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How worried should I be after severe abnormal smear?

(50 Posts)
Abitofaworry Sat 09-Feb-13 09:05:43

I received a call from the gynae unit yesterday saying that I needed an urgent appointment rolling smear last week. This was the first I'd heard back about it. The woman on the phone couldn't tell me anything as she was just the appointment booker.

Following a few frantic calls I got to speak to my GP who said the results said 'severe Dyskariosis' but there was no cin number. However a quick google tells me that severe is pretty much interchangeable with Cin 111.

I'm now terrified I have cancer. My last smear was normal but was five years ago now due to having had two babies since.

I have my appointment on Thursday for colposcopy. I'm not too worried about the procedure but TERRIFIED of the results of the biopsy coming back as saying I already have cervical cancer. I've had a horrid night filled with panic attacks and nightmares sad does anyone have experience?

Abitofaworry Sat 09-Feb-13 09:06:12

following smear

earlierintheweek Sat 09-Feb-13 09:09:41

Not much useful to say but I can hold your hand.

I had C1N1's a year and a half ago. I had the loop to get rid of them. I was like you I had horrible nightmares - about dying and leaving my children and being told they'd got it wrong and it was advanced cancer.

I've been clear since, although there's always a slight worry in the back of my head.

I'll be thinking of you on Thursday.

BadBuddha Sat 09-Feb-13 09:15:38

Try not to worry. I had exactly the same about 8 years ago. Had laser treatment and yearly smears since have been all clear. I don't even think about it any more.

Swallowedbyasnake Sat 09-Feb-13 09:26:02

Hi I am a doctor. CIN 3 is not cancer. It is a precancerous condition. Some women with CIN 3 left untreated may go on to develop cancer. So CIN 3 is surgically removed and you are followed up to make sure it is all removed and doesn't come back. Severe dyskaryosis is the equivalent on a smear of CIN3 but occasionally there can be disagreement between the smear and biopsy, so that's why you get a biopsy too. CIN3 is vastly more common that cervical cancer.

Abitofaworry Sat 09-Feb-13 09:32:46

Thanks everyone, that's a bit reassuring.

swallowed what I'm confused about is can the smear actually detect cancer? I understand that cin 3 is not cancer but if there is cancer there would the smear have detected it?

Should I be at all reassured by the fact that I had a normal smear five years ago? Also that I haven't experience bleeding during a recent pregnancy or after sex (although admittedly I've not tested this many times recently!)

Abitofaworry Sat 09-Feb-13 10:06:44

Bump

<hand holding> I'm at the same stage as you. AFAIK the smear detects abnormal cells and they could be pre cancerous, but the biopsy will tell more.

I'm having mine removed under GA next week. Whatever the results it is better to know than not know. smile

Abitofaworry Sat 09-Feb-13 10:15:25

Thanks, I will hold your hand back.
How come you are having a GA? Is that for the coloscopy?

I had my appointment for my colposcopy last Tuesday but because of it's proximity to the vaginal walls the gynae couldn't do it with a local anesthetic- mostly it's done there and then.

I found talking to the gynae very reassuring and while I'm scared for the results, I'm positive it will be okay for us both.

digerd Sat 09-Feb-13 13:24:09

30 years ago, I got a letter 18 months after my last smear < they had just noticed in their records> to tell me as my last smear showed abnormal cells, I must make an urgent appt to have it checked. I had 2 ops under GA in 2 weeks - biopsy, results and another op to take it all away. The results were Displasia grade 4 < CIN111 called these days>. All subsequent smears have been fine.

Abitofaworry Sat 09-Feb-13 18:08:29

That's terrible that they only just noticed 18 months later shock but great that everything's been fine since.

I have calmed down a bit today, trying to be a bit more rational. Still, there is always the fear that I'll be one of the unlucky few where the biopsy shows cancer already there sad

willyhaschips Sat 09-Feb-13 19:29:45

Try not to worry. Twelve years ago I had a smear that showed CIN III and panicked like mad. Had colposcopy treatment under local anaesthetic and annual smears thereafter for ten years. No recurrence or further problems. Although it's a bit shocking when you get the letter it's important to realise it's not actually cancer, merely cell changes that 'could' lead to cancer in the future.

BelaLug0si Sat 09-Feb-13 20:28:25

Hi
Can I suggest you have a look here it is the colposcopy society website. I've linked to the women's questions answered section. It has loads of information on what the results mean and what the investigations are like.
Another place to get support is Jo's Trust, which is for women who have cancer and pre-cancerous changes - there's loads of info and a support forum there.

Re Digerds experience - the screening programme now operates direct referral to colposcopy (as you found from getting the phone call) to ensure women get investigated for abnormal results.

