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.

Please try not to worry OP, a Colposcopy is just a way for them to have a better look at what is going on. I had a smear earlier this year and as results showed changes I was also given an urgent referral to Colposcopy. In my case there are pre-cancerous cells, but even still there’s no panic or mad rush, there is no need to panic. Cervical cancer develops very very slowly, we are talking 10+ years slowly, if your smear was clear in 2018 then not enough time has passed really for it to be cancer. It may be that there are abnormal or pre-cancerous cells in which case these can either be monitored or removed depending on the level.

Please don’t worry about this too much, I’m sure it will be absolutely fine x

Evening, I'm in a very similar situation. Had a delayed smear. No bleeding but it was incredibly painful (they had to give me valium to do it) and I've had an urgent referral too. Have my appointment next Friday.
I asked for details of my results from doctors but they said it's "abnormal results" and wouldn't say any more! I'm also quite anxious - young family too.

A friend of mine said that quite a few of her friends have had these colonoscopy checks recently too so I'm trying not to catastrophise. I'd really like to know what you expect at the colonoscopy 😕

I had a dodgy mole on my boob removed recently (came back ok) but I was so worried about that I totally forgot about the smear!

@LucyintheSky21 Hi Lucy. I've had a similar experience. I went to my GP not because my smears were out of date but because I kept getting thrush. She examined my cervix, said it was inflammed and that although my smear 2 years prior was normal she'd send me for a coloscopy. I said what was that for and she said to check I don't have cervical cancer. I came home from the appointment distraught - I also have two small children. To be honest it's been the start of a bit of health anxiety in me to be honest. Fast forward to my appointment and I just had an inflamed cervix. No precancerous cells. Coloscopys are really straightforward and as a previous poster said, cervical cancer can take years and years to develop. If you're having no symptoms then I wouldn't worry. You've done the right thing by going to get checked and now they're just making doubly sure. Are you on any hormonal contraception? I've heard the pill can cause ectropions :) I know how you feel, but try not to worry. 😊

Thank you so much for the kind responses that I have been sent so far. I am absolutely terrified, and I know it sounds silly but I have burst into tears so many times this afternoon (while my DC are at school). I have always been a massive worrier, and something like this is just going to take over my life until I get the appointment.

@Mrsttcno1 - Thank you for your kind and helpful message. I am in the same boat as you, I think. I haven’t been able to have a smear done this time due to starting to bleed while the nurse has tried to do it. It wasn’t painful though. Obviously I don’t know whether I do have precancerous cells or not, but when the GP did an examination today of my cervix, she said she could see inflammation/redness. I couldn’t believe it. It’s like being in a bad dream. I know you shouldn’t think the worst and she didn’t say she thinks I might have anything, but the urgent referral worries me. She did say that for every 100 patients that are referred, only 3 will have cervical cancer. Sorry to hear that you have also recently been going through the same with the urgent referral and the worry, and I’m so sorry that they have found precancerous cells. Sorry to sound ignorant but does this mean not actually cancerous cells but cells that could possibly become cancerous? And are they monitoring you, or are they going to do something about it for you now? xx

@KatEddy - Thank you also for responding and for sharing what you’re going through, I really do appreciate that. That must be terrifying getting an abnormal result from your smear test. I have no idea now if my smear result would be the same as yours as we didn’t get that far, twice. But, when I went to see the normal GP today, I assumed she’d just say that I needed to go to hospital to have the smear test there where they would be able to do it more easily. I did not expect her to look/examine and say she could see changes. I keep going over in my head what she said but it’s just things like inflammation/ a lesion on the cervix/changes. None of it sounds great. And of course you start to Google things and make yourself even more panicked.
My referral for colonoscopy has gone off today so I am waiting for the appointment but I’m praying it comes soon. I also don’t know what expect at the appointment but from reading online I think it’s just an examination similar to how they do a smear test. Is yours this coming Friday or Friday next week? Please let me know how you get on. And I’m sorry that you’re also in this terribly worrying situation. xx

