I have been watching posts on this forum since I found out I would need to have a loop under GA but have never posted. I thought now was the time after speaking with a lovely lady on the helpline who thought it may be useful as so many of you on here can relate. It’s certainly inspiring to see so many ladies dealing with this difficult time with strength and resilience.
The story is that they found extensive CIN3 and I went for a loop under GA as mentioned at the start of last month. The op went well and I was optimistic that would be the end after hearing that most ladies are back to normal after their treatments. Unfortunately I had a call from the Nurse Colposcopist 3 weeks later inviting me to discuss my results with my Doctor. It was honestly the first time I allowed myself to think it could be anything more than just precancerous abnormalities that were now taken care of.
Anyway, I was diagnosed with CC last Friday. I was very shocked, despite believing I had wrapped my head around the fact that it could be Cancer after the phone call from the nurse. I honestly don’t think anything can prepare you for the word being said to you.
I am due for my MRI next week and my nurse has arranged for me to be able to go back the next day to discuss results, although my Doctor is sure it is Stage 1b1.
I feel fine most of the time but am struggling with the thought I actually have Cancer and have started to think maybe I did have it previously but it’s now gone or perhaps there was a mix up! I know this isn’t the case but unfortunately the mind thinks what it wants at times like this!!
Sorry for the long post, I just wondered how other ladies felt at this stage and what their next steps were (my Doctor hopes we can treat with a Cone… Has anyone ever had their journey end after that?) I want everything to carry on as normal, is this possible at this stage?
I think I just needed to type that all out in some ways! So thank you to anyone who took the time to read!
Best wishes all X
I am sorry that you find yourself here but glad that you have found Jo's. It's great that you have been able to just read some posts and have some comfort, and now that you have posted, you will receive lots of support and love from all the lovely ladies here!
I am sorry that you have had the diagnosis, but Cervical cancer can be very treatable, especially in an early stage! If your doctor thinks it can be treated with a cone biopsy - then that's fantastic! A cone biopsy from what I understand, has possibly no side effects except extra precautions in pregnancy (I could be wrong about this).
I am a 2B so bit more advanced (although I was a 1B1 at one stage, long story), but there are lots of ladies on here who are 1B1 so will be able to share their experiences with you.
In regards to how was feeling at that stage - it was a really up and down emotional time and I think you are right - nothing can prepare you for hearing that you have Cancer. I understand what you mean by "possible mix up" - in my experience, I was in complete denial about my diagnosis, even when I was told at the colposcopy it was cancer, even when I was told after the EUA it was cancer, I did not believe it til the pathology came back from the EUA.
As soon as you have your treatment plan in place, you will probably feel better knowing what you need to do :)
Lots of hugs to you lady
Hi citygirl, sorry you have to find yourself here but you will receive amazing help and support here.
i was the same as you, lletz under ga then diagnosed with 1b1. hopefully you won't change from 1b1.
good luck for your mRi, hopefully there's no spread. This is the worst part the waiting, once you get that out of the way things start to move quite quickly.
If you can get treated by cone that would be amazing. Best of luck, feel free to pm if you want to ask anything.
Hi citygirl i was exactly the same as you, reading all the posts but not sure what to write as head was so full. I had my MRI and CT scan this week and advised 1b1 yesterday. The waiting is definitely the worse, life feels on pause and no matter how much you try to keep things normal it's there in the back of your head. From the info I was given today 1b1 is a early stage. I found once the MRI scan was done I relaxed a bit and after results just anxious to start treatment but I need another scan to check lymph nodes before they make a plan so again waiting makes your mind run away but stay positive and just let your thoughts out on here, everyone has been so kind and helpful
Best wishes Laura x
just wanted to say "hi" and say "you are not alone", I've been just recently diagnosed myself and am waiting for my treatment to start.
I know everything seems so crazy right now and it's so hard to control your mind from thinking the worst. Last week I was in that boat. I was just staged this past Monday and already I am feeling much better. I'm now just busy preparing myself for my treatment but feel like I'm not in limbo worried about the worst.
as soon as you figure out what the plan is things will settle in your mind. Stay away from Google and be positive.
You got this!! You can handle this! You have everyone here to support you!
Hiya Citygirl :-)
Welcome to the forum and sorry for your circumstances. First off I'd like to say I'm impressed that you are going to talk with your consultant about your results the day after your MRI. That's the same timescale we have here in Greece but it seems most women in the UK have a much longer wait than that to hear their results and I can promise you, the very worst part of the whole ordeal is waiting to hear the results.
I can totally relate to your mind refusing to take on board the fact that you have been told you have cancer. Cancer? Me? No! Can't be! I'm not even ill! Well the good news is that this is a really treatable cancer and if you can get away with just a cone, so much the better. You may well find that in only a few short months it will be a case of Cancer? Me? Been there, done that, got the T-shirt.
Be lucky :-)
Firstly, thank you all so much for your replies and kind words of encouragement. It really does mean so much to me that you have all taken the time to read and respond.
