Rollercoaster - newly diagnosed

Hi,

So I received the results of my LLETZ early on Friday after a call from the hospital to come in on Weds afternoon. His words were "its not good news, we've found cancer cells". (Good start hey!) 

I have never missed a smear and they have always come back clear although my last one last year, she said it looked like i have cervical erosion. I then went back to my GP in june this year due to bleeding in between periods. The consultant said on Friday that the initial biopsy had only shown CIN 2 and 3 changes, no cancer. Its only when they have analysed the LLETZ they have found cancer cells and graded it at Stage 1 A 2. I have been referred to a specialist womens hospital and have to have an MRI. The womens hospital will decide the next course of treatment but it's likely to be a hysterectomy.

2 days on, i have been through a rollercoaster of emotions - convinced myself that the MRI will show i am riddled with it and they actually missed it at my last smear. Then I become more rational and think my staging isn't so bad and though it may change after the MRI, would it really change so dramatically?? One of the things i am focusing on is that I had a womb scan last month looking for fibroids and they said my womb was completely clear.

When i think back to when i was told now, i think the consultant was more concerned about telling me about possible hysterectomy as he specifically said "you have 2 children already, yes?" And "we would aim to leave your ovaries in place". Or am i just clinging on to ne hoping that he thought telling me i couldnt have any more children would be worse??

I'm just up and down all the time. I feel like it occupies all my thoughts and i normally have a rational common sense approach to everything. The idea of a hysterectomy doesn't bother me at all. I just want it sorted!

Hi Kelly

Sorry you have to find yourself on this forum - but you are absolutely in the best place.  I had a very similar scenario to you with clear smears and a suspected 'cervical erosion' which I was told was harmless!!!!  Unfortuately like you I was also diagnosed after a Lletz (though mine was 1B1, but still on the smaller/more superficial size).  It's great that they have found it so early as the outcomes at this stage are excellent!

Many women who have not already had children, or who are wanting more children would go down the route of another Lletz treatment/cone biopsy or trachelectomy (as in my case) to preserve their fertility.  I think the doctors prefer to take a 'belt and braces' approach wherever possible which is why they are suggesting the hysterectomy. It sounds like you have a very empathetic consultant who is just breaking the news to you gently. I wouldn't read anything into that.

To put your mind at ease, after my trachelctomy surgery, they analysed what had been removed and found NO EVIDENCE of cancer in my cells.  As it turned out they had gotten it all in the original Lletz.  This could well be the case with you and the hysterectomy is about making 100% sure they have it all and giving you the best possible chance of being completely free of this horrible disease.  Depsite this, it is always hard to hear the diagnosis and you will likely be up and down a fair bit.  Be kind to yourself and keep reminding yourself that your stage is VERY early and very treatable. 

Hugs and prayers.

N x

Thanks so much for your reply Nellie. Your story makes me feel so much more positive. He did also mention a cone biopsy but, i have no intention of having more children, so would rather just go for the full hit to get rid!

I think once i've had the MRI and the results I will feel much better. He said i will have this pretty quickly which I immediately jumped on ("why is it so urgent???") but he said that its standard now due to NHS cancer targets. My mum said the rollercoaster of emotions is completely understandable amd I shouldn't beat myself up over it. Its just the word - cancer. It's always given me a shiver and now I find myself facing it.

Thank you so much for sharing your journey xxx lots of love to you xxx

Hi Kelly, you will feel SO much better when you have the results of MRI etc.  The waiting is the worst bit by far.  It sounds HIGHLY unlikley that your tests will throw up any surprises due to the early stage.  They just have standard protocals to follow.  From being told I had cancer to having my op it was exactly 4 weeks and all of the scans etc happened in this time as well.  The timeframes are completely normal.    Concentrate on getting yourself as healthy as possible for the op and try to stay calm - easier said than done I know.  xxxx

Hi Kelly

Firstlu big hugs I have been exactly where you are and you are right about it being a roller coaster. I think you are in shock initially too. 

