Hello everyone,

Long post alert! I'm new to this forum and I'm going through some scary stuff at the moment. I have just read this thread from start to finish - so many inspirational women on here and I already feel a bit better. 
My daughter, nine, was diagnosed with leukaemia in Jan 2020 just before the pandemic. She has been amazing and finishes her treatment next week. 
Last January I had a smear test which came back as HPV positive, but no abnormal cells found. Advised me to go back 12 months later. 
In July, I had some bleeding after sex. Never happened before, my cycle always regular and no bleeding between. Due to what my daughter has been going through, I was really concerned and went to my GP who was amazing. She examined me and said she could see a small cervical ectropian which bled quite easily. She sent me for an internal scan (which was fine) and put me on the two week pathway as I was so stressed and worried. I had a colposcopy, where I was told that they could see a small ectropian but not to worry and go back to my GP if I had further bleeding. 
Around that time, my periods went bezerk. I've never had heavy periods but suddenly I was getting huge amounts of blood loss and clots. For a couple of months my periods lasted for two weeks or so and were totally out of sync. I put this down to the covid jab as it was so out of character for me. I also started experiencing lots of watery discharge. I also went back to my GP and she referred me to a gynaecologist, who rang me just before Xmas to find out what was going on. I was then booked in for an endometrial biopsy in January. 
Whilst waiting for this I had my repeat annual smear done. Two weeks later I had my endometrial biopsy and the gynaecologist said my heavy bleeding etc was most likely due to the stress of my daughter's illness causing my hormones to go haywire. She said she wasn't concerned but would wait for the results. 
Last Saturday I had an awful letter in the post saying they had found severe dyskaryosis (?invasive) in my smear results. They had also booked me for a colposcopy to investigate. 
Yesterday I had my colposcopy and the consultant said straight away she would be doing LLETZ to remove as many abnormal cells as possible. After the procedure the Dr said she is brutally honest with all of her patients, and that she didn't like what she had seen. She fast tracked the biopsy to the lab and said she was going to put me on the MDT list for the following Wednesday just in case. I asked her if it was cancer and she said we just need to wait for the results. She said she may be wrong, and apologised in advance for putting me through this, but she would rather be safe than sorry. She agreed that it was very odd that my previous colposcopy last year was clear as was my smear test, but she would 'unpick' those results later. 
When they let me out of the room they asked me to wait for 30 minutes to make sure I was ok. My husband was allowed to come up and sit with me. He was and is beside himself, as we have both struggled mentally with our daughter's treatment. 
All of the nurses were very kin and made me a cup of tea - but I can't get it out of my head how they all looked at me. Like they all knew I had cancer? The specialist oncology nurse gave me her card and told me to ring her whenever I liked before the results and MDT meeting next Wednesday. 

I don't know what to think. I am struggling to understand how I've got to this point in under 12 months. I thought cervical cancer was slow at progressing. I am terrified that after everything my daughter has been through, that she's going to lose her Mum. 
 

Last month I started to have uncomfortable back pain at night with period type pains. They are manageable with one or two paracetamol. I don't bleed between periods but they are very heavy. Until my LLETZ yesterday, I've had consistent watery discharge. 
 

Sorry for the long post. It feels better to write it all out actually. Hoping someone can ease my anxiety as I have another 7 days until my results. 

Hi Helen

I am so sorry to read what you’re going through and especially about your little girl- I can’t imagine how difficult things must be for you and I so hope that her treatment will prove to be very successful. You must have gone through some incerdibly tough times, and been unimaginably worried for her. I’m sure we’ll all be praying for the best of news when she finishes her treatment.

And now you have these further worries to deal with. So, let’s start going through this. The severe dyskariosis is abnormal cells, but the question mark means there is a suspicion that these are invasive ie cancer. But they don’t know this yet. The nurses don’t know, the doctor doesn’t know and only the results from pathology of the cells removed at your lletz will give the definitive answer. 

We all look for clues in body language, and how nurses etc “look” towards us but they simply don’t know yet. 

Your doctor clearly suspects something, and is getting your results fast tracked and having you on the MDT list for discussion. This is all a good thing, although it may not feel like it, because you will have answers quickly and be able to get on with whatever treatment is required. 

Unfortunately it is possible to have a clear smear and colposcopy and still have cancer, as no test is perfect, but it seems like the doctor has just seen cells, rather than an actual tumour, so this would suggest that if this is cancer, it will have been caught early. Again that might not seem positive, but in the world of cancer, it really is. Cervical cancer is very treatable, so please try not to think your daughter will lose her mum. No matter what they find, it can be treated.