I think you're all right about the waiting.. It seems I have a lot of information for the stage I'm at compared to a lot of ladies who are in the dark for a lot longer but it still feels you just want to know what exactly is next so it's easier to get your head around. At the same time, it's difficult thinking I'll soon know dates etc of treatment as it will be real and I'll start having to plan time off around work. I'm a workaholic and it has been one of the biggest things on my mind since I found this out (although I know my health of course comes first!)
I think the advice that everything will be clearer and easier to manage after I have had my MRI next week really makes sense so maybe just taking it a step at a time and getting that 'out of the way' is the way forward! I'll update with results :-)
Tivoli- thank you. Looking forward to the time when I can say those words already!
Just checking in to see how you're doing.
Have you had your MRI - I think you said it was this week? Any treatment plan yet?
Sorry if you receive this twice, I just tried to post but it seems the page crashed just at the wrong time! Anyway thank you so much for checking in, it's really lovely of you. I have had my MRI which shows no visible spread which is fantastic, looks like my staging has stayed the same at 1b1 with some extra info I didn't have before.
Trachy is my next step as the cone just wouldn't cut it in this case (literally!). To be honest I did think this would be the case. Not too sure how I feel. Relieved there is no spread but nervous about what is to come and just hoping this gets it all! Of course my Doc is very honest about the possibility this may not be the end of the road and is unpleasant enough in itself in many ways..
How are you? Your signature shows your latest test was clear... Congratulations! Just wondering how you found your whole experience generally? What a blanket question eh? So pleased to see there is light at the end of the tunnel, although I know it must feel the tests are non-stop and somewhat gut-wrenching even after a clear result!
Well, fab news from the MRI. If your doc is going ahead with the surgery you must be very early stages and contained. This is good. The trachy is very doable - tons of ladies on here have had the surgery, which is more complicated (for the surgeon) than a hysterectomy, but had great outcomes.
For me, this whole experience has been an utter shock. I was symptom free and had years of clear annual smears (that's the protocol here in the US.) The diagnosis was a shock and the tests, as you say, seemed never ending- I think I have been to more doctor's appointments in the last few months than in the rest of my life. It is scary, even now. I'm still anxious about every little twinge and know that the run up to my 6 monthly checks will be nerve racking. However, each day I feel that I am making progress towards living with this diagnosis and getting back to my life. I am seeing a therapist because of all the feelings and fears that this has stirred up. I find it kind of useful-ish and I do like being able to talk about what I'm feeling without worrying friends and family.
I do think that this forum is a life-saver. I had no idea how comforting I would find it. This whole cancer lark is so scary that having other women's support has made it so much more bearable and I must admit I never thought that would be the case. I hope you will find it the same.
Let us know when you have your op scheduled and jump on if you have questions or want to chat.
love t x
Hi city girl sorry to hear you've been diagnosed! I was diagnosed on 7th July 16 at stage 1a1. I am having another LLETZ loop treatment on 9th august. I just feel lucky that it has been detected at an early stage and that it can be treated.
I understand how you feel. It is very daunting to hear those words but I had prepared myself for the worst after I was invited in for a further appointment at the hospital after the first LLETZ treatment on 15th June 16. It did cross my mind that there were some concerns as I was just told I would have a follow up in 6 months time with my GP.
Being just 24 years old, you don't think it's ever going to happen to you. I've come to terms with the news and have such a good support network around me.
I find talking about it helps but joined the forum to speak to people who are currently going through the same thing and can fully relate to my situation.
i just feel blessed that I went for my cervical screening early!
Teresa- I know, I definitely am taking a positive from the fact it's looking like I can be treated with surgery. I'm currently just waiting for my date at the moment and I think when I have it I will feel better as I just want to be able to plan everything now. I think feeling like I'm out of control of the situation and that I can't forward plan is a huge thing for me- I am a self admitted control freak and am finding this side of things difficult. Definitely know what you mean about the shock, sometimes I find myself thinking about the odds of this happening and can't wrap my head around it.. It still seems very strange. Also think you're right about the forum- it's nice to have somewhere to go where people know what you're going through. For the most part, I want everything to stay as normal as it possibly can but when I need to talk/ hear/ read about it this has been so, so helpful. Thank you again for responding.
Aristie- So glad to hear you have a great support network around you. I was the same in that you assume when you're called in to discuss results it isn't going to be great news- but it still didn't really sink it until the Doctor spelled it out to me. Is the lletz the only thing you have planned so far? Will be thinking of you on the day- the good news is it's nothing you haven't already sailed through :) also I did actually PM you after reading another post of yours just to say I know how daunting it can be at such a young age. I'm also very young and this experience is all a result of my first smear test. But completely agree, very thankful this was picked up at the earliest opportunity. 1a1 for yourself is the lowest possible stage so the best news you could hope for if you were going to receive a diagnosis :)