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Diagnosed today

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Boop
Diagnosed today

So, been diagnosed about 3 hours ago with CC. It's the rare type - Adenocarcinoma (I think that's what it's called!). He was confident that they'd removed it all as there were clear margins but as it's a rare type they want to check me out a bt further. First step MRI....got lucky with that and got a cancellation straight away so already it. Now got to wait for the next MDT meeting where they make a decision on what to do next with me. Likely to be cone biopsy or trachelectomy if the MRI is clear. I didn't bother to ask about the stage...I didn't really want to know!

overwhelming day. I was fully expecting it but its still a shock if that makes sense. The doctors were hopefua so ill try to take their lead but don't think I'll feel optimistic until I get the MRI results. x

 

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

Jo1982

Hey there,

I'm so sorry you've had this news, you're right it is a total shock and hard to work out what to feel at first,

The adeno type starts higher up in the glandular cells, and is a little less predictable than the squamous type that tends to lurk around on the surface cells. So it's right for them to further check just in case so they can be absolutely sure. it's good that your consultant seems confident it's all removed though and it sounds pretty positive from the info above so fingers crossed the lletz will have done it's job.

When do you get the MRI results? The waiting is the very worst part of all of this!

Sending you a big e-hug xxx

  • 31 Jan 2013 Colposcopy severe changes seen and 3 biopsies taken
  • 07 Feb 13 Diagnosed cc
  • 11 Feb 13 MRI - clear, Ultrasound - clear
  • 19 Feb 13 LLETZ under GA
  • 04 Mar 13 results showed papillary varient squamous cell cc with slight spread to vagina wall. Staged 2A. Abdominal Radical hysterectomy booked 19.03.13
  • 08 Apr 13 Clear results! Downgraded to 1B1. 3 monthly check ups
  • 12 Dec 14 CT scan for pain flare ups which showed ovarian cysts but no disease
  • 20 Sep 17 - Cysts still causing bother but no other problems.
gardeng

Hi Boop

So sorry to hear your news - even when you've got a fair idea what's coming it's still a shock when they tell you. Glad you managed to get your MRI straight away - at least your not waiting another few weeks for that. Though waiting for the results and your treatment plan can be hard. If they've offered you the trachelectomy then they must think it's very early stage - as far as I know they don't let you have one if you're past 1b1.

Try and keep yourself busy if you can and do things to try and keep your mind off worrying - easier said than done!

xxx

abnormal smear Oct 2012; colposcopy Nov 2012 - clear; colposcopy April 2013 - clear; hysteroscopy and biopsies May 2013; Diagnosed Adenosquamous 1b1 21.05.2013.

abdominal radical hysterectomy and lymph node removal 6.8.13

Boop

Thanks all! I just phoned them to ask how long they thought it would be and they went through it with me on the phone again (now its got more chance of sinking in) and they said they think its 1a1 so the best outcome I could have hoped for. She's going to keep chasing my MRI as their next MDT meeting is next weds morn and she wants to try and get my case discussed there. 

Cor, what a day! X

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

Boop

This is the strangest feeling I have ever had. So surreal. Doesn't feel like its happening to me. dreading the shock wearing off, I quite like being able to be matter of fact about it and not hysterically crying, lol! 

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

Jo1982

It is a total roller coaster of feelings! I was very factual and talked to everyone in detail at first. I've got no idea how I functioned as a human at the time, but somehow you do!

I wish I could say 'do this and you'll feel better'. For me talking about it was best. The Macmillan site has some really good pages on feelings and emotions, and there are lots of ladies here happy to listen to you should you need a rant.

Hopefully you have a good support network of family and friends? Mine really helped me out.

Stage 1a1 is the very earliest as you say, and can be treated very effectively.

