CC stage 1b - trying to be positive but still worried sick.

Hello Ladies
Over a week ago I had LLETZ and ‘abnormal cells’ were removed. This Friday I was asked to go back to speak to my doctor. I was a complete mess and knew I wasn’t going back for good news, I was told by the doctor that the results of the LLETZ had come back showing CC1b. This may sound strange but at this point I was so worked up I was relieved it was ‘only’ a stage 1b diagnosis. I was taken for a chest X-ray and bloods taken but now I’m waiting on a date for an MRI scan but I am so worried what will show up on the MRI. Is it likely that the MRI will show the cancer has spread at this stage… Any advice or reassurance would be much appreciated. Thanks xx

I've also just read some more posts from other ladies and I am now panicking that the stage 1b diagnosis may not be correct.. Is it likely that staging will change for the worse and they may have it wrong after the LLETZ?? 

I've also just read some more posts from other ladies and I am now panicking that the stage 1b diagnosis may not be correct.. Is it likely that staging will change for the worse and they may have it wrong after the LLETZ?? 

Hi Claire,

i was in your shoes two months ago (though I didn't have lletz as my smear 2 years ago didn't show anything up so it was only because I was having some bleeding in September 2015 that I was diagnosed in November).

i can only speak from my experience, but I was told from examination alone that I was most likely 1b2 but would have MRI to confirm.  I was also anxious about what MRI would uncover, however after reading posts on this forum I realised that doctors tend to like to give the worst case scenario. My consultant seemed confident from looking at the tumour that it wouldn't have spread, (something to do with it having smooth edges and not looking like a 'cauliflower' as he put it!) and after an examination under anaesthetic (EUA) and MRI this was confirmed and i was restaged to 1b1.

i suppose what I'm trying to say is that the medical professionals we come in to contact with see many cases so they know exactly what to look for and we have to trust that they know what they are talking about.  They are unlikely to want to give patients false hope so I'm sure they do try to give us the worst case.

i think it's inevitable that we worry about the what ifs, receiving a cancer diagnosis is a scary thing, but i just tried to remind myself that I was in the best possible hands and that whatever happened the doctors would know the best course of treatment.

Hope this helps

X

Hi there 

I was diagnosed with cc 1B1 squamas cell after a Lletz in Dec 2014.  It is highly likely that you will remain as a 1B1.  When they do the Lletz they usually remove most of the tumour when it is 1B1, so they have a really good idea of the size.  They have to be 100% sure though as in a very small minority of cases the staging may change slightly.  They do not throw around staging without some really good insight though so you have every reason to be positive.  

Every case in different but with my diagnosis I was cancer free and on the road to recovery extremely quickly.  It was approx. 6 weeks from diagnosis to getting the all clear.  I was also able to have a fertility sparing radical trachelectomy.  

When they did my trach they found NO trace of any cancer in what they removed.  It turned out they had gotten it all in the original Lletz - they just couldn't be sure of this.  Fingers crossed it is the same for you.  Any questions please just ask xxx

Hi Claire :-)

One doesn't get to become a consultant oncologist without knowing a thing or two ;-) I know it's very difficult to keep panic at bay but I'd like to reassure you that if your doctors believe it is a 1b then it's extremely likely not to change. From what I can determine by the treatment plans usually offered, a 1b is usually treated only with surgery and this tells us that the likelihood of any spread to anywhere else is extremely limited. For example, a 2b is usually treated with chemorads not surgery. This is because with a 2b there is a fair risk that the cancer has reached local lymph nodes. However, reading most of the 2b cases on this forum the vast majority seem to show no lymph node involvement. Therefore I would conclude that the likelihood of your 1b being either upgraded or having spread is minimal in the extreme.

Be lucky :-)
Tivoli

claire-so sorry to hear that. Did you even have symptoms and did the doctor notice anything while doing your biopsy or just see abnormalities?

Thank you so much Tivoli, Nellie and Mad Muscrat for your reassuring replies.. You have all made me feel so much better about the whole situation. I'm at the point now where I want the MRI scan done and MDT to take place so I know for sure what my treatment plan will be although my doctor did say he would be pushing for surgery but won't be sure till after the MDT. 

I am still trying to be optimistic and positive but the waiting about is putting down a bit xx

 

Traveler 81 - just to answer your question and I hope this helps; When I went for the colposcopy I was given Lletz straight away but the doctor did not share any concerns although at this point I'm am sure he would have known I had CC. I don't think he told me as I would just worry and he would know more I suppose after the biopsy. 

As as for symptoms I had an unusual bleed in December but that was all I'm afraid but it was enough to prompt me to go for a smear Xx

Oh wow, I would have been so nervous to have been given the LEEP right away. I get back pain at times, but not unusual bleeding. 

I am still waiting on results as well. Best of luck! :) 

Best of luck to you too, I hope you have nothing to worry about with your results :) X 

Hi Claire Like you I had a bleed just before Xmas, no smear tets abnormal at all,last one on 07/05/2014 and on 12/01/2016 was advised I had a tumour likely to be cancerous.Friday 15/01 Doctor phoned to say biopsy confirmed cancerous cells and many pre cancerous cells.He said hopefully this would be early stages but upper half of stage 1.MRI was done Friday 22/01 and if he has results through by today my case will be discussed with West of Scotland specialists and treatment plan decided if not it will be another week before this will happen.Its all a bit unreal (never missed a smear test and surely this is a younger womans cancer I'm 63) and I'm desperate to be told staging etc and although this is the first time I've had the courage to post (if you don't say it maybe it's not happening)this site has been what's kept me stable till now.Good luck with your MRI etc x

 

Hello again ladies. I had my MRI scan yesterday and I'm still worried about the cancer spreading or not being graded correctly in the first place. The nurse started asking me all kinds of questions like who had sent me and if I had an appointment for the results. I explained i had an appointment next Wednesday to discuss treatment plan and she asked do the know what the treatment will be. I told her hopefully hysterectomy and she replied aww at least you have an appointment for your results. 

so now am back to worrying again. I know she hasn't said anything bad but the fact she was questioning me has worried me a bit.

All this waiting must be playing tricks with my mind.. Am I reading too much into this? 

Hi Claire :-)

The best tip I ever heard was 'listen to what they are saying and not to what they are not saying'. Which is another way to say 'don't read anything into it and don't put words into their mouths'.  She was asking you questions, in a queue at the supermarket check-out that would be called making conversation.

Be lucky :-)
Tivoli

Thank you Tivoli. Im just up the wall at the minute and am so greatfull for your reassuring replies xx

Hi Claire,

I'm another 1B girl and I just want to reiterate what Tivoli has said, please don't read too much into what happens at your scans. I was called back after my MRI for more scans and I had pretty much convinced myself from what the admin on the phone said about fitting me in as an emergency to mean I was dying. Turns out they needed to take more scans as the cancer was so small it wasn't showing up! I was a complete mess and put myself through so much uneccessary worry. It's easier said than done but keep the faith, you're being treated and in the best hands. I have my fingers crossed for good news for you :)

Kat