Cytology can pick up changes suggestive of cancer, but a tissue biopsy is needed to actually assess what grade of CIN is present (dyskaryosis is the term used to describe abnormal cells in the 'smear').

If you do need treatment then you don't necessarily need a GA, most procedures can be done with local anaesthetic. The BSSCP links have more info. It's possible you may be offered treatment on the day; so be prepared to get a lift or taxi back home.

Hope this info helps a little at this worrying time. I work in cervical screening but have also had a LLETZ so have some understanding of how stressful it can be.

Abitofaworry Sun 10-Feb-13 16:43:04

Thanks bela, but what does that cytology bit mean?

digerd Sun 10-Feb-13 17:09:01

It was 30 years ago, and was a shock, but didn't ask why it took 18 months to let me know. I guessed it had been over looked, somehow. No computors in those days.

digerd Sun 10-Feb-13 17:11:56

opps
computers

Abitofaworry Sun 10-Feb-13 19:41:11

.

BelaLug0si Sun 10-Feb-13 22:26:25

Cytology is the assessment of the cervical cells taken in the smear. The cells are rinsed into a preservative fluid and then sent to the lab. The cells are processed, dyed and placed on a glass slide. The cell deposit on the slide is then examined by at least two trained cytologists; a sample reported as abnormal will usually be examined by three scientists/cytologists.
The cells in the smear (cytology) are scraped from the surface of the cervix, whereas histology looks more at structure of tissue.

BelaLug0si Sun 10-Feb-13 22:31:59

Digerd
It was in 1988 that a structured screening programme with failsafe mechanisms was brought in England. This was to prevent delays like you experienced because its not acceptable and shouldn't happen.
One of my roles is to check that women referred for investigation have had the opportunity to attend and to flag to their GP if they haven't attended colposcopy.

littlemissnormal Sun 10-Feb-13 22:32:09

I have had annual smears for 3 years now after going through the same as you and all have been clear.

The panic is awful though isn't it, I was crying and worrying about my kids and getting myself in a right state.

I went in for a chat to my practice nurse and she really helped reassure me. She explained that the CIN cells are like a mole on the skin. So they're not cancer but could become cancerous. And as they're not in a place you can easily check them like a mole is, it's best to remove them.

I don't know why, but that really helped me to put it in perspective in my head.

Abitofaworry Mon 11-Feb-13 07:14:10

Thanks bela for that explanation, and thanks littlemissnormal too. So glad everything is back to normal for you. Did you have cin 3?

littlemissnormal Mon 11-Feb-13 07:32:04

Yep CIN3. I had LLETZ treatment to remove the cells which is not much worse than a smear, apart from the burning smell!

The staff were great and didn't belittle me for my panic but explained everything and were really patient.

Mine was caused by the HPV virus.

digerd Mon 11-Feb-13 18:14:01

Bela
It was 1982, when I got the letter in the summer, so smear must have been Dec 80 or Jan 81 - I can't remember exactly, just that it had been 18 months previously. I had 3 appts. 1st was to look and was told it was all black and needed quarterising. Next was an 8 day stay in hospital after the biopsy and after coming out on the Sunday, I had a letter following Thurs to say a bed was booked for me coming Sunday for the "cone biopsy" on Monday as the rim was full of - can't remember the words they used but was ominous.
I was grateful and amazed how quick the 2 ops were done - 2 in 2 weeks. And 16 days rest in hospital to boot. What service. Full Board - not that the food was 5 star.

OrangeLily Mon 11-Feb-13 18:27:19

Unusual but I've had the same and there was barely anything there. My consultant nearly fell over smile

Abitofaworry Mon 11-Feb-13 19:43:25

That must have been great orangelily, I hope that happens to me!

I keep swinging from calm and rational, to full on panic that I have already got advanced cancer and won't see my babies grow up sad

OrangeLily Mon 11-Feb-13 21:34:39

abitofworry it was brilliant and I feel very lucky! Still watched regularly but feel very blessed.

Saying that three of my friends have had to go for loop excision and they are all fine now too. Even if you are not like me and a freaky case then then with a treatment you can be OK too.

Got my fingers crossed for you. smile

SimLondon Tue 12-Feb-13 00:07:10

If you already had advanced cancer then surely there would be symptoms.

dondon33 Tue 12-Feb-13 18:26:55

I endured 9 years of CIN 3 cells and treatment Abit from the age of 18 - 27. I had to attend the Colposcopy clinic every 6 weeks at one point, every time they thought they'd got them all the buggers came back angry I had LLETZ treatment twice, numerous laserings (is that a word? I don't think so but I'm using it!) what felt like a million biopsies and in the end they gave me GA, put me under and removed them for my last two treatments - which finally done the trick.
I'm actually surprised I've any cervix left tbh - but I have and it's now very healthy and normal...apparently smile
You mention you've just had a recent pregnancy?
I was pregnant twice throughout this time and was told by the Gynaecologist that pregnancy can exacerbate the situation, I don't remember her saying it would cause the cells to be there but she definitely said the prior.
I was recalled every 6 months after they finally got rid of the cells, then yearly and now I'm on a normal 3 year call up. I've had no problems since.

