Hello
I was diagnosed this morning and found the whole process very confusing. I am told I'll need an MRI scan and that there are lots of options for treatment dependent on the results of the MRI. However he said twice that the likely outcome is that I'll be offered a hysterectomy. I couldn't despite asking twice why he thought that would be likely...does that mean it's bad? But I didn't get a clear response. My head is spinning, I feel like it's all over me. I feel like I can feel it in my throat, my pelvis. Is this normal to panic like this?
Hi there,
So sorry to hear your news. It is completely normal to feel the way you do. I think I cried solidly for 24 hours when I got my diagnosis. The MRI will be to check your lymph nodes and that the cancer is confined to your cervix. Once they have the results they can give you your official staging and get a treatment plan sorted.
I had stage 1b1- the tumour was 2.1cm and had a radical hysterectomy in October 2013 and I have been clear ever since. A hysterectomy ensures a high cure rate and generally means the cancer is in an earlier stage.
Do you have anyone you can talk to? You will get through all this and realise you are much stronger than you ever imagined, but it is a rollercoaster of emotions. Make sure you write down any questions you have to take with you to appointments and also handy to take someone with you as a second pair of ears is very useful.
I hope that helps a little,
Jade xxx
Hi All - I'm just a week ahead of you donnykins. Had the diagnosis last wednesday, went in for MRI and CT on monday, and have had confirmation of date for Radical Hysterectomy of 9th April. Total shock, but dealing with it all as calmly as poss - you owe it to your body! Just be (weirdly) grateful that you've found out and put your faith in the NHS that they'll look after you! Jade, so glad to hear you've had the all clear for over 2 years now - I know it's a major op, but we can whup this thing's backside.
I have a wee 9 month old baby - so everything to stay positive and strong for! x Leila
Thank you both for your comments. I wrote this post within an hour of the diagnosis and feel a bit calmer now although I hate not knowing how bad this is. I was out of date with smears and am now kicking myself!! Jade- trying to focus on stories like yours - I'm not scared of a hysterectomy, happy to undergo whatever is needed. My big fear is that it is somehow untreatable. I do have a dull ache in my pelvis, not painful as such. Does anyone know if this is normal or serious?? Thankyou again.
Leila- I'm so thankful you responded, it would be great to hear how you get on, I'm thinking of you. I was also reassured to hear that you had an op booked so soon after your scan. I'd heard you have to wait for the results. I feel keen to get a treatment plan sorted- actually all I really care about is that I'm going to live!!! I can cope with anything except that worst news. I know it's imperative to be positive at this time but my mind is a bitch! I've taken the rest of the week off to be with family and pretended to be completely calm about it and they have been very much lead by this. I am a very positive person so as soon as I get the news that this is treatable I will go back to my old self. Thanks again both xx
It’s honestly natural to feel like that. I’m still on 3 monthly check ups with my next one in 2 weeks, I’m fine at the moment but will be a bundle of nerves the closer it gets.
If you’ve had a lletz recently then your womb/cervix will be recovering so you are bound to be a bit tender round there, if you still feel like it at your next appointment then mention it.
With regards to missing smears, cervical cancer is slow growing. To put it in perspective the abnormality that led to my cancer was discovered in 2009 but due to several errors and misread smears over the years it went untreated and the cancer wasn’t found until August 2013.
once you have your treatment plan, you’ll feel a little less lost. The waiting period is definitely the worst- keep doing what you are doing and be kind to yourself.
Wishing you both the very best of luck xxxx
Hi All
Just an update. I had my MRI on Tuesday and am meeting with the consultant for my full staging tomorrow. However my very lovely CNS called me this afternoon with a heads up. The cancer has not spread past my cervix and it is likely a tracelectomy will be explored tomorrow, so I may swerve a hysterectomy (I am 34 with no children). I don't have the full information and I'm certainly not out of the woods yet but I wanted to post this for anyone currently experiencing the sheer terror of the period of time in between diagnosis and staging. I last had a smear in 2008 which was terrifying me. It goes to show how slow growing this can be and how treatable if caught in time
Sending good vibes to you all xxxx
