Newly diagnosed with cc

It’s been 4 days now since I had the news that what they thought were cin 2 was in fact cc… I’ve been left feeling confused and devastated…as all of you have probably been that have been through this. My consultant isn’t very forthcoming with information and I really had to push him to ask what my lletz biopsy’s stage had come back at…he said the path report said it looked like stage 1b but I am having a MRI on march 6th to stage it properly and to see if it is anywhere else…my question is does anyone have any experience with being told from a biopsy that it’s a stage 1 but receiving a different staging from the MRI? I’m preparing myself for t to be upgraded but how upgraded is it likely to be? What I’m trying to say is can a biopsy show stage 1 but for it to turn out to be at a much higher stage? I know this is an almost impossible question for anyone to answer but I’m so scared that this is what’s going to happen…in nov I was told I had borderline change of cells and since then I’ve gone from borderline to cin2 to having cervical cancer so forgive me for being a little wary when he said don’t worry the pathologist thinks is a stage 1b…sorry for the rant once again but just needed a bit of reassurance from ladies who know how I’m feeling ATM…thanks for listening xx

Hi Kay 

im sorry to hear about your diagnosis but please try not to totally freak out. 

I had a normal smear, went in for an iud and dr noticed area of concern.  He took a biopsy, came back CIN 3, lletz done, came back cc. Dr suspected 1b1 but after MRI was staged 2b.  My tumour was smaller then 4cm but it was just at the edge going into parametria so I was 2b. I had no lymph node involvement. 

So, there are a few things that may change your stage. 1. Size of tumour 2. Where exactly it is  3. Lymphnode involvement. 

The clinical staging and scanning staging are usually not that far off from one another. Regardless of what stage you are cc is very curable. Any lymphnode involvement will put you right to chemorad regardless of stage 1b1 or 1b2. Anything higher in stage will also put you right to chemo rad as well. 

Please ask anything else you need. We are all here for you. The worst part is the waiting for treatment plan, once you know what you are facing it gets easier to wrap your head around. 

Hugs!!!

Hi Kay :-)

Welcome to the forum :-) I am sorry you have had to find us but very glad that you have because this is the best place on the whole internet for you to be right now :-) Keep well away from Google and ask all your questions on here where you will be well supported and will receive open and honest answers to all your questions.

Lolli has already covered most bases so I just wanted to add that for the most part, gynaecological oncologists really know their stuff and usually their initial staging doesn't change by much after you have had the myriad scans and tests they are likely to put you through. However, the happy news is that whatever stage your cancer has reached, cervical cancer is very very curable and the treatments are not nearly so difficult to cope with as you might imagine.

Be lucky :-)
Tivoli

Thankyou so much for your reassurance ladies..I keep reading what you've said over and over again! and you are right the waiting game is the hardest.. I will keep you updated on what results the MRI come back with.

thanks again x

Hi Kay

Sorry to hear about your diagnosis. 

I was staged 1b1 so if you get staging confirmed let me know, I am always happy to answer any questions about the treatment I had.xx

Thankyou...I will keep everyone updated..I'm feeling anxious today as I've just had a letter through asking me to go for a ct scan as well as a MRI..and made the mistake of googling it (I know!) and it said they will use a ct scan if they think the staging may be more or it had spread! 

Fiddlesticks!

The only people who don't get a whole raft of scans are those people who have the tiniest possible amount of squamous cell carcinoma all of which has been removed by a LLETZ procedure with clear margins. If it's adenocarcinoma, or margins aren't clear, you get a bunch of scans. It's not because your team 'thinks' that it has spread it is to illiminate that possibility from their enquiries. Different.

Be lucky :-)
Tivoli

Phew! Ok Thankyou once again for making me see sense! This wait is driving me insane but it will soon be over hopefully and treatment will be in place and onwards and upwards.

kay xx

Scans Done! Just the wait for that phone call or letter now to tell me what they showed! Tired of waiting now but hopefully it will be good news and my treatment will begin 

Hi Kay

Hope the scans weren't too scary! I have to go for an MRI at my next check up and I didn't have one when diagnosed! Hopefully they get back to you soon as waiting is not the best! xx

Hi misstell scans weren't half as bad as I had expected but the waiting is horrendous..I feel like I've been on an emotional roller coaster since November and it's exhausting me! I've got all sorts going through my head from the worst diagnosis to it already of being taken with the lletz I've had but I've just got to try and get a grip and calm myself down..xx

Hey

 

It's totally normal to have a rollercoaster of emotions. Even now after my recent check up I've had a few wobbles worrying about things. Try your hardest to keep busy as I know your mind will wander when you're bored. Xx

Hi Kay just wanted to let you know I was staged 1a1 after a lletz which was confirmed by the MRI last wk. I'm just waiting for an appt to have the cone as I want to preserve my fertility. I was terrifed it was going to have spread too so just wanted to reassure you that there are cases where it hasn't. There are others with similar stories here too. I hope it's good news!

Aww Thankyou!! It's so good to hear reassuring stories like yours! What a relief you must feel even though it's still a long road ahead I just feel that once the staging is confirmed that hopefully the anxiety will ease a little! I wish you all the luck with your future treatment...Thankyou for posting and easing my mind 

Kay xx

I'm sorry to read your news Kay. Wishing you a speedy recovery xx