Possible cervical cancer- please help with any advice

[LucyintheSky21]

Hi there,

I am so upset as I type this and I’m really looking for any advice or anyone who might be able to help me or at least try and offer me some reassurance. I know that you are meant to have a smear test every 3 years if you are under a certain age. I am 43 and married. My last smear test was 2018 and came back normal. Unfortunately I didn’t have a smear test when I should have done in 2021, but my Dad unexpectedly passed away in 2021 and things took over. It unfortunately got overlooked, but I recently decided to book both my age 40 plus Health check at the doctors and also my smear test. I went for my smear test some weeks ago and the nurse was unable to do it as my period was starting a couple of days early and I hadn’t realised. I was told to re-book and I went back a couple of weeks ago to have it done again. This time was unsuccessful again as the nurse said that I started to bleed during the procedure. As she had been unable to carry out the smear test twice, the nurse said that she’d make me an appointment with a GP (a GP who actually fits coils).
I went today to see the GP. We discussed that the nurse had been unable to do the smear test twice and she wanted to do an examination (not a smear) as she wanted to see if my cervix looks healthy. After the examination, she said there is some inflammation that might just be benign abnormal cells or an entropion. She never said she suspected cancer but has done something called an Urgent Referal to Colopscopy. She said I should get an appointment within 14 days. I have come home and been Googleing, and I’ve done nothing but cry. I have young children and I am terrified in case it is the worst case scenario. There is no history of cervical cancer or cancer in my family, and I only get spotting just before my period, not after intercourse.

I don’t really know what I’m asking but has anyone had similar to me and been referred and it been a positive/good outcome that they could share with me? Otherwise I think I’m going to drive myself crazy with worry.

Thank you for reading and any advice massively appreciated.

Try not to worry. Loads of women get abnormal cells after a smear. Sometimes it's just thst. Getting further checks is literally why we have smears.

I had abnormal cells in my 30s, and at that point, had to have annual smears for a few years until they were happy again. I had a colposcopy on Wednesday because of abnormal cells again (20 years later.) Most likely, either they will keep monitoring, or I will need a LLETZ. But I won't find out for 4-6 weeks.

I'm focussing worrying about a new job and other things instead.

hi @KatEddy , I’m sorry to hear you’re feeling like this. You sound like me, I’m feeling the same to be honest. I’ve tried to put it out of my mind but it’s very hard. I didn’t get as far as you in that I’ve still not been able to have the smear test done. So I don’t know what that would have shown, but I’m guessing as the GP has seen inflammation that it would have come back abnormal? I have only had an examination by the GP, and now having the colposcopy due to the inflammation she’s seen. She’s not been too clear on what it might be. I am terrified. I’m sorry to hear they have found HPV, I could be the same, that doesn’t always mean pre cancerous cells though I don’t think? I’ve just rang to chase up my referral and they have said I’ll be seen by the 3rd December. So we could end up being seen around the same date. I really hope it goes well for you next week and that the procedure itself isn’t too bad and that you get good results/news and that you breathe a sigh of relief. Would you mind keeping in touch? I understand of course if you don’t want to broadcast on here. It’s terrifying and not a nice thing to be going through for anyone xx

@LucyintheSky21 very happy to keep in touch. Solidarity really helps. I can let you know how it goes next Friday so you're mentally prepared, as best is possible! Xxx

Thank you so much @KatEddy - it really does help speaking to someone who is going through the same/similar. We’re probably in totally different parts of the country, I’m in West Yorkshire. That’s would be great to keep in touch, I’ll keep you posted on my situation as well. At the moment, just a date would be nice. It’s hard as well when you have kids at school who you need to be back for xxx

Hi everyone, and hi to @EBearhug and @KatEddy - thanks for your messages today. I just wanted to give you an update that I actually now have my appointment for the colposcopy on Monday. As in this Monday coming, so mine is before yours @KatEddy . I rang to chase it up this afternoon and they offered me the 4th December at first, but I said is there any way I can come in sooner because I’m worrying and I’ll drive myself nuts. So it Monday morning. This weekend is going to be an unpleasant one but at least it’s not too long to wait.
@EBearhug - how was yours on Weds? Did they tell you everything there and then or are you waiting? xx

That's really great @LucyintheSky21 well done on the chasing up! I'll be thinking of you. Let me know how it goes

how was yours on Weds? Did they tell you everything there and then or are you waiting?

