HPV positive for 4 years

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I wonder if I can get some advice please.  I have had positive HPV high risk results for the last 4 years.

In January 2023 I went private as I had 2 letters from the NHS one saying I had a positive result and one saying I didn't so wanted to be sure.  The test came back positive and I then had a Colp which came back as CIN3, I then underwent a Letz.  The consultant took 9mm to get a clear margin and this was confirmed as clear.  I then had another smear on  the NHS which came back positive for HPV 6 months later.  I was then under the same consultant but on the NHS and they did another test 5 months later and another colp.

I've waited over 9 weeks and finally called and was told my results were CIN1 and they had made another appointment for 12 months.  I question this as the consultant had said (before the second colp) that he would look at hysterectomy and possibly putting me on a clinical trial.  A nurse specialist called me back to tell me the results were negative and not CIN1 as that was a mistake.  I have questioned this again as I simply can't trust these results. 

I also have some sort of Autoimmune disease and have been diagnosed with Granuloma Annulare.  I am at my wits end worrying about this as I know if you can't get rid of this it will turn to Cervical/Vaginal cancer. I will be 60 this year and have always been super healthy.  I feel that my only option is to go back private which I can't afford but simply can not trust the results coming from the NHS.  Does anyone know what else I can do to get a definitive result which I can trust please.

  • Dear Gizzymoo

    My name is Rae and I am a cancer information nurse specialist here at Macmillan Cancer Support.

    We are sorry to hear that you have been receiving unclear information from the NHS regarding your results.  It is understandable that you want to be sure of the information you have received.

    Within the NHS they have a department called the Patient and Advice Liaison Service (PALS).  PALS can help resolve concerns arising from care or a lack of accurate information.  They will also inform you about raising a complaint within the NHS if you would like.

    You can also ask for a second opinion, which means that a different doctor will be asked if they agree with your diagnosis and treatment.  The NHS does not have to provide a second opinion, but you have the right to ask for one and most doctors will be happy to refer you.  This can either be your GP or current consultant.

    Granuloma annulare is a benign condition (non-cancerous) which does not affect general health.  It is caused by inflammation in the deep layer of the skin, but it is not known why this happens.

    Please do contact your hospital PALS department to discuss your concerns.  We are happy to speak to you about the information contained here if you would like.  Our nurses are here 7 days a week 8am-8pm on the Support Line 0808 808 0000.  Talking over your worries and concerns can help.

    Best wishes

    Rae, Cancer Information Nurse Specialist

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

     

    Ref/RH/MD

  • Hi Rae 

    Thank you so much for your fast response. 

    I am going to see my Consultant as a private patient tomorrow to talk it all through. 

    Thank you for the information on PALS that’s really useful to know depending on what happens tomorrow.  Also, to know I can ask for a second opinion. 

    I am aware of what the Granuloma is - I have a great consultant for that thank you. 

    Very grateful as it’s been 18 months of waiting and worrying as I’m sure lots of others have too. 

    Many thanks once again. 

    kind regards