Opting out of screening

Dear ladies,

is there out there any lady that has decided to make an informed decision to opt out of screening? I am one of those and would like to hear your opinions or your reasons behind opting out.

When searching online for more opinions, this does not seem to come up at all. This is by all means a valid choice for any woman in this country.

Any ladies?

Or am I alone a conscious rejector of this Programme? Hope not.

I suppose you have your own reason for opting out but at the end of the day it's a two minute test that could potentially save your life. It's obviously totally up to you but like I have said you have to accept that if there is something wrong in the future you made that decision to opt out for whatever reason that may be 

Hi,

 

I don't mean to sound harsh as everyone is entitled to their own choice and opinion, however i think opting out of screening is an extremely foolish thing to do.

I don't understand why someone would opt out of something that could potentially save their life. I've had CIN3 / Severe high grade pre cancer previously, and have just found out that CIN1 has returned. Without the screening and treatment i've had, I probably wouldn't be here.

 

There are hundreds of thousands of women who have had their lives saved by a simple screening process, which Jo's Trust etc are working hard to raise an awareness of.

 

To opt out might seem the easy option now, but don't let it be one of regret in the future. Take the time, and go and have the test. I'm not sure of your circumstance and whether or not you have family / friends etc. I would just say do it for them.

 

 

 

I opted out of screening in 2015 after refusing to screen for 15 years before. I found smears agonisingly painful and would come home and bin the knickers I'd worn and scrub myself In disinfectant because I felt so violated. I hated the pressure put on me to submit to the test. I was bombarded with letters and phone calls. 2 years ago I had another invitation and decided enough. I had to take to Google to find out how to opt out and stop the letters and actually I never opted in the programme in the first place!  I then found out that actually it's not an accurate test and that at 53 I'm extremely unlikely to be HPV+Anyway. should I decide to test in future I'll order a HPV SELF test on line. I will never have a conventional  smear test again. I feel not enough information is provided  about cervical  cancer. ..CRUK state our lifetime risk of cervical  cancer  is 0.65%. As a lifelong non smoker my chance of getting lung cancer is 8%.I'm more likely to develop  breast cancer but I refused a mammogram and never heard a word about that!

In all honesty I don't think this is an appropriate place to post this.  I have empathy for you but not sympathy as I have stage 4 cervical cancer and I cannot understand why you would put yourself at risk.

I wish you health and happiness

 

Hello,

 

With due respect to those who suffer from this type of cancer, I must disagree that this discussion should not be here. It is a valid choice. If it does not get discussed here, where else do you want it to be discussed? The Trust claim they provide good quality information on cc and smear tests. Opting out is a part and parcel of the discussion about smear tests.

 

Perhaps I should explain my reasons for opting out.

 

  1. I was born and raised in a Central European country so I did not grow up with the campaigns about smear tests and the stories of being saved by them in the media any time the tests come up. We are recommended to have regular gynaecological check, smear tests which are a part of them. But it is up to us to be checked out. Maybe that is why I am able to doubt them.

  2. The message that it saves lives sounds inflated to me. It does help, admittedly, but to reduce the risk of dying from the disease. In no way is it going to save someone from dying from something else. The risks with this disease are 0.65%, some state 1.00% on the Cancer Charity website, other cancers are more common. I have myself enough that might potentially become an issue in later life and have a higher chance of dying from it.

  3. Lack of unbiased information on the tests. The facts seem to have been carefully chosen. You can try googling logical questions such as … If the mortality was reduced by 70%, there is no information to see what it was before. If unscreened women are most likely to be diagnosed with cc, what percentage of those diagnosed get regular screens and what do not. Similarly, the deaths from cc are in those who are screened or unscreened? Why are fewer women getting screened? It is impossible to google these facts, apart from the last one that is very pro-testing biased. Believe it or not, you do not come across these even in the yearly booklet by the Screening Programme. Alternatively, you can ask charities, they will not provide you with the information for a bizzare reason.

  4. Lack of information and public debate about the risks: One of the risks is for example over treatment. It takes a lot of researching to find the information in Medical Journals that for every diagnosed case of cc, there are several women (3 or more???) who receive unnecessary treatment to their cervix. Also astonishingly, if the mortality was say 6.000 a year, about 270 000 women in the UK are referred for further investigation and tens of thousands get biopsies done, out of those thousands, many thousands have treatment to the cervix. Googable in the Annual Booklet by Screening Programme. It is a horrifyingly high number. According to a study done in Bristol area, 1000 women need to be tested for 35 years to save one women from cc.

