Cervical Cancer Blog Post Fifteen aka Trachelectomy Part 1

9 minute read time.

I’ve already written about what I refer to as ‘The Little Op’ which was my Pelvic EAU and Lymphadectomy (here and here) and now I’m going to be writing about what I refer to as ‘The Big Op,’ which happened nine days afterwards.

I’ve already mentioned ‘The Big Op’ in passing a few times, but I’m going to be writing about it in more detail. And because I have a lot to say (when don’t I?) I’m going to break this into three parts. This is easier for you, the reader, to have smaller sections and also, it’s easier for me to write. Not from an emotional perspective, goodness no, but because I am like Dug from Up and get distracted if I try and stay on something for too long.

https://www.youtube.com/watch?v=xrAIGLkSMls

This blog post is going to be one giant ‘Medical Interlude’ because I like to give background.

The operation I had was called a ‘Trachelectomy,’ which was done in place of a Hysterectomy. As I’ve mentioned before, the ability to have a Trachelectomy performed is based on three factors: –

  1. Stage of cancer
  2. Age/ fertility chances of patient
  3. Availability of procedure based on NHS post code lottery

Sadly, it seems that if some women match points 1 and 2 but not 3 then they are scheduled for a Hysterectomy. This is because Hysterectomy is considered the ‘standard of care’ for cervical cancer surgeries and it does appear that us Trachelectomy ladies are not a large part of the cervical cancer population.

I was fortunate enough to tick the boxes to have a Trachelectomy.

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From what I can gather via the Jo’s Cervical Cancer Trust Forum is that there are women who meet points 1 and 2 and not point 3 who went on to have a Trachelectomy. This is because they were keen to preserve as much of their fertility as possible because they hadn’t completed their families or had yet to start.

I don’t know their stories or what they had to do to get referred to a hospital/ consultant that offers a Trach but I will say this… I encourage you to fight to obtain one if that is what you want. I can’t guarantee that you will obtain one and I can’t guarantee that you won’t have to travel over 100 miles to get to the nearest hospital that will perform one but this is YOUR life and YOUR body. Do what you need to do.

I’m now going to take you down the rabbit hole of what a Trachelectomy is. Yay, you lucky people!

Medical Interlude

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The Cervix

I have already done a glorious biology lesson (here) but let me remind you again as to what a cervix is and what a cervix does as it is a little bit more than just a clump of something useless that is easily removal.

The cervix is a part of the female reproduction system that is the base of the uterus and connects the uterus and vagina together. If you are uncomfortable with me using the word ‘vagina’ please replace with ‘birth canal,’ or ‘foof,’ or ‘lady love tunnel to the endless abyss,’ or alternatively ‘grow up.’

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The role it plays in female reproduction is quite important. It allows for menstrual blood to pass out of the uterus, allows for sperm to go into the uterus and if a pregnancy occurs it closes up to ensure that the pregnancy lasts full term.

When labour begins that bad boy, er girl, dilates to allow the baby’s head to pass through. Here is a picture that I can relate to that is about cervical dilation: –

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Hmmm. Doughnut. But owwwww…… doughnut. This is approx. 9cm…

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I just… wow. My eyes are watering a tiny bit here. My incinerated medical waste cervix and I salute you ladies who go down this path…

Anyway, the cervix is a pretty big deal. Some would say the unsung hero of the female reproductive system. Well, I would say that now I don’t have one.

Trachelectomy

I googled some images and saw lots of lovely medical photos but I am going to spare you those and go for some diagrams instead.

So, what does the trachelectomy do?

Jo’s Cervical Cancer Trust provides us with this definition: –

The cervix and the upper part of the vagina are removed but the uterus is left in place. The operation may be done using laparoscopic or robotically assisted surgery.

Here is a picture for you: –

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I found some more pictures online but god they were worse. They were so much worse.

