I'd posted last week about receiving a vague letter asking me to attend the hospital following LLETZ and biopsy. The week between receiving my letter and the appointment was a horrendous and I had prepared myself for the worst.
So, I attended my appointment and they had in fact found a 2mm area of 1a1 cancer in the area that had been removed. The next thing that she went on to say was that they were quite hopeful that it was contained within the are that had been taken away. The rest of the appointment pretty much went by in a blur and i'm waiting to hear how they wish to proceed to 'make sure' next week.
From what I can understand it's obviously by chance that these cells were removed when I had the routine procedure done 6 weeks ago. I'm so worried that this isn't the case, and it's been 'developing' in there for so long that it's spread.
Has anyone else had a result like this? What are the chances it will be ok, and how will they make sure? Thet mentioned repeating the LLETZ/biopsy but surely they'll need to scan?
The consultant asked me to go away and write any questions down that come into my head and if i was particularly concerned I could call the nurse any time, but I don't like to bother them just yet.
You must have lots of questions so ring the nurse!!!
my nurse was fab, I would ring at 11pm, leave a message on her answer phone and she would ring me when she got in the next day. They are the to make sure you are doing ok, it is their job so please ring.
as for the next bit, I'm afraid you will have to wait. If u read past posts on here, u will see that cc is a waiting game, I'm afraid. But be assured that the MDT looking after you will be looking at your results together and deciding what to do next thats best for you. Your cancer is very early stages and the chances are that it has all been taken as they say. They will be looking to see if the edges around the part they took are clear. They MIGHT invite you to an MRI if they are not sure, but they will explain this to you. A lot of people with very early cancer do not have to go to the extreme of having a hysterectomy so that will most probably be the same for you. some ladies will have a "cone" procedure to remove more of the cervix. Have a read through past posts on here, use the search, I often find it useful going through old posts.
fingers crossed for you. Good news that it was found at such an early stage!!! Stay positive. Ring that nurse!!! Do it now ;-)
Hi, I have received a very vague letter with an appointment for next week following my LLETZ procedure last week. It just says a further appointment has been made, that is it!! Do they post results if they have got clear margins do you know?
Another week of complete panic ahead. Severe dyskaryosis following my routine smear in August. Colposcopy and biopsies (marked urgent) taken in Sept. The doctor at the follow up appointment wanted to do the LLETZ under a general as the area was large but was happy to wait until after my holiday in Oct. No indication that it was urgent, very little communication following my treatment. I was in recovery at 11.45 and discharged by 12.30. No information at all really, just that GP letter would be posted out now off you go!
Feeling completely railroaded and confused. Should I take somebody with me to this appointment or could it just be routine?
I did ring the hospital but the receptionist just said it is normal to have a follow up (not convinced) the last thing she could see on my file was the colposcopy in Sept so yet again, totally unhelpful.
Not wanting to make u worry, but take someone with you just in case. I took my hubbie cos he came to colposcopy and LLETZ with me, and I'm glad I did take him as was diagnosed. Now, this does not mean that will be ur case obviously but always good to have 2 pairs of ears when being told about results.
good luck. Fingers crossed. Let us know how u get on xxx
That's what my letter said, and that they suggested taking a friend or family member along. It sent me into a mad panic but like I said I prepared myself for the worst (I am a glass half full type of person anyway!). I would always take someone a long, it's always good to have support whichever way it goes.
I presume you had a biopsy taken too? They seem to have got your results quickly which is good - I was about 5 weeks from my LLETZ/biopsy to recieving the letter. I beleive that every NHS trust is different in how they get your results to you. Please dont fear the worst , it could be just something they want to discuss with you that they found when doing the procedure. After receiving my vague letter I didnt bother to call, as I knew the appointments clerk wouldn't shed any more light so I just sat tight and waited, as awful as it was. It really could be just a follow up, as I say each trust is different and it may just be to discuss what they saw/found and what happens in the future.
I too had my LLETZ under GA. It sounds like you really weren't given much information or aftercare. I feel for you. Waiting for those brown envelopes to come through the letterbox is awful.
When is your appointment?
Hi Dons, Thanks for your reply. It does appear to be a waiting game. They were having the counsel meeting last Friday morning so I am expecting to hear what happens next by the middle of next week. I have 6 questions on my list so far! :)
I think I would feel better having an MRI, this is definitely one of my questions. I also don't have any children, and they are aware that I would like to so this was part of the appointment last week, to go through my plans for the future etc. What stage was your CC when you were diagnosed?
I was told early stages at diagnosis then told 1b at meeting with consultant after MRI. As I have a daughter, it was a hysterectomy for me with saved ovaries as am 37.
Keep writing those questions down! I had a big list when met consultant but he answered most of them before I even asked them! They know what's worrying you already x
My appointment is for Next Tues 12th. It does not say anything about bringing a friend/relative.
My original biopsies were taken using LEETZ in Sept but the consultant there was nothing to worry about. He just said there were some changes (no grade given) He wanted me in within a couple of weeks but as I had a holiday planned he agreed it could wait for a month. LLEETZ was done under GA last Monday and I had the letter through this morning with the further appointment. Biopsies were taken but I never expected to hear anything back so soon.
Fed up of being tampered with already. I have only just got right after the first biopsies and this time it is far worse.
Luckily for me I am 42 with 3 grown up children so if need be, they can take away what they like.
Hi Natalie
I was also diagnosed with stage 1a1 following a Lletz … I was sent for an MRI and was discussed at MDT meetings… My margins weren’t clear from the Lletz so they did an op called a Trachelectomy on me… They took away my cervix. This was to preserve my fertility as I’m only 26.
