The slightly harrowing lead up to my diagnosis…

Something I haven’t written about here yet is how it came to my attention that there was something wrong with me. I know I’ve spoken about a dental specialist breaking the news of the big C-A-N-C-E-R word to me, and I obviously have a big lump on my face. But it had to start somewhere. And everything has a story behind it.

If you are squeamish about teeth… well… I don’t think this story is too bad, but perhaps proceed with caution.

I noticed pretty suddenly (i.e. within a couple of days) that quite a large lump  had appeared in my upper front jaw, just below my nose. I figured going to the dentist was the way to go, so I booked an appointment.

The first thing he did was to tell me it was an abscess and ask me when I last had a root canal in that tooth. I looked at him puzzled and told him I have never had a root canal. He didn’t believe me, and told me so.

Now I love my teeth. I take very good care of them. I think teeth are so important to the way you look, feel, act… My teeth are precious. No I have not had a root canal, thank you very much! I’ve always taken good care of my teeth! I couldn’t think of anything worse than having bad teeth!!

Still not believing me, he ordered an X-ray to prove to me that I was wrong. How on earth he thought you could forget a root canal is beyond me.

Sure enough, the X-ray came back and showed that the tooth had never had a root canal.

He then proceeded to ask me when I knocked the tooth – when I fell over, or hit it, or was playing a ball sport and it got damaged.

Once again I told him there has been no impact, my tooth is fine, there’s just something going on in my gum. He instructed me that my tooth was in fact dead, and then he proceeded to push the chair back and tell me that he would take the nerve of the tooth out now, and I would have to have root canal later, done by a specialist.

I was in shock. I didn’t think my tooth was dead, how would my tooth be dead? I tried to protest, I said maybe I could get a second opinion first from this root canal specialist. But I was already leant back in the chair, his hands were in my mouth and the injection was done. No second opinion for me.

So I lay in the chair, tears streaming down my face, while the dental nurse held my hand. It was painful. And I knew I didn’t have an abscess or need a root canal. But then again, who am I to say these sorts of things? He was a dentist, I was just having a little panic attack because of the shock of it all. He would know.

He finished up hollowing out my tooth and taking out the nerve, and tried to cut into my ‘abscess’ to drain it, but with no success. So he prescribed me some antibiotics and referred me and my poor tooth to the root canal specialist. I left in a lot of pain and shock, and £50 poorer. Yes, I got to pay for that lovely treatment.

Two days later we went along to the root canal specialist who looked at the tooth and said ‘oh yes it’s dead.’ (Well of course it’s dead, idiot, your mate removed the nerve from it). He said there was nothing he could do until the swelling went down, so he cut into the ‘abscess’ deeper to try and drain it but once again to no avail. He gave me a temporary filling and said to go home, finish my antibiotics and go back in a couple of days. Another £50 for that privilege.

I went back a few days later and the first dentist saw me. He was surprised that the swelling hadn’t gone down at all, and decided to refer me to the specialist at Guy’s hospital, just in case. About the only useful thing they managed to do. I left with another script for antibiotics, and the instructions to go home and wait for my ‘urgent referral letter’ to reach me in the post.

The other thing the root canal specialist said was that as soon as it got any bigger, I had to go straight to the Emergency department at the hospital, and they would do an emergency procedure to cut in and drain the abscess. Now that’s stressful! Constantly having to gauge if it’s any worse and then being ready to run to the hospital if it is!

The lump was on the front of my face, as well as on the roof of my mouth behind my teeth. And of course it got bigger. So one afternoon I went to Emergency, as requested, and they looked at me like I was an idiot and said there is absolutely nothing they could do. They touch nothing within the mouth, that’s a dentist’s job. Um… ok… I swear the dentist told me to come here. According to the nurse the dentist was lying and needed to get his facts straight.

About 6 weeks or so after this ordeal started, I finally had my letter and booked my appointment at Guy’s Hospital.

This was when I met the lovely Dr. Sproat, who whisked me away for scans and managed to get me in for a biopsy on the same day as my appointment. A week later I was back to see him, he was telling me the results and I was relieved and happy to have some idea finally about what was going on.

