MRI Scan and high grade dyskaryosis

Hi, I hope someone can help.  I recently had a smear and they found I had high grade dyskaryosis.  I was then given a colposcopy.  I have been referred for a LLETZ but before that they want to give me an MRI scan.  At the moment they are saying they think the cells are 'pre-cancer' but cant be sure until the LLETZ has been completed.  I'm worried that I've been referred for an MRI prior to the LLETZ as I thought you would only have an MRI scan if they were sure you have cancer and need to check if it has spread.  Is it normal to have the MRI before thr LLETZ?

 

Thanks!

TessFrown

Hi tess, sorry to hear you are going through this... I am not sure if i can help much but didnt want to read and not reply. As i had lletz done in march for sever changes cin 3, but just had the lletz. The one thing i would say is you need to ask your doc who you are under to make it clear why they are doing the MRI. As they will be able to tell you, as if it were me i would make sure i knew why they were doing it. Its a scary time i know, and its natural too.

Let us know how you get on, is there a number you can ring to speak to anyone who could answear questions?

Sorry i couldnt help much. Hope you are keeping ok. love sky x x x

Hi Sky,  thanks so much for replying. Before the colposcopy examination the consultant said that they were booking me in for the Lletz. When she completed the colp she said they would also book me in for the MRI just to check everything in general. I did ask straight out whether I had just the pre-cancerous cells or actually cancer. She said that the LLetz would determine that once they take a biopsy. So, I'm hoping they are just being super cautious but my mind is thinking all sorts.  The MRI is booked for this Friday and the lletz Fri 31st May. How did you get on with your Lletz? Are you ok? Tes x 

Hi tess, like you said they are prob being extra cautious, but your doc is right in saying that they will know more once they get results from lletz or biopsy, as i had a biopsy done befor they done the lletz. And it took about two wks for the biopsy results to come bk, and the waiting was really hard as its natural to have all sorts of things going through our heads when we are waiting on results. I ended up staying at my mams the whole time as i couldnt function at home alone, my partner works long shifs. So i know how scary this time can be you are not alone.

My lletz was on the 13th march so just about ten wks has passed now, the lletz it self was not bad so dont worry over that once they numb you we dont feel a thing, i bleed that day then it stoped and had watery discharge for a while. The last few wks i have a few issues with bleeding and keep telling myself that my bleeding issues didnt start till all this happened and having lletz done, but i am bk and forth from docs still, i did write a post called personal question if you want to have a look at it. But i am just trying to stay postive as i have really found these last few months hard, all this has changed me. I have found my self worrying over every health issue i have and dont feel that care free woman i once was, if you get me. But we do get through iti i dont know how but we do, we all have a strength in us that we dont know we have untill we are tested.

Try and keep yourself busy, and if you need to talk we are all here we know what you are going through. good luck let us know how you get on.

love sky x x x 

Hi Sky, thanks again for your reply.  I read your post.  What has your doctor said about the bleeding?  Is it a case of wait and see as you may still be healing from the lletz or is there anything they can do about it now to stop you worrying?  It can't be nice as I guess it's a reminder of what you have been through. 

They are giving me a general anesthetic for the lletz which I'm delighted about as I'm so squeamish!  And  I'm not really worried about the actual MRI procedure, just the results!  I'm putting off making plans for fun things like holidays and the like until I know my full diagnosis.  I keep thinking I can't have cancer as I feel really fit and healthly!  I guess it's the feeling of being in limbo that I am finding hard to deal with.  Then I feel silly as I could be worrying about nothing and I don't want to make a big deal out of it when speaking to family and friends.  I just hope the doctors are honest and factual so that when I get the results I have a clear view of what's happening. 

Did your biopsy results come back ok? Did you have to go to the hospital for them or how do they give them to you? Did they confirm that the lletz treated your abnormal cells or do you have to have any further treatment?  How long did you have to wait for the results?

Take care,

Tes xx

 

 

hi again tess hope u feeling ok today.. I have been to docs a few times now, and just dont seem to be getting any were. The nurse who took my swabs said it could be just down to the lletz, but its been nine wks already, or she said hormonal think i spelt that wrong.

My biopsy results came bk as cin 3 high grade changes, and i got my results through the post for that about two wks after, they said if it was not that i would get a call to go in, so i was really happy when the letter confirmed cin 3. The waiting for results was the worse part as the fear i felt was the worst thing i have felt. My results from the llezt said they seem to think they got it all but never said out about clear margins, so i rang to ask about this and agin never got a clear answear, so i guess they were not clear. And i am due bk in september for my six month check, and to be honest i am not coping well as just feel like my lifes on hold as i try to think positive about it but the worry never leaves you. my results from the llezt took about two wks to get bk to and also came by letter. 

so i am just at a point were i get up and try not to think to much about it as its not doing me any good, its not gunna change things is it.... My family tell me not to worry, but they just dont get it, i think you have to go through it to understand thats why this forum is brill.

