Hey all,
So yesterday came the news of having stage 1.b.1.
I will be having mri and ct scan within the next two weeks and I am absoloutley terrified of it being elsewhere :(
I don't really know what im wanting from writing this, my head is just all over the show
N xx
Hi N,
I am so sorry to hear of your recent diagnosis. I am still in the stages of waiting for results but I just wanted to send you a big hug and lots of love. Its such an awful and scary thing to go through- especially when its so unexpected!! Hopefully one of the other lovely ladies on here who've had a similar diagnosis to you can send some words of wisdom and advice
xx
Hi N
Just wanted you to know you’re not alone. I know I have a villoglandular adenocarcinoma however I don’t know the stage yet. I’m waiting on an MRI and CT scan. I totally understand your fears and it feels surreal and terrifying. Whatever happens there is support here and you’ve got this!
C x
Thank you so much for your replies,
It's been a whirlwind few days that's for sure, you know when you think you're in a nightmare then you wake up in the morning forgetting and then it hits you again.
I think it's going to be a whirlwind for a little while yet until I have a plan in place re treatment etc
I haven't cried today so that's a bonus :) I hope that the mri and ct shows it contained but we never know hey and until then I can't stress about it as nothing can change it right now.
You're both right, it's such an unexpected and surreal thing to take on board and get our heads around.
Thank you again for your messages
N xxx
Hi Natty
Well, this time last year I'd just had my pre op appointment for estimated 1b cervical cancer. I had my operation the day after May bank holiday. I remember walking to the theatre and the anesthetist who walked me down said this time last year I was in your position, at the time I thought I wish my clock would fast forward a year and this nightmare be over. Well, here I am and have my 12 monthly check up next week.
At your stage it will all be scans, pre operation (If you are having a hysterectomy) tests. It really is the worst point. I had a radical hysterectomy by keyhole and was allowed home the following day. Had to have a catheter for a week which is manageable then went back two weeks after for histology results, all clear and was put on 4 x monthly follow ups.
Depending on your age and stage you may not have my op, can be treatable other ways if you are planning a family. I can only tell you my experience.
If you have any other questions, please ask me. I don't think many 1b patients hang around and keep on posting, moved on and back enjoying life. There really are a lot of us out there.
Wishing you the very best xxx
Hey Helen7,
Thank you for your reply.
Yes the waiting is the worst, my best friend and I have joked that let's get on and remove it ourselves so it's gone, I think humour and the sense of humour that I am surrounded by is a big bonus at the moment for my mental state.
I would just love to get going, the nurse called me yesterday and said my scans should be next week.
This has all happened so fast from the day I had my smear to a visit to colposcopy for a double lletz procedure to being diagnosed has all been within a month!! The NHS have been incredible.
I am 31 and as far as I'm aware have no other medical problems, rarley catch a cold, run half marathons and even climbed Ben Nevis the day after my smear!
It's all just a shock and I know with a positive look to it that I will fight this and get through it, I think I'm more scared as I really don't like hospitals which sounds silly as they are there to help you!
I will keep you updated on how I get on etc and I can't thank everyone who I ahve reached out to enough :)
I am glad that yours went well and you are a year away from the nightmare and I hope everything is all good on your 12 monthly check up :)
N xx
It's good you are sounded by friends with gsoh, you really need it. Even though it's a very worrying time I could write a comedy sketch over some of my things.
The NHS were fabulous the way they race through things. Initially I was terrified as I didn't have a staging. I asked why everything was rushed so they told me they've a 62 day rule to get your treatment started from a referral.
I had a radical hysterectomy including ovaries, in most cases they leave them, I was menopausal anyway so didn't matter to me. Xx
Hi N
Glad you’re surrounded by good friends, I too have had great support and I have quite a dark humour which I think helps (well it does me).
I have just found out I have my MRI and CT scans on Wednesday and then they’ll discuss my case at the MDT meeting the following week. Fingers crossed for a plans in the next couple of weeks.
Good luck xxxx
Hey, I found out I'm 1b1 yesterday too! I was originally told 1a1 but after a meeting they regraded to 1b1 and that's all before my scans that are next week too! I'm 26 and have no children so hoping for a trachelectomy rather than a hysterectomy and that was something my consultant was saying would hopefully be possible. If I'm honest I don't even feel its happening to me but I'm sure that will change when I have a catheter in my bladder! All the best for your treatment!! Xxx
LC x
Hey all,
Today I woke up feeling so emotional, I thought I was dealing with this OK :(
I had a double lletz treatment nearly 2 weeks ago and at first had light belleding but now it is heavier and I'm so scared, I keep reading contradictions some say its normal some say not, I don't have any pains or feel unwell etc I don't know if my mind is just going into overdrive after being diagnosed.
Jeez what a rollercoaster I just want to get in for my scans and get this nightmare over with.
Thank you all so much for your messages they really do help
Lots of love
N xx
Hey N
i’m just starting my 2nd week of Chemoradiation for stage 2b.
i just wanted to tell you it’s ok to feel the way you are feeling. I’m as positive and proactive as they come but still have the downs as well as the ups.
you are coping amazingly well! You are doing a fantastic job processing it all as it’s nothing short of a mind£&@k!
Go easy and be gentle with yourself.
