What happens if I continue to decline treatment?

A year ago I had my first colposcopy that showed high grade dyskaryosis and HPV.

I made the decision before I went for the appointment that I would decline any treatment (they offered LLETZ when I was there). My reasons for this are complex but I am comfortable with my decision.

I’ve now been invited for another smear, a year after my last one. I didn’t think to ask last year what would happen going forward - I think going for a smear/colposcopy is wasteful of resources when I will not be accepting treatment regardless of the results (even if it develops to cancer).

Will I continue to be invited for smears every year? Is there a way I can opt out of this? I have booked a smear test appointment so I can discuss this with the nurse but wanted to know if anyone here had any experience of opting out of treatments?

Thanks (:

Hi,

I had lletz 1.5 years ago and I’m now HPV negative (test of cure) and back to routine recalls every 3 years. I’m very grateful I had this opportunity which could have potentially saved my life. I don’t understand this decision of declining treatment or smears tests. Lletz is painless and really not a complicated / risky procedure. I you have CINIII and don’t have treatment it’s quite unlikely it will resolve alone or just by diet or being healthy. I wouldn’t take the risk if I was you to be honest…

You can of course pop out from the routine smears, I guess, I just think that would be a non sense decision.

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Anyone can chose not to have treatment, but I don’t understand why you are asking if you can opt out?
Is simple just say you are not going.
But too be honest is such a bad decision to make.
Not sure why anyone would take any risk with cancer, I had LLETZ and super happy that I had treatment, Please reconsider your decision is definitely not the right one.

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Hi,

You have the right to make your own decisions but I would suggest to seek some counselling for the reasons that you don’t want to seek treatment. You might ignore it now as you don’t have symptoms but if you leave it untreated you will have. You will develop pain, bleeding severe bowel issues that will not go away. It might sound fine for now but later might not have the same options. We are blessed that medicine has progress and we have the option for treatment. In the past people were die from it don’t waste it.
I really hope to change your mind and seek treatment. Lletz is just uncomfortable, hysterectomy, chemo, radiation and brachytherapy will change your life as you know it now.

Xxx

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Hi OhNo

I elected to stop going for smears from the age of 50y. My GP surgery asked me to sign a disclaimer and they stopped sending me reminder letters. When my next routine smear was due I got an invitation as usual but just ignored it and any subsequent reminder letters. My GP noted I wasn’t up to date with smears during an appointment for some other matter; I simply said I considered I was low risk and didn’t need them any more and no more was said. Opting out of screening/treatment is easy - just ignore and/or say no.

Ten years later I was diagnosed with stage 2A cervical cancer. I was instantly overwhelmed with various emotions, like nothing I had experienced before. One of the first things I felt was ferocious and bitter regret thet I had given up my opportunities to prevent the cancer or at least catch it at an earlier stage.

Before my diagnosis I held various mistaken beliefs and I think it might have helped to write down all my reasons for avoiding smears because that may have helped me see that much of my reasoning was flawed. I’m embarrassed to admit that I had the attitude that if I was ever diagnosed with cancer I would refuse treatment and go palliative on the very mistaken belief that any cancer would kill me quickly if not treated. Some cancers do kill quickly but many (including cervical) don’t!!! My symptoms of cervical cancer included heavy, almost projectile, bleeding that was impossible to ignore and when my diagnosis was confirmed my suvival instincts kicked in big time and my outlook changed in an instant.

x

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Hi ohno

I just wanted to address the fact youve been recalled annually and wanted to just share my story as to why they oftentimes recall on an annual basis.

2019 - hpv positive, normal cells
2021 - hpv positive with borderline cells
2022 - colposcopy smear, high risk hpv with abnormal cells
2022 - colposcopy with lletz
2022- diagnosed with grade 3, 1b2 adenocarcinoma with neuroendrocrine (large cell cervical cancer) in the endocervix with positive lvsi
2022 - radical hysterectomy inclusing removal of ovaries leading to premature menopause, no lymph node involvement or evidence of spread.

I had no symptoms, all of this was spotted by smears.

Im extremely grateful for the annual smear/recall, the cancer I have is rare and has a greater chance of distant spread and recurrence. I am currently having to have adjuvant chemotherapy, a total of 6 cycles.

I appreciate you are comfortable with your decision. I just wanted to highlight what happened to me to give an indication as to how quickly things can turn. Within that year I had gone from borderline changes to cervical cancer. My oncologist is confident that we caught it early enough but the emotional rollercoaster and the side effects of all the treatment is grueling and something I wouldnt wish anyone to go through.

The lletz had got most of the tumour out and it was in this biopsy that showed it has started to go into the channels of the lymph system/bloodstream. As such i believe they caught it just prior to it trying to spread and given how quickly it turned, had i left it and failed to attend i believe it would likely have spread and id be in a completely different position now. In addition it isnt just me that cancer effects but everyone around me. Seeing everyone around me be so affected by my diagnosis is so hard to bear.

I appreciate that no one can predict the future and that HPV can oftentimes be cleared by the immune system or not lead to cancer. I appreciate that you do not want to waste resources by attending your colposcopy but by attending could this avoid wasting resources in the future should this develop into something more serious.

Like everyone else has said i think you can simply opt out if thats your decision. I imagine telling your GP or the colposcopy nurses would be sufficient.

X

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Make sure you are on a good regimen of vitamins d3 with k zinc vit c , i get mine from amazon. also a daily multi vitamin spray not a bad taste at all!! Many diseases are caused by lack of the right vitamins especially d3 most people are deficient of it, and do not realise just how important it is for so many things.Zinc also is vital, and our modern day foodstuffs have many additives but not good vitamins.
Just inform your doctor that you do not wish to have any correspondence from them for smear tests inthe future, and they will make a note of it.

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Hello

I’m Unsure what your reasons are but I totally understand you. I’m extremely fearful of any form of invasive procedures/surgery and considered just doing a watch/wait. Since 2018 I’ve had abnormal results and what started as low grade is now high and my HPV is not clearing itself.

They’ve now agreed to do LLetz under GA which is the best option for me, I’ll have no idea what’s going on and won’t feel traumatised. It’s worth discussing how you feel with your consultant so they can give you some options, if you still don’t want to go ahead then you can make that choice.

I’ll be honest and say I wish I hadn’t waited, I’m now worried sick I’ll have my treatment and they’ll discover something more sinister which will need a lot more invasive treatment than a laser. To answer your initial question did find this https://www.csas.nhs.uk/support/, you can choose to opt out with no questions asked.

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I can’t believe what im reading - to be offered treatment is a gift… i think you should strongly rethink any treatment offered before its too late… I’m sure you won’t be chased forever

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