Mouth cancer

Hi

I've recently been diagnosed with mouth cancer and completely devastated. I go to my dentist every 6 mths and have good oral hygiene yet my dentist didn't spot any changes in my mouth, even though I was always concerned about a white patch around my eye tooth (had a biopsy 5yrs ago and didn't show signs of anything) and it seemed to be getting redder. In july she referred me to the dental hospital, which had a 17 week waiting time, and despite going back to my dentist twice more as the redness turned into what looked like a veiny sore and a lump next to it, she didn't think there was anything to worry about.

Now I have cancer and waiting to see the maxillofacial team as I've been told all my upper right teeth and bones will be removed. It has also spread to my lower gums with painful lumps and redness.

My whole world had been turned upside down and dont even know where to begin to tell my 14 year old daughter and my dad. My husband is devastated and its killing me to see the pain this is causing him. There is no other family for support and I live away from my friends.

I've read these and other forums and have been amazed at the candidness and support offered. I'm not one for joining in and always feel awkward if I have to share difficult information. I cant fully take in what's happening to me both about my teeth and bone loss and cancer and dont know how to be.

All I know is things will happen over the coming weeks and the operation/s will be within a month.

I cant help thinking that if my dentist acted quickly I might not be where I am and I urge anyone with any concerns about your mouth to get it looked at and be a pest if you have to. I know not all mouth complaints can be serious but please get your mouth checked regularly.

  • Hi Lynn 

    yiu will be like that m I am a control freak lol hence why I did the blog to,pass on my experiences and it wasn’t the only thing I had a modicum if control over, what was in fact an uncontrollable situation we are in the very capable hand s ifvthe n h s .

    Onve you get a treatment plan things fall into place .

    another tip have notebooks  or use your phone around the house and in the car thing s pop into your head and you need to get them written down,as even the most organised if us brains turn to mush .

    Good luck walk into room head held high  ,look them in the eye and best foot forward.

    keep in touch Hazel x

  • Hi Lynn,

    I hope Friday went as well as it could! A very scary time for you and your husband. I hope the specialists were able to reassure you about these amazing 3d models and transplants that produce incredible results afterwards. And that your chances of a cure are very high. 

    I'm doing really well thanks. Regular check ups but so far so good. Chances of a recurrence are low but that doesn't stop me worrying when scan time comes round. Something that everyone understands on this site.

    Unfortunately my wife was diagnosed with breast cancer last year. It turned out to be DCIS, so it could have been worse. Had mastectomy and immediate reconstruction. No chemo or radiotherapy needed. But she is in the higher risk group of DCIS patients. DCIS patients normally have an excellent outlook. But her tumour was rather large and a high grade, so she is under closer surveillance than DCIS patients normally have. But her chances of avoiding a recurrence are still very good.

    Harry x

  • Hi Hazel

    We have got a notebook to write questions down, no matter how silly they seem. I had my appt today (Mon) got it moved from Friday so I could be at my daugther's swimming meet at the weekend.  It went ok and I get to meet a full team of support people on Thursday where they'll discuss my operation, plan and to ask questions.

    I'm still in a whirl over all this and don't know if I'm coming or going. Thanks again for your lovely messages, I hope all is well with you.

    Chat again soon, Lynn x

  • Hi Harry

    Lovely to hear from you and thank you for your message. I had my appt moved to today (Mon) so I could go away with my daughter (and husband) to her swimming gala - it was a nice distraction being in Scotland. The appt went well and will get to meet a team of support people on Thursday to discuss my operation, what's involved and any question. Still more scary times to come!

    Yes I can imagine when scan time comes it will be very anxious for you. It's good to know they're keeping an eye on you and wish you all the very best.  I'm so sorry to hear about your wife, I can't begin to imagine how this must feel for you both. Life can really suck. Even with what's going on in your life, you have found time to write to me, that is so lovely of you.

    Lynn x

     

  • Hi lynn nothing wrong with that my yearly meeting in January with my oncologist and  I’ve already started writing questions down .otherwise you find your mind goes blank turns to mush and yiu come away look at each other and say what happened there ! 

    Once things start to roll you get a sense  right ok this is what’s happening and deal with it much better .

    Good luck for Thursday ,let me know how’s you get on , remember delegate as much as you can it will pay off no matter how much of a control freak you aren’t wonder women when it comes to treatment time. 

    Hugs

    Hazel x

  • Hi Hazel

    It always seems to happen you have all the questions when they're not in front of you!

    Thank you, I'll let you know how I get on. I know I'm having my op at the end of December and that the consultant did a good job of explaining what's to be done and we both left feeling more reassured.

    Chat soon

    Lynn x