Mouth cancer but no biopsy yet?

  • 10 replies
  • 80 subscribers
  • 231 views

Hi, I'm Jane and I've just been to an appointment with my dad with a maxillofacial specialist. This whole ordeal has been a whirlwind. It started with my dad having a sore throat for a while and we went to the GP. The GP took one look and said im sending you for an urgent 2 week referral to maxfax. We had the appointment today. We walked in with the specialist and there was also a nurse present. The specialist asked some questions then wanted to have a look himself. He said it looks nasty. My dad asked what is it? The specialist replied "mouth cancer". My heart sank. My dad being brave said I knew it. I asked how certain are you like 60% 70%? He replied 90 odds (i can't exactly remember if he said 90 95 or 99). The nurse then says she's actually a MacMillan nurse and here to help us. Can they tell from looking at it its mouth cancer? I'm so upset and confused. Do they not need to wait for the biopsy? Has anyone ever experienced this? The nurse was lovely gave me her card and took my number and my dads. I'm just stunned with the appointment. I thought well this is the first appointment they will probably tell us what it is if its not cancer and if they suspect its cancer they will do a biopsy first. But apparently they can be basically certain its mouth cancer by looking at it? He then went into detail about treatment and it wasn't even a case of "if it is cancer". He said the treatment is surgery and radiotherapy but he doesn't think my dad could go through it due to his health (strokes, diabetic type 2) and I started crying and I had been reading about if it was cancer and the extremely high cure rate head and neck cancer has. My whole world is shattered. They done a biopsy then and there then getting a scan on Tuesday. Said we will have another appointment to discuss whats been said at a meeting the specialist is having about the case. Surely they don't tell someone its cancer if there's any likelihood it isn't?

Thanks.

  • Hi Jane

    2023 I had tonsil cancer diagnosed, ENT took a look during the initial appointment and told me there and then that it was cancer ....biopsies proved them right.. .HPV 16+ Tonsil cancer, chemoradio treatment, pretty gruelling stuff ...

    Hopefully a treatment plan will be put in place for your Dad.

    Peter 

  • Surely they don't tell someone its cancer if there's any likelihood it isn't?

    Hi Janey. Sorry to see you here under such circumstances 

    These consultants know exactly what they are looking at and certainly wouldn’t say there was cancer if there wasn’t but biopsy is the definitive diagnosis. 
    What I do find strange is the assumption, this early on, that your dad is too ill to have treatment. 
    I hope you can get the appointment to discuss the decision the MDT has arrived at soon. 
    Hugs 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Good evening, Jane, i was the same as your dad with a referral from my dentist and when i saw my consultant he said to me its 99% cancer i had x-rays and a biopsy there and then, and he also made an appointment for a scan (M.R.I) Im afraid to say that the consultant was right and based it on his experience as a maxillofacial consultant hence why he is pushing for scans and biopsies, this all happened in 2008 when I was 48. Hopefully, they can devise a plan of action once they have discussed the results. I wish you and your dad all the very best , take care.

                                                                   Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hi Peter,

    Thanks for replying.

    I can't imagine what that was like.

    I suppose knowing is better than waiting but I think its a case of now we know, id rather be back to this morning where there was a chance it wasn't. It was all so quick and unexpected.

    Jane

  • Hi Dani,

    Thanks for replying.

    I thought as much as he was just so outright with it. No ifs buts or maybes. Straight to the point. Which is I suppose better than beating round the bush.

    I hope there is a discussion around whether my dad would withstand any treatment at all. I think when he said that it broke my heart the most as if there is completely nothing that can be done.

    Hopefully the next 2 weeks are quick and we can find out more information.

    Jane

  • I was 68 at the time of diagnosis, previous history of cancer and heart surgery, treatment was not a walk in the park but doable, I would like to think that a plan for your Dad could be put in place.

    Peter 

  • Hi Chris,

    Thanks for replying.

