Hello,
I have just discovered this website and just wanted to write something for a little bit of input from people with a bit of experience. I have had abnormal symptoms for over a year - was told by two different hospitals that i was too young for a smear test and not to worry. The symptoms continued. A week after my 25th birthday - the soonest I could have one at my GP, I had a smear which was painful and meant that I bled a lot more than I was told I would. ( this was not spotting this was bleeding for two days.) I was then sent my results of this the following friday (5 days later) stating that I had abnormal cells and was CIN 2 or 3 and my colposcopy appt. I dutifully went along expecting to have some sort of treatment due to my symptoms and not wanting to really look too in depth at what this would mean - resisted the urge to google (though google is a good thing as that is how I found this.) This is when I realised that the examination I had a year before for the refused smear and the seeing the cervix and year later - there was a big difference in the area affected. The nurses were absolutely lovely and put me at ease while they took a biopsy saying that it appeared to be High grade dyskariosis (sp) and the biopsy was just to be certain but dont worry you will just get a letter in 6 weeks time telling you when to come in for a procedure under local.
Off I trundle
fast forward 3 weeks later and I receive a phone call from the secretary with the consultant in the background asking if I can come in on Monday morning to receive my results. I had asked cheerily if I could move the appt as I had my final exam for my degree on Tuesday morning - as nice as the lady was I was adamently told no, the consultant wants to see you Monday and could you come at this time. I thought this was odd but again, no panicking we dont know anything - then she asked if I would be bringing anyone - of which I replied no I was just going to pop in from uni (its down the road.) I was told that she strongly suggests I bring something with me because it is likely I will need further treatment after this appt and that there will be a lot of information to give me that she would suggest I bring someone to write it down as I may not be able to take it in at the time.
Ok. Safe to say alarm bells have now gone off after every effort to remain calm.
My question - so long winded I do apologise - is should my alarm bells be going off just yet? Is this the sort of reaction people have experienced when they have received bad news? And when I was told that it appeared to be High grade dyskariosis - should I actually have been taking this more seriously from the beginning? I dont mean to seem flippant - I am at ease with whatever needs to be done for the good of my health - but I have been repeatedly fobbed off by 4 different doctors because of my age and not because of my clinical symptoms, so you can understand why I assumed that it was not something to worry about. Any advice is dutifully accepted and appreciated. As you can iminge - its been a blooming long weeked thus far!!xx
Hey, sorry to hear about what you are going through.
I am also 25 and have experienced the same as you. Doctors fobbing you off until you are 25. I too have had symptoms but for 4 years that have just got worse.
I had severe dyskaryosis too and Had my colposcopy on Wednesday with a biopsy and LLETZ treatment under Local anaesthetic. Worst experience ever and still suffering.
Anyway, severe dyskaryosis is not cancer. The biopsy will either confirm the presence of it or in rare case find cancer.
I was terrified when I received my letter saying dyskaryosis. to be honest I was more concerned about the colposcopy rather that the biopsy results. I have prepared my self for really bad news of my results as this is my kind of last attempt of finding what the hell is wrong with me. If my results come back as what I already know. Then I'm back at square one.
Basically, you have been very brave so far, keep it going! And keep us updated as to how it goes .
Best wishes xxxxx
Hello, sorry you’ve had to join us!
I’ve experienced pretty much the same as you. Waited till I was 25 and off I went… abnormal changes, colposcopy appointment, 4 biopsies & then I had Lletz procedure … Through all of this I wasn’t at all worried!? and thought they were just all doing the right thing!!
I’ve also got an appointment tomorrow… As nervous as you I bet!
But at least we will know what the hell is going on and where to go from here… The waiting is THE worst part!!!
Try and take support from the incredible and reassuring ladies on here, and try not to think the worst unless you’re told it… I know it’s easier said than done.
Personally the treatment I’ve had so far (Lletz) wasn’t at all bad, I had no pain and had a lovely nurse with me reassuring me throughout and having a good chitchat! And I never got any symptoms or discomfort after - so lets hope you just need that 
it’s quite a common procedure!!
