I was diagnosed with CC on Monday 2 weeks after my LLETZ treatment. It’s been a huge shock. When I was called to the hospital I was told to bring someone, which I did but to be honest it was a bit of a blur for both of us. The consultant is off now until Friday but will phone to re clarify things then.
I was advised that the doctors are fairly sure that it is stage 1 but couldn’t give me a grading as they could not see it properly. She did however confirm that it had not spread to my lymph nodes. My cancer wasn’t detected in my lletz or biopsy, the smear and biopsy just picked up cin3 and cgin cells. The doctor said they were pretty surprised at the fact it came back as cancer and none of my treatments were a priority. I’m just so worried because it wasn’t detected that it’s elsewhere in my body or somehow further up.
I’m waiting on a mri scan to confirm staging but I am absolutely petrified that it’s going to come back as stage 4 or that I don’t have long to live. I have terrible back pain and cramps but could this just be from my lletz? I’m just so scared. Has anyones mri came back from suspected stage 1 to stage 4 and so forth? Please help any advice is appreciated. I can’t do another sleepless night.
Hi @Jodiel101, I’m so sorry you find yourself here, I apologise I don’t have any experience of lletz as my cancer was picked up differently.
I just wanted to reassure you that each and every one of us have felt exactly like you do now, i definitely assumed the worst when I was told. It sounds like they have found it early and if you look through the stories and peoples journey’s here you will find others have been in similar situations to you.
Wishing you well xx
I’m really sorry to hear your news - but you only have to look on here to see that cervical cancer is highly treatable
I was diagnosed in March Stage 3C2. They would see my tumour during my colposcopy so I knew then what my diagnosis would be. My later MRI and PET scan confirmed involvement of three lymph nodes (which automatically staged me at 3).
In my case I’m not suitable for surgery, but I believe many stage 1 cases are. I’m having the standard chemoradiation treatment at the moment, with one week left to go.
I absolutely sympathise with the sleepless nights, fearing for your own mortality, waiting for phone calls and appointments. It feels like the world has stopped but everyone else is still going about their business like nothing has happened.
This forum was a lifesaver for me, and I now have a group of ladies at the same stage as me who I talk to every day. Maybe you could find some treatment buddies too? It does help to talk to others in the same situation.
In the meantime, feel free to send me a message. Always happy to listen to a rant We’ve all been there. Sending lots of positive thoughts your way Xxx
Hi there, just wanted to echo everyone’s sentiments…and also to say that I just got a call to come in to hospital next week; when I got the call today it was almost exactly two weeks since my LLETZ. As it happens I am out of the country and they won’t tell me anything over the phone. I completely empathise with the fear. I am SCARED.
May I ask how did they ultimately find the cancer if not through biopsy or LLETZ? Sending you a hug:
Sorry, I was upset when I was writing this and realise it didn’t make sense. My cancer wasn’t seen during lletz. It was 2 weeks after my lletz I got the phone call and the diagnosis with cc. I’m hoping because they couldn’t see it that it’s small? But also worried it’s been left and it’s hiding so it’s now advanced.
Thanks for the reply, Jodie. I’ve been a frequent poster here since the latest smear showed abnormalities; followed by the colposcopy, followed by LLETZ. Would you believe - someone just called me today to schedule an MRI and I haven’t even been diagnosed yet. Well, I guess their cover is blown.
I seriously lament the way I’ve been dealt with, communications wise; there’s no comfort being in this “club” apart from this forum and our brilliant community.
I’ll take inspiration from your drawing up strength and courage in the next few days and weeks. xx
I was told at the consultation that this happens frequently, you are contacted about a MRI before the diagnosis! That’s a shame. I hope you’re ok. Have you managed to contact anyone? Xx
I’m mostly ok, just super super annoyed at the stupidity of it all. I try to have compassion for the NHS because they’re underfunded etc…but I’m also allowed to be human, especially when I’m not always being treated very humanely.
I was told someone (?) would call me back. I emphasised the cruelty of having no context for this MRI appointment but being asked to come in for one. So once more…I wait.
I know I’m not so secretly asking for reassurance but; when you spoke with the other women about premature MRI appointments before being diagnosed - did any of them actually NOT have cancer?
I had a dodgy smear back in November, called for colposcopy in January, decided on Lletz in Feb, but we were on holiday, so delayed until return, 1st Lletz done 4th March, requested 2nd, 23rd March as edges were not clear, then graded at 1a2, then they couldn’t decide if it was multi focal, then decided it wasnt, had MRI a couple of weeks back, 1 Lymph node looked a bit dodgy, but could be up for another reason, I have Crohns so a lower immune system, so not really suitable for radio/chemo, have a meeting on Monday to discuss op. At first I was like ’ if you cant see it and you’ve got it, why an operation?’ anyway now after many sleepless nights and tears, panic attacks and convincing myself its everywhere, I’m just thinking lets be done and get rid !! Just trying to get work load sorted and meals prepared, bought a nice sun lounger, so hopefully can have a few weeks in the sun recovering! even though 'Im not meant to be in the sun for longer than 20mins…thank goodness I can still eat chocolate and drink wine!!!
Dear all,
I just wanted to shared my experience. I had a smear that showed severe abnormal cells in Sep 21. I had a colposcopy oct 21. Had the letter 2 weeks later inviting me for an appointment. Was told 1st November I had cancer. I was absolutely utterly shocked. The 2 weeks following that, waiting for results was horrendous. I convinced myself I was going to die and any ailment I had I put down to malignancy and further spread……! I think it’s really common and natural to feel that way and I really sympathise.
I had a great team in the nhs and my macmillan nurse was AMAZING. I had a ct and mri that week and she called to tell me there was no cancer elsewhere.
I was diagnosed with 1b1.
I had a hysterectomy and lymph node removed on Dec 3rd.
Thankfully no residual cancer was found.
6 months on I am now totally recovered apart from my scar. It all feels like a bad dream. It’s so treatable. I want to send you bucket loads of positivity.
Really happy to answer any questions if it helps x x x
I am at the same stage as you awaiting results.
I had a colposcoy end of April and despite the nurse not seeing anything she did perform a lletz. I then got a phone call asking me to come in due to discrepencies between my biospsy and smear. The consultant told me it looks like cancer and they were booking me in for MRI.
Well my job is safety critical and my mind since then has been so unfocused that I havent been able to go into work. I got a pain in my breast (Which i always do around my period) but this time i think it must be breast cancer as well.
I am due my results on 30th May and the waiting is the worst.!
I like you was up at 5 this morning just coulnt sleep was imagining being diagnosed with stage 4 and how my husband would cope.
I do hope you get you MRI and resuts quickly.
Well our journey has just begun and wishing you the best of luck.x
Hi @Jodiel101, I can emphasise. I was told last friday that I am somewhere between CIN3 and stage1a. They also can’t see any definitive evidence of cancer in my LLETZ sample, and said they couldn’t see cancer at colposcopy, but now they want to repeat the to take more tissue out as no clear margins. I don’t think my treatments were a priority either, I waited 8-9 weeks for my LLETZ results.
I too am really worrying about what if there is more further up they haven’t removed, or it’s spread elsewhere- every little pain or niggle I thinking it must mean I have cancer elsewhere. I think since you are only a few weeks after your LLETZ your symptoms are most likely related to that- I had some pains and cramping which eased off after a while.
Take care and hope you are managing some sleep xxx
