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Stage 1A1

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Sunflower19
Stage 1A1

Hi,

I have today been told that I have stage 1A1 cervical cancer, that was so small that they think it’s been removed with my LLETZ treatment, has anyone else experienced this? They said that the cells were so small 0.01mm but they need to discuss at a meeting but I may need a second LLETZ. I am so overwhelmed and I don’t know what to think. Never did I expect this as my smear 4 years ago was normal. I’m so incredibly grateful that they caught it so early and this is why we have the cervical screening programme in the first place.

Thanks.

Tivoli
Tivoli's picture

Hi Sunflower :-)

Welcome to the forum! Sorry you are feeling overwhelmed. I can assure you this is very normal indeed. A great many women are caught early enough to be cured by a single LLETZ procedure, though it is equally true that a great many have a second one just to make absolutely sure.

Yes indeed this is why the screening programme is so very important.

I think you probably have cause to celebrate :-) You appear to have got off wonderfully lightly :-)

Be lucky :-)
Tivoli

Lotty9000

Hi Sunflower 

Its rotten news but also good news. I'm a fellow stage 1A1 my adenocarcinoma was 2.5x5mm and unfortunately was not removed with the first lletz. However I am now cured and I also feel extremely lucky. My smears have also always been normal so it does come as a shock at first. 
Stage 1A1 is totally curable and we have a long life ahead xxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Sunflower19

Hi both,

Thank you for this, it's reassuring. They told me I had clear margins so that's good isn't it? 

Did you have to have any further treatment like radio therapy or chemotherapy ? They seemed pretty certain I didn't need this and no further tests but had to confirm at thier meeting tomorrow. 

 

Thanks, Hayley 

Lotty9000

Hi Hayley 

As I didn't have clear margins and there was a visible growth on my cervix at initial colposcopy I had a second lletz to determine stage. According to FIGO guidelines any visible growth is stage 1B however my growth was mainly high grade CGIN with the small area of malignancy, second lletz was clear so staged 1A1. 
As my family is complete and it was adenocarcinoma I had a hysterectomy as a 'belts and braces' precaution. My pathology came back NED so I don't need any further treatment, just a vault smear in 6 months. 
xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Sunflower19

Thanks Lotty that's really reassuring. I never thought I'd ever get plunged into this situation, ive only just turned 30 and never did I imagine this is how I'd start my 30s. How did you guys cope with being told you had cancer? As me mentally whilst I recognise I have been extremly lucky I am still a bit of a state at the moment. 

Lotty9000

Hi 

You're allowed to feel all over the place, it's a tough hand to be dealt, especially out of the blue. I dealt with it by working through everything, had my MRI and CT on my breaks (I work in the hospital I was treated in). That's not right for everyone but it worked for me. I definitely had moments of feeling sorry for myself but they've quickly been replaced with feelings of relief at how lucky I've been. 
Allow yourself time, there's no right or wrong way of feeling, you just have to do what's right for you.

xxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Natalielala

I have just turned 30 today and recieved the news today the they found stage 1a1 from my lletz. I have been booked for an mri and ct scans and they said a further internal examination at some point. Feel very worried just have that feeling all will not be ok. 

Lotty9000

Hi Natalie 

I'm so sorry you've had this news especially on your birthday! 
It's awful waiting, I was similar adenocarcinoma found on lletz, had MRI and CT, no spread or lymph nodes involved. Staged 1A1. You'll see my signature.

Try not to worry too much (I know it's easier said than done). Once you've had all the tests and you know where you stand and the plan of action it'll seem better 

xxxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

noodlesdoodles

Sorry you find yourself here - it is a shock and that takes time to adjust to so be kind to yourself and do whatever you feel is right for you. They are treating to cure you so will do another LLETZ or not with that inmind. It sounds very positive it’s so small and hopefully they have got it in one go as clear margins is exactly what you want to hear.

Take time to come to terms with this and know you are with people who get it on here. Look after yourself and big hugs xxxx

Sunflower19

Thank you both I really appreciate your kind words. It made me feel a bit paranoid about tests being accurate as my last smear 4 years ago was normal and it says everywhere that it on average takes 10-15 years to develop into cancer. I'm annoyed at myself for not going a year ago when I should have done because maybe it wouldn't have got to this point, especially with how small it was and equally it sounds strange but I can't come to terms with literally how lucky I have been. 
I am a bit worried that they might find something else at my second LLETZ as they said it's to remove some CIN 3 that they missed. I keep thinking what if that's Cancer that's been missed. My mind is in a bit of overdrive today as I'm sure you can tell. 

Tivoli
Tivoli's picture

Hi Hayley :-)

Yes, clear margins is very good indeed :-)
Were you told whether it's squamous (80% of cases) or adenocarcinoma (20% of cases)?
If your team are pretty certain that you won't need any further treatment or tests my guess is that you have squamous cell cc which is lots easier to find and to treat.

Be lucky :-)
Tivoli

Sunflower19

I was told the cells on the outside which is squamous cells right? I do have to have another LLETZ because there was some residual CIN 3 left over and I'm terrified that they will find cancer in that. I'm having to wait 3-6 weeks for that treatment as I need to heal from this one, which was done almost 3 weeks ago. I'm still bleeding quite a bit with no signs of stopping. Is that normal? 

