Second tongue biopsy

Hi,

I have been living life since my tongue biopsy in July 2022 and subsequent surgery in September 2022.

I was diagnosed with moderate dysplasia on my tongue and had the area removed. 6 monthly checks ups followed and now I am preparing for my second tongue biopsy on Wednesday 4th Dec.

I remember the last one vividly, my tongue wasn’t sore then but it is now leading up to this procedure.

I changed my life 2 years ago after surgery, changed to working a part time job that I love, the small team are wonderful and our work makes people happy in the community where I live and beyond.  I look after my 3 year old granddaughter 1 day a week and I have 1 day off to do housework or go to lunch with family or friends.

I have a wonderful husband, 2 grown beautiful daughters and sweet grandchildren and I count my blessings every day, I realise some people don’t have that.

I am 58 and my mum had oral cancer but she was much older than me, she smoked for quite a few years, I have never smoked but grew up in a house of smoke.

My mum was also a narcissist and I didn’t realise until I was in my 50’s, ultimately I had been with her during her biopsies and neck dissection op which was awful and she got secondary breast cancer and died in Nov 2021.

I have lots of emotion not just around my ongoing journey but also the fact that I went no contact with my mum the year before she died because my mum decided to leave her husband of 29 years when he was dying of cancer, he died 6 weeks after she left him and I couldn’t comprehend why she did that…

3 months before mum died she called me, I went to see her but I was guarded, I felt very sad because I thought we had always been close but I didn’t really understand why our relationship was not right.

I stayed with her the night before she died and I felt I did what I needed for closure. She did say to me she shouldn’t have left her husband and I didn’t respond.
My mum was awful after my step father died and said if I went to his funeral she wouldn’t go. Of course I was going to his funeral but she didn’t attend.

My brother and his wife encouraged mum to leave her doting husband and got her to change her will leaving everything to them. My love for my mum was never what I could get from her, in fact I doted on her, it was based on love and respect but it was sorely tested and I was let down. 

I had a nervous breakdown after mum died and that delayed me following up on my dentists concerns about my tongue ulcers.

All my emotions about my journey are still entangled in what happened with my mum and I don’t know how to separate them and it feels harder for me now, constantly going back and reliving what happened with my mum.

I have a fabulous sister who went no contact with mum 3 years before she died because my mum was hateful towards her, I thank god for my sister every day and we talk lots.

Gosh so much to unpick, my head is spinning and it’s 3.30 in the morning.

I am so anxious about getting my biopsy results but I am also very grateful for the love I feel around me.

Does anyone have a positive story about second tongue biopsies for dysplasia. I feel a bit swamped by doom and gloom and worry about getting an outcome that is going to start me on a very tough journey, I know this time it feels different.

Thank you if you read this far. What I feel saddest about is all my family and closest friends are worrying too but they wouldn’t say to me that they are. I wish they didn’t have to deal with my journey either.

  • Offline in reply to dj48

    Hi Dave,

    Very sorry to hear about your wife and that you have had prostate cancer and the oral lesion.

    It sounds like your journey over the last few years has been really difficult.

    Everything crossed for your recent biopsy results. Do you have an appt date yet to get your results?

    I have read a lot about oral dysplasia and people describe it as feeling like you are stuck in ‘limbo’. I understand that sentiment, it is a watchful wait, as my first consultant said.

    My first biopsy result was moderate dysplasia but the op’s excised tissue was mild. I have read that you can receive 2 different dysplasia results from the same area. Hope you receive some good news.

    Thank you for your reply to my post.

    Sending best wishes to you.

  • Offline in reply to Subiedoo

    Thank you Subiedoo. 

    Obviously my wife's death was a difficult time,  but TBH life in general last 6 years has been good to me. I met a lady, also widowed, we moved in together during 1st Covid lockdown as a temp measure,  but became permanent! Prostate treatment was easy enough. We holiday and enjoy life. 

    I'm 76 and rather pushed my luck as a "youngster" and feel I've had more than "a good innings"  -  platitudes rule at my age!

    I'd prefer to carry on for now (although COPD slowing me down) but should current investigations turn out badly, then so be it. I'll not accept any heavy duty treatment. Quality of life not quantity for me.

    I wish you much good fortune, take care, Dave 

  • Hi Subiedoo,

    I had my surgery and unfortunately I have a lot of pain on my right hand side of face along with the ear. I am unable to swallow properly and trying to take fluids in.

    I was discharged the next day but had to go back in via A&E which took 7 hours. Pain was too much.

    Hope you are well.

    Thanks

  • Offline in reply to Makkie

    Hi Makkie, sounds unpleasant. Too early a discharge is such a false saving of resources, especially if have to go back through A&E.

    Did  you have to be an in-patient again?

    Hope pain easing.

    I had biopsy in I think 4 discrete areas of what could be leukoplakia last Tuesday. Results awaited some time.....

    Look after yourself, best wishes, 

    Dave.