All the best for tomorrow xx
Hey ladies,
Sounds like we've had similar experiences which is worrying in itself! My mother has decided im being slotted in due to the consultant wanting to play golf! (this is her form of reassurance, nothing against consultants as I know they are good at what they know!) I was surprised that I did not get the LLETZ treatment straight away tbh, but different trusts different mehtods perhaps?
I have remained calm thus far and the waiting really is the most awful part - especially over a weekend is this just plain cruel?? =oP
So tomorrow is going to really be the clincher - I have prepared myself for the worst and hope for the best, covers all basis as it would appear that even the worst case scenario is treatable as I've been reading from the lovely ladies on here.
I will keep you updated if that's ok because I think my family are beyond sick of worrying about it now and it's always good to be able to talk to other people who understand. For the moment, I am going to just keep concentrating on my exam and hope that its just a whip it out situation! =o)
xx
Of course it’s ok to keep us updated! you can message me if you need. This forum has helped keep me sane! I’ve been waiting for a whole month now!
What times your appointment tomorrow? - I’ll have everything crossed for you!
xx
appt is at 11 am, got the impression ive been squeezed in.
thats awful you've been waiting so long, i can see how this place wpuld help keep the sanity. i am finding the waiting is the worst part as my brain is on overdrive!!xxx
Hi Dankle,
Sending lots of strong, positive thoughts your way for tomorrow. You have a fantastic attitude to this (prepare for the worst and hope for the best!). I think I've heard of girls being called back if glandular (cgin) changes are found, I think this is becoming more common, but is completely and easily treatable like cin.
xxx
Hope you’re appointment went ok…
xx
Hello ladies,
I am sad to say my results were the worst case scenario. I have cervical cancer. They are optimistic but I'm going to have an investigative surgery and MRI in the next 14 days and then they will know more. At present they are hopeful that it will just be the removal of the cervix and nothing else - but have Prepped me for the possibility that it isn't. Apparently it appears to be aggressive from the biopsy so they are wanting to do things pretty quickly.
As you can probably tell - I'm still in shock but wanted to thank you for your kindness xx
I have no advice but wanted to say that I'm really sorry you got that news, I'd read your earlier posts. I admire your attitude especially when you're so young, you come across as a very strong person, I'm glad it seems to have been caught early enough and that they're moving quickly. Good luck with everything and I'm sending a big hug.
Ohhhh hun im so sorry. You're an amazingly strong woman. I admire your enthusiasm xxx
No advice - just wanted to send my thoughts.
So sorry you got these results, sending you a big hug ((( )))
Good luck with your investigative surgery.
X
Very best of luck to you, and hope that it's best worst case scenario for you (i.e. easily treatable and you recover well) *hugs*
Hi Dankle,
I'm so sorry that you've been diagnosed with cancer. It's completely normal to be in shock and to feel numb at first, or for your emotions to be all over the place. It's such massive news that it takes ages to properly sink in.
It's good that you're having investigative surgery and the MRI in the next 14 days - this will give them so much more information. If they have caught it at a relatively early stage (generally before stage 2a/b) then you are most likely to have a radical hysterectomy. Even if the cancer is contained within the cervix, they remove the uterus, parametrium, top of the vagina, fallopian tubes etc in order to properly protect you from recurrence. There is an operation called a trachelectomy where they remove the central part of the cervix, which can sometimes be done in early cases of cervical cancer where they are keen to preserve the fertility of the woman, but it does depend on the type of tumour that you have the stage that it's at. Their main concern will be wanting to do everything that they can to ensure your future.
I know the news is devastating and that you'll be devastated if you have to have a radical hysterectomy, but we are here to help you through it and the forum will be with you every step of the way.