    Its was just all so quick and unexpected. I think it explains why the nurse was already in the room as the GP sent maxfax a picture of his mouth so he probably knew from the picture too. I absolutely hated the last 3 weeks wondering what if and now its here, I want to go back to what if!

    Jane

  • Hi Jane sorry you've found  yourself on her as the others have said the consultants are experts at doing their jobs. In my case my GP was 99% sure that my neck lump was a lymph node from a cancer in my throat/ tonsil area I’ve seen my notes since and he stated suspected head and neck cancer. It was and a biopsy confirmed it was my tonsil and caused by the HPV virus.

    As Dani says your dad’s  case will be discussed at a multi disciplinary team meeting and the outcome will then be given to you at another meet shortly afterwards on most cases. I too struggle with the comment that he’s too weak to do radiotherapy although it’s brutal you don’t mention your Dads  age ? maybe that’s a factor ?  quality of life v quantity of life  only a guess. Unfortunately there’s nothing you can do it’s the waiting game which is horrid, you can also get a second opionion from another hospital.

    Remember to ask about the staging of  his  cancer and if he has metastases to elsewhere, again that coukd have an effect on treatment outcomes. It’s a worrying  all you can do is be there for your dad and if yiu can let us know what the meeting brings. In the meantime look after yourself as well yiu will need to be well to help dad. 

    hugs 

    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 Hazel,

    My dad is 66. When the specialist said about treatment, my dad asked if it was because of his age and the specialist said not at all. He said its more to do with his health as a whole. He had a stroke in 2013 and recovered well except for left sided weakness. He then broke his hip in 2017 which lead to less mobility but still walking. His toe was then amputated in 2019 due to infection (this didn't have much effect). In 2021 he lost some of his left sided peripheral vision which at the time we thought cataracts, 18 months later ophthalmologist said not cataracts but possible silent stroke which coincided with further balance issues and mobility. Scan showed multiple stroke evidence not just one. Put on insulin in February this year as medication not enough anymore. Other than that he eats well, can get to the bathroom independently and shower himself. Does need help getting dressed due to stroke and hip and hasn't been able to cook since 2013 due to the first stroke. Enjoys a social life with his neighbours and gets out and about on a mobility scooter. Still life and soul of the party. Brain is all there and a bit more.

    He also drove himself to the hospital during his first stroke and was up and walking within days of both his stroke and broken hip. He is a strong willed man constantly downplays when he is suffering or in pain. To me he's made of steel. Phoned me from the ambulance when he broke his hip to say he had fallen and they think he has broken his hip but "its not that bad".

  • Hi Jane  I was 61 when diagnosed, your dads same age as my hubby. All,I can say is wait until the m d t  meeting has taken place and see what the consultants say. To get an idea of treatment my blogs below I had 35 radiotherapy sessions which do involve getting on radiotherapy table being strapped down with a mask that’s bolted to table this happens daily Monday to Friday you're on table around  12-15 mins dependent upon scans being taken I had a weekly scan while fastened to table those days took a bit longer. we will all be here with tips , my husband was my lifeline he drive me daily the 90 min on  bad days  traffic wise each way to hospital and I was tube fed for 6 weeks as mouth becomes too painful to eat and drink. 

    just  giving you an indication  about the treatment so you are prepared for putting up a case for your dad it’s possible the strokes may be the reason as the radiotherapy is targeted  in many cases very close to our carotid artery

    . This time last year Dani and I lost a close friend who 3 years previous had radiotherapy for head and neck cancer  and last November he had a series of mini stroke caused by the treatment possibly and then a big stroke which sadly he didn’t recover  I can’t say medically that may be reason but thought I would share his story with you  he did have a few co morbidities prior to treatment blood thinners etc  

    you can ask about immunotherapy for your dad ,there’s a few on here who have had that and it has in many cases given extra years  

    look after yourself as well

    Hugs 

    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/