Colcoscopy questions

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Hi all,

My partner had a Colcoscopy today following a recent smear test showing HPV and CIN1 abnormal cells. Before the test, we were confident that things would be fine as it's low grade and apparently takes years to develop into cancer from this stage. However during the procedure the doctor gave her absolutely no feedback but took large amounts of cervical tissue for biopsy as opposed to the pinhead sized piece that all the guides state. She said it was pretty painful and she bled quite a lot. He just said she'd get the results in 4-6 weeks and nothing more.

We're now concerned that he found that it's progressed quickly to something far worse and wonder if anyone can offer any guidance?

thanks in advance

  • Hi and welcome to the group.

    First of all, I hope I might be able to give you some reassurance about the procedure today. HPV is responsible for causing the abnormal cells, but CIN1 is a low grade of abnormal cell. The biopsies are taken to confirm the CIN1, but personally I don’t know anyone who has had a pinhead size of biopsy. What may look to us like “large chunks” may not necessarily actually be as big as we think! I had 2 biopsies taken and they looked fairly large to me when I saw them. It’s also common to bleed. 

    The doctor isn’t able to confirm anything while doing the procedure as the result needs to be determined by the biopsy, so doctors don’t tend to give feedback at the time because they don’t know at this stage, so that’s also perfectly normal. The biopsies will either confirm the CIN1 result, or it may be that the level of CIN is higher, as results of the smear and colposcopy can differ. But it’s important to remember that any level of CIN is not cancer, and depending on its severity will be either monitored to see if the cells regress to normal, or be removed in a simple procedure called a LLETZ which is normally done in the clinic and only takes a short time. 

    If the results will retake 4-6 weeks, that would be a normal timescale, and would indicate that the doctor hasn’t found anything of major concern. 

    I think at this point it’s not useful to speculate that things might be worse than has already been indicated. If there is suspicion of cancer, results tend to be fast tracked and come back much quicker. Try not to let anxiety run away with itself-the only thing you can do is wait for the results to see what the next steps might be. Hopefully there is nothing more serious than CIN1 to be dealt with. Even a higher level of CIN can be easily treated.

    Sarah xx
     


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  • Oh, and I should add that CIN at any level will not necessarily EVER develop into cancer. 

    Sarah xx


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  • Thank you Sarah. 

    She mentioned that she saw white patches on the screen after they applied the acid solution so I'm petrified that it's already turned cancerous- I'd been a bit calmer before because I'd seen an nhs statistic that colposcopy soon  after a cin1 smear only came back as invasive cancer in 0.1% of cases but now I'm scared again. I thought it took years for this to progress. Trying to avoid Dr Google from now on but wondering if there's anything I can do to calm our fears at all.

  • Hi again

    The areas which turn white indicate abnormal cells, NOT cancer. Please can I recommend that you stop consulting Dr Google and reading statistics? It truly is the way of ramping up anxiety hugely and causing so much unnecessary stress. The chances of something which is thought to be CIN1 turning out to be cancer are absolutely tiny.

    Not completely impossible, as nothing is impossible, but if the chance is 0.1%, try flipping that round and saying there’s 99.9% chance everything will be absolutely fine-that sounds a lot more positive don’t you think? 

    It seems you’ve got yourselves in a right state over an extremely common procedure for something which isn’t cancer and can be very easily treated, if it needs treatment at all. As I’ve already said, even CIN3, the most severe form of abnormal cells, will not necessarily ever turn cancerous. It typically takes years for these cells to turn cancerous in cases where they do. 

    The whole point of the screening programme is to identify early changes to cervical cells, long before they ever become cancer..

    I have been dealing with cervical cancer since 2018, and have gained a vast amount of knowledge along the way about hpv, abnormal cells, and of course cancer itself having had it twice. I’ve spoken to hundreds of women along the way, in a variety of different groups and settings and seen many different situations. I’ve seen people drive themselves crazy with fear when in reality there’s nothing to be majorly concerned about. It’s not nice to have cell changes, but it’s not a life threatening situation. 

    If I were you and your partner, I personally would not be overly concerned about your particular situation. It can be sorted very simply. My advice would be only to worry when there’s something to worry about, because it will achieve nothing to worry about “what if” and you can’t actually change anything.  It’s way to soon to be thinking negatively and imagining any kind of worse case scenario at this stage. 

    Please try to keep off the internet searching for information which you may not fully understand and which may not be at all relevant. Just try to keep calm, and stop frightening yourselves. Dr Google makes everything gloomy!

    Sarah xx


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  • Sarah,

    Thank you for taking the time to reply with such kind and encouraging words

    x

  • I just find it sad to see you both worrying so much about this and being scared. I just want to try and reduce that level of anxiety for you if I can at all.

    Sarah xx


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  • Hi, Its me again, with a new profile as couldn't get on here with the old one.

    My partner received a letter yesterday confirming that during the colposcopy he saw areas of low grade changes but also areas suspicious of high grade lesion which were biopsied and he will write with results and treatment plan. Now worried that high grade lesion means its progressed to Cancer. Does anybody know what this actually means ?

  • Hello again!

    It’s not uncommon to have areas which have different degrees of abnormality on the cervix, but even high grade does not mean it must be cancer. CIN has 3 levels-low, moderate and severe(high grade) and they all describe abnormal pre cancerous cells.

    Only a biopsy will give a definitive explanation so it’s just a case of sitting tight and waiting for the results. I hope you’ve stopped looking at dr Google! 


    Sarah xx


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  • Thank you Sarah, it's almost 4 weeks since the biopsy now and still no results so we're still very scared but just trying to get on as normally as possible. Unfortunately Dr Google is still causing anxiety as there doesn't seem to be anyone else to talk to right now x

  • Biopsy results are taking longer it seems these days. I’ve recommended before to stay off Google as you probably don’t know what you are looking for and it can’t tell you what’s wrong, but it’s your choice if you want to continue with that. No-one can tell you anything more until the biopsy results are in, not Google, not the doctor because the biopsy is all that will give the answers you need. We all hate waiting for results, and it’s very difficult, but it’s all a process we need to put up with to get the right diagnosis and treatment plan. There’s no point really in spending your lives being anxious at this point and jumping to a cancer diagnosis on the basis of things you are reading on the internet. 

    Sarah xx


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