How long a wait between colposcopy and treatment? Worried

This is my first post here despite being a member for months. I’d just like to share my story so far and understand if this is the norm?

I went for my smear test eary August time and within a couple of weeks I recieved a phonecall and a letter a letter saying I had an abnormal result. The woman on the phone said i required a colposcopy, I told her i was a teacher and the times i was available and she told me i HAD to come in urgently (the next day) it said in the notes so i was really concerned. I then went for a colposcopy and was told she could see where the abnormalities were and I’d likely require further treatment. I waited around 3 weeks for the result which said i had CIN3 and require further treatment and they would be in touch in due course - pretty vague letter to be honest. Ive phoned the hospital 3 times since no one can really tell me exactly what treatment i require or when i was only told ‘probably before Christmas’ thats now been and gone and I’m worried I’ve been lost in the system. I just feel for it seeming so ‘urgent’ I’ve not heard anything for months and its really concerning me. I thought I’d be treated alot quicker. Am I right to be anxious? Everyone keeps saying if it was somehing to worry about they would’ve had me in but I’m just scared the CIN could have developed into something worse by now. I mean how can they know that for sure. Any advice welcome xx

I wouldn’t be happy either if I was in your shoes, maybe give them another ring? I was since very quickly as I had cin 3 going by the letter I received ( you can see my journey below) but what you need to remember is these changes take years to turn to cancer and the smears do a fab job so I wouldn’t worry to much but just chase them along
Big hug, I know how hard emotionally it is
Jo

Thank you so much for messaging back. I read your story and I'm sure you know alot more than I do. Just very scared and want to get my treatment as soon as possible. I worry these changes happened years ago and feel a bit like a ticking time bomb. The unknown is always scary though i guess. Thank you once again and wish you the best on your journey xxx

Hiya

this is my first post on here, and only a very new member although I stated my journey about 2 years ago. I read your post and it really ran so close to my own experience at the start I just had to message you back. like you, I was also diagnosed with CIN 3 (completely out of the blue) and was called in so quickly that the sheer urgency of it all worried me. I also understand your frustrations in getting hold of somebody at the hospital who can spend the time and share your concerns , like you say it's the not knowing. As the member above says I wouldn't be happy with this treatment and would fight to get seen by a consultant. My diagnosis led to have a procedure by general anaesthetic (but it's not necessarily done that way) and although I think when you are looking at the time frame being months (and not years) it is still ok, but really so appreciate your concern and want to get treated quickly and take no risks, I was and am absolutely the same and think at in the least you deserve time with a consultant to explain your case further. 

 

Im so new to this, so hope my reply is ok, as I say saw your post and just had to message back. Thank you for sharing your story too

 

wishing you the very best xx

Hello

Absolutely know how you're feeling, the whole waiting bit is the hardest thing to deal with as you can't help but worry. My first visit to colposcopy was an absolute shock as I didn't really have a clue just thought it was routine and nothing to worry about. Ended up having a biopsy there and then as they were worried I 'might' have cancer and thankfully it wasn't but never been so scared and shocked in my life. I've had a few treatments since after repeatedly being cin3 with high grade dysk (I still struggle to remember exactly what I've got and had done) plus they tested for hpv, Which was also positive.

I was recently expecting results last October after my last colposcopy appointment and didn't get them until December. I chased a couple of times, but part of me didn't want to as I also didn't want more bad news. I was told the first time I rang my results were in and awaiting for the consultant to look at them before they would send them. 3 weeks later still no results and what was also hard was friends and family asking if I'd had them yet. Fortunately this has been a one off as normally they have acted pretty speedily at all other times.

Having now had 4 procedures in just under 3 years I understand the system a bit better. For me it has colposcopy, 2-3 week wait for results (usually I've had the heads up over the phone), follow up appointment to discuss my results, treatment booked in fairly rapidly, follow up results and then about a 6 month wait for my next colposcopy appointment. It takes approx. 6 months for any changes to be detected...so another killer of a wait and easily the worst bit. 

Also they tell you so little in the letters that in the early days I was never sure if I was in for a chat or an inspection!

On the plus side I do feel they are on top of things and as Sal above says it can take years for anything nasty to develop. So definitely chase up and keep up your appointments.

Ive learnt so much since this has all happened and it still worries the hell out of me at times but the more I've learnt the easier it is to handle.

hope you all get good news soon x

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No smear for 7ish years

Cin 3, high grade dysk, hpv

lletz, loop & 2 cone biopsies in the space of 2 and a half years

next step keyhole hysterectomy (still learning about this one) and whether to keep ovaries or not

scared, hopeful but grateful for the nhs

Hello, do you have any updates yet? I just had my biopsy this week, we are in the same boat. 

No news here, still waiting for a hospital appointment and trying to be strong in between.