Hi @Lollyl88 - thanks for your message. I have two young DC like you. I’m not in any contraception anymore as my DH had the snip after our second child. But before that, I was on the combined pill for a long time. The smear I had in 2018 was normal, but this was 6 years ago, so I feel like I have missed one. I could kick myself for not booking it sooner. Interestingly, I also went through a stage about a year ago where I kept getting thrush as well but I just kept taking the oral thrush tablet and it cleared up each time, but I was getting it quiet often. I haven’t mentioned this to the GP as I had forgotten about it, as it has now been a while since I last had it. I wonder if that’s significant?
I am also wondering if I could be perimenopause but I mentioned it to the GP I saw today and she seemed to dismiss it, but how would she know based on just looking t my cervix? I also feel I have started with health anxiety as I feel crippled with panic. Can I ask, when you went for your coloscooy appointment, did you find out there and then that it wasn’t anything to worry about or did you have to wait to find out? xx

@LucyintheSky21 I can sense from your messages how worried you are. I was exactly the same. Coloscopy yes they could tell me at the time my cervix was just inflammed. I was partly sent because the GP couldn't do another smear because I wasn't in the three year window - how bonkers was that?! Bht when I went it's very straightforward. They can see using the microscope pretty much straight away. The gynae I saw wasn't entirely sure about an area of the inflammation so he took a biopsy - this was to be doubly sure - he said as I had no symptoms - which from your posts I don't think you do - he was just doing it to be sure. It came back negative.

Thrush - I keep getting it - 3/4 times a year. Along with anxiety, pins abd needles, changes to the length of my period, joint pain etc and I am convinced I am entering perimenopause. I have also said this to the GP and they have dismissed it - I'm "too young" - I'm 38. All very frustrating!

It's next Friday, I read it is generally about 14 days to wait for an appointment. I've messaged a few friends about it as well and one has had the colposcopy before and she said it's basically the same as a smear but lasts longer. Urg.
Do you know where you were in your cycle when you had the smear? I was ovulating, and from what I've read it does impact where your cervix is and how it appears.

My friend also said it is quite a common thing so hopefully neither of us have anything to worry about!

Thank you @KatEddy , I really do hope and pray that neither of us do have anything to worry about. And I will be thinking of you a week on Friday when you go for yours. I’m hoping I have a date for my appointment by the end of the week. The waiting and not knowing isn’t nice. I keep trying to put it out of my mind, but it’s easier said than done. I don’t really know where I was in my cycle. I think the last smear she tried to do was 6th November, and my period was due and started ten days later.
All the very best of luck for your appointment next week! xx

@Lollyl88 - that does seem ridiculous that they couldn’t repeat a smear test just because it hadn’t been 3 years. Like you, I have suffered with thrush and used to get it the same as you 3/4 times a year. I felt like I was always buying those oral thrust tablets. I started drinking Actimel every day, I don’t seem to be getting it as often. I don’t know if that’s the reason or if it’s just coincidence. I’m also convinced I am perimenopause and I am 43, I haven’t had a blood test to check but like you, I am more anxious, not sleeping as well, I often feel too warm on a night in bed, and I get a bit of what they call ‘brain fog’ which I’ve never had before. x

I'm sorry you're feeling so worried. If you can, remind yourself that the doctor effectively said that 97 times out of a hundred it's not cancer.
I'm in my fifties, had precancerous cervical cells in my twenties. Had them burnt off, no further abnormal smears.

Try to remember that doctors tend to start with ruling out the worse case scenario and then work backwards. I had a similar thing. Twice. I think sometimes you have a cervix that doesn’t look like the norm. I was put on the cancer pathway both times because it is the quickest way of being seen. Both times it was nothing.

Hi, I went through this and had an urgent referral to the hospital. It was a cervical ectropion, they told me there and then. It was just like a smear with a camera and the doctor showed me on the screen and was told it didn’t need treating. I’ve just had another baby and when being checked to see if I needed stitches the midwife mentioned it, and said to be aware of excess bleeding but I was fine!

