Newly diagnosis scared about staging

Hello, this is my first post here

10 days ago I had a dodgy smear result. I'm 34 and hadn't had a smear test in years after nurses finding it difficult and causing pain etc.

I'd had lots of miscarraiges and while doing tests they did a smear. I then went into have colposcopy under GA and they fast tracked the results.

Yesterday I was called back in and was told its cervical cancer. The gynae-oncologist stage he thinks it's top end of stage 1 but needs to do the scans etc.

I've had some pain in my abdo, likely bladder although I didn't realise it for about 3-4 weeks so I think it's actually spread and i'm going to die. I'm angry at the doctors for predening everything was ok at the colposcopy appointments and saying it looked like CIN2-3 when in reality the gynae-oncologist who stepped in at the procedure said it was extremely abnormal and looked cancerous and noone told me despite me asking. I feel like they will do the scans and it will actually come back stage 3 or 4 and not 1 like they've said because I can't trust what they say.

I really want to talk to someobne but its saturday, all helplines are closed and i'm slowly dying inside with this massive sense of foreboding hanging over me.

please help me.....

Oh Bella, 

what a tough time you've had. You have had a real shock with your unexpected diagnosis, but don't let that stop you from trusting the professionals. The gynae-onc will be much more experienced at spotting little differences, and they will be little if he/she thinks stage one. The previous docs I'm sure,weren't pretending, but they're not going to frighten you unnecessarily. 

Did you have any symptoms like post coital bleeding? That seems to be the most common symptom to start off with. I don't think there's much chance of anything having spread to your bladder at this stage, but I do understand how you're feeling as we've all imagined the worst at some point.

you will be in good hands now, stage one is treatable and they will move things along for you very quickly.

Lots of hugs, we're here if you need us,

Molly xxxxx

Hi there, 

This time last year,  I also had a terrible experience at my colposcopy with the consultant providing the bad info that she could see cancer,  but no info about the process, stats, treatments, or even any hope. I was distraught.   That week was the worst week of my life,  but I took control and found another consultant and im here to tell the tale.

It is really hard / iimpossible to stop our thoughts thinking the worst....... try to keep busy until you have all the facts.  easy to say but it really does help.

If you have any questions please ask .....

Take care of yourself

Tracey

Hi,

haven't had any post coital bleeding at just. Just prolonged spotting after my last miscarriage which was in sept/oct. 

I cant ant get my head round whether from the colposcopy he can see and think its likely stage 1 or whether it's common to then be scanned and have massive spread. 

Im so confused.....

 

Ps excuse typo's - this website doesn't like my iPad!

Hi Bella,

The scan will enable the MDT team to give you a staging,  and may or may not change from the initial thoughts of the consultant at your colposcopy.  

The good news is that things will move really quickly, and as Mollz says stage 1 is treatable

Take care

Hang in there Bella honey! It's really hard to fight when you don't know what you're fighting! We are all here for you. My diagnosis was in July this year and I am out of all treatment now, feeling fab! I certainly went through all kinds of emotions, and terrible thoughts after diagnosis but got there in the end!

Sending much love, h xxx

HI Bella,

Sorry you have had to join Jo's,but as you will see the ladies on here

will help as much as poss.Unfortunatley where you are now is one of

the worst places head wise.I promise that once you know what

you are dealing with things will get easier and you will have a game plan :-)

The onc/gyny and MDT  will do the very best by you.It's hard to put trust

into people when you feel all at see.As you get to know them this will become

easier.

As you say the weekends are worse because there is nobody to talk

too at the hospital.Luckily Jo's are here 24/7 so,I know it helps me

just to write it all down even if I don't get a reply straight away.

Also I like to write all my questions down to fire off at the nurse,whilst

they are fresh in my mind.

Take care

Becky x

 

 

 

Oh honey, believe me I know exactly how you are feeling as probably do most of the women on this fantastic site. Believe me when I say that once you've had your scans ect and a treatment plan is in place things will slowly start to ease. Unfortunately the C word puts the fear of God in people and its normal to deal like it's the end but I call it cancer head. I'm back to worrying as I've got an MRI on boxing day but I'm trying not to dwell on it because cancer has taken up most of my thoughts this year also robbed me and the kids of a nice Xmas last year but I'm still here and doing well. If you ever want a chat please pm me or any of the ladies and someone will always answer. This site is a godsend and really helped me last year. Please try not to Google as most of that info and statistics are dated. Lea xxx 

Oh, Bella, I'm so sorry you're having to go through this. It's easy to imagine the worst - I think most of us have been there! Lea is right; do not Google!

 

If you had the colposcopy under GA they will have been able to have a good poke around so they should know what they're dealing with. I would also say that it's very easy to assume every other ache and pain is evidence of further cancer spread. I know I did that. Hang on in there and remember that we are here if you need reassurance. Sending you hugs! :)

Kirsty xx

Thank you all so much. 

Because of my bleeding, I'm on antibiotics, norhisterone and traneximic acid which is why I'm feeling sick, and have stomach cramps although I just keep thinking its because it's spread.

ive had this weird feeling in my tummy / bladder for a few weeks since having food poisoning so I just assume the worst!

im trying to be hopeful that because the colposcopist and gynae-oncologist both had a good fertile around while I was under, that they should know what they are dealing with. 

Am I right in thinking that the larger the tumour is, the more likely it's spread so by seeing the size they can start thinking about classifying it?

ive spoken to a relative and a friend and I felt better for talking about it, which is unusual for me, I keep stuff to myself. The worst time is when I'm alone or at night. I've never felt fear like it. 