Xx

  • 31 Jan 2013 Colposcopy severe changes seen and 3 biopsies taken
  • 07 Feb 13 Diagnosed cc
  • 11 Feb 13 MRI - clear, Ultrasound - clear
  • 19 Feb 13 LLETZ under GA
  • 04 Mar 13 results showed papillary varient squamous cell cc with slight spread to vagina wall. Staged 2A. Abdominal Radical hysterectomy booked 19.03.13
  • 08 Apr 13 Clear results! Downgraded to 1B1. 3 monthly check ups
  • 12 Dec 14 CT scan for pain flare ups which showed ovarian cysts but no disease
  • 20 Sep 17 - Cysts still causing bother but no other problems.
Tes309

Hi Boop, I just wanted to say I'm sorry about your diagnosis. Like the ladies have said you will go through all sorts of emotions over the coming months and beyond. We are all here if you have any questions or just need a rant. I know I have found this site to be such a help. Sending you a big hug and look after yourself. Tess xx 

27/04/13 Smear severe Dyskaryosis.14/05/13 Colposcopy 24/05/13MRI Scan 31/05/13 diag CC stage 1B1 grade 2 Adenocarcinoma, Cold knife biospy under GA 19/06/13 CT scan and blood test Rad hyst booked for 11/07/2013. Histology found microscopic node involvement.  No further treatment required / wanted. All clear 05/08/2013. March 2019 recurrence, starting chemo rads 15-04-2019

September 2019
Recurrence, now palliative

Boop

Thanks ladies. This forum is amazing and i will be taking my cue from all of your inspirational attitudes :) xxx

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

EmJess

Hi boop

Just wanted to say sorry to hear about your diagnosis.. And fingers crossed for your MRI results!

It's really good that they got clear margins following the Lletz .. And that it's been caught early stage.

I still haven't asked about the stage of mine! But I've recently had a Trachelectomy so it must of been early stage?

Try to keep positive - I know easier said than done! I was very much like you... Matter of fact and wanted to get on with it.. I don't think I cried once since diagnosis.

I'll be thinking of you and sending you positive vibes.. This forum is incredible and has helped me through everything.. so if you need to ask questions and rant the amazing ladies (and me!) will be here to listen :)

Em xx

First Smear, age 25 - abnormal 06/03/2013

Colposcopy & 4 biopsies 26/03/2013

Lletz Procedure 02/05/2013

Diagnosed CC 17/05/2013

MRI 04/06/2013

Trachelectomy & Lymph Node removal 10/07/2013

ALL CLEAR!! 19/07/2013

Boop

I went back to work today and really regretted it. I'd been off since Mon afternoon when I left in tears after getting the "you need to come in but we refuse to tell you why even though you can clearly work out what it is" call. Got diagnosed on weds and asked my manager to tell my team what was going on during Thurs so I stayed home. It's not that I particularly want everyone knowing my business but I knew that if nothing was said people would innocently ask where I'd been all week which would put me in an awkward position and then if I told them, they'd have felt awful for asking. I just wanted no-one to mention it basically. Just leave me be and cut me some slack. 

so get in this morning and find that no-one had been told. And I had to have that exact conversation 14 times. I was absolutely livid. In the end I just said I'd been off sick but I'm so mad. All I asked from them was one thing - no time off, no nothing, just to make my first day back more manageable - and they really let me down.

my line manager has been really unhelpful and insensitive all week. From not picking up the phone all day on weds when she knew full well where I was and what news I'd be getting...to saying really stupid things loudly today in front of the rest of the team WHO DIDNT KNOW ANYTHING like "so why are you so quiet today". Err, take a wild guess....maybe it's because I'm back at work AFTER BEING DIAGNOSED WITH CANCER JUST TWO DAYS AGO and you've made it all even more awkward than it needs to be. Honestly she said about 5 things today in front of everyone that just made me want to walk out. She made my day so awkward and uncomfortable and is really making me wonder whether I'm ready to be at work right now. Did you all work in between diagnosis and treatment or was your head too all over the place? I feel like an enotional wreck - don't know whether I'm coming or going and am taking everything people say or don't say to heart when I'm sure most people don't mean it.