They told me to avoid sex and swimming for the next 1-2 weeks (which messed up some of my plans.) Also to expect some bleeding/discharge, which might be black because of the silver nitrate they used. There's been some minor spotting, but that's all. I have a number to call if there is heavy bleeding or a foul smell (as that would probably indicate infection,) but no need of that (so far.)

I should expect results in 4-6 weeks, which will be by letter, so Christmas. It could take a little longer if they have to discuss in the multidisciplinary team, but it's not clear what would trigger that.

Hi @EBearhug - thanks for your reply. I am in such a state about Monday. I can’t eat or sleep. Was it just a colposcopy that you had on Weds? They’ve told me that it’s just like a normal smear but using a microscope. I never thought you’d have to watch out for heavy bleeding or anything. Is it dreadful or is it like a smear? Was it painful? Sorry for all the questions, I’m not brave at all. Am I right in thinking that you’re waiting to find out if the abnormal cells are precancerous? I thought that they sometimes took some cells during the colonoscopy and that you find out in about a week? xx

It's like a smear, but lasts a bit longer. They use a dye to stain some cells, and look at the screen. They also took some cell samples, presumably focussed by what they saw on the screen. I was mostly talking to the nurses about scraping the ice off the car that morning. It was uncomfortable, in the same way a smear is, but not painful. I've had worse procedures.

They are now looking at those cell samples to see if they are precancerous. I don't imagine they're doing it right now - I assume it's an office-hours sort of task. I don't know exactly what they're doing, and how much processing is involved and if they need to wait for anything, like if they've got a bit of my insides growing on a petri dish for a few days.

They said results will be 4-6 weeks, but I'm guessing they over estimate in case of postal problems etc. They said my smear results would be 4 weeks, and they came more quickly. It may well vary by health trust and work loads. I don't know.

Please try not to worry. (I know this is easier said than done.) Loads of women go through this. You are in the system and being dealt with. There is nothing more you can do at this point, other than turn up to appointments.

Hi EBearhug
At colposcopy, they may take tissue samples either biopsies (for investigation and diagnosis) or a LLETZ which is a bigger sample to also treat the abnormal area of cervix.
The tissue samples are placed in a preservative and sent to the histology lab for processing https://www.rcpath.org/discover-pathology/news/fact-sheets/histopathology.html
The tissues undergo more processes so they are preserved and so they can have really thin slices of them stained with dyes and placed on glass slides. The dyes highlight different elements of the tissues to help assessment. These are then assessed using a microscope by a pathologist. Yes, it’s mostly office hours. Turnaround times vary between hospital as the workloads and staffing can be quite different.

@LucyintheSky21 the link I posted earlier has some info about colposcopy.

@LucyintheSky21 how did it go today? Xx

Hi @KatEddy , what a day! It went really well. My appointment was 10.30am, I was waiting about 15 mins in the waiting room and my heart was racing the whole time. The lady I saw was really nice and that massively helped. The actual colposcopy was absolutely fine, it was over in minutes. It was a nicer procedure than the smear they nurse tried to do weeks ago. You just lay on a chair with your legs in stirrups and they have a look with a special microscope. She put some dye inside but I didn’t even know she’d done that. The dye is meant to show up any abnormalities, and she said beforehand that if the dye showed up anything that she would do a biopsy. But the dye showed up nothing she said, so no biopsy. So it was all over very quickly. She did my smear test and said she’d sand that off, so obviously I need to wait for results of that like anyone else, but she said everything looks fine. She confirmed I have what’s called an ectropion. An ectropion is nothing at all to worry about but it does explain inflammation and bleeding easily. So a massive relief for me today, I can’t tell you how pleased I am. I am a little anxious about smear results because you never know do you, but she said she thought everything looked normal. Thank you so much for asking and remembering xxx How are you feeling about Friday? I am keeping everything crossed for you that yours goes the same as mine this week. Please let me know xx