You will find out very quickly if this is cancer, and will be thrown into a spin of scans and appointments if it is. Early stage cervical cancer would usually mean having a hysterectomy, often with no further treatment required, so that would be the best possible result if you do have cancer. A hysterectomy is not possible for higher stages of this cancer, and you would have a different treatment plan, but it’s too early to think about that yet.

It’s impossible not to worry, I understand that completely, but what I would advise is not to google, and to take one day at a time without automatically thinking the worst. My diagnosis was 3.5 years ago, was locally advanced (so that means there was some spread) and I had a visible tumour. However, I’m fine now. 

Please use the forum here for help and support. We all can understand the fear, and we know what this is like. Obviously, I hope you don’t have cancer, but if you do we can help support you through.  xx

Hello Minska,

Thank you so much for your quick reply. A lot of what you have said makes sense.

I had a call from a consultant at the hospital an hour ago, to advise me they were going to book me in for an MRI scan, based on what they saw yesterday. He said the biopsy results would hopefully be back by Friday and the MRI would be scheduled for next week.

I asked him if he had seen my previous set of colposcopy results, and he said he had put the two photos side by side and there was a significant change in the appearance of my cervix. He then went on to say that an audit is done for every patient and he when that is complete he will be open and honest with me about why the results are different. Which to me means that they didn't spot the cancer last year.

I am still hoping that it will be early stages, but am alarmed at how quickly they are trying to organise the MRI etc. I know this is a good thing in the long run, but I can't help but think it's because they things it's at a very serious stage :(

Hi Helen

Things are moving very quickly for you which is good, but it’s sad to think something might not have been picked up earlier if that is the case. However, this does not necessarily mean that things are at a very serious stage, just that they already seem pretty certain this will be cancer, and they want to get your scans done quickly so that they can proceed with a treatment plan. My biopsy result was back within a week, and ct and mri scans done within a week of that after a single appointment at the gynaecologist so things can move quickly. xx

Hi Helen, I just wanted to share my story a little bit with you, as I have just recently been diagnosed with cc and have staging mri tomorrow. I have had bleeding during intercourse on and off for around 5 years now and was told it was ecropion and nothing to worry about as my smears were all fine, but over the last year it has gotten so bad that we can't have sex anymore. I had a smear and swabs done last year followed by colposcopy which found minor cell changes. So was given a routine referral to gynaecology last August to investigate the bleeding and I was told I likely had endometriosis.

Fast forward to January, and still no appointment, I experienced random severe heavy bleeding twice in one evening, so my GP referred me for an urgent ultrasound which showed a mass on my cervix. I was given an urgent referral back to colposcopy, where he took a few biopsies and done lletz treatment. A week later I get a call from his secretary asking me to come in that afternoon, and when I arrived he confirmed I had cancer. He had taken biopsies and done treatment  further up my cervical whereas the last Dr did not, which is why it was missed at my appointment last year.

Unfortunately colposcopy is not always 100% accurate and things do get missed, so it's good they have got you back in and getting it sorted it out. Hope all goes well for you. Xx

Dre138 you are an early bird

Thank you for sharing your story. My husband and I have been worrying ourselves sick with the potential consequences of this having being missed. It all seems so unfair. 
I have a meeting with the consultant next Wednesday for my results. I'm hoping for the best but know deep down it wil be cc.  
I hope your MRI goes well. Let me know how you get on I'll be thinking about you Xx

Hi Dre

So sad to see you didn’t get listened to and referred earlier. This unfortunately happens too often. A clear smear is not a guarantee someone doesn’t have cancer, and nor is a colposcopy. I wish doctors would listen to women and their symptoms instead of fobbing them off.

I hope your mri goes as well as it can today and you don’t have too long to wait for your treatment plan. xx

Morning Helelen

Will you have had your mri and results from that in time for the appointment next week, or just the biopsy results? 

We all tend to think the worst, I know. I was convinced my cancer would have spread and be everywhere and untreatable, but it wasn’t the case at all. Things are not usually as bad as we imagine they might be,  but fear puts our minds in overdrive. I hope things won’t be as bad as you might be thinking, and treatment for thiscancer can be extremely effective.xx

Hi Minska,

Thank you for your message  

No just my biopsy results next Wednesday. The consultant has booked me in for an MRI which should be next week at some point. 

Keeping my fingers crossed