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CC - 1b1 - hysterectomy or trachelectomy

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ChloeSimone
CC - 1b1 - hysterectomy or trachelectomy

Diagonosed yesterday with CC stage 1b1 they think... MRI/CT scans in 3 weeks although doc said he will try & bring that forward then GA in July to check further... I didnt cry until today (think it was a late reaction) as after I recieved the letter to go back for further managment in 11 days I already knew what they were going to say. So i think id already prepared myself. Although my mum & partner were both upset obviously. I was too but I think I just knew! As soon as I know my actual staging, hoping it hasnt spread & mu treatment plan I think ill feel a lot better. I think the hardest part for me is thinking about what I want done... hyster/trach??!! Im 25, have asked for smear tests for years & obviously been refused, have a beautiful baby boy, my parter has 2 boys already from a previous relationship who stay with us weekly & we maybe would have thought about another one but I value my life & time with my boys more so... doc suggested trach as Im young but im worried CC will return in future so thinking maybe a hyster would be better?! Im away on holiday middle of Aug to Haven site in Wales for the kids & he said it'll all be done before then anyway so not long...

TeresaF.

Hi there:

I've just bounced over here from your other post. So glad the christening went well.

You're in good company with 1b1.  Seems like there are a ton of ladies on here hanging out in the 1b1 club so you'll have tons of support and advice as you start dealing with this crap. Hope you'll keep us posted, assuming you survive the holiday in Wales with all your boys! 

Hyst or trach? My doc said that if I had been younger she would have offered me either op, which suggests to me that both have equally good outcomes. Why not check with your doc? As you say, your goal is to make sure this crap never comes back. If one is better at ensuring that then go for it. If they're the same then maybe look at the trach. Who knows? Maybe you'll get the urge to add another male to your household! The trach is a more complicated op, apparently, so I don't know if that matters to you. Ask him/her the success rate of pregnancies post trach for women like you. I'm sure tons of women on here will jump on with advice too.  Then, once you've got all the info you can make your decision.

Good luck. t

 

 

24 March 16  Annual smears up to date. First abnormal pap.

14 April 16  Cone biopsy plus D&C under GA. 

28 April 16 Staged 1A1. Microinvasive adenocarcinoma. Biopsy had removed  tumour, but CIN 2 in situ. Clear margins, clear uterus. Hysterectomy booked.

10 May 16  CT Scan and XRay clear - yay!

23 May 16 Simple hysterectomy, excluding ovaries

26 May 16 Biopsy of cervix revealed a skip lesion/further tumour ( 2mm x 6mm) higher up. Uterus clear. Still classed as 1a1 so treatment will be 6 monthly check ups.

1st June 16 PET scan clear. Yay!!

13 Dec 16 - first check up.  All good.  Yay!

10th May 17 - 2nd check up. All good. Yay!

Nellie

Hi there

so sorry you are in this situation.  I was diagnosed with 1B1 in Jan 2015.  I had a successful trachelectomy and I am still all clear now. 

I don't think anyone can make the decision for you about trach or hyster and there are pros and cons for each, but we may be able to shed some light.

First things first, the success and recurrance rates for trach and hyster are comparatively similar.   This is beccause they are incredibly selective about who is eligable for a trachelectomy and will only do it if they think it will cure you.  The trachelectomy is also a less invasive op and recovery is quicker.

Trachelectomy does preserve fertility, but any future pregnanies do carry a higher risk of second trimester miscarriage and pre-term labour.  You will also need to be monitored every couple of weeks through pregnancy and will have probably have progesterone throughout.  You would also have to have a cesearian section. So it is a little harder and more complex.  LOTS of ladies have had successful pregnancies though.

There is also the risk of ovarian faliure to consider and look into as well.  I don't know a great deal about this, but there is some evidence around to show that the ovaries can fail a few years after a hysterectomy, so you may go into menopause much earleir than you would have done without a hysterectomy.  

