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AIBU?

Abnormal smear - please help. Panicking

106 replies

Babyowl20 · 17/02/2020 11:55

I had a phone call this morning from the hospital about my smear test results. They wanted to book me an appointment for this Friday because the results have come back as moderate.

I’m scared to google incase that means I have cancer or if it’s really bad. Has anyone had this previously and it’s turned out okay? I’m completely panicking. Sad

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Babyowl20 · 21/02/2020 17:57

The moments of panic are awful aren’t they. Every now and then I get a horrible sinking feeling in my stomach and it feels like my airways are closing a bit, or that I can’t get enough air in.

I swing between feeling really lucky that it’s been picked up early, and appreciative that we have screening like this in place, to feeling completely overwhelmed and scared - with that horrible ‘what if it’s worse than they think’ voice in the back of my mind. Then I remind myself how common it is and that the treatment is effective; that I’ve spoke to a specialist who was really positive about it being easily sorted, then I feel reassured, til the cycle begins again!

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amillionwishes · 21/02/2020 18:43

@Babyowl20 I keep thinking what if the smear tests in between me having CIN2 and now were wrong and actually it didn't sort itself BUT I know that's just me being anxious about it which is understandable.

She was quite cagey when I asked, which didn't fill me with joy but I suppose if she said it doesn't look that bad and it was then I could sue the nhs or something so she was erring on the side of caution.

Hopefully our letters don't take too long and we know what we're dealing with as soon as possible.

@InTheTempest that's a good story to hear, thank you. It does seem to go round in cycles doesn't it, I think I was always expecting to have abnormal cells again at some point! Glad your last biopsy was clear, hope it stays that way Smile

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Babyowl20 · 21/02/2020 19:05

I can understand your worries @amillionwishes - I think you’re right about them not wanting to give too much information until the results are back, its easy to over analyse whatever limited info or reaction we see too - the woman who was doing my colposcopy today looked like she was frowning a bit and my mind jumped to ‘is it really awful?!’ When she was probably just concentrating! She just reiterated afterwards that it looked like typical abnormal cells but it’s just the procedure to do the biopsy before any treatment.

Yes fingers crossed the results don’t take too long to come back - and we can have the treatment (if needed) swiftly and breathe a big sigh of relief SmileFlowers

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Whosamawotsits · 21/02/2020 19:28

I still have another 4 weeks to wait for my lletz results, those wait times are very common now- though they said the same for my colposcopy and they arrived within around 3!

And as others have said, your result doesn't mean that it's cancer, it's pre-cancerous and this is why we have these preventative measures in place, to stop these cells from evolving into cancer. It was explained to me as it developing in these grades/stages-
Cin1-> Cin2-> Cin3-> Stage 1a1 Cancer, Stage 1a2 Cancer and so on.

After a biopsy to confirm exactly which grade, CIN 1& sometimes 2 tend to be left alone and monitored as there is a strong chance that these will heal themselves when/if hpv clears itself up.
If the HPV doesn't clear itself and/or you have Cin3 it's then that they step in- like in my case where I had a lletz. The aim of this is to take away the high grade cells and clear the hpv so it does not develop into cancer. Even then, 1A cancers are removed with Lletz aswell so there is a long way to go before it becomes a very severe matter.

I stress to everyone and anyone who will hear it that they should have their smears. It could have been a very different story to tell had I left mine years longer!

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Babyowl20 · 21/02/2020 19:39

Thank you for the information @Whosamawotsits - as my smear and colposcopy seemed to be slightly different levels of seriousness, I am a bit anxious that the biopsy might be something different too. It’s strangely reassuring that the treatment for the very first stage/s of actual cancer are treated the same way, and that it is slow progress for the cells to change and get worse.

I hope the results come back okay - if you don’t mind me asking, do they test whatever they remove after the lletz? I thought it was smear, biopsy, lletz (if needed) and then a follow up smear a few months afterwards.

I will definitely shout from the rooftops the importance of smears after this experience. Obviously I already knew they were important, but I think being personally affected really hammers it home.

