How worried should I be after severe abnormal smear?

[Abitofaworry]

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 does anyone have experience?

[Abitofaworry]

following smear

[earlierintheweek]

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]

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]

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]

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]

Bump

[Wewereherefirst]

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.

[Abitofaworry]

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

[Wewereherefirst]

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]

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]

That's terrible that they only just noticed 18 months later 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

[willyhaschips]

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]

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]

Thanks bela, but what does that cytology bit mean?

[digerd]

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]

opps
computers

[Abitofaworry]

.

[BelaLug0si]

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]

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]

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]

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

[littlemissnormal]

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]

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]

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

[Abitofaworry]

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