Lots to consider!  Go easy on yourself, you have time to think about this - and any questions ask here.  

October 2014 - Severe dyskorosis 

December 2014 - Lletz 

January 6th 2015 - Diagnosed 1B1 squamas cell cancer.  Poorly differentiated

February 6th 2015 - Radical Trachelectomy with lymph node removal.  2 weeks later ALL CLEAR!

Having 3 monthly checkups including smears, internals and occassional MRI's  

 

Tivoli
Tivoli's picture

Hiya Chloe :-)

Welcome to the forum, though obviously, sorry to hear about your circumstances. If it were me, I would choose a trach as it is less invasive. I don't believe in carving out more body parts than are absolutely necessary. Sorry if that sounds brutally blunt, I am in a rush today, I will speak more sensitively next time we meet :-)

Be lucky :-)
Tivoli 

Sunflowerkerry

Hi, chloe

judt anted to pop in and see how you are as I spoke with  on the colposcopy forum. I am so sorry to hear of your diagnosis. just wanted to let you know you are in my thoughts and feel free to message me at anytime as I know that having an outlet other than family can be a great support. 

big hugs xx 

 

  • smear test                16/march 16
  • LLetz treatment       31/march 16
  • letter confirmed cin2&3 plus high grade CGIN.              21/April 16
  • hospital having meeting to discuss management plan                 11/May 16
  • CGIN no clear margins booked in for repeat LLETZ under GA on 26th July 16
starlight22

Hi Chloe 

I am so sorry you are in this situation. This is a great place for info and support from other ladies.  

that is a big decision to make. I would definitely talk more to your doctors about it, especially about the probability of a reoccurrence with either op. But I think if they are offering either - I would think that they think either will be sufficient? Mmm not sure. 

I plead with my doctors at nearly every meeting to give me a trach but they say I am not eligible for it because my tumour is pushing into the parametriim tissue. At first I was a 2b but they downgraded it to a 1b1 because they thought there was spread into the tissue but apparently it's not. It's a bit confusing. 

I think you will know more once you have your scans - they will tell you exactly how big the tumour is. Mine is 3.6 cm which is another reason they say I can't have the Trach although I have heard of girls having similar sizes and being offered the Trach. 

Here for any support you need.

sending you lots of hugs

 

ChloeSimone

Thanks everyone will have the tests/scans & see what the docs say! Xx

Jacqui2016
Jacqui2016's picture

Hope you are doing OK Chloe Simone xxxx love to you 

Feb 10 2016 - cervical smear 

March 9th 2016 - smear test result showed abnormality (not stated)referred for colposcopy 

March 30th 2016 - colposcopy,  abnormal cells seen, punch biopsy and diagnostic large loop excision procedure done - awaiting results 

May 16th 2016 - results Cin3, back for colposcopy and probable treatment June 1St

 June 1St CIN 3 removed,  clear margins, all clear!  Check up smear 3mths yay!

ChloeSimone

Yer all ok tah spoke to the keyworker today & she put my mind at ease & said lets wait for MRI/CT scan results - 28th June, then go into get results 3 days later. Hopefully after this it'll give me a better idea of treatment but she think trachelectomy would be fine but obviously need to wait & see. Booked a holiday with kids (my partner has 2 from previous & 1 with me) to a Haven site last Sept & we're due to go 15th Aug but she thinks it might be a good idea to cancel... & then re-book something when I can drive again as we were going to Wales & my other half cant drive. Dont know what to do about that at the moment... wont be able to drive for 6-8 weeks & not sure it'll be very enjoyable so will see what they say...! Hope all ok with you lovely ladies xx

TeresaF.

Hi ChloeSimone: 

Glad to hear that your keyworker reassured you today. Well done you for calling her. 

Have a look at your holiday booking/insurance to see if there's anything about how much notice you have to give if you cancel or cancel and rebook. That may influence what you do and when you do it.  