Sending you huge hugs,
Annabel. x
Gutted to hear this, life throws rubbish at the best people sometimes. BUT you have a plan of action and your doctors will help you overcome this. Keep your wonderful attitude, but it will be totally normal to feel completely numb or have a range of emotions right now.
thinking of you
xxx
Hello,
Sorry not posted on here since my diagnosis - not sure how to keep track of the posts. Anyway, I was actually directed to this site by the oncology nurses, so I am glad I found the correct support system prior to diagnosis. In all honesty - I have had the symptoms for so long now that I will not be shocked if I have to have a hysterectomy and I would glad accept this if it means they get it all. I am getting used to it more every day though it is still strange to me as I feel fine and have carried on going for runs and my everyday life. My pains are worse and my symptoms too - but I think this may be partly due to anxiety and also now knowing the cause of it.
I have my exploratory on thursday where I meet my surgeon and the person in charge of my care then my MRI the day after. Everyone has been lovely and I don't think it will truly hit me until I am in hospital and I am feeling unwell. Everyone around me has no idea what they are meant to do but I am finding it difficult to be alone so that is a challenge but I am doing the 'keep busy' strategy. The flat is blooming spotless! ;) I think I am more nervous about the GA than anything else and I am worried I will start to get scared of hospitals when I work in one, so thats another challenge to face. Need to look at it as hospitals make me better - go!
The fertility issue, though I am 25, is not a priority for me and my other half. We have been together a while and getting married next year and truthfully we would be ok just me and him if thats what it comes to and we have always talked about adoption anyway. I just don't like this feeling of knowing my body is doing this to me and the uncertainty that keeps creeping up behind me. Using the words 'agreessive carcinoma' feels lsightly dramatic too! :)
Im sorry if I appear flippant - but i currently feel fine and although I've been told the biopsy was sent to 3 different hospitals to check the diagnosis, I'm still in slight disbelief!xx
hey!!!!
have been thinking about you a lot since your diagnosis and wondering how you were. you really are a tough cookie!!!
seems like everything is being done very quickly and that you have great communications with professionals.
keeping busy is a great idea but make sure you have support from family and friends too so that you are not alone and can talk to them about it. although they may not know what it is like for you its always good to talk to someone.
i really do admire your strength and i wish you all the luck and best wishes.
regards
Sammie x
Hey Sammie,
Thank you for thinking of me and for your kind words. I have had a few people tell me I'm a tough one, I don't realise I'm doing it! I have such a great support network that I just want to be clear and cured and then get on with living life so I can repay everything they have done or yet to do to help me through this. I don't think its really hit home for a lot of the people close to me so I do wory about them handling it, but I'm sure we will muddle through.
I have chosen to tell a select amount of people close to me. This is because having seen the way they have reacted to other peoples news I don't want them to create a drama of the situation and to then make the drama about them. I don't want drama. I don't want cancer - but i can knuckle down and suck it up because if I sit about getting sad about the unfair situation - I doubt I would ever leave the house!!
Anyway, apparently I needed a rant!! :P
thanks again - I do love this site!
I hope you are well and you get your results soon. If you want to message me to chat you're welcome to xx
Hey there,
I just wanted to say I’m really sorry you’ve been diagnosed with CC, you seem to be coping with it very well so props to you!
You mentioned being nervous about the GA above. Whilst it’s perfectly natural to be apprehensive about being sedated please be assured that it’s very, very safe. I had a day case for my lletz and exploratory examination and I was so surprised to wake up an hour later wanting to eat some toast! I was home a couple of hours after that. You’ll probably feel a bit washed out for a week or so afterwards. They told me I needed to eat, drink and wee before I could go home so I made sure I did that and I was home by 2pm!
I’ve never wanted children, but people who’ve only known me for a couple of years thought it was a knee jerk reaction to my diagnosis. It took a lot of sitting people down and explaining that I was very much adamant and always have been…I’m destined to be a cool aunt and there’s only a select few people qualified for that
I can totally relate to the terms sounding dramatic too. I remember the surgeon talking about ‘my tumour’. I was like ‘huh, I don’t have a tumour, it’s just a few cells, whatever dude!’. Again perhaps a bit flippant but I guess I didn’t register it as one.
All the best for Thursday xxx