Tess you are not being silly worrying its totally normal to be feeling the way you are, but i will say try and keep ur self busy, dont let it take over you. I have my fingers crossed for you that all goes well. Its good that u having GA and you feel ok about that, they will take good care off you i am sure. Write a few things down that you want to ask when there, as this always helps as i had loads of questions to ask but went blank when i got there,so write it down so you dont forget.

Take care tess, drop a line anytime i will try my best to help any way i can. love sky x x x 

Hi Sky. Thanks again for you reply. It's great to speak about this with others that have been through it. I'm impatient so thanks for letting me know how long things take.

 
With regards to you, although you got the good news that the lletz treatment worked you are still lacking information. The nurse at the colposcopy clinic gave me her number in case I had any questions. Could you contact somebody there? They might be able to let you know about the margins and whether they can investigate the bleeding further. It might be worth a try. Otherwise you will feel in limbo until your next appointment.  Xx 

 

Hi tess, thanks for getting bk to me. I am going bk to docs this week if i can get in as its a nightmare to get an appointment sometimes, as i like to see docs i know, as it makes us feel better seeing someone we have seen befor. Started bleeding again last night not much but getting more each time now. I keep thinking it must be down to the lletz, but will be gettin checked to make sure. As i still have all sorts going through my head, i did ring the colop clinic and asked about my clear margins but the nurse i spoke to was not very helpfull and when i said to her about them she just brushed it off, so i said does that mean i need more treatment if my margins are not clear, she just said whos told you that. ( and still never give me an answear to if they were clear) so this is why i am thinking they were not clear. So its made me feel like i dont want to ring them bk, silly i know but its so off putting when you get someone who is not helpfull.

Hope you feeling ok about things, waiting for appointments is hard, i felt like it took ages for my lletz to come round but i guess thats because we worry and makes it feel longer. But i can say once i had it done the worrying gets better. 

take care tess hope to hear from you soon. love sky x x x 

Hi Sky,

 
Had the MRI done today. It was absolutley fine. Just waiting for the results now....
 
How are you? Did you manage to get to the docs. Xxx. 
 

Hi tess, glad to hear u feeling ok and mri has been done.  Do let us know about ur results on it.

I am bk at docs on wed next week 29th. As i still bleeding and at one point got worse, its calmed down a bit now but still there. I just want to know whats causeing it, as i know its more than likely to be down to the lletz but it shouldnt be going on this long. To be honest i dont think i have healed well, and need to know if it needs looking at closely so they can tell me, as i dont want to be doing things to make it worse if you get me. So i will let you know how i get on thanks for asking.

Take care tess and keep in touch. luv sky x x x 

Hi Sky,

 

How did you get on at the docs today?

Tess xx

Hi tess, I went to docs yesterday. The doc had a good look around and said all looks well and healing looks wel too, but she said she can only see so much as dont have all the equipment that the colop clinic will have, and as i am still bleeding she has sent me bk to colop clinic. So i am just waiting to get a letter with appointment now. She said i should get one in a wk or so, but that could take longer you know what they are like on timeing things. The bleeding is not bad today seem to have stoped a bit, but then it will just start again and because its been going on for few wks now, she said its best to get checked. Which i am happy about as i want answears to why its happening, will let you know how i get on.

Hows you tess, any news on things yet? And is your lletzt tommrrow, hope you feeling ok and try not to worry to much, lletzt isnt that bad as we think its gunna be. Do let us know how u get on. take care luv sky x x x 

Hi Sky, it's great they said everything seems to be healing well and another check with a colop should all be good. Fingers crossed you will get to the bottom of it and the bleeding will stop.  Let me know how you get on. X 

 
I had my appointment yesterday. It was bad news. The MRI confirmed I have a Stage 1b1 tumour. I had the lletz after they told me that as they still need to take a biopsy to confirm which type it is. The whole experience was awful. They said I couldn't bring anyone to the hospital with me as they don't have the waiting facilities. So then they gave me that news and I had to get changed to my gown and wait another hour all on my own for theatre.  All I wanted them to do at that point was knock me out so I could sleep and forget about it. It just feels surreal. I have to go back in 2 weeks to discuss treatment. :-

Hi tess, so sorry to hear your news i really dont know what to say to you, it must all be a shock right now. And that must of been a nightmare for you not to have any one with you at hospital, you must of felt so alone, i cant belive they done that to you. Tess you can get through this, its a massive thing to be faced with and my thoughts are with you. And any time you need to chat i will be here for you. 

Keep thinking positive hun even though i know that is hard right now. Do keep in touch and let us know how you keeping. 

take care luv sky x x x