Hi, this is my first post, wasn't sure whether to put text to screen but have decided to go for it. I had a LEETZ on 23/9/13 and then a cold knife cone biopsy last week for stage 1a1 SCC, and am awaiting the results. Have convinced myself that I am now going to need a hysterectomy, which I know is a possibility. Normally I'm quite a positive person but I feel like my head and body are disconnected. Has anyone needed to have hysterectomy following similar diagnosis? Just want to go into my appt on 18th nov a little prepared with what might be put to me...thank you
i was was diagnosed with stage 1a1 after my LLETZ and had to have a cone biopsy. my cone results came back clear so now I'm just on check ups, no more treatment needed unkess things change in the future
I had stage 1a1, I had a Trachelectomy following a Lletz. I think it’s very unlikely you’d need a hysterectomy … They take into account your age and if you’ve had any children also!
Good luck, I’ll have my fingers and toes crossed for clear margins!
I have a check up with my consultant on the 18th too! I still get abit nervous now! It’s normal for your mind to run away with you!
Try and stay positive x
Thank you for replying Soph, people on here really do listen and respond I think I’m just overthinking everything at the mo. Good luck to you for ongoing clear results x
Hi EmJess, thank you for your reply. I've read up a little (actually a lot!) on trachelectomy vs hysterectomy and most of the stuff I've read say they are mainly an option for stage 1. How do you feel after the trachelectomy? I'm 38 and don't have any children - and had reached the conclusion before all this came up that I probably wasn't going to have any- but now I don't know. Maybe it's the control over choice thing. Anyway I ramble. Good luck to you too for next monday, I'll have my fingers and toes crossed for you too :-) x
Honestly it’s been a tough journey, and now… 4 months on I’m finally starting to feel like me and getting back into exercise! I found the last month or so the hardest as I felt back to normal but I wasn’t and that played with my emotions. But I feel so lucky… I suppose lucky isn’t the right word?! I wasn’t lucky to have cancer!! I feel so appreciative that I could have this op, I think that’s helping me along! I’ve also had a shuffle round getting rid of any negativity (things and people!) in my life and strangely I’m in a much happier place!
They say what doesn’t kill you makes you stronger!
Obviously it’s going to make you question the children thing, even if you thought you wouldn’t have them! It’s that it’s being decided for you and why should that happen!?
Keep strong and good luck Monday… I know this is abit of a scary time for you; message me if you need to chat x
I know that feeling well :) good luck for your results and hope you don't have to wait too long! Keep us updated x
Thanks Soph, will do xx
Thanks so much for your reply EmJess. What i really love about this site is the honesty of you all. Really glad you're getting back on track after your op - it's stories like your'sthat give me hope. And i know i'm probably jumping the gun, but i'm someone who copes better if i've read around all the possibilities that i might be presented with. The weird thing is, if they say it's all clear after the cold knife cone biopsy, i don't think i'm going to be convinced. i almost want to be over treated to prevent any recurrence. Is that insane? Of course i want it to be clear, i think im just over thinking things. How did you manage to get rid of negativity if you don't mind me asking? And going back to the trachelectomy - did you have any idea this was going to be offered to you after your Lietz? Do you think i should ask for a MRI?
Sorry, far too many questions! Hey and good luck to you too xx
Hi Chal, I had 1b cc and had a trachelectomy 5 weeks ago. If your cone biopsy comes back clear then you shouldn't need any further treatment. Have they done an MRI previously? I had one a couple of weeks after diagnosis. I'd echo what Em said - feel free to message me if you want to chat! When I originally went for my appointment to discuss treatment they told me I was having a hysterectomy (at 26!) but I said that I'd read up on trachelectomy procedures and asked them if I could have that instead. I think it's good that you're doing your research so you know what options you have if necessary. Xx
Not insane at all. I think your brain cant help but go there. When I got told my cone was clear I was the happiest I've ever been for about 24 hours...then I started to think about it properly and was the same "how can they tell for sure. Should i have asked for more treatment etc etc". But you just have to trust that they know what they are doing. They wouldn't leave you with any kind of un-necessary risk so if they say that's enough then you have to put your faith in them. that's not to say that I don't sometimes have a random horror filled 5 mins of "but what if that wasn't all of it" but you just have to battle through it. At our stage, the risk of recurrance is really really low and now we will be checked so regularly and are in the hands of the experts x
Thanks again girls for your words of wisdom and empathy, knew i could rely on you all - and i seriously mean that. So no, I haven't ever had an MRI scan, just the Lletz and cone biopsy. Do you think i should ask for one? Or should i stop worrying and just trust that the experts are doing everything they feel necessary? It's difficult to know what the standard is - reading these posts illustrates the different approaches that hospitals/centres have - and the different experiences we have all had - i know i shouldn't really compare to other girls, even if on paper you look to have a similar grade/staging cc, but i suppose it's only natural! I'll just have to exercise my patience muscle (an ex boyfriend once told me to do that....we didn't last long after that!) and wait and see what happens on monday. Thank you for the offers to pm - I may well take you up on those offers girls - thank you. And last but by no means least....Great news Tank86 re clear margins and no LN involvement, that's excellent! Are you still celebrating?! xx