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Whosamawotsits · 21/02/2020 20:44

Yes! I was shocked when told, my assumption was that cancer automatically meant chemo/radiotherapy/some sort of surgery, I also didn't realise there were stages within stages!
My 2nd smear first appeared on smear as Cin 3, it looked like a mix of cin 2&3 to the consultant and yet the biopsy only showed cin2! He even discussed it at a meeting with colleagues as they were baffled. Amuses me the thought of my cervix being discussed round a table!
And yes it is tested, they test to see exactly which Cin I'm at, and that they got it all off. If they did, Smear in 6 months time to make sure hpvs gone and then back to normal smear times. If not, another lletz!

And I couldn't agree more, there was never a doubt that I woud have one and that the topic was so important but never have I been so active in preaching!

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Franticbutterfly · 22/02/2020 08:17

The same happened to me, they said it must have got better in the time between the smear and the procedure and that had they known that, I wouldn’t have had the procedure.

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Babyowl20 · 24/02/2020 13:03

Thank you for sharing @Whosamawotsits. The dr I saw said that they don’t always do a biopsy only if required so I was feeling a bit down that she deemed I needed one during the colposcopy - would have been a huge relief if she’d sent me away and said everything was fine as I know some people have experienced. But glad that the biopsy is generally pretty standard before treatment.

It’s felt like the longest few days of my life, and not even half way to the timespan they gave me for biopsy results! Have a horrible nagging, nauseous anxiety in the back of my mind all the time.

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Babyowl20 · 25/02/2020 11:36

Really bad day today. Keep getting horrible intrusive thoughts about the biopsy results coming back really bad. Sad tried to work as I was off work last week so I’m really behind but I had to stop because I couldn’t stop crying.

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amillionwishes · 02/03/2020 11:15

@Babyowl20 how are you doing?

I went away for a few days last week with dp just to take my mind off things a bit, I suffer from anxiety anyway but it's properly hit me and I woke up at 5am this morning and had a huge panic attack.

I think it's the waiting, I can deal with whatever the results are when I've got them but waiting for them is awful!!

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Babyowl20 · 02/03/2020 13:01

Hi @amillionwishes , still feeling pretty awful - I ended up phoning the hospital department on Friday, just to check if the results are back yet (unfortunately they weren’t) but they reminded me that a letter will come through once they’re ready. I totally agree with you re the waiting - it feels unbearable Sad sorry to hear about your panic attack. I have anxiety issues too and this has triggered it so much.

Did the few days away help you feel any better - or at least pass the time a bit faster? I’ve started taking a few vitamins last week and I think they’re helping - b complex, vitamin D and omega 3.

Cake and Flowers for us x

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Winterwoollies · 02/03/2020 15:24

Hi @Babyowl20 I just wanted to come and give you a little squeeze of reassurance.

I deferred my first smear for a few years due to moving house and various other stupid reasons. I went, heard the doctor tell the assisting nurse to ‘do the counselling’ and within a week had a letter telling me I had (severe) high-grade dyskariosis and CIN3. Cue absolute panic. The letters can say ‘this does not necessarily mean it’s cancer,’ all they want, you will still lie awake panicking. I also got the letter after work on a Friday so couldn’t speak to a doctor until Monday and was beside myself.

They whizzed me in for a colposcopy at the hospital with a consultant and two lovely nurses. It was very nerve-wracking. He numbed my cervix (which didn’t hurt at all just stung very slightly and was honestly the worst bit) and then decided to do the LLETZ treatment there an then (that’s just how that trust did it.) He then sent that sample off for testing.

He couldn’t tell me it wasn’t cancer but he told me that cervical cancer can take a very long time to develop.

I went home, ate chocolate and waited for my letter of results. It came through inside two weeks and had been incredibly thoughtfully folded by the consultant’s secretary. They’d done an origami-job on it so when I pulled it out, heart racing, the first thing I saw was ‘this is not cancer.’ It was the best letter ever.

I then had a six month check up and was clear. Then an annual check up and was clear. And I’m now back on three-yearly. After some abnormal bleeding (cue more panic) I recently had another colposcopy and it just turned out to be a harmless ectropian, which is a hormonal change that rights itself.

If they do decide to get rid of the moderate cells, please don’t be worried about the treatment. It really is ok. I promise. And they and the worry, will be gone. I had severe changes and have been healthy ever since.

Also, just because you have changes, it doesn’t mean it would have ever become cancer, it just might. And we’re so lucky to have this wonderful screening process to help us.

You’ve done everything right and I hope you get your letter soon.

