I was recently diagnosed with stage 1a1 cc.
I had lletz before the diagnosis and have since had a CT scan and a MRI on Wednesday just gone.
I’ve been referred to UCLH to see a consultant on Tuesday. I’ve been advised it may last all day and be prepared for anything including surgery
I’m absolutely petrified and I don’t feel like I’ve been told any information to put my mind at ease.
I have no idea what possible treatment is available and I’m not even sure how serious it is. I think I’ve kind of blocked it out of my mind.
I’m 28 and have two children aged 7 & 5.
Could somebody please help me?
Even just tell me what happens next? What will happen at my appointment? What possible treatment is available? I’m freaking out now.
I just wrote you a great long post and then I think I nuked it by mistake, so here I go again..
Welcome to the forum - THE place to be for help and support and welcome to the 1a1 club.
I cannot believe how you've been left hanging with so little information. That is totally ridiculous and unprofessional. Perhaps you could call the hospital on Monday and see if you can talk to someone who can fill you in.
For what it's worth, here's what I know. The most likely scenario is that you have squamous cell carcinoma. It's most common. The treatment at your super early stage would probably be a LEE/LETZ procedure to remove all the bad cells. Or, they might do a cone biopsy where they surgically remove an upside down cone shaped piece of your cervix under general anesthetic. Takes about an hour, start to finish, and you go home that day. That cone shaped bit would contain the cancer.
Adenocarcinoma, which is rarer, is usually treated with some kind of hysterectomy, even at 1a1, because it can hide in the cervix (as I just found out) despite everything looking clear around it. No one is going to ask you in for an appointment and then spring a hysterectomy on you, right there and then.
So, much as I am clearly no doctor, my money is on the the minor procedure to nuke/remove Mr. 1a1 and then you will be sent on your way.
Do not freak out. You will be fine. Shout at the doctor though who you left hanging.
Hope that helps. I'm flopping around at home recovering from my hysterectomy so, as you can see, I'm all over this forum at the moment! If you read my signature you'll see I'm a 1a1 adenocarcinoma girl. I say girl, I'm old enough to be your mum!
Take care baby and jump back on if you have other questions.
Thank you so so much for commenting, your message has massively put my mind at ease. I've just gone through the one piece of paper work I have and although it's completely in doctors terms it does say squamous cell carcinoma.
I will defintely be moaning about how they have left me hanging, ive been so stressed.
I hope you're recovering well you amazing lady.
You're so welcome! So many women jumped on to help me when I was first diagnosed that I wanted to help.
You'll be fine and if you do end up having a hysterectomy at some point, that's not so bad either.
Hi Ashleigh :-)
So sorry that you have had to find yourself here but very glad that you have joined us. From now on ask all your questions here and stay away from Google!
Teresa! What a fabulously clear explanation! You wonder-woman you! I have often wondered why some of us have hysterectomies and some get away with so much less. Thank you!
Hey Tivoli, thank you for your reply
Ive woken up today feeling much better than yesterday after knowing people are here to talk to and receive information from.
Teresa really helped last night and I'm so thankful xxx
Hiya , I also found out I had a1a a month ago , I still have a lot of unanswered questions too . I've not had any scans but go back on the 20th for a second lletz my first one removed all the cancer but I still have abnormal cells so need the treatment for those . Best wishes with your treatment . Lisa
Another 1a1 girl for our club! Keep us posted Lisa.
Thankyou , Teresa. Good to read that you now have been the all clear best wishes to you also x
Hi, I was a 1a1 girl, mine was treated by a trachalectomy, but the main reason for that was because I hadn't got children, so that was carried out to try and help preserve my fertility xx
hello ladies im also in the 1a1 cateogry had my cone biopsy on the 5th of december last year and the last couple of weeks i have been experincing almost trapped wind like pains i dont know if this is normal,my consultant said he had removed all the cancerous cells but i have to go back on the 5th of march to get some abnormal left over cells removed i had an mri scan which showed the cancer had not spread but im getting myself really worried about what these niggling pains could be x
I know this post is been so long but hoping you will reply I was diagnosed with invasive squamous carcinoma after cone margins are clear with cancer but theres cin 2/3 left in the outer part of the cervix im meeting with gyno/oncologist next week im so anxious!! I want to have another baby I already have 7 years old planning to havr one again next yr!!! what treatments did you get to remove your remaining abnormal cells.. thank you