Trachelectomy vs hysterectomy

Hi Everyone
After many tests, scans etc I have been diagnosed with stage 1B1. I feel very lucky in that we have dodged a bullet but now have to deal with the shrapnel & decide whether to have a trachelectomy or hysterectomy.


Cancer wise both will work, the trac has been offered so we can still have the option of having a family which is something we were casually trying for before all this started (I'd come off the pill & we said it will happen when it will happen).
However, the consultant has told me the odds of having a late miscarriage are 50%. I'm not sure if I could handle that & at the minute I’m thinking I don't want to put myself at risk of going through that.


I have an appointment with the fertility clinic to ‘see if I even work’ and I’m also gathering information on other options such as adoption.

m so scared of making the wrong decision & regretting it. d really appreciate it.

Thank you
Nic
x

Hi Nic

Sorry to hear you are in this position but great to hear it's early and there are options.  I had a trachelectomy in Feb so any questions just ask away.

I have NEVER heard anyone say that chances of a late miscarriage are 50%.  You are very likley to have a c-section before the usual due date and the chances of going into labour earlier are higher but as I say the idea of 50% chance of a late miscarriage is totally new to me.  There is alot of misinformation on trachelectomies and you need to do your own research to decide. 

Have a read of this study for a start.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651944/

Has anyone else heard of such high miscarriage rates???

I have spoken to and have actually met people who have gone onto have children after trachelectomy so there is hope. 

Nellie 

Hi Nic,

I too had a Trachelectomy 6 weeks ago following diagnosis with 1b1 CC. I have no children yet which was definitely a factor in my decision regarding which surgery to take but I absolutely grilled my consultant about outcomes! My number one priority is living...he said the recurrence rates are the same with Trachelectomy and hysterectomy which meant I was happy to go for the trachelectomy. They only offer you the trach if it is expected to be curative....if they thought they were putting you at risk they would not offer it to you so it's great news that it's on the cards :) 

I too have wrestled with the prospect of failed pregnancies but taking that chance away from myself through choice was too awful to consider.

For me the Trachelectomy was win-win.....curative whilst giving me the possibility of a family. And  just like Nellie my surgeon at no point mentioned stats like 50%!! As she said there are increased risks but my consultant said I will be so closely monitored throughout any pregnancy that hopefully any issues will be picked up on and dealt with :)

I wish I had a crystal ball just like every other brave lady on here but you're just going to have to take one day at a time and that means doing what is right for you right now, not thinking about the future ifs, buts and maybes.

If you need anything you know where to find us :) 

Sarah xx

P.S. Pretty obvious point but make sure you're being safe contraception wise if you've come off your pill as this will throw a real spanner in the works!!

I had a trachelectomy in march so I am also happy to answer any questions. I was never told it was 50% chance of miscarriage, just a higher risk. But lots of women have miscarriages anyway and they never know why. The other thing to think about it that of you have a hysterectomy then you will go through the menopause! 

Feel free to ask more questions on here or on a private message xxx

Hi

I had a trachelectomy in 2013 and am now pregnant with my first child. Only 9 weeks so its very early, but everyone at the hospital has been very positive. There is a higher risk, but on the plus side you are very closely monitored.

I had an abdominal cerclarge put in place during my trachelectomy which basically a stitch which seals the cervix closed and should keep a baby in for long enough to have a successful birth via caesarean section (who wants to push anyway :-) ! Might be worth discussing this with your surgeon.

I also had a very smooth recovery from the operation and was out of hospital within 24 hours and up and about as normal in about 10 days. I've had no side effects and no abnormal smears since.

I hope this helps

xx

 

 Thanks ladies I really appreciate your replies & for the link Nellie.

 

I now have a follow up appointment with my consultant to discuss everything again. We think there may have been a misunderstanding, in that if the normal risk is say 15%, I’d be 22% after the trac but I’ll clear it all up next Friday & feedback

 

It's really reassuring to hear how quickly you got the all clear afterwards, my brain hadn’t reached that point!

 

I'm SO pleased I posted this as I was verging to the hysterectomy (leaving the ovaries) thinking there was a 50:50 chance of losing a baby late but I’m feeling a lot more positive about the odds! THANK YOU!

 

Congratulations Parkyparks! Hope it all goes smoothly for you & completely agree re pushing ;0)

xx

That's very comforting Nic!

It's so easy to misinterpret the difference between increasing the risk BY 50% and increasing the risk TO 50%

Be lucky :-)
Tivoli

Hi Ladies

I’ve had a few appointments with a fertility consultant & my 2nd oncology consultant. Both confirm the risk is around 30% & I had misunderstood the 50%. We’ve had lots of discussions & I’ve made the decision to go for the trachelectomy which is booked for 10 September.

Thank you for all your advise & support

x

Hey....I'm glad things have been clarified for you and that you've got a date for surgery :)

If you need any further info on the trachelectomy tou know where we are :)

sarah xx

Hope your trachelectomy went well! I am 6 months post trachelectomy so let me know if you have any questions on here or private message xxx

Hi ladies, thank you for this post! I had adenocarcioma in situ and so glad to find an answer that trachelectomy can be an option. Do you still have to have hysterectomy once done with kids or trachelectomy solves the issue? I am wondering are there any side effect / drabacks? Weight gain after each of ovaries are left? I am so confused b/c trachelectomy is still a very rare treatment...I am wondering why and what is it curewise and side effects wise compared to hysterectomy?