Hope everything is ok and will be thinking about you, I agree with the last poster - you'd have some kind of signal that something was wrong if it was advanced. It's so easy to say but do try not to worry too much ((Hugs))

Abitofaworry Tue 12-Feb-13 19:27:01

Blimey poor you DonDon, you really went through it. Thank goodness you are 'normal' again now!
Thanks for the good wishes, I just want it over with now.

Abitofaworry Tue 12-Feb-13 19:28:44

It's worrying what you say about pregnancy though as I've actually been pg twice since my last smear sad

dondon33 Tue 12-Feb-13 20:41:19

It was a bloody nightmare at the time but had to be done. I've just started TTC after a huge gap from last Ds and I'm a little anxious it could start again.
However, I'm lucky now in that the country where I now live Women are routinely tested by the Gynaecologist every 6 months, so I know if it did come back it'd be picked up very quickly.

They'll be able to see at the colposcopy appt how much of the area is covered. I know that doesn't relieve you much and you'll still have to wait for biopsy results but if they can put your mind at ease even a little it's better than you remaining in a state of panic.
By exacerbate - I don't know if she meant make the existing present cells worse/multiply or if she meant the pregnancy hormones were more likely to make it happen if your predisposed to abnormal cells? it was all so long ago.
I also wonder if there's a genetic fault involved - my mum had similar to me in her mid 20's and one of my sisters also had a few treatments too.
I'm willing Thursday here for you too x

spiderlight Tue 12-Feb-13 21:07:12

I've had CIN III. Twice, in fact! I am now fine and have had three clear smears in a row. As the lovely, lovely colposcopy nurse told me, you're 'in the system' now and whatever is there can be treated: it's people who don't go for smears who end up getting full-blown cervical cancer, the vast majority of the time. You'll probably have to have a colposcopy (which is a bit like an extra-long smear test, possibly while looking ast your own cervix in widescreen) and possibly a loop excision, but while that's a bit uncomfortable and undignified, mine wasn't painful at all and the medical staff were incredibly kind and sensitive, and I was home by lunchtime both times. In 95% of cases that will be that apart from a follow-up colposcopy in 6 months. I was awkward and had to have a second loop excision, but I was fine after that.

thanks

Abitofaworry Wed 13-Feb-13 07:24:43

Thanks Spider, that's reassuring. I'm not worried about the colposcopy or loop thingy, it's just the worry that I already have it!

dondon33 Wed 13-Feb-13 10:22:46

It's getting closer Abit I'm still willing it here for you and still wishing you good luck.

On a lighter note about the colposcopy visit, after reading Spiderlight's post I remembered my first visit...... So I got up on the bed thingy, or rather it's sort of like half a bed and ends where your bum is.....popped my legs up in the stirrups and tried to relax as much as I could while the lovely Gynaecologist was at face level with my lady garden blush smile So far so good.....

At some point during her explanation of what was happening I noticed the TV hmm and the nurse present explained that when the Dr started I could watch what she was doing on the screen via the camera that would be taking a visit to my nether regions.

"Cool" I thought

So she got cracking with me watching her every move smile I'm not a squeamish person at all and I don't really know what happened but.....
I was fine while she inspected my cervix - I remember saying 'ooh! I didn't expect it to look like that, it's like a pair of lips' then she took the biopsy while I was still happily viewing and bam! it knocked me sick, I felt myself going from pink to green to white smile
The nurse noticed, gave a little laugh while explaining many ladies have the same reaction and advised me not to watch next time smile (I took her advice)

It wasn't even bad/gory what it involved and I have no explanation for how I reacted, I'm not sure if I thought I could feel it because I could see it iykwim but I definitely couldn't as I knew she'd numbed me before starting.

Moral of my story - If you're squeamish then definitely don't let your eyes make contact with that bloody screen. Or if like me, you're a little curious - look for the first part then avert your peepers before the biopsy happens smile

topsi Wed 13-Feb-13 17:25:48

thank goodness for the NHS and its screening processes! Without them where would we be? The NHS is getting such a slating recently that I thought I would Just throw that one in.
A few years ago I had CIN 1, had a cone loop biopsy and been clear ever since!

dondon33 Wed 13-Feb-13 18:11:26

Well said topsi We are lucky to have have it but I just wish they'd routinely test younger people. I forget why they gave me one so young - possibly the over 25 rule wasn't enforced then, but I dread to think what would have happened if they hadn't.