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HoldMyLobster · 02/03/2020 16:12

I had CIN3 and laser treatment 26 years ago. As you can see I'm still here :-)

At the time many of my female friends the same age as me had the same thing. All still here and doing well.

Have you had any help with your anxiety issues OP? I took Prozac which really really helped when I had terrible anxiety.

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amillionwishes · 03/03/2020 11:21

@Babyowl20 I've sent you a pm xx

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Babyowl20 · 03/03/2020 11:41

Thank you so much for sharing @Winterwoollies and @HoldMyLobster- it really has been scary.

I had a phone call from the hospital just now, saying my results from the biopsy are CIN 3 and they have an appointment slot for the treatment this Thursday! Which is a huge, huge relief. I still feel tearful and really emotional, just that the results haven’t come back as anything worse, and that it’ll be treated within days.

I have some prescribed propranolol which I think I’m going to take on the day - I might see if I can get a GP appointment for tomorrow to get prescribed something a bit stronger, I’m so glad that the treatment is so soon but I’m worried about panicking once I’m there.

Thanks so much to everyone who has posted, it has really helped me get through the last couple of weeks. Cake Flowers

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Winterwoollies · 03/03/2020 14:50

@Babyowl20 ah the same as me. You’ve honestly done the hardest bit, and that’s just waiting to find out what it is. The worry can be crippling.

The LLETZ bit is easy and a nice excuse to have a day under a blanket with some chocolate and a film and a bit of fuss made of you.

Good luck on Thursday. You’ll do just fine as you know now it’s nothing sinister xxx

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InTheTempest · 03/03/2020 15:18

@Babyowl20 just saw your updates, I'm so glad for you that it's all within the realms of being completely treatable before it even develops. Glad you got an appointment so quickly, LLETZ was honestly not that bad and once it's done that's it. I expect you'll be on yearly recall but that is reassuring to me.

Hope it goes well for you, definitely have some ☕️ and 🍰 💐

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Babyowl20 · 04/03/2020 10:43

Thank you @Winterwoollies @InTheTempest - I’m really nervous about the LLETZ, and can’t wait to have it over and done with, so glad to hear you didn’t find it too awful! FlowersCake
It’s the numbing injection I’m most scared about.

I have a GP appt today to see if I can get some diazepam or similar to help with my anxiety.

So, so glad I went for my smear as soon as I got the letter about it! I nearly decided to wait until I turned 25 in the summer Shock.

It’s only been 2.5 weeks between the abnormal smear results and my treatment so I’m feeling really relieved that it’s gone so quickly (although it’s felt like a lot longer!)

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Babyowl20 · 04/03/2020 16:28

Got the diazepam.. less than 24 hours til the abnormal cells will be removed and I can breath (another) sigh of relief! Smile

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Winterwoollies · 04/03/2020 16:35

@babyowl20 the injection really didn’t hurt or even sting that much. It’s very much the idea of it that’s the worst bit. Plus the nurses will be chatting away to you, which is a lovely and very effective distraction. Then you won’t notice anything at all.

Be brave and then you can tell your story to help others. Xx

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Writersblock2 · 04/03/2020 20:44

Isn’t it curious how so many women have abnormal results, are left in a perpetual state of fear of “do I have cancer?”, have parts chopped out “just in case” and then feel indebted to a system that they feel saved them when actually nothing was wrong?

Always women isn’t it? Hmm

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HoldMyLobster · 04/03/2020 21:17

Ah the conspiracy theorist has arrived.

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marmite51 · 04/03/2020 21:23

But CIN3 does turn into cancer. It did in my cervix.

Of course women will feel grateful that they've been treated. What a ridiculous comment to make.

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marmite51 · 04/03/2020 21:24

Glad to hear you'll be treated soon OP- the first infection is the uncomfortable bit. I'm sure the diazepam will help.

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Babyowl20 · 05/03/2020 16:19

So I’ve had the treatment now! Smile the nurse/s were absolutely lovely and chatted away through the whole procedure. I was really nervous but it didn’t take long at all, and even the injections weren’t too bad, just a little uncomfortable.

They send off the part they’ve removed for testing, then in 6 months I have a follow up smear to make sure they got rid of all the abnormal cells.

Feeling so relieved. Thanks again to everyone who’s shared their experiences on this thread and been so kind! Flowers Cake

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