I just wanted to provide an update on my story.
So sometime in August 2021 (can’t remember the date) I went for my smear. I received a letter a few weeks later stating I had high risk HPV and abnormal cells and I would be sent for a colposcopy. Fast forward a few weeks, I received another letter that I would be placed on “a non urgent” wait list and I would hear in 12 weeks. I then put a bit of pressure on my GP as I just had a horrible feeling that something wasn’t right.
I was placed on the waiting list and got a phone call on the 21st December 2021 inviting me to attend a biopsy on the 22nd of December. I received the results in February and was advised these were glandular and CIN 3 cells and I would receive LLETZ treatment. I got the treatment on the 3rd of May (after a cancelled appt that was due to be in March ). I actually found the LLETZ treatment easier than the biopsy.
Today on the 16th of May, exactly 2 weeks after my lletz I received a phone call to go back to hospital for a consultation and I was advised to bring someone with me. I knew right away…
I was diagnosed with stage 1 cervical cancer, I’m waiting on a MRI scan to determine treatment and the definite stage. I feel numb, confused and devastated. I’m currently going through my critical illness cover to see if I can claim to go private. I feel so failed and lost. It’s awful. I can’t believe it happened to me x
I am sorry to hear your story, that sounds so similar to many of ours. That gut feeling that something just isn’t right, and then the dreaded news. I was in the same situation as you, in Feb. and it was the worst feeling and time in my life. I went through moments of sheer panic, spent hours crying and fearing for the worst. Waiting to know if it’s spread and the staging was a rollercoaster ride… but finally I got my stage (well kind of… I chose to just not ask my official stage once they said lymph nodes were involved)… and in April I started treatment, chemo and radiation followed by brachytherapy. I am in my 6th week of chemo this week and have another 5 radiation treatments to go, then 4 sessions of brachytherapy. It’s been hard, and still is, but I’m grateful to have found it before it completely destroyed my life. It is curable, and I think saying that over and over again really helps. I recommend taking each day as it comes and finding the positive when you can. Stay away from google, and spend time with the people you love! Get the help you require when you start your treatment or get your surgery and don’t over do it! If you ever have any questions message me and I’d be happy to chat
I thought about going private when I was diagnosed but to be honest once you have the actual diagnosis it moves pretty quickly I had a radical hysterectomy 3 weeks after diagnosis
Hi lovely, did you get diagnosed after lletz too? Did you get a grading right away?
I did, they did an mri around a week later and confirmed it was 1b3
Sorry first they said they thought it was grade 1 then they confirmed it, the tumour was 6cm altogether
Hi Natalie, how long after the MRI did they confirm the stage? X
I’m so sorry to hear about your diagnosis. And I hope your treatment goes well.
May I ask what made you feel something wasn’t right? We’re you having symptoms?
I also received the same smear results and have been waiting 7 months for the colposcopy.
Did the MRI staging turn out to be the same as the original — I mean if you had a biopsy or LLETZ prior that gave an initial stage…thanks for the reply.
I think it was less than i week definitely then once I that happened everything moved so fast xx
Hello ladies, I spoke with my consultant again yesterday, she has given me a provisional staging of 1a2. My MRI isn’t until the 7th of June . Pretty gutted it’s so far away but she said I’ll still be showing scarring of LLETZ so it’s probably best to wait a while and it’s unlikely things will dramatically change. I’m feeling a bit better now that I have a grading. I’m just hoping things will move quickly after the MRI
Hi Jodie, I’m sorry for your news and sending you positive thoughts. Xx I too have an appt. next week (LLETZ was 2+ weeks ago) and because they tried to also schedule an MRI before I even got my official diagnosis, I’m assuming it ain’t great news. I know you said when you first got the call that they asked you to bring someone and they gave you the news face to face. Was this second conversation over the phone or in person again? How did they break it to you? I’m just bracing myself for the unknown…it’s so hard. X
Hi AnaM, thank you very much for your kind words. When is your appointment? The second conversation was on the phone.
I got the phone call on Monday to go back to the hospital and they told me face to face. I asked for them just to tell me on the phone but they said it would be better for me to come in.
When I went into the room on Monday I was a wreck and just said “I’ve got cancer haven’t I?” but my consultant is so lovely and reassuring. She spoke with me and told me that I have stage 1 cancer and that it is very treatable and told me potential treatments. I left feeling ok and positive, but its as the days go on it gets harder to process. I would maybe take a notebook and pen to write things down as you will reply the conversation constantly in your head and start to doubt yourself. That is why I called again and asked for more clarity. Her secretary scheduled the phone call and she went through everything again, it was good as I also had some questions to ask because on Monday I had no idea what to expect.
I have been beside myself with worry this week but please try to think positively, yes you may have cancer but the fact they are calling you after a LLETZ treatment will probably mean that it is very early and very treatable. I’m a school teacher and went back to work the next day, I got sent home on Wednesday as I had a little wobble at lunch time but picked myself up again and went in on again Thursday. Just try to keep your mind occupied as much as you can. Please message me if you need anything or want to talk xx
Thank you kindly, Jodie. I will indeed send word when I know what’s the what…until then, thank you so much for the thoughtful reply and words of encouragement. Scared as I am, this community has kept me somewhat sane through the uncertainty.