I began a thread on the colposcopy forum this week, unfortunately yesterday I was initially diagnosed with CC 1a1. If you're interested in the background - and the HORRIFIC year I've been having besides this problem in my lady garden, please read this:
Now? I don't know how I feel. My husband is very supportive but I feel I cannot tell my best (only) friend what is going on. She lost her Mum to CC only a few months ago, and is getting married in October - I'm supposed to be her maid-of-honour. How can I tell her about this? How can I tell her that I might not be able to be in her wedding (if I have to have surgery/treatment)? I'm saying nothing to her until I've got a clearer idea of what's going on but I feel like such a liar going along with all the happy wedding planning.
This is horrible. I don't trust my consultant because at my colposcopy/lletz he said I definitely didn't have cancer, now he says 1a1 but it definitely won't be restaged to more than 1b. I'm currently under the care of a well known shit-hole of a hospital and our house move has been brought forward to next week. He wants me to complete all scans etc. at this hospital, even though I'll soon be 6 hours drive away.
I know 1a1 (initially) isn't much in the grand scheme of things - but I'm freaking out and terribly worried that the consultant is continually giving me 'best case' scenario because of my Aspergers and the complete wreck I was during the lletz.
Can anyone give me some perspective? Some personal experiences of 1a1 restaged to something worse?
46 reads and no comments?
Please say something, even if you can't directly answer my questions. I'm desperately working hard to try to keep my panic under wraps.
Hi, I haven't posted on this site before but have read lots of ladies posts including your own. I wanted to say how sorry I am that you are going through such a difficult time and to send you all best wishes for the next few weeks.
I was recently diagnosed as stage 1a1 (May 2014). I was never re-staged to anything else. My story basically: had LLETZ following abnormal 1st smear where they found the cancer, but thought it had all been removed, but not with clear borders so would need further treatment. was sent for an MRI to check for spread elsewhere etc, which came back clear. So the multi disciplinary team decided a further LLETZ would be appropriate to make sure all the abnormal cells are removed. this then came back as clear too, amd am now on 4monthly check ups, first of which is Oct. The waiting in between diagnosis and treatment etc is the jardest part. I can try to answer any questions you may have? xxx
Hello aurora boo, I just logged on & came across your post. I can sense your frustration at the lack of replies - I used to feel like that too but I came to realize that it's probably the case that some of the ladies don't know what to say to you. In my case I believed that it was because I'm stage 4, and if you're stage 1a or 1b - what have you got to offer someone in my position? Perhaps they felt that they were so much more 'lucky' than I and felt bad about giving any advice to try & reassure me when I was down or scared. That is how I see it anyway. However, I'm here to say to you that you will find your own way through this. you will have all the support the ladies on here can give you and I hope that more ladies will come on & let you see just how supportive we can be of each other. I always appreciated when the ladies would come on & reply to my posts, sometimes even admitting that they didn't know what to say, but just to wish me all the best. So, don't let your early posts put you off if it seems no-one is answering, - the replies will come! God Bless
Hi I've just read your post.not been on for a while.I was diagnosed with stage 1b1 three years ago.I had radical hysterectomy and was lucky not to have any more treatment. I can understand your worries about your friend too. Try to remain positive till you no your treatment plan. If you not happy about the hospital you at try moving.it's your body and I hope all goes well . Keep us informed and if you need to talk or just rant we ladies are here for you xx
I've actually just replied to your other post, so forgive me for repeating myself. I can understand your panic and you're worrying about all possible scenarios. I can't understand why your consultant would give an opinion like that when in my experience they are vague until they know for definite what the situation is after the scan results. As I said in my other reply, tell your consultant that you're willing to travel for a scan appt if available sooner (my friend did this and travelled to Norfolk from Essex and saved a few weeks) if you're able to, of course. I think you're doing the right thing by not telling your friend until you know what your plan is. You're not lying, you're waiting to get all the facts. Have you been assigned a cns yet? (Clinical nurse specialist) I've found mine better at explaining things than my oncologist. But don't be frightened to phone his secretary and ask any questions you have. This YOUR body and you have every right to feel confident in the care you're receiving.
Keep us posted!
Sorry, I read your post but didn't respond. I'm lucky in that my scare turned out to be nothing to worry about and don't know what I can say to offer you practical advice or support. So sorry what you are going through. My post was similar. Lots of reads but no replIes. I have been coming back to the forum as I exchanged messages with two ladies who were also waiting test results and wanted to see how they had got on. There are lots of ladies on here with similar experiences who I hope will reply to you ((hugs)) xx
I’m so sorry to hear that you’ve just been diagnosed. I know it really must feel like it’s all coming in on you at the moment.
I’ve not been restaged but was a 2b girl so your earlier diagnosis really is a better place to be. They’ll be able to get rid off the tumour with less treatment. You just need to take really good care of yourself and it sounds like you’ve got a supportive partner.
Don’t keep this from your mate - she’s your best friend and I’m sure she’d much rather know even if it is painful for her.
Have they given you a specialist nurse yet? They really help you cope.
Big hugs to you xxx
I was diagnosed at 1b1 a couple of weeks ago and I too have chosen not to tell certain people and put on a happy face. That alone feels like more stress than I can take but on the plus side, I find the more normal I pretend to be, the more I am able to enjoy moments throughout the day..and in turn, those little moments give me strentgh. I'm sure its been a while since you have posted this and have probably found the strentgh you need by now, but I thought I would share since we're kind of in the same boat.
Stay strong lady!!