Oh that's such good news. I'm so pleased it went well and you've had that reassurance. I'm doing ok, nervous but also pleased it's happening this week and by the weekend. Trying to brace for any scenario but not think too deeply about it. I think I'm feeling quite stressed underneath it all but young kids keep you distracted hey!! Xxx

Thanks @KatEddy - it really helps and has helped having someone to talk about it with, and not just you, but the kind reassurance from the other lovely posters who replied and responded to me on this thread. It’s been a big help to me.
I think I know exactly how you’re feeling. I spent all of last week and especially this weekend feeling very stressed and worried about today’s appointment. I had tried to take reassurance from this thread and others who have been through the scare, but you can’t help but think ‘but what if..’. The actual procedure is completely fine and doesn’t hurt at all, so take comfort from that, and I bet you’ll find you have the same as me. I still have to wait for my smear results but I’m just thankful today that the gynaecologist lady saw nothing that she was concerned by. The waiting is definitely the hardest part. What time is your appointment on Friday and are you taking someone with you? I took my bestfriend Xxx

Hi @KatEddy - how are you feeling? I just wanted to wish you well and the very best of luck for your appointment tomorrow. I have everything crossed for you that it goes well and that nothing is wrong. Please let me know xxx

That's so sweet of you @LucyintheSky21 I really appreciate the message. I'm okay just have a sinking feeling in my stomach. I'm ready for it and hopeful it'll not be too painful and they'll get rid of the cells tomorrow. I'll just focus on that and not any further steps until I get there xxxx

@KatEddy - the colposcopy itself isn’t painful at all. I preferred it to my normal smear tests that I’ve had in the past. And I haven’t had any cells removed, but I know someone who has with the loop procedure (can’t remember the name) and it’s apparently over in 15 mins and not painful at all. I was told at my colposcopy that if the dye showed up any abnormal cells that they’d remove them. Let me know how it goes xxx I took my son’s squeezey stress ball thing and held it while they did the procedure and I didn’t even need it xxx

I know someone who has with the loop procedure (can’t remember the name)

LLETZ, though I can't remember what it stands for without googling.

How has it gone today @KatEddy ? Xxx

Hey @LucyintheSky21 it was pretty bad tbh. I must have a high cervix or something as it was really really painful. They only managed to get something when they put a longer speculum in. The nurse was very brusk and kept telling me off for wriggling and clenching (all of which was of course unintentional) and saying she was frustrated with me which upset me (and I cried - I think cos of the stress and pain and her being so awful). Basically they couldn't do the treatment (LLUTZ) but they took some biopsies. The nurse which held my hand was really lovely though. I will get results of the biopsies in 4-6 weeks and then will find out what treatment will be needed. She suggested I might need general anaesthetic but I said I'd prefer not! She also said if they did try for the LLUTZ again then the lead nurse would do it as she's really quick.

@KatEddy - I’m so sorry to hear it went like this and that it was painful. I was exactly the same as you, stressed and tense and couldn’t relax during the procedure but I think it massively helped that the lady who did mine was amazing. She was really kind and friendly and reassuring. It sounds like yours wasn’t. How dare they get frustrated with anyone, it’s a terrifying thing to go through, and impossible to relax. I’m so sorry. Did the colposcopy show anything with the dye, is this why you’ve had biopsies? Xxx

Well my smear showed high grade changes, so pre cancerous cells and she saw the cells with the dye but she said it was a very small area. I guess the biopsies will show if they are precancerous (or worse) and I'll have to go back for the treatment another time. That's my assumption anyway!
Thanks for being so lovely about it. I think I was unlucky with my nurse today. Maybe she'd had a bad day. She was snarky from the start!