I had the same biopsy cin3 then told stage 1a1 had hysterectomy as like you knew didn't want any more children and they only found small area of low grade precancerous cells no cancer so I am glad I did it as would have been a constant worry. I had keyhole Total hysterectomy and 5 weeks on and I'm doing really well. 

It's only human to worry about MRI and probably be aware of every ache and pain now. But try to keep busy and positive plan some fun things stay away from Google. This site is fab and so many ladies here to offer their support advice. 

Nellie is right nhs put protocols for timings of scans/treatment. I'm like you I always think there's something suspicious going on like my check up appointmemt was changed from 23 to the 1st so I rang panicking something was wrong and it's because consultant going on holiday. I have learned to ask if I am worrying as most times it's our over active imagination  

I did a post on hysterectomy tips  

Do keep in touch  xxxxx

Thanks Sarah. You don't realise how much I appreciate you and Nelly taking the time out to reply to my post. Today has been a pretty rubbish day for me. A meltdown would probably be the best way to describe it! Reading your posts has brought me some comfort as it's completely normal. I think you automatically fear the worse. It doesn't help that I am still bleeding from my LLETZ which i told the consultant about and he said was completely normal. I am hoping each day i will find it easier to process the informatioN. I will update as soon as I have more information. Thank you so much xxxx

You are bound to have good/bad days hun and we are always here when you are having bad days good days anything.  You are right our brain works on overdrive I think and end up thinking all sorts of things, try putting music on or watching a film etc to distract your mind from thinking too much. I found having some nice things booked in helped me too like going for nice meal shopping etc  

 I was worrying too about the bleeding I bled constantly for 5 weeks after the letz. I kept asking my nurse about it and she kept telling not to worry. I think for me the lletz messed up my birth control (injection) and caused me to spot again which is common. Or could have been lletz as can take ages for bleeding to stop as cervix takes a while to heal. 

Hi Kelly :-)

(((((HUGE HUG)))))

It is indeed a roller-coaster, and not a heap of fun, but you have your seat-belt on and we are all in the car with you so anytime you want to ask questions or just rant, we are your sounding board. Do keep completely away from Google.

Be lucky :-)
Tivoli

Hi Tivoli

I've seen you posting lots of reassuring messages....You are like the Mother Hen of this forum :-)

I got my call from the hospital yesterday and they've offered me an MRI tomorrow (weds) so at least things are starting to move.  I am preparing myself for a couple more "down" days after tomorrow as I start to panic about what it's shown. Today i feel better, i still have moments of panic but these are more equally balanced now by feelings of positivity. I long for the days when I have "normal" problems to worry about.

 

Thanks for your support xxxxx

Just wanted to send some hugs and wish you luck for the scans. I think we've all had moments of thinking the worst it's completely natural and it's definitely a good thing that they're seeing you quickly. Less waiting around which I have found to be the hardest part. I had a cone biopsy for 1a1 and I don't know if I'm just lucky but 3 weeks later I've had no side effects from it at all so recovery has been much better than expected. Keep in touch xxx

Hi Kelly

My mum has just been diagnosed in very similar style to yourself. she had a minor bleed (been through menopause) was added on the 2 week wait list to see gynae. She's had her mri and colposcopy. She's waiting for a pet scan now. The consulatant today told her it was Cervical cancer in the neck of the womb, inside the womb appeared normal apart from the off floating cell. Its hit me like a brick and feel like i have no one to talk to. My mum is staying positive but i fell to pieces. I'm hoping to find success stories on here.

They told my mum today that surgery may not be the best option. They seem to think Radiotherapy is the best route. You're right though, this is a Rollacoaster - and it's hell. I look at my mum and wish it was me.

