To refuse a smear test (may be triggering)

[Toooldtobearsed]

Background: I have BC 6 years ago. I had a lumpectomy, then mastectomy, chemo, radiotherapy, a second mastectomy, reconstruction.
I then was diagnosed with ovarian cancer, had an oopherectomy.

I am 53 and have always said that that is it. I would choose to have no further treatment should cancer pop up again, and to be fair, it may well - I am considered high risk and should still see my oncologist every six months, but took the decision to stop, due to the fact that I would refuse further treatment.

So, I am being hounded by my GP to go for a smear. DH wants me to go, but I don't see the point. If something bad came back I would be forced to face that final choice and I would rather continue in blissful ignorance until I dropped. DH supports whatever decision I make, but is hurt that I won't do everything possible to still be with him in old age.

So, am I being unreasonable to choose to simply leave my future to fate?

It is quite selfish, and immature. Like Harold, I cannot reveal too much, other, but treatment for relapsed cancer is often absolutely horrendous. Incredibly so.

I would not want my own parent to go through that for my benefit, no, or even my children's, IF that was not their wish. OR any other procedure they did not want following such treatments.

I would not be angry or hold it against them, either. Having stood alongside someone who has been through that, I would feel awful about guilting them into anything they didn't want.

I understand.

In fact, there are some forms of cancer, if I were diagnosed with them tomorrow, I would do nothing.

Werk: what you said about being patronising because I said a smear test is over quickly and no big deal and because it only detects precancerous cells, is a surprise to me. I wonder why you said that? Do you think a quick wipe over the cervix is a big deal compared to having unnecessary cancer?

By the way I wonder also about the story you recite. I'm not saying you didn't read that on the internet but unless it was secondary cancer from somewhere else in the body, then I find it hard to believe there isn't a little more to that story than meets the eye. Speaking as someone who worked for the NHS 18 years and same across an awful lot of this sort of thing.

It's entirely your right to decline a smear test.

They are not compulsory.

Cervical screening is a SCREENING tool; it is not a diagnostic test. It aims to identify cells in the early stages of change (and cells in your cervix are changing all the time, they are supposed to do that) and allow the opportunity for closer monitoring or treatment should the cells become more abnormal.

Think of it a bit like having your blood pressure checked, or your eyes tested. A thing you do regularly to ensure any potential problems are picked up early.

But at the end of the day the choice is entirely yours. If you definitely don't want a smear then pop in to your surgery and ask for the form to sign that ensures you are taken off the recall list.

It is very patronising to talk that way to a person who has been to hell and back having had cancer treatment and treatment again for secondary cancer and who feels done.

And the poster was called MrsCarrot. It was some years ago, but she did in fact have a form of aggressive cervical cancer, NOT caused by HPV, not mets and not secondary, and required radical hyster and treatment when she was only 31. But thanks for calling me a liar and declaring yourself an expert oncologist because you worked for the NHS for 18 years. . Says more about you than me.

Let's hope you are a bit more professional and compassionate towards your clients than you come across on here.

Entirely your choice, Tooold. You do what you feel is best.

Sorry, but that's bullshit. Firstly, choosing not to have a smear is not "choosing not to live" for the vast majority of women.

Secondly, refusing chemo/surgery is exactly that. And it's an individual's decision to make. You do not give up bodily autonomy the moment you concieve and for ever more (unless you are a religious evangalist).

Thirdly, neither you or anyone else has the right to suggest that another person should carry on fighting/try anything/suffer just to make you feel better. Choosing chemo, or other treatment is no guarentee of living at all unfortunately but its bloody gruelling and can have many awful side effects. I hope/believe if your mother did have metasisized cancer and could not longer face treatment you'd be a damn sight more compassionate.

OP I think you should get a smear done because early abnormalities can be treated fairly easily. I also worry that you may be avoiding medical care when you need it just to avoid being put in a position of having to make the 'big' decision. Or could it be that this particular test that has triggered the trauma associated with your original diagnosis and treatment? But it is absolutely a decision you should make in your own best interests.

Don't conflate the two.Cervical cancer is caused by a virus. A smear is just like getting a flu jab.

Err, no. A form of cervical cancer is caused by a virus (HPV) but it is NOT the only cause. Abnormal (pre-cancerous cells) are not always caused by HPV. I had abnormal cells following my smear last year, CIN3, and had to have a colposcopy and LLETZ treatment. Whilst I was at it they tested me for HPV and I was NEGATIVE.

So HPV is often responsible for the main type of cervical cancer, squamous cell, but many other things can play a part in determining whether you get cervical cancer or not. Making such a wide sweeping statement that it is only caused by a virus is very misleading, not to mention wrong!

My smear test did reveal cancer, which I know is unusual. I had a hysterectomy which wasn't nice, but I didn't need chemo as it hadn't spread to the lymph nodes.