You’ve got this xxxxx
I found out I have at least 1b on Tuesday. At my desk at work because some idiot uploaded my report to my online patient portal! Then colposcopy nurses refused to speak to me about it and said it’s out of our league that’s why you have an appointment with the consultant tomorrow. (They booked it the week before and told me it was nothing to worry about, didn’t tell me I should bring someone with me THANK GOD I did although I already knew didn’t I!)
Macmillan nurses got me an urgent MRI on the Friday. She told me to drink a litre of water before and hold it in, the radiologist said nope you need an empty bladder go to the loo now!
Appointment with the specialist and Macmillan nurses at 10AM tomorrow.
I’m 24, single, no kids and desperatlely want a family. First smear was in February, routine invitation letter 6 months before 25th birthday. I BEGGED for an early smear at 21 as I had all the symptoms of cervical cancer and got told I was being ridiculous. And here we are...
Since Feb I’ve had so much wrong information from colposcopy. They told me my cone biopsy would be local anaesthetic 20 mins in their clinic and nothing to worry about. Then I got a call from gyno to arrange my pre assessment for GA... they’ve been snappy and rude with me when ringing up scared to ask if they have my results yet.. devastated I’ve got cancer but relieved I can now call macmillian nurse instead of the absolutely horrendous colp specialist nurses.
Not sure how anyone else has dealt with the diagnosis but I booked a train to see my family and friends (I live 200 miles away from my mum so that’s gonna be hard!) I’m ridiculously ‘extra’ with everything in life so yesterday I demanded balloons and Prosecco... went for ice cream and made extremely dark jokes all day. Posted the balloons etc on Facebook and then broke down at about 11pm as my dad thought it would be ok if I meet his step daughter for the first time today!!
I wish this forum was an app...I downloaded an American one called belong and all I’m getting is religious wellwishers I just want to be able to chat easily! If I win the euro millions I will get us an app!
Hi
my LLETZ was 1st May, for the first 10 days I had a brown/pinkish watery discharge (sorry if TMI), then I got period like cramps and quite heavy bleeding with some small clots. Soaked 2 x thick maternity pads in less than 30 mins, clots weren’t big about large grape size. I called the local gyn ward and they wanted to see me. I got antibiotics for a ?infection however my consultant has since said to me “oh yeah it’s common to have heavier bleeding about day 10”. It would’ve been helpful to have this information before I started panicking and thinking this bleeding meant to tumour was everywhere! (It turns out there was no infection the swab came back clear)
The long and short of this waffle is that it’s quite normal to have a heavier period like loss after about 10-14 days. If you’re worried then call your contact details (should have got some on a leaflet after your LLETZ) and get checked out.
Try not to worry,however I know you will. Xxx
Oh Katie, I’m so sorry you’ve had to join this group. I’m also so sorry you found out the way you did.
I only found out about my cc 8th May, I’m waiting for MRI and CT scan on Wednesday. The first few days I really struggled,like a horrendous nightmare that I’d wake up from. I allowed myself a day on the couch to wallow a little,didn’t get dressed and then thought “right I need to get on”. I still find things difficult, I have some good days,some sad days and some days where everything seems so surreal. Be kind to yourself and allow yourself to do whatever you need for you.
The waiting really is the worst! But you’ve got this!
I’m happy to chat whenever you need!xx
Hey,
Yeah I'm a born worrier so this has thrown me into meltdown!
However I think it is all in my head as I'm not soaking pads it's just heavier then what it was straight after the lletz treatment. I didn't get any information after the lletz procedure apart from being told no sex for 3 week, don't use tampons and don't bathe just shower, no leaflet.
I'm glad that there are so many lovely ladies on here for sharing how we all feel and our experiences, howevr I'm not glad for the reason we are all on here!
I'm just taking each day as it comes and if holding it all together one day then crying the next is how it's going to go then so be it, I must remember... I don't feel ill, I don't look ill so mentally I have to belive that nothing has changed and all will be sorted!
My husband took me away for the weekend in the campervan... I dropped a fork and burst into tears...ridiculous lol
Lots of love to you all and thank you
N xxx
Evening ladies,
I had a call to say that my mri is booked in on the 29th this month and hopefully my ct scan will be around the same time!
Just want to get going!
I hope you're all OK and had a good weekend :)
N xx
Hi
Glad things are moving along for you! It helps when you get dates to head for. My MRI and CT on Wednesday so getting a bit nervous and worried again. I keep looking at stats etc o line which probably isn’t helping!
C x
Hey Lotty,
I'm glad you also have a date as like you say it helps the mind... A bit!
I will be thinking of you and please keep me posted, I feel claustrophobic already just thinking about mine!
Lol don't worry I keep doing that to we shouldn't but I can't help it!
N xx
Thank you! It’s nice to have someone else going through it all at the same time. (Although I’m not glad that anyone is having to go through this!)
Im not having a brilliantly positive day today but hopefully tomorrow will be better.
i also feel claustrophobic thinking of these!ill let you know how it goes xx
I know what you me a hey, it is so nice to have people to tlak to but as you say, totally sucks as to why!
Oh don't worry, yesterday I had a terrible day crying at the most ridiculous things, but today has been a better day.
If I'm feeling rubbish I just say to myself, do I feel any different? No. Do I look any different? No. Therefore I won't let the mental did eof it make me feel any different, each day is a new day and a day closer to getting it sorted! We can do this and we will!
I spoke to the nurse about how claustrophobic the mri is and she said it isn't actually too bad as they only have your bottom half in? You will have to let me know.
Do you have someone going with you?
I hope your evening gets better and just remember, we can do this!! :)
Xx
