Hello,
I have just had my smear test results today which have showed ‘severe dyskaryosis (?invasive)’. They have booked me in for a colposcopy in a week’s time.
I’m terrified as I have no idea what ‘?invasive’ means?
I had a smear test last year that was fine, but had lots of irregular and heavy bleeding I was sent for a colposcopy at the time. This also came back fine but a small cervical ectropian.
I don’t understand how it’s gone from nothing to this is 9 months.
Does ‘?invasive’ mean they have found cancerous cells? In a panic as it’s the weekend and I can’t call my GP.
Hi Helen,
There is an NHS page which explains the results a bit better:
https://digital.nhs.uk/data-and-information/publications/statistical/cervical-screening-annual/england—2019-20/appendix-d-cytology-test-result-categories
This would suggest that there is the POSSIBILITY of an invasion from the cells into the surrounding tissue, as there are some indications, but this is uncertain, hence the question mark. This would mean an early cancer, yes. BUT it’s not sure - it will be investigated. The good thing is that you’ve only a week to wait for your colposcopy, and if it’s a very small area (which it could be) they will remove the cells at the colposcopy, so be prepared that you might be asked if you would consent there and then to the op, along with the biopsy of tissues.
Whatever it is, it will be very early stage. Of course there may be no invasion at all, but with severe Dyskaryosis you would definitely be treated, probably with LLETZ or cold coagulation. Try not to panic, it will get sorted but there is absolutely nothing panicking can do to help you at this point in time. Take courage! You’ve been checked regularly; if something has changed recently it will get fixed. X
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Hello,
Thank you so much for responding so quickly. All of what you have said makes sense. I think it’s just very scary to have a letter sent to you saying you have Severe Dyskaryosis (?invasive) and not having any explanation at all of what it means.
Hopefully I won’t worry too much before the procedure. What will be will be.
@helen.russell29 its awful how they just send you a letter through the post isnt it! I recieved mine on a Saturday, addressed from Gynecology Oncologist! You automatically assume the worse from that! (mine just said HPV+ and low grade dyskaryosis), but i had absolutely no clue whatsoever what any of that ment and had absolutely no one to ask until the monday. I googled the whole weekend away and frightened myself silly. I really feel for you!!! Its absolutely awful. I hope your OK. Id call your GP tomorrow and ask them whether they no anymore than you do. I really hope all goes well for you 
xxx
Thank you for your message - it’s awful how they just send letters out with medical terminology and no explanation. Especially on a weekend!
I’ve managed to get in with my doctor this morning so I can find out what it’s all about. Dreading the worse case scenario, and I know I won’t know anything until my colposcopy next week. So draining. Xx
Hi, hope you are doing well and not worrying too much?
I was in the exact situation last May and like you I had a colposcopy and there and then they told me what was found and the next steps for treatment. I don’t want to bore you with my story which is on here also @Jacks133 as she has followed my story and she has helped me so much (although I’m a nurse myself when you are in this situation you go into patient mode, I can assure you).
Please just go with positive thoughts and the outcome will be a good one.
Good luck with your GP apt and your colposcopy. xx
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Hello,
I’ve just had my colposcopy and the consultant performed LLETZ to get rid of as many abnormal cells as possible.
After the procedure she said she needed to be honest with me and that she didn’t like how my cervix looked. She was going to fast track the biopsy results and refer me to the MDT list for next Wednesday. She said it was very odd that I have had three various procedure in the last year and I am now at this stage. She couldn’t confirm if it was cancer until the results come back.
In my mind, she knows it’s cancer as why else would she send it off urgently? I’m just hoping that as all of my other tests over the last year were clear, that it is early stage 
So today I had my biopsy results from my colposcopy which shows I have adenocarcinoma, moderately differentiated. I have a 3cm tumour growing down from my cervix which has attached itself to my vaginal wall. It’s been provisionally staged at high stage 2, low stage 3. So no surgery, but chemo radiotherapy.
I’m still waiting for my MRI scan and PET scan. The nurse said I would need 18 weeks of chemo and radiation. This seems like a long time from the other treatment plans I have read.
I’m terrified about what the future holds for me.
Helen, I’m sorry for the news - please let us know how you are and sending a big hug. xx Ana
Hi @AnaM
I hope you are well and thank you for thinking of me.
It’s been a rollercoaster couple of weeks! After my scans, it showed a 5cm tumour that had grown up into the womb, with 2/3 lymph nodes and paraortic involvement. Stage 3C.
I was really unhappy with how I was treated at my local hospital. Real lack of communication and felt totally alone.
Luckily my daughters paediatric oncology team have been my lifeline, and have been really supportive and given me heaps of advice. So I asked for a referral to the Christie, which has been approved.
I have my treatment planning scan on Monday and chemorads starts on the 25th. Myself and few other 3C ladies have made a little support group which has been really good as we’re mostly at the same stage of treatment.
I have days where I prepare for the worst, but feel in safe hands now I’m at the Christie Xxx
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Dear Helen,
Thank goodness you’ve been referred to the Christie - there’s nothing worse at this vulnerable time to have no faith in your treatment team, and not to be treated sensitively. I’m glad you’ve found a buddy group for support. I didn’t know about this forum when I was going through treatment and at the height of the pandemic, so no-one allowed with me for anything. Having said that, you are very much alone in what you are going through, and another reason why a caring team is SO important. I was a 3C2 girl - with paraortic involvement - sounds like we had the same sort of thing. So pleased it’s all kicking off now, because once you get started you know it won’t be spreading any further and cancer’s day are literally numbered. We’re all thinking of all you brave ladies about to start treatment. X
Hi Helen, thank you for updating and I’m sorry it’s been such a roller coaster. Was that diagnosis following your last LLETZ? And maybe a “test of cure” as I think they call it? I am wishing only the best for your treatment at Christie! Xx
Ah you already updated in a previous post - pls ignore Xx and keep in touch! All rooting for you
Hi everyone,
I met with my new consultant at the Christie yesterday - wow what a difference! I’ve finally got some positive reassurance that this can all be ok and that there is a good chance of cure!
Makes me feel really angry that there seems to be differing ways of communicating with ladies in our situation which can leave you feeling so scared. Not only communication, but also treatment as there are slight differences in what I will now have done compared to what my local hospital were planning. I find it all really bizarre.
However, onwards and upwards now. Thank you all for your continued support and hope everyone is doing well Xxx
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Such good news, Helen. Yes, you must go into your treatment with the confidence that they are treating to cure, because that is what modern techniques can do. My hospital had lots of little rules and procedures as well and I found this comforting, because it means that they have developed a full treatment package to make sure the radiotherapy, for example, is as targeted as possible. Differences may depend upon the equipment used and the consultant’s experience, but it’s reassuring to know that everything has been considered.
You are an example to every lady who feels that their team is ‘not listening’ that it is possible to request a transfer to another hospital. I’m sure all hospitals do their very best for patients with cancer, but a lack of advanced facilities or staffing issues may mean they are not able to give you as much personal service at this incredibly difficult time.
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