Yes, the fear was there until I knew I was ok. I haven't been through what you have, but if I hadn't had that smear and the cancer wasn't picked up early, then it's entirely possible that I wouldn't be posting today. So while YANBU to feel how you feel, it would be a shame to lose your life for something that could be preventable. Like others have said, smear tests mostly prevent cancer in the first place, by picking up precancerous cells. Even if it is worst case scenario, then it may still be worth it, as in my case.

Only you can decide, but I would have the smear if I were you.

Tooold I totally get where you are coming from. 2 Years ago I declined a smear test as my relationship had broken down horribly four months previously, I had recently been diagnosed with an autoimmune condition that requires lifelong injections and was being investigated for breast cancer.
I just felt at that time that if the test was positive I would do nothing as I could not cope with any more so having the test was pointless.
I had a recall a couple of months ago, whilst I am still not divorced I have a totally awesome solicitor who is dealing with that horror, I was lucky enough that my breast surgery was currative and currently my autoimmune condition is under control. So I felt able to face up to a smear test.

I was really aware that my decision two years ago could have consequences, but still if I had my time again I would still make the same decision.
I understand that sometimes you can be so physically and mentally exhausted that even what seems like to others a relatively small procedure can seem to much. When I made my decision I knew that going to have that test would have tipped me over the edge and that I would stop coping for my family. I wasn't that I choose not to live, but that I choose to continue to cope only with what I had to at that time.
Only you can make this decision and I am sure you will make the right choice for you .

Sorry - The smear test itself didn't reveal cancer. It showed abnormal changes, which upon further investigation, proved to be cancer. This is unusual though.

It is you choice however I don't think you are being very logical. The whole point of a smear is to catch cancerous cells very early before chemo etc would be necessary.

for you OP.

I think you are being a little unreasonable, but absolutely not on the cancer side of things.

Cervical cancer isn't a genetic disorder. To get it you have to have been infected with virus called the human papillomavirus, which is sexually transmitted. (However, this virus is incredibly common - most women have it and clear it straight away without any problems. In a few cases, for some reason, it persists and starts to cause changes in the cells that can lead to cancer if they are not stopped).

The aim of the smear test is to find those cells before they even become cancerous. They can then be zapped in a painless procedure that takes a matter of minutes. This is absolutely nothing like the gruelling treatment you have had in the past - it is literally like having a scale and polish at the dentist! Again, to emphasize, this is removing cells that are not cancerous, but that might turn into cancer if left untreated.

I understand that you may well feel like you don't want to be pulled around by medical professionals any more than is necessary, I really do! But this is honestly a quick and easy thing to have done.

My oopherectomy was due to BC mets, my lymph nodes were all affected, therefore, I have always assumed that should there be an issue with the cervix, it would be BC related - game over.

As I said earlier, I stand corrected.

I think my main problem is that everything came as a complete shock. My BC was diagnosed despite my GP referring me with a cyst. That was a WOW.
The second breast was screened 'as a precaution'. I never expected it, but again, more cancer. I had no idea of what the lymph nodes did, so was shocked when the consultant kept saying he was sorry, but 24 out of 24 were affected.
The ovarian- another Good God moment, totally out of the blue and then to be told it was BC mets was a kick in the teeth.

I was never ill, never had any symptoms, went into every consultation like it was almost a game, nowt wrong with me! But there was. So for everyone reassuring me about the possible outcomes of a smear, please understand I would expect another shock!

Toool - as I said earlier. Of course you shouldn't do anything you don;t want to do. I do genuinely say this with up close and personal experience of cancer.

But as I say refuse treatment/investigations from a position of knowledge - anyone who has pointed out that HPV doesn't cause all cancers has kind of missed my point (I was running out of the door to a lunch and didn't have time for a detailed analysis which in any event I don;t think is relevant here). It causes more than 90% of cervical cancers and even the 10% of changes not caused by HPV would still be picked up by a smear.

I just wanted to be sure that you understand what a smear tests detects and that it wouldn't in any way be linked to your existing cancer. Not that your cancer couldn't metastasize into your cervix/uterus/anywhere else but that a smear test would not pick this up (as far as I'm aware).

Cervical cancer is on the whole a very slow developing problem which is why it's possible to have three yearly smears and still have a couple of attempts at picking up changes in your cervix before it becomes a problem. There is no need for you to make a decision imminently - have a think about it and let it ferment in the back of your mind and think about some of the points that have been made. Give it another 6 months then revisit it.

That way you can make a decision knowing what you have said no to, not just as a knee jerk (though understandable) "no more treatment" reaction.

Sounds ok to me, as long as you make sure you haven't burned your bridges first.

I remember on another thread some people had found doctor's surgeries get a bit insistent about smear tests and this may be to do with target payments for screening uptake. I've never had one. I'm still alive.