notapizzaeater Wed 13-Feb-13 18:19:12

Ooh I remember the tv screen too and watching it - I was 19 and can remember going home to dh being dead impressed it was a Sony tv !!! Had yearly smears for 10 years then onto 3 yearly, never had a problem since and now 46 .... Good luck

dondon33 Thu 14-Feb-13 13:34:23

Thinking of you abit hope today went ok x

Abitofaworry Thu 14-Feb-13 13:50:53

Well I'm back. The consultant wouldn't do any treatment today as I'm flying on Saturday, but he had a look and could see it is definately severe just by looking.
He is going to do the loop thing in two weeks and biopsy. He reassured me though by saying it was definately just localised and hadn't spread. So I'm a bit reassured but still got a way to go before I can really breathe a sigh of relief.

Thanks for support, I will update in due course!

digerd Thu 14-Feb-13 13:56:13

Dondon
Well, I have never seen my Cervix as it was before, or since and one is never too old to learn new things about your own body - how interesting. I had to have the "whole rim" < as it was described so assumed it was a small circular thing> removed and more farther up and was called a CONE biopsy. I am now envisaging it as a slit with 2 lips? Or more like a kiss shape?
OP
Hope you are feeling fine when it's all over.

BelaLug0si Thu 14-Feb-13 15:04:53

Hi Digerd
If you have a look here part way down the page it says screening DVDs. There's online videos which have pictures of the cervix and cervical cells.

dondon33 Thu 14-Feb-13 16:11:26

Oh Abit I know that's not the best of news but it's better than you imagined, there's no way you'd of gotten out of there if the Gyn thought it was in your best interests.
Where ever you're off try to enjoy, leave your worries at the airport as you leave because they'll bloody happily be waiting on your return hun.

Digerd kind of like both smile - mine looked like small fat lips, a pale pinky colour you can clearly see the slit/gap - probably more noticeably so if you've given birth.
I can't find on that link a view as we see it with the camera.

BelaLug0si Thu 14-Feb-13 19:17:50

I couldn't find the link earlier. This link is to the International Agency for Research on Cancer. There's a cervical screening section (which I think is fascinating and worth a read to see the different approaches based on setting and resources). The link above is to their colposcopy atlas.
this is to images of normal appearing cervix.
Don't click if you're squeamish!

dondon33 Thu 14-Feb-13 19:26:01

Thanks Bela

digerd Fri 15-Feb-13 19:28:03

Thanks dondon and Bela. I am intrigued. But been told my 30 year-old op left my Cervix wonky. And they took the lips away presumably, if they are the 'rim' that was mentioned.
One thing I do not understand about mine is, that after 18 months, and was checked, I was told it was black. ?

BelaLug0si Fri 15-Feb-13 21:57:01

Might be silver nitrate, it's used to stop bleeding chemical cautery or diathermy or laser - all of these could have caused it I think.
I'm assuming its not still like that?

dondon33 Sat 16-Feb-13 09:33:09

Ooh Digerd I have absolutely no idea.
The only way to know would be to ask the next time you're examined down there or of course, if you ever had to have the camera again.

I recently had the transvaginal camera paying a visit during a gynae appt and the Dr said- to initially look at my cervix you'd never know I'd had previous problems or had treatment, only if you're looking for some scarring can it be identified. I was quite surprised about that (and relieved as I'm currently trying to conceive) as I know during my last op they had to cut out quite large parts.
It must regenerate itself and do a bloody good job at it too smile

digerd Sat 16-Feb-13 11:32:25

dondon
I had been looking at your link and found it fascinating. I should have been more coherent. I meant before I had the op 30 years ago ,when going back due to the 18 month delay in them letting me know, and was checked. The nurse said it was all black and needed caurterising. But in those days they had no mirror imaging on TV. Think she used what was/is used for the smear test to look. And I went into hospital for the initial biopsy which said the whole rim was full of these cells - called displasia grade 4 then or Carcinoma in Situ and then went in again for the cone biopsy.
It was all taken away, and all smears since then have been OK.
So I shall never know why it was all black
Curiously, 2 years later I was diagnosed with a black melanoma on one arm, and my german Gyny told me it was the same type of malignant cells as my cervical one.

BelaLug0si Sat 16-Feb-13 19:28:16

Digerd - sorry I remember you telling me before that the cervix was black before the treatment. Melanoma comes from melanocytes which are different types of cells to the squamous cells in the cervix. I have seen melanoma cells in a cervical smear, they are quite difficult to tell apart from abnormal 'native' cervical cells. So it is possible (although quite) rare to have a melanoma of the cervix, so (bear in mind this is guesswork) you may have not had a 'classic CIS/CIN3'.

Did the German gynae have access to the histology report of the cone biopsy? Have you been followed up for the melanoma on your arm?

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