amazing how fast you realise who's got your back and who you don't need in your life though! New job after this is all over I think! x

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

Tes309

Oh Boop, what a rubbish experience you had. Your manager really didn't handle that well at all! I found that the most difficult thing for me was telling people and especially people I work with. You just don't know how people are going to react and it's all a bit awkward with work colleagues. So I decided to tell a few people at work that needed or who I wanted to know and everyone else just knows I'm off work due to surgery. I think you should sit your manager down to work out how you want to handle it going forward. Or do you have a HR manager that you can speak with? I also found that some friends even said 'the wrong thing' and upset me.  It is difficult.  There are some good sections on the McMillan website with regards to talking about your cancer and work and cancer. I found it helpful. Take care. Tess xx 

27/04/13 Smear severe Dyskaryosis.14/05/13 Colposcopy 24/05/13MRI Scan 31/05/13 diag CC stage 1B1 grade 2 Adenocarcinoma, Cold knife biospy under GA 19/06/13 CT scan and blood test Rad hyst booked for 11/07/2013. Histology found microscopic node involvement.  No further treatment required / wanted. All clear 05/08/2013. March 2019 recurrence, starting chemo rads 15-04-2019

September 2019
Recurrence, now palliative

Jo1982

Hey Boop,

Oh my gosh reading your post has made me so angry for you!

As you've been diagnosed with CC you are now protected legally under the Equalities Act 2010, and you always will be. It is illegal for an employer to discriminate against you etc, and downright rude and unacceptable for her to not respect your one request. If you take a look at the Macmillan site under work all the guidelines are laid out. There are fact sheets for employers and line managers too. I'd send yours a copy soon.

If I were you I'd call your GP and get them to sign you off if you can't face going in. Or speak with your HR department ASAP. You've had a scary diagnosis and you need to concentrate on you now.

I flitted between work after diagnosis, I went in but it was mainly to hand over stuff, then I got signed off for 2 weeks after lletz under GA, then I had the rad hyst and I'm still off 4 months later. Really I wish I'd have stayed off since diagnosis as I wasn't much use at work.

I'm so sorry you've been treated like this. Your employer really should be respecting your wishes at this very difficult time.

If you take a look in the 'post treatment' forum there is a post about what to say in a new job. A guy who is a HR lawyer specialising in discrimination replied saying he was happy to help anyone if you contact him. Hopefully you won't need to and your employer will be more understanding.

Sorry if I sound a bit bossy here, my HR manager really let me down when I was isolated and stopped paying me. I had to contact my MD to get her to respond to me and give me the pay he'd promised! Stand up for yourself is my advice.

Xxx

  • 31 Jan 2013 Colposcopy severe changes seen and 3 biopsies taken
  • 07 Feb 13 Diagnosed cc
  • 11 Feb 13 MRI - clear, Ultrasound - clear
  • 19 Feb 13 LLETZ under GA
  • 04 Mar 13 results showed papillary varient squamous cell cc with slight spread to vagina wall. Staged 2A. Abdominal Radical hysterectomy booked 19.03.13
  • 08 Apr 13 Clear results! Downgraded to 1B1. 3 monthly check ups
  • 12 Dec 14 CT scan for pain flare ups which showed ovarian cysts but no disease
  • 20 Sep 17 - Cysts still causing bother but no other problems.
Boop

Thanks ladies. I wasn't sure if I was just being too sensitive (I didn't think I was but it's not easy to judge right now) so you've made me feel better. I'll have a look at all the bits you've suggested, thank you xxx

March 2013 - severe dyskaryosis smear result || May 2013 - colposcopy and 2 biopsies (CIN3) || June 2013 - LLETZ under LA || July 2013 - CC diagnosed (adenocarcinoma stage 1A1). MRI clear || Aug 2013 - cone under GA (CC removed - moved to regular check ups)

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Cervical cancer