  5. Lack of respect for woman choices: why is there no discussion about the pros and cons. T is just very plain in this country just go and get tested. The other issue is invitation for something that no one has opted in for and being sold the tests at every opportunity. This would be considered illegal in my home country. Why?

     

 

 

 

I understand that it is very difficult for some ladies to get tested as they despise the experience. I would rather be subjected to two mins of lying there with my legs open whilst they take a sample than sit there worrying/wondering if I have cancer and if I did by then it would probably be my own fault for not getting myself tested. Each to their own but I would just like to point out that yes, there is sufficient information about cervical cancer out there if you look for it

Hello Beckster, no test will guarantee you that the result is 100% accurate. And the smear test is not. You may still get cancer even if you screen and there are such women on this website. Ridiculously in my case, when I was still a virgin, I would be offered the test. Can you tell me what they wanted to test me for of it is spread via sexual intercourse? The same goes for being asked to test for sexually transmitted diseases. The most ludicrous test I was ever offered as a never sexually active woman several years back!!!! To give you a different example, my boyfriend's dad had an MOT screening health tests done in his 70s, bloodwork, scans, ultrasounds, heartchecks. He was told he was in perfect health. And 2 years later he did suffer a heart attack and eventually died of cancer that he was not supposed to get at all. This is screening and not a diagnostic tests or tests. It does have its limitations. You can develop a myriad of conditions that will go back to your bad habits, poor diet, lack of exercise etc and will not be cancer but still serious. I for example have polyps in my bowels and would never agree to have them removed unless they were causing me symptoms. The risks of the surgery might be greater than the benefits. What I am regretting though, is not exercising enough as am starting to get a bad knee and surely will have a knee surgery later in life...and am in my late 30s now

Hi, 

I totally agree that there should be a test to help identify women with cervical cancer. However, trying to help them should not be at the expense of harming other healthy women. Thousands and thousands of women must be tested to find cc and treated. In a medical journal it said that for every case of  cervical cancer diagnosed 3.85 women need to get unnecessary treatment and have damaged cervixes. There needs to be a different way of testing. These figures are not acceptable to me. That's why some women will choose to opt out and live with the risk. 

Beckster,

Yes there is a lot of information out there but incomplete and biased towards testing. As I posted above, why can I not Google those questions, why will no one want to answer them, such as this charity? They will only tell you the usual stuff that it saves lives. I am putting my life at risk by not testing perhaps but I am doing it all the time, every day with ordinary stuff. Everyone ultimately accepts there own risks. 

Beckster 79 having smear tests isn't guaranteed to save you from cervical cancer.  The test picks up just a few types. The papers are full of stories of women who died despite attending every smear they'd been "invited" to.

Absolutely Marjusa!  Having read as much as I can and weighing up my risk profile I conclude I am extremely unlikely to have HPV. I'm really annoyed I was never given any info by healthcare staff just told you're a woman you need the test. As a menopausal woman I'm more likely to produce an abnormal result  as primary HPV is still being rolled out. If I decide to test in future I'll order a self test kit from Superdrug online. I'm happy to live with the 0.65% risk of developing this rare disease. 

Katrehman: I think you should re-read my above comments as I never said that the test would guarantee to save your life, I said 'I suppose you have your own reason for opting out but at the end of the day it's a two minute test that could potentially save your life. You say that the papers are full of women who have been to every single cervical smear test that they have been invited to and still they have died....yes, I admit that this does sometimes happen and if this was a ridiculously high number then it would need to be investigated. No test is without error so why get tested for anything at all is effectively what you are saying. Anna Sparkles im glad that you have attended every single cervical smear that you have been invited to and wish you all the best for the future. I am due to go for my smear test soon and I would rather do that then sit and worry stuff 

Beckster I'm sorry didn't mean to upset you!  Yes it's a 2 minute test BUT having weighed the evidence I'm happy to decline and live with the tiny risk. 0.65%v 8% risk of lung cancer even though I never smoked. I also decline mammograms. ..for every woman helped 3 could end up having treatment for something that would never have harmed them. Ditto smears. I would prefer not to have chunks of cervix chopped off for something that might have never harmed me! But I respect everyone's decision. 

Okay, you clearly not going to listen so it's up to you. All I will say is Google Tracy Kiss cervical cancer and read her story. I personally don't think it's even worth risking not going for a second. You say you would rather not have chunks of your cervix chopped off for something that might never have harmed you... firstly it wouldn't be 'chunks' they only take a very small sample of the cells and secondly I would rather be safe than sorry that's for sure but like ive said read Tracy Kiss' story and what she has been through 

I hate this thread