So pre-cancerous cells are not yet cancer, but could become cancer if they are left. I’ve got another check booked in a months time and then we will be going with removal. It honestly is such a straightforward process and the removal process also sounds totally fine. It sounds a lot scarier than it is, please try not to worry. I totally understand the fear, I have a very young baby and was terrified but truly knowledge is power here and the truth of it is that cervical cancer is very slow to develop, and the stages before that like pre-cancerous cells are easily treatable. It will be absolutely fine x

Thank you @Mrsttcno1 - thank you so much. It’s been another day of dread and worry here for me. I only saw the GP yesterday and the referral was only done yesterday so I still don’t have an appointment date, but the waiting is like slow torture. I can’t seem to stay off Google. Tonight I feel like I have lower back pain and it’s making me worry if it’s linked but I think I have had back pain on and off for years. I’m just getting very anxious about it all. I honestly don’t know how I’ll get through maybe 14 days. And then I’ll be even more scared.
I can only imagine how scary it is and has been for you especially having a baby. You sound really strong and brave. I have two DC, one in primary school and one in high school but trying to paint a smile on and be jolly is hard, although I can’t let them see me worried or upset. I definitely have never been this frightened in my whole life x

Hi @Mummy2020 - thank you for your kind message. The GP did say it could be an ectropion. And I’m praying it is that. I keep trying to think back to what she said, but she said inflammation on one side and she said it could be just inflammation or an ectropion. I keep thinking if she knew it looked a lot like cervical cancer, would she have said look I am concerned that this could be… It is terrifying. You must be so relieved you know what yours is. Are they leaving yours as it is? x

Hi @TPJB - do you mind me asking how things turned out for you, and were you also given the urgent 14 day referral? Were you also told there and then that it was ok or were swabs taken? I’m sure I’m driving everyone in my life up the wall x

Please don’t panic. Colonoscopy is a common procedure.

Even if precancerous cells or changes are found they can be removed relatively easily.

In some cases (like mine) they resolve naturally.

Hi
The investigation procedure is a colposcopy, rather than colonoscopy or coloscopy - this will help if you’re looking for information.

The British Society for Colposcopy has a useful section for patients https://www.bsccp.org.uk/women

Colonoscopy is for bowel related investigations not cervix.

Sorry auto correct. For the avoidance of doubt I had the gynaecological procedure not the colon one !!

I was given the urgent 14 day referral and was seen quite quickly. I think a week. They told me there and then that it was nothing although not before being examined by the top consultant because the doctor wasn’t sure. It was quite unnerving. I guess it could depend on the hospital. This was at Addenbrooks in Cambridge.

I'm sorry, this must be so scary. It's impossible to do I know but please try not to read into what the GP said or didn't say - a GP wouldn't be able to tell what was cancer and what wasn't by looking at it as they would just be able to see the inflammation, which is why you're being referred for the test to check. As someone said above 97 times out of 100 when people are referred for colposcopy it isn't cancer. So your odds are good. I know though that it's still incredibly scary. Here's hoping your appointment comes through soon.

Hi @KatEddy - how are you feeling? I know your appointment is next Friday. I’m still waiting for my appointment to come through and I saw the GP on Tuesday, and was told it would be within 14 days. I am really going out of my mind with worrying and panic. I have always been a big worrier. Can I ask, how long did you have to wait for your appointment date? xx

Morning @LucyintheSky21 I wasn't told about my smear results but I heard about the referral first (maybe my GP being rubbish?) so I'm not sure how long between results and appointment. Sorry to be so unhelpful.

I'm feeling quite anxious, have developed a lump in my throat from trying to suppress it I think. I had my paperwork through and I'm also having a LLETZ procedure as they found I have HPV and also severe changes, which I think means precancerous cells. So they are doing a "see and treat" basically the colposcopy and then removing all the dodgy cells as well and I'm assuming getting biopsies. I get a local anaesthetic. I've heard a few friends of friends having had the procedure. It's a bit more invasive.

I guess this is why we go for smears though, to find out and get things sorted if they need to be.

It's horrible and scary though.