Kelly, yes you have lots to be confident about - I have just had a radical hysterectomy and no cancer found in anything so I feel beautifully cleansed. My LLETZ had actually removed all the cancer (18mm lump) although they couldn't be certain, I too bled for 4 weeks after LLETZ plus period attached either side.  Yes swinging between panic and being OK is common, you can take things for shock (rescue remedy etc), look into anticancer diet and try meditations on YouTube if it suits. It's lovely here too :-) good luck!

Kelly, yes you have lots to be confident about - I have just had a radical hysterectomy and no cancer found in anything so I feel beautifully cleansed. My LLETZ had actually removed all the cancer (18mm lump) although they couldn't be certain, I too bled for 4 weeks after LLETZ plus period attached either side.  Yes swinging between panic and being OK is common, you can take things for shock (rescue remedy etc), look into anticancer diet and try meditations on YouTube if it suits. It's lovely here too :-) good luck!

Hi Shavorne

Sending you a hug too, and another one for your mum. Try not to worry yourself too much, this is a very treatable cancer and most of us go off laughing into the sunset. Hang around here for comfort and sympathy any time you feel a bit wobbly :-)

Be lucky :-)
Tivoli

Thanks ladies! Your comments fill me with confidence!

I had my MRI yesterday and went back to work today. I have confided in a few friends and work colleagues and it seems every female i have confided in knows someone who has been diagnosed with early stage cc and been successively treated - some many years ago and they are still here live and very much kicking! The "problem" is (a nice one of course) most of them move on with their lives and dont report back on forums like this on how they were successively treated. Its nice that you ladies do still post to offer encouragement to us girls who are newly diagnosed and panicking!

I am starting to realise its human nature to worry and that's ok! I am scared of the C word but i also understand now that there are many different types of cancer and treatment and prognosis varies for each. Ours is very treatable. My desire to fight back and not get overwhelmed by this fear is starting (slowly) to come through.

Love and best wishes to all of you (and your mum Shavorne)

Hi Kelly we share a few things in common including a first name. I was diagnosed with C1a1 after Lletz, 2 weeks ago they did a 2nd Lletz and I got told yesterday that they got it all. I too have to have an MRI to as the Dr put it (to dot an i and cross a t) but they have got it all. I have been the same roller coaster of emotion, and now a weight feels lifted although won't be fully lifted untill the MRI As I feel that's almost drawing a line under it. I haven't had any children I'm 32, that's why they did a second Lletz they told me that if they found cancer (going back to the first lletz) it would be a potential hysterictomy, I was extremely upset by this so finding it early is a god send as they can do great things. I have onLu ever had 1 normal smear... That was last year (typical next smear all this happened) before that from the age of 21 (I'm from Wales) Iv had a smear ever 6minths to a year for 11 years never had s normal smear Iv had 3 colps 3 biopsies before this last few months. I was so pleased to get a normal smear last year, I was hoping for another normal so I could go to 3 years thank god CGIN and CIN3 turned up, otherwise they would of never done the first Lletz that had C1a1. it is an emotional roller coaster  this site is great though as its great to chat to people who are going through similar experiences x 

Hey!

Thanks so much for your reply. I am glad you got good results. I can imagine you can feel like you can finally breathe for the first time in weeks! So pleased for you!

I have had a frustrating day - 2 weeks on from diagnosis, i still don't have an appointment with the Womens hospital who will hold the MDT meeting and advise my full treatment plan. My CNS has proved to be pretty useless so i have been ringing people myself today to chase up (luckily i have an understanding boss!) Turns out the referring hospital (Warrington) have not yet sent the histology results through to Liverpool womens to be reviewed by the MDT team yet they have the MRI. I  am so bloody annoyed! I am preparing myself for a rant to PALS and the Warrington Consultant tomorrow morning! What would have happened if I hadn't chased? 

Despite all this, i am still feeling positive and look forward to good results like you xxxx

Urgh that is frustrating! glad it's getting sorted for you.

keep us positube and keep us posred x