I completely understand your position and think that it is your choice to make, however, I can also understand your husband's point of view and his belief that he would do anything he could to extend the time you have together. He obviously loves you very much, and I can sympathise with the conflicted feelings he must be having over wanting you to be happy and feeling as though you are 'giving up' on spending your old age together.

Personally, I cannot imagine not wanting to know, but then I am always gobsmacked that people choose not to find out their babies' sex when pregnant because I always like to be in full possession of the facts, even if there is absolutely no way it will change the outcome.

If you are looking for ways to reach an agreement with your husband, then that might be harder - love is not rational and the heart will overrule the head in most cases. Do you think he wants you to have a smear because he thinks he will be able to convince you to have treatment if they do pick something up, or just because he wants to know if his time with you is going to be limited so that he can ensure that he treasures every moment with you?

OP - I have been where you have - breast cancer and the full treatment including mastectomies, chemo, rads, node clearance, hormone therapies, oopherectomy - the works.
It has left me with severe vaginitis making smears impossible unless they give me oestrogen which I cannot have because of the cancer.
It worries me terribly that I cannot have it done as I have always been very diligent about smears.
But I have had lengthy discussions with gynae team about it and evaluation of my risk. I have always had clear smears - and I am not far off your age. They think risk is small. But then risk of BC was small too.

Can you get a gynae referral? Talk it through with someone empathetic and informed?

could it be that the Gp has targets to meet for smears being taken for the year!!
I respect your decision, your body your choice and a very brave one too!

Surely quality of life trumps quantity of life every time

I'm sorry you've had such a shit time OP.

As others have said, a smear doesn't usually detect cancer. I had abnormal cells, CIN2, 5 years ago and had a colposcopy. I was in and out, awake the whole time and while it was uncomfortable it wasn't unbearable (my HPV test was negative, by the way). I had regular smears up until June this year when they've gone back to 3 yearly. I suppose what I'm saying here is, it's twofold. IF you have a smear and something is found, it is likely not to be cancer and you can choose to have minor treatment to hopefully prevent it turning into cancer. The worst case senario is that something sinister is found, and you have to decide whether to go through more invasive treatment again.

Have you had enough, or are you just frightened of what may be found?

It is ultimately your decision, and I wish you well whatever happens.

I'm sorry you've had such a shit time OP.

As others have said, a smear doesn't usually detect cancer. I had abnormal cells, CIN2, 5 years ago and had a colposcopy. I was in and out, awake the whole time and while it was uncomfortable it wasn't unbearable (my HPV test was negative, by the way). I had regular smears up until June this year when they've gone back to 3 yearly. I suppose what I'm saying here is, it's twofold. IF you have a smear and something is found, it is likely not to be cancer and you can choose to have minor treatment to hopefully prevent it turning into cancer. The worst case senario is that something sinister is found, and you have to decide whether to go through more invasive treatment again.

Have you had enough, or are you just frightened of what may be found?

It is ultimately your decision, and I wish you well whatever happens.

Your body, your choice. Cervical cancer is still a rare cancer. Your risk of getting the cancer is the same whether you screen or choose not to screen. A smear test will not stop you getting cancer.

Personally I don't have smears because I find them too traumatic (because of my own personal issues).

If you are making an informed choice then it's up to you; but it sounds as if there are still things for you to learn about smear tests. Maybe look at a leaflet or have a chat to a Practice Nurse if you haven't already, then make your decision.

Werksupp, there's no need often worked up! I began with saying the OP was not being unreasonable, and didn't even discuss her very difficult path with cancer, I only discussed the question at hand with regard to smear testing.

I don't call you a liar either; if you read back you'll see I actually said there would be more to it than meets the eye. For example, a young person of 31 with certain cancers would find they are much more aggressive than they would be in an older person, say 22 years older like the OP.

I googled your mrscarrot and have cut and paste my finding below. On short, she seemed to say she had severe dyskaryosis, and a local anaesthetic procedure to remove the precancerous cells. I think your recollection must be a bit blurred and perhaps you mixed her up with someone else (sill not calling you a liar, just to be clear!) but that's not surprising since it was 6 years ago.

And I was always so very understanding and profession, thank you for your concern. Although I do think there was an unnecessary barb in your comment about that

27/02/2008 11:51
MrsCarrot
I had this last week, justwater, and also four years ago.

If you need treatment there and then they give you a local and remove the affected area, it's not pleasant obviously but fairly straighforward and over quickly. Make sure you ask any questions you want to, some of the doctors can rush you through but you are entitled to have explanations.

Sometimes it needs repeating again (like me) but it isn't cancer, it's an abnormality with potential and you will have it removed if necessary. Try not to worry.

pickled has succinctly covered what I was thinking.

I really think you should consider speaking to a HCP OP, as your idea that developing cancer and not having treatment will let you die in "blissful ignorance" isn't what would happen.

I have also had an oopherectomy and I could my lucky stars that I am still here. You're a young woman and life is worth living, maybe you need some help coming to terms with the way your treatment has left you feeling.