, but she understandably does not know everything about specialist areas; that's why they refer). So, you must go there thinking that what you hope to gain is a referral; not any great words of wisdom or cure (you can save your questions for the specialist ). So, from that point of view, why not go earlier? You'll probably feel better knowing you are being productive and are now on schedule to get some proper answers... and treatment!

Once you've done this and you're waiting for your appointment, it's time to switch off as much as you can. You don't need to do anything more then, the hard work is over, so make an effort to start reading a book, start a TV Boxset and give yourself a whole new project (mine is sorting out my wardrobe!!).

Take a deep breath and let me know how you get on. Xx

[Carrie8484]

Clip Clop you are my angel in this situation , thank you for replying.
Yes, last time I saw my Dr (last monday) she said ''we normally wait until you've had the symptoms for 4 weeks before we refer you''. So at that point i'd had the symptoms for, I think, 2 weeks. Hence needing to wait another 2 weeks. But you're right, Im not achieving anything sitting in limbo, so I'm going to go back on Friday (that's the soonest I can go with work) and see another Dr and insist on a referral. I will tell them I'm in discomfort, anxious, and want some answers (from a specialist).

I 100% agree about GP's not really being 'masters' at anything. I like my Dr but she didn't have a clue why my tonsil was so enlarged. I often leave the appointment with more questions than answers sometimes! As soon as I can see an ENT specialist the better. I just worry about waiting times. If its a ridiculous wait, I can pay to go private I guess. (depending on how much it all costs!)

You're right, I don't know anybody with tonsil cancer, and I do know quite a few smokers. It doesn't stop the worry though, especially when evil google brings up things like 'rise in oral cancers in under 40's' I haven't googled since I saw that!

I haven't managed to tell my boyfriend my worries yet, I constantly feel like I'm on the verge of tears and he isn't very good in these situations. He knows I'm worried about 'something', but we've only just got over the breast lump saga.

How did you get on with your cyst removal? Did you have the op last week? Hope it went well.

Thanks again for all your words xx

[Carrie8484]

I just made the mistake of googling :(
I found a forum for oral cancer sufferers and a few of the women on there had exactly the same symptoms as me - constant sore throat and enlarged tonsil with some pain and discomfort.
I'm petrified.

[Fishmanpa]

First off.. STOP GOOGLING! Stay away from oral cancer forums and please don't join or post asking questions. It's disrespectful to those suffering and battling the illness.

Now.... There's a mantra among us warriors and survivors....

"It's not cancer until they say it's cancer"

As I posted previously, your age and a host of other factors are highly in your favor and the fact that a medical professional feels this is not anything serious again bodes extremely well in your favor. I've been there and done this and I WISH my doctor would had said to me what you heard from your GP!

I wish I had better words of wisdom to help you get out of this spiral of fear but I don't other than my opinion that this is not cancer. It really does sound like something viral or bad allergies or maybe, like so many others, you have some shotty tonsils and they need to come out.

I hope you fond some peace both mentally and physically.

Positive thoughts

[Carrie8484]

Thank you Fishmanpa.
I really do appreciate your input.
I shouldn't have googled, but I'm so desperate for answers that I let myself slip.
I just don't know why I would have a permanent sore throat with an enlarged, painful tonsil with pain radiating around my jaw and ear. It frightens me.
Many people on the forum, which I won't join, did say their GP dismissed their symptoms initially, which worried me more so.
I'm sorry to 'moan', but this is my only outlet currently.

[Fishmanpa]

Just for further info. It's very rare that oral cancers present with sore throats etc. It's not until the disease advances that painful symptoms occur. Personally, other than a hard swollen node, I had no other symptoms. It wasn't until shortly before my first surgery that I started to feel "ill". By that time, the nodes on the left side of my neck were swollen to the point that it looked like I had the mumps on the left side of my neck! The tumors were pressing against nerves and structures in my neck causing discomfort. This was over 6 months from the first time I noticed it and two months after I was diagnosed.

What I'm getting at is those you spoke of an most every other diagnosed case of OC were far advanced in the progression of the disease. If it's to the point of feeling pain or constant discomfort, there's NO mistaking it. Your doctor didn't see anything of concern. He acknowledged the issue and is taking appropriate steps to monitor and follow up. My GP did the same.

Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts. It also just doesn't come up out of the blue as it takes a while for it to reach the point of being noticed. The fact you started having symptoms rather suddenly indicates more a viral or bacterial issue or, as I've said, chronic tonsil issues that may need to be addressed.

Positive thoughts

[ClipClop]

Hi Carrie,

I promise you that I had that exactly - constant sore throat, trouble swallowing, right tonsil bigger than the other. I had it for months. I promise you it was all ok. The GP wasn't terribly knowledgable (and hence increased my worrying) but the ENT guy was very good. Have you been back to the docs yet to ask for your referral?

As you know, you must stop googling. It's like a compulsion and must be treated as such. Each time you want to look, do something else. ANYTHING else. Look out the window and count the cars going by, start a random conversation, paint your nails. I know how hard it is. I'm currently at the airport waiting to go away for a week and even I'm trying to resist the urge to google why my neck gland has suddenly become sore! ("Am I ill? Is my holiday going to be ruined? Will it go down?! Will I be in bed all week?! Will I find a doctor abroad etc etc Ahhhhh!!!"). But as my therapist always tells me, "Looking for reassurance is the kiss of death". I'm therefore going to try to sip this over expensive cup of tea instead.

But don't whatever you do feel guilty for worrying. An anxiety disorder is an illness just as much as cancer is a bloody illness! You didn't ask for it and you didn't cause it. Luckily though, you can get through it with the right help. But don't beat yourself up. You're trying your best against a wretched illness of the mind.

Thanks for asking about my cyst. I'll prob have my surgery in the autumn. I'm very worried about it but I'm just so bloody grateful it's benign and I keep reminding myself of this. It could be worse!

P.s. I'm away for a week now so might not log on (depending on my anxiety!) but I'll be thinking of you. Stay strong. I know you can do this. You sound almost identical to me with your symptoms and I was 100% fine. xxx

[Carrie8484]

Thank you clip clop (and Fishmanpa)
I'm sat in the Dr's waiting room now waiting to be seen. Feeling very nervous.
Hoping I get the referral I need though. My anxiety has been through the roof these last couple of days as the symptoms are so
constant.
Have a great holiday clip clop. Enjoy the break and try to relax
I can imagine you are stressed about your cyst but they are so, so common. And like you already know, benign
I will keep updating on here so I hope to speak to you when you get back xx

---------- Post added at 10:07 ---------- Previous post was at 09:08 ----------

So the Dr I saw dismissed my symptoms and said I was 'imagining' them. She acknowledged my right tonsil was enlarged and my left ear drum 'pulled in' but said it wasn't anything to worry about, and that I need to work on my anxiety. Telling me to increase the very low dose anti depressant I'm taking.
I 100% wish my symptoms were anxiety. They aren't, I'm in constant pain and discomfort.
So I'm going to go privately to see an ENT.
I'm exhausted and very upset.

[ClipClop]

Oh Carrie, I'm so sorry to hear this. What an insensitive doctor (there's one like that at my surgery and I always avoid her!). You know what I would do? I would see a different GP and ask for a referral, you are perfectly entitled to a second opinion. Even though your symptoms aren't "serious" they are causing you very real pain and that is reason enough, let alone the worry alongside it. Honestly, ask someone else. Not because it's anything to worry about, but because you deserve to be treated like a human being.

xx

[Carrie8484]

Hi Clip clop
I hope you're enjoying your holiday? It's so very warm here, I'm breaking into a swear just sat at my laptop!
I've made a private ENT appointment for Wednesday. I don't know what I can afford following the £200 consultation, but this morning I woke up with my tonsil aching and all around my ear and jaw again and I had to do something.
Going to see my other GP is another option , but she only works Monday's and work is getting in the way of being able to get to the surgery. I literally have to snatch time away from work when I can, and it's not easy as you probably know.
If the ENT consultant thinks I need more investigation, maybe I can be referred back to NHS for those? I hope so (I'm struggling financially after paying for my cyst removal and my car fixing this month).
I've tried to 'ignore' my symptoms but how can I - I'm in pain!
I hope you are having a good week xx