What is happening?

I’m 36

My smear showed HPV and cell changes, I bleed alot in this appointment. I was sent for an emergency Colposcopy at hospital a week later.

At my Colposcopy appointment the Dr took 6 biopsys. When she was finished she told me it didn’t look great and to prepare myself.

I was sent a letter stating I had Extensive CIN2/3 with expansile pattern and an they gave me an appointment for LLETZ.

A few weeks later I had my LLETZ procedure and some of my cervix removed under general anesthetic.

When I was in the recovery room my Dr told me it was worse than she was expecting (again) and that I should have results soon.

She also said once I’ve recovered from the procedure she wanted me to have a scan.

It’s been six weeks and I’ve not had any results from the LLETZ or had an appointment through for the scan.

I know the doctor has told me to prepare myself but I wanted to know…

How long after LLETZ receive results?

Has anyone ever had Extensive CIN2/3 with expansile pattern as an intital diagnosis then after further tests had cancer confirmed?

If it was confirmed what was your next steps?

Thank you in advance for any response. I’m one very stressed out mum who has no idea whats going on.

Sara x

Hi! This is horrible that they let you worry like this. Six weeks waiting is awfully long time. Please give them call yourself and explain them. I didn’t get any letters of my results either and phoned them to get the results. I hope all goes well. Please keep us updated :heart:

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Thank you. I plan on calling them tomorrow and hopefully have some answers.

Feel like ive just been left to deal with all of this on my own, in limbo.

I am have now called my consultants secretary 4 times since my LLETZ, having to leave messages on their answer machine and had absolutely no communication back.

Im at a loss of what to do.

Hey @Sara1
I got the same procedure done here in US and I got my results in 10 days. I hope you ahve your resultsby now?

No, I’ve had no results or any communication

@Sara1 You must reach out to tghem and hound the for your results.

I called and left messages on their machine 4 times in past 8 days, they never returned any calls.

Today I tried again only for the secretary answer machine to state she is on annual leave!

I really don’t know what to do or who I can speak to!

Hi @Sara1 if you are in the U.K. give your gp a ring and explain. A nurse or dr should be able to see if there are any results to tell you. If this fails contact PALS (the hospital complaint dept) I hope you get some answers soon x

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Hi

I had a very similar experience in Lancashire. I had a colposcopy and they were concerned then told I had CC and cin 3 I had a lletz and it was 8 weeks before I got the results I had an mri and now waiting for second lletz results. The consultant was absolutely useless and said I needed to be patient as it’s only early stage. I was told I’d need a hysterectomy now apparently I can’t have one and have asked to transfer to another hospital. I really feel for you because they say these things and then you are left. I think it depends on where you are in the country, and there are so many delays but they don’t think of what it does to your mental health. When I told them my symptoms they said everyone has pain and that I was lucky which I don’t doubt but it’s just painful having to ring and soul destroying to have to chase important results. I would try the other medical secretaries to see if they can give you any answers. Sending positive thoughts x

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So I received a phone call from my consultant on Sunday 17th of March (my LLETZ was on 19th of January and had nil communication until Sunday, even though Id called 5 times).

She stated they had indeed found cancer, couldnt give me any more details and that she wants me to get an MRI…which I was actally expecting a date for already (was told it shouldve been 6 weeks after LLETZ)…apparently in another 4 weeks i should have it.

She then called back about 30mins later and asked me to call my GP to arrange for my Kidney function bloods to be taken. So i call GP and receptionist refused to put it through because I need a letter from consultant.

I feel like just a number and this whole thing has been such a cruel joke.

I’ll probably die before I even have any sort of answers, let alone treatment.

@Sara1 i just wanted to send love and I’m sorry you’re going through this and that everyone is making an already stressful situation more stressful for you! I would definitely complain if you have it in you to do so! It sounds absolutely ridiculous!!

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Thank you, I appreciate that.

I have an appointment with my GP on the 11th of April (thats the earliest appointment the receptionist would give me), i will be asking her to give me a print out of my full timeline (from smear to present date and the procedures for formal complaint).

Its being going from bad to worse since it all began. Still no updates regarding scans but I did speak to the practise manager who made me an appointment to get my bloods…still waiting for those results too now.

I hope everyone here who has been waiting as had some progress since i was last online.

Sending you all love. X

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My smear test was in on October 18th (I checked my diary)…to have cancer confirmed and to be left to deal with it alone for so long is exhusting and terrifying as who knows what this delay has done to my prognosis.

Terrible how they are dealing with it, just doesn’t seem right at all! I don’t know where you’re from but I found this for UK

“no more than 2 months (62 days) wait between the date the hospital receives an urgent suspected cancer referral and the start of treatment.
no more than 31 days wait between the meeting at which you and your doctor agree the treatment plan and the start of treatment.”

I can’t imagine how you’re feeling!! Sending love :heartpulse:

Yes in the UK there is a 61 (or63 not sure) day’s target for cancer diagnosis and follow up and that is fir urgent and non urgent cases :frowning: is terrible whats going on with you, is there anyone else you can complain to? Maybe Macmillan nurses that can guide you?

I am in the UK, Glasgow. I really am unsure why they are doing this. I was never told there would be such delays.

Thats the timeline I was expecting and cant understand why this has been so prolonged. I’ve no idea who I’d speak to, I haven’t been referred to McMillan or anyone. Can I just call them?

@Sara1 Yeah you can ring Mcmillian as they have help lines, you could also try ringing the Jo’s cervical cancer trust helpline, surely someone can give you some advice on how to get things moving, these charities are literally set up to help people so it’s worth a go, maybe they can shed some light!

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