I was driving 2 weeks after my hysterectomy, which was laparoscopic. Took me about 4 weeks to drive after my c sections, which were the usual abdominal incisions.  Is it a long drive to Wales from you?  Could a family member take you? If the timing of this could work out for you it might be nice to have something to look forward to although I don't know how much R and R you'll get with a pack of boys in tow! Why not send your man with one of his mates and the boys? You could stay home and recuperate in peace!

Good luck with your scans and the results.

t xx

24 March 16  Annual smears up to date. First abnormal pap.

14 April 16  Cone biopsy plus D&C under GA. 

28 April 16 Staged 1A1. Microinvasive adenocarcinoma. Biopsy had removed  tumour, but CIN 2 in situ. Clear margins, clear uterus. Hysterectomy booked.

10 May 16  CT Scan and XRay clear - yay!

23 May 16 Simple hysterectomy, excluding ovaries

26 May 16 Biopsy of cervix revealed a skip lesion/further tumour ( 2mm x 6mm) higher up. Uterus clear. Still classed as 1a1 so treatment will be 6 monthly check ups.

1st June 16 PET scan clear. Yay!!

13 Dec 16 - first check up.  All good.  Yay!

10th May 17 - 2nd check up. All good. Yay!

ChloeSimone

Sorry - tried replying to this yesterday but kept coming up error! Yes she did make me feel calmer but then yesterday had a bad day again, think its just a time where we'll be up & down! Yes I will do - Ill speak to doc tomorrow & see what he says. 2 weeks - thats good! I thought it was 6-8 weeks. Yes about 4 hours from Portsmouth. Theres me, my othee half & 3 boys so cant fit anymore in car anyway & dont think my other half wants to go without me. Plus I think id miss them too much! Would rather reschedule or cancel & book something at a later date. Hows all with you? Youre clear now arent you? Xx

TeresaF.

Hithere:

So what did you find out from your doc? 

Not sure I'd do a 4 hour drive after a couple of weeks.  I was driving after 2 weeks, but then I just poodled around, maybe 10 - 15 minutes or so. Plus it has just this minute dawned on me that I live in the US where 99.9% of the cars are automatic and I bet yours isn't. Changing gears is a lot more taxing than just pressing the accelerator or brake with one foot. 

I'm doing well thanks. Post op was fine so my 1st check up will be in December.

Take care,

t x

 

24 March 16  Annual smears up to date. First abnormal pap.

14 April 16  Cone biopsy plus D&C under GA. 

28 April 16 Staged 1A1. Microinvasive adenocarcinoma. Biopsy had removed  tumour, but CIN 2 in situ. Clear margins, clear uterus. Hysterectomy booked.

10 May 16  CT Scan and XRay clear - yay!

23 May 16 Simple hysterectomy, excluding ovaries

26 May 16 Biopsy of cervix revealed a skip lesion/further tumour ( 2mm x 6mm) higher up. Uterus clear. Still classed as 1a1 so treatment will be 6 monthly check ups.

1st June 16 PET scan clear. Yay!!

13 Dec 16 - first check up.  All good.  Yay!

10th May 17 - 2nd check up. All good. Yay!

ChloeSimone

I didnt! As with all the fuss around not sure if ops going to be cancelled, no its not, yes it is & the long waiting time along with not eating for 11 hours... I forgot! Lol ah ok yer probably not the best idea then! Ill be seeing him again soon hopefully for op so will ask him then. I think this small op is to double check staging, see if he can do a cone biopsy... Im hoping but if its spread or worst than expected prob looking at a trachelectomy as im only 25. We will have to wait & see what he says! No not automatic. Aww good im glad! Xx

Donnaxxxx

Hi hope u are all recovring OK, I have just been told I have 1b1 after lletz but clear margins, I'm waiting for xray and mri to confirm if its spread I'm so scared

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Cervical cancer