Awaiting Diagnosis

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Hi all,

New here. And apologies to join this community pre-diagnosis, but I just need to get all of my thoughts and questions down somewhere.

Notes: 38yr old male. Non smoker. Casual drinker. Have a wife and 2 yr old daughter.

I have just been added to the 2 wk urgent referral scheme (appointment in 2wks) from my dentist. I've had a mouth ulcer for 8weeks. 

In addition to the ulcer, I also have 2 small patches between my teeth (diff locations) that bleed when brushed and don't heal (maybe 4wks). 

I also woke this morning with a tiny sore of my lower lip (this may also be stress related, since I've thought of little else for 2 straight days).

So, as you're all familiar I'm sure, I've been terrified that not only is it cancer, but that it's spreading and my appointment is so far away still (23rd sept, addenbrookes).

So I have q's that are hard to find answers too. I am literally going to dump them here as a series of q's - and though I know that a lot of the answers are contextual - I'd still appreciate your thoughts...

1) when they say 90%+ referrals aren't cancer... Is that a general stat across all cancer referrals or specific to mouth ulcer referrals?

2) for those who had a single ulcer (no noticeable large growth, but a bump with a white head), did it spread for you as I described? (Darker patches between teeth that bleed when brushed but don't hurt otherwise?).

3) I am feeling tender towards my ears/lymphnodes. Slight sore throat on waking in morning that disappears mostly after first 10mins - sound familiar?

4) My eyesight has got a little worse (focus on detail) over past couple months. Could be just aging, but does that ring any bells?

5) if Cancer is in many places in mouth, but no large lump yet - would this be stage 4 due to many locations?

6) They give 5 year survival %. Can you survive and live a full life too? (Another 40yrs for example). 

Again, apologies for all these unstructured q's / thoughts. I just want to prepare! And answers are difficult to come by. I imagine I will have more to add to this thread as I think of them...

Oli

  • Oli. Thus waiting is dreadful but you have little choice. I’m afraid none of us here can give you a medical opinion. Are you looking on Google? Best not because what you look for is an answer that tells you that you don’t have cancer. You’ll drive yourself insane. 
    I can tell you that a mouth ulcer of 8 weeks duration is hugely unlikely to progress to multiple cancer sites in a matter of weeks. 
    Your appointment is less than two weeks away. Nothing significant is going to happen in that time. 
    You might find it helpful to ring the Macmillan help line at the bottom of my post. Speaking to somebody will really help 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Ollie

    Stand back and take a deep breath. You are naturally panicking but you don’t have anything definitive yet so all the googling and worrying is not going to help. Like Dani says spread of cancer so quickly from an ulcer is very unlikely.  There may be any number of reasons but until you get a medical diagnosis you will not know.

    Head and neck cancers are very treatable in the worst case scenario.

    I am 9 years post a cancer diagnosis and still going strong and living life to the full.

    This forum is here for you if needed but hopefully it won’t be necessary.

    Try and keep as busy as possible to take your mind of things.

    Best wishes

    Lyn

    Sophie66

  • Hi Oli and no apologies needed!  Welcome from me and I hope your membership of this group is short lived, but if it is not. we're all here for you.

    As has been said only your clinical team can give and opinion on your diagnosis.  These cancers present in many varied ways so all of your symptoms could be cancer or more likely are not.

    I have worked in and with the NHS on cancer pathways and the stat of 90% ending up of no cancer concern is general across the spectrum of cancers and relevant to all cancers.  Your dentist sounds really good at recognising when there is an expert opinion needed.  I have had 3 "2 week" referrals and only the original one was cancer.  The others were different non important conditions once diagnosed.

    The only other question that I can answer is quality of life post treatment.  The treatment is tough - no matter what route you take - but the CURE (not holding it at bay, but CURING) is very high and the 5 year survival rate is high and increasing all the time for head and neck as treatments get better each year.  The vast majority of us live a good (but different) life post treatment.  For example I still sail and enjoy eating out.  Now that travelling is opening up again, I am planning of some big trips this winter to very far flung regions.  Many others will be doing their own thing, be it marathons, bike rides, going to live abroad etc.  Take solace in their grasping of life and making the most of it.

    Try not to worry or overthink during the next couple of weeks.  Remember that it is unlikely you will get a definitive on the day as further tests may be needed.  This is probably the toughest period mentally.  Once you have answers it does become easier.

    Peter
    See my profile for more details of my convoluted journey
  • Hi. As others have said the waiting’s the worst over 90 % of head and neck cancer referrals aren’t cancer. You’re on the right pathway now try to keep  off Dr Google you will only frighten yourself even more. We can’t give medical advise but can certain listen to you. From my diagnosis to treatment starting I was 63 days so as yiu csn see a few weeks any cancer won’t invade your body. 
    i live life ti the fullest I’m 4 years post radiotherapy and chemo living my life to the max. I go abroad ride my bike and hill walk  not bad fir a 65 year old. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Oli,

    I can remember when I had to wait to be checked out and the waiting is the worst part. I would say don't try and find out stuff on google and stick to sitesl ike Macmillin where you have some great resources.

    When I was first told I had cancer, I thought my life was going to over in days. My team was good though and the education I've got on here has ben awesome. Like Beesuit has said nothing much will happen in a couple of weeks.

    Hope all is good.

    Lee

        Fighter of cancer T4N2M0 oropharyngeal SCC(grade 3, P16 positive) 2 cycles of chemotherapy and 30 radiotherapy sessions.