If there were any confusion before, yes now, after the work of the first dentist, my tooth was dead. He killed it. I had it confirmed later that the tooth had not been dead beforehand, this was all unnecessary.

So now I’ve got this sore, temporarily filled front tooth, which means I can’t bite into anything hard.

I suppose you can’t expect an every day dentist to know how to spot a very rare cancer in a very rare location. I suppose he did everything he could, everything within his realm of expertise. You just wouldn’t expect them to do work if they’re not sure what the problem is. I don’t know if there’s anyone to blame. It’s just a series of unfortunate events, culminating in a cancer diagnosis. Some people end up in hospital when they find out they have cancer, organs failing, and operations done. Mine wasn’t too bad in the grand scheme of things.

Just makes you wonder, with cancer being so prevalent, why is it not more in the forefront of people’s minds? But then again mine is rare. So who knows. How could they have known? I just wonder if the dentists had listened to me in the first place, maybe we could have avoided all of this? Oh well. It’s done now, and it’s not too bad really. No use crying over spilled milk. Or murdered teeth.

15 thoughts on “The slightly harrowing lead up to my diagnosis…

  1. Teresa Cooper

    Hi Jen,
    If you haven’t already it would be a good idea to explain to the dentists exactly what happened after they murdered your teeth. At least then, in future, they know what they are looking at and to listen to their patients more carefully.
    xxxxxxxx

    Like

    1. That’s definitely a good idea. My thought was just to grumble to the internet world, but that sounds much more productive and helpful!
      Good thinking. I might send them a letter.
      xxxxx

      Like

  2. Jenny

    Yes, very sad and annoying. I know you had a lot of mis-diagnosis and delay. But good you set it all out here.
    When I first told my doctor friend of your cancer she immediately said ‘Initially misdiagnosed by the dentist?’ I had to reply ‘Yes’.

    I guess your type of sarcoma is very rare, and they really have to rule out the most likely options. But it was a pity it took so long, with so much bad stuffing around, and that they still kept assuming it was an abscess, even though it was not responding as they should have expected.

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    1. Yes, I suppose you can’t really expect a dentist to have picked up on it, you just hope that they will make sure they’re correct before they go killing your tooth. The waiting weeks for an ‘urgent letter’ to turn up in the post was a bit of a pain too. But at least once they knew it was cancer, they got moving on it quickly. You would think a tumour would be the easiest type of cancer to diagnose though, you would think it would be quite obvious. The Dental Specialist knew immediately by looking at it that it wasn’t an abscess. But I guess he had seen it once before…

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  3. There is incompetence everywhere, but there are also fantastic medicos.

    What a helluva thing. I’m glad you’re writing all this down.

    I have a root canal connection with my Cancer as well. Also a Sproat connection.
    Always looking for common ground.

    Like

    1. Yeah I just keep reminding myself that you can’t expect a dentist to diagnose a rare cancer. But then again you should be able to expect them to identify if something isn’t an abscess, and listen to the patient…

      Oh wow awesome!!! Sproat is awesome!!! That’s cool

      Liked by 1 person

      1. That’s just it exactly; not expecting them to recognize Cancer, but the whole abscess thing is kinda silly.

        RE: Sproat. I spent every summer of my childhood at Sproat Lk. on Van Ilse. Not really a connection, I just don’t see that name too often.

        I was getting a Root Canal when I discovered I had Cancer. The two aren’t related, it’s just a coincidence, but there is a larger story which I will tell, later.

        Like

      2. Thank you. Im enjoying yours, have you thought of compiling it for a book?

        I tried setting up a blog during my ordeal but I was doing it on my own and I had Chemo-Brain Fog and limited use of my arms.
        I’m going through my notes, started this blog and am getting my sh&t together.

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      3. I am indeed working on a related book! Hard to know how to do it and what people will want from a book version.

        Yeah sometimes blogs work and sometimes they don’t. Good you’re writing now though.

        Liked by 1 person

      4. Yay, I look forward to reading your book.
        😉

        Take it slow, one step at a time. Don’t hold back, write from the bone, as they say.

        I can’t worry about what other people want so I write what I want.
        Although in your case I think all they’d want is a happy ending, but make them squeamish, make them earn that happy ending.

        Like

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