Tivoli
Tivoli's picture

Hello Hayley :-)

Certainly that does sound like squamous to me :-) I'm sorry but I cannot advise you about LLETZ from personal experience, only from what I have read on these boards.

Try not to be terrified, it does not sound as though you have a monster in there, only a gremlin. Your team will fix that for you, no worries :-)

Be lucky :-)
Tivoli

Lotty9000

Hi Sunflower

Bleeding after my first lletz started about day 10 and continued until about week 4/5 post lletz. I had to wait 6 weeks for the second lletz as you say to allow my cervix to heal from the first. I bleed from the lletz proceedure the second time for about 4.5 weeks.

xxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

slb97

Hi, my story is very similar and since having clear margins I have been all clear and HPV free. I completely understand the weird feelings this all brings up but you will feel better soon. You may find a bit of anxiety around checkup time but my annual check ups feel as routine as my dentist appointments now :-)

I had a fair bit of bleeding too so try not to worry. The remaining cells they cleared after my second procedure were cancer free so there’s a fantastic chance that yours will be too.

Try and go with the flow, be kind to yourself and try talking to someone if it gets a bit much. I did have a wobble emotionally last year but there were other factors too and things are good now. All these fabulous ladies are here if you need to chat xxx

Smear 20.6.16

Lletz moderate changes local anaesthetic 26.7.16

Letter inviting appt 19.8.16

Appt 23.8.16 diagnosed 1a1 consultant thinks all removed at lletz

MRI 30.8.16

Follow up appt with consultant 16.9.16. Officially 1a1 squamous, tumour removed, no lymph node involvement or CGIN but unclear cin margins 

Choice of hysterectomy or Cone - chose Cone 28.9.16

All clear from cone! Check up colposcopy April 17

Ultrasound June 17 - fibroids with one near cervix

2 colposcopies - unable to take smear due to scar tissue Aug 17

Normal smear, HPV clear, Nov 18, next due Jan 20

Sunflower19

Hello thank you for your message. I think I just feel a mixture of thank goodness I went when I did, how lucky I've been to a little bit distrusting in the testing as I had a normal result 4 years ago. How long did your bleeding last for if you don't mind me asking? I noticed in your signature you had an MRI, they have told me I don't need an MRI because it was so early but I don't feel comfortable with this, should I ask for one? I know they're the professionals who see this every day but still I want to be sure as it's my body. I hope these feelings do subside as I feel like they've taken over a bit at the moment and times stood still especially as no one I know has been through or is going through this, it's a pretty lonely place at the moment. Sorry for sounding really dramatic as I know I've got off lightly hopefully it will sink in more over the coming weeks, the waiting is the worse! 

slb97

Hi, there's no need to apologise for how you are feeling; there are no right or wrong ways to feel.  You need time to process the situation and it will get easier.  The waiting is definitely the worst part as your mind can play tricks on you and I thought my low back pain was evidence that it hadn't all gone at one stage but quickly realised that a lot of the population get back pain :0)  I too had all clear smears before as well so don't let the 4 year thing worry you as it happened to me after the 3 year check.  The consultant said there was a slight possibility that it was missed in the 'previous one' but at least regular screening can usually catch it in the end hence our situations.

I've read a lot of posts about MRIs for stage 1a1 and it really depends on the hospital's protocols I think - some people did have one and some people didn't.  Mine was absolutely fine and whilst you could ask for one, I would trust their advice.  Also recurrence from 1a1 is remarkably rare so please don't worry (I asked my consultant and researched until I was blue in the face lol).

Finally, I had bleeding for about a week - if in doubt though give your GP surgery or colposcopy unit a call and hopefully they can put your mind at rest.

Always here if you need to vent xx

Smear 20.6.16

Lletz moderate changes local anaesthetic 26.7.16

Letter inviting appt 19.8.16

Appt 23.8.16 diagnosed 1a1 consultant thinks all removed at lletz

MRI 30.8.16

Follow up appt with consultant 16.9.16. Officially 1a1 squamous, tumour removed, no lymph node involvement or CGIN but unclear cin margins 

Choice of hysterectomy or Cone - chose Cone 28.9.16

All clear from cone! Check up colposcopy April 17

Ultrasound June 17 - fibroids with one near cervix

2 colposcopies - unable to take smear due to scar tissue Aug 17

Normal smear, HPV clear, Nov 18, next due Jan 20

Tivoli
Tivoli's picture

Hi Hayley :-)

I just wanted to reassure you that if your cancer is both squamous and measured in microns, there is no chance it will have ventured further, which is why an MRI is deemed unnecessary.

Be lucky :-)
Tivoli

Sunflower19

Ladies thank you I really appreciate your reassurances. I am finding some days I'm feeling rational and positive and others not so much. It's a rollercoaster. 

a random question, so say if I in 6 months time have a normal result, can my partner if he has a HPV infection active reinfect me? Or I've been told HPV doesn't just infect the cervix it infects other parts of the genital area, even though the LLETZ removes the cervical cells, what about if other parts are infected? Could the hop back onto the cervix? I probably sound mad, maybe I am haha! 

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Cervical cancer