I know they also can do a second Lletz and cone biopsy before a Trachelectomy so I’ll have my fingers and toes crossed for you.
The wait from diagnosis to treatment is a long one filled with a few appointments and lots of waiting. I hope you’re getting on ok? Don’t hesitate to message me if you have any questions
sorry to hear your news! I was diagnosed with 1a1 in july after I had my LLETZ and like you they were confident that it had already been removed in the LLETZ as my margins were clear. I had an MRI to make sure they couldn't see anything else and then it went to an MdT meeting to decide on my treatment. they decided on a cone biopsy just so they could make sure there was nothing left in there - a belts and braces approach he said! I had the cone in August and got my results in sept to say that the sample removed at the cone did not contain any other cancerous cells. I am now in the waiting game for my first check up in Feb!
I haven't been on for a few days (been trying not to think about it I suppose....)
Sounds like our situations were very similar and it's encouraging to hear from you both, thank you.
As far as I understand my margins were also clear, but of course I haven't got the all clear as yet. And you are right about the wait from diagnosis being a long one. I've been expecting to hear all week and haven't, and i've been having pains so mum persuaded me to call the nurse. They hadn't even discussed me at the MDT meeting last Friday and I wasn't even on the list for this Friday! I was shocked that they hadn't already got the ball rolling when potentially every day could make a difference. Or am I being dramatic? It's hard to know what's reasonable to expect!
Lots will be going on behind the scenes, I drove myself crazy waiting for appointments. I received my official diagnosis on 2nd sept and was operated on 10th oct. In between that was lots of appointments. Cervical cancer tends to be slow growing, and it looks as though yours is very early stages so IF there are any residual cells left, they aren’t going to do much over the next few weeks and you won’t come to any harm.
Keeping everything crossed for you, hopefully you won’t require further treatment, if you do though the support on here is brilliant.
The waiting is the worst bit. As soon as you know what your treatment plan is you feel a bit more in control (not necessarily better but at least more in control!) so hopefully they'll let you know soon. If you need a chat or have any questions you know where I am - always happy to talk x
Hi I'm new to this site but I've just been told I had grade 1a1 cc I was told two weeks ago that cgin turned into 5mm of cancer but with clear margins had mri that came back unclear abnormalities luckily they think I had a reaction to the loop biopsy and think there is no more cancer waiting for meeting with surgeon to discuss options I too was worried what if things progress while waiting but have been told its slow growing so try not to worry the waiting is the hardest part.
After harrassing the nurses ever so slightly I got a call today to say that they wanted to repeat the loop to remove the remaining CIN and do a hystoscopy (look inside my womb)on 27th Nov under GA. I'm pleased things are moving but things are made slightly complicated by a holidy I have booked so they were looking this afternoon if they could get me in sooner...
They are unsure about the pains I am having, said unlikely to be infection this long after the loop so I dont know what to do - should I go to the docs or just wait till they have a look inside? Pains are in pelvic region and Ive had them 2 weeks tomorrow. They weren't overly helpful if I'm honest...
So, I was surprised to hear they weren't doing and MRI, I asked she said they wouldn't normally do one for an area of cc so small. This surprised me when some of you who have commented on here had one...
Have you heard anything princess? Grateful for everyone's cmoments, so glad I found this site.
Stomp your feet and demand a scan, I think I would. At the end of the day it is peace of mind which is what they don't seem to get. It amazes me how NHS trusts differ so much when it comes to diagnosis and treatment.
I got good news today. No sign of CC, CIN II result and now on to 6 monthly check up's.
I do hope the rest of your journey goes smoothly. The waiting is simply awful.
Honestly Natalie, you are not telling them how to do their jobs. You simply tell them the psychological impact is it having on you not being 100% sure that they have removed it all. It's all about peace of mind and you won't relax until they do a scan I am sure.
Just because to them it was a small amount does not make it any less real for you. You make sure you get all the answers you need Natalie.
glad u know what's going to happen and hopefully they will get it done sooner x
as for MRI, they may well not do one as it was a small area and the MRI is usually to show if there is spread to other areas. I don't think it shows small amounts well so maybe this is why it has not been offered. But do ask why, they should be able to explain why not just fob u off with it is procedure.
I know when ur in the middle of it all, everything seems bad. But at the end, u will have more peace of mind and realise everything has been done for the best. They just don't tend to share their thinking very well and is everyday stuff for them. obviously they don't want things to get any worse for you too!!! Much more complicated for them if it does! after my op I reflected on whole thing and realised how well I had been treated and how everything had been done well, even if it hadn't been explained to be at start. At start I thought I was being treated badly but it was only cos I didn't understand what was going on behind the scenes. So ask them to explain a bit more to you xxx
as for the pain, yes I would go to the GP. It's not right to be having pain for 2 wks and may not be related at all to all of this. Again, for peace of mind. Then perhaps u can question a bit further about other stuff.
The next LLETZ will show if all has been removed- if there are clear margins then u will be cancer free! (Well, as much as anyone. We all have cancer cells, just depends on if they develop any further. I tell u, I've found out so much stuff about cancer in general since being diagnosed, it's amazing!!!)
Just had a call from the nurse, they've had a cancellation for tomorrow so have added me to the list for 7am so things are moving fast now. I have the lady consultant who gave me my diagnosis doing the treatment so I feel happy about that too. I'll have a chat with them about the pains tomorrow face to face and see if we can get something sorted.