My tumour was 3cm and was visible. I had the rarer type which is glandular and further up the cervix. I was also on those tablets for excessive bleeding. From diagnosis to operation it was about 5weeks, so things do move quickly. You sound so like me as I had to go under to stop the bleeding and I was told that they had a good look around and were quite confident on saying it was confined to the cervix. When I had the mri scan they were right. Talking about it does make it easier I've been very open about it all. Ask for some tablets to help you sleep, I did be a I couldn't sleep, things always seem worse at night love ...Lea xx

My tumour was 3cm and was visible. I had the rarer type which is glandular and further up the cervix. I was also on those tablets for excessive bleeding. From diagnosis to operation it was about 5weeks, so things do move quickly. You sound so like me as I had to go under to stop the bleeding and I was told that they had a good look around and were quite confident on saying it was confined to the cervix. When I had the mri scan they were right. Talking about it does make it easier I've been very open about it all. Ask for some tablets to help you sleep, I did be a I couldn't sleep, things always seem worse at night love ...Lea xx

Hello everyone :-)

You've been having a party without me! Hello Bella, welcome :-)

Firstly and most importantly, cervical cancer is NOT necessarily a death sentence, as we are all here to prove. Secondly, it's generally slow growing so please try not to imagine that a few days here and there is the difference between life and death. Cancer grows in our imaginations much more quickly than it does in reality and every single one of us here has at some time imagined that it has reached this or that milestone, only to be relieved that it hasn't. Please try to have faith in your medical team. And don't go anywhere near nasty Dr Google.

I think that as a basic rule of thumb, you are probably correct, the larger the tumour is the greater the probability that it has spread. But by the same token, there is spreading and there is spreading. My tunour was quite large, it was a 2b and took out half my vagina, but it didn't reach my lymph. All our cases are as individual as we are ourselves, which is why Google is not such a good idea, imagine how Google would describe an 'average woman' and then compare that to yourself :-)

Be lucky

Tivoli

Thank you again ladies. 

I had a very bad night. On the verge of a major panic attack last night - couldn't breathe, crying all the time etc. just as bad this morning. 

I just can't shake this feeling that it's spread everywhere because I've got pain in my bladder and terrible stomach ache (which I know that is the op and tablets) but it's the bladder that scares me as it was there for a week or two before the op. I want to be positive but can't shake this feeling. Then I start shaking and hyperventilating. 

I feel like I need to see the GP but I'm supposed to be going to Scotland today for a few days before Xmas so I wont be able to unless we don't go. 

Every day is so long and horrific. I'm so scared. 

Oh sweetheart,

I can only reiterate that it is really unlikely to have reached your bladder if they have seen it and given it a provisional 1. Had they seen a larger mass than that, bladder involvement might be more likely, but they didn't. They have much more experience about these things and we have to trust that they kow what they are talking about and what they are doing. Surely if you travel up to Scotland today you will be able to speak with your doctor on the telephone as soon as his surgery opens on Monday? Wouldn't that be the best of both worlds? And could the traveling possibly help to take your mind off worrying? How you choose to spend the next few days is not going to have any effect on the overall diagnosis so you might as well try your hardest to have some festive fun.

Be lucky

Tivoli

Oh Bella,

Like Tivoli I am in the 2b club, and this time last year I was in a similar place to you and really sympathise.   I know its hard for you, but as others have said this is the worst part... so many unknowns at the moment.  Once you have facts it will get easier and you will be able to focus on fighting your way back to health xx

The others have given you some great advice, and put things into words so much better than I can...... jos is a great place for support xx

Take care

Hi Bella

Firstly I am sending you a big hug.  This is a dreadful time you are going through but honestly it does get better once you know exactly what you are dealing with.  I was told initially that they thought it was stage 1b1 and they were right as that stage was confirmed by the MRI.  I don't believe they would say that to you if they didn't believe it to be true.

I too freaked out a bit during the waiting stage and saw my GP who gave me something to calm me.  I only needed it for a short time.  I agree with Tivoli, go on your trip today as it could well help take your mind off it and then ring your GP in the morning.  Mine does telephone consultations as I guess most of them do.  A lot of GP's can now send the prescription direct to the chemist so perhaps yours could do that to a local chemist where you are staying?

I also listened to calming meditation CDs on a personal CD player that helped tremendously and drank herbal relaxing teas.  I also sprayed my pillow at night with a pillow mist that is supposed to help you sleep.  All these things got me through that lousy waiting time which for me was a bit longer as my consultant went on holiday!

You'll get though this, we are all stronger than we think we are and you'll have wonderful support from all the ladies on this site, we are all here for you.

Big hugs

Cheryl,xx

Thank you. 

The he consultant said he thought it would be the top end of stage 1 but he couldn't be sure without the scans. I just hope he's right but all these pains are just frightening the life out of me.

i didn't realise you could speak to a dr over the phone. I might try that if possible tomorrow and see if there's anything they can do for the sickness and anxiety. 

They are discussing me at the MDT tomorrow evening too so I feel sick about that. I can't stop crying all the time!

That's good you are being discussed at the MDT tomorrow, the sooner these things happen the sooner you are going to be dealt with.  I cried a lot initially too, its a hell of a shock to be told you have CC.  This time will pass, keep saying that to yourself.  We are all proof that you can and will get through this, hold onto that thought.xx