Here is my definition of a Trachelectomy: –

They are going to cut out your cervix, which you have never ever given any thought to until suddenly you are told that they are going to cut yours out. You wonder how something so small could cause such problems and wonder if it’s even worth it but then you remember Jade Goody and agree to whatever it is the consultant is telling you they will do. They will put you under general anaesthetic and go back in via the holes in your stomach that they have already made. When you are unconscious they will remove your cervix and a piece of your vagina and you can only hope that it is a small piece and that you have a very large vagina and won’t notice a piece is missing. Because your cervix is the middle bit that holds your uterus and vagina together they need to reattach the base of your uterus back to your fanny. Simply put, they can’t have your uterus being used as additional storage for when you haven’t met your allowance at the airport. They will tie your uterus together at the base and create a ‘faux-cervix.’ They will do this with a nifty purse string stitch which now means you can’t look at drawstring bags in the same way.

I’m hoping that tells you what you need to know. In essence, a chunk of your reproductive system is being cut out and then you have your uterus and fanny tied back together.

A purse string stitch (or cervical cerclage as it is known) for those interested: –

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Again, I do the googling so you don’t have to. You are welcome. I have seen things that cannot be unseen!

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The first Trachelectomy was performed by a French Obstetrician – Gynaecologist in 1993? At the time of writing this blog (2017) it means that the surgical procedure is 24 years old. I don’t know how many Trachelectomy’s have been performed worldwide since then and when I ask Google it keeps telling me how many Tracheostomy’s have been performed instead. I’m like… no Google. Bad, Google.

So, what is good and what is not so good about the Trachelectomy?

The Good

Your ovaries and uterus remain which means that you will still produce eggs and have your periods (er…. yay?) and it also means that you still have the ability to get pregnant and carry a pregnancy to term. This is wonderful. This is what the Trachelectomy was designed to do.

As I’ve said, this is not yet considered to be a standard of care but is a wonderful option for women who have been diagnosed with cervical cancer who may want to go on and have children someday. This is a fertility sparing procedure which offers just that.

However, my consultant told me that whilst this is a fertility sparing procedure it is also fertility impacting. I’m sorry to put a cloud to the silver lining but I want this to be an honest blog.

The Bad

Remember when I said the below: –

The role it plays in female reproduction is quite important. It allows for menstrual blood to pass out of the uterus, allows for sperm to go into the uterus and if a pregnancy occurs it closes up to ensure that the pregnancy lasts full term.

When labour begins that bad boy, er girl, dilates to allow the baby’s head to pass through.

If you cannot remember, it is literally in the blog post above. Honestly, pay attention when I give you these highly valuable medical interludes.

Some, possible problems may include: –

  • Cervical stenosis (where the menstrual blood struggles to pass out of the uterus on account of there being no natural hole remaining to let it out)
  • Difficulty conceiving (on account of there being no natural hole to let the sperm through)
  • Increased risk of miscarriage including late term miscarriage or premature birth by up to 20% (on account of no cervix to close up to ensure the pregnancy is maintained. This is where the cervical stitch comes into play. It seems the medical professionals will try and get you to as far as they can.)

What is guaranteed is this: –

  • No vaginal birth – it will be a sunroof experience. You will have to have a C-section, there is no getting around that.

Aside from the above guarantee, the other issues are possible problems and not guaranteed because nothing can be guaranteed. Apart from that one thing that I said was a guarantee… look…just…shut up.

The cosmic dice roll gives some people cervical cancer. It seems that if you have a Trachelectomy the cosmos will be rolling that dice again when it comes to fertility. I’ve heard many different types of stories via the Jo’s Forum from women who have had many different post-Trach fertility and pregnancy experiences.

Some are truthful, painful recollections of how the dice did not come out in their favour. Sometimes more than once. Other’s are inspiring, hopeful tales of how their post-Trach baby is now reaching their third birthday and they are looking forward to delivering their second post-Trach baby soon.

Ultimately, the Trach is the best shot at fertility preservation. Sometimes, you have to take the shot.

This is the nature of it. Sad to say, cancer hits people hard but the treatments, in whatever form, aren’t without their difficulties either. Most cancer stories are not about the hideous tumours that took up residence in our bodies, but are the human stories of treatment and survival and the god-awful cancer ‘experience’ that transpires after diagnosis.

This seems like a rather sombre way to end this post and for that I am sorry. This is only post one of my Trachelectomy experience (it’s like a theme park ride – please queue up for the Trachelectomy experience) and I have two more posts to go. Wait until next time when I take you on the rollercoaster ride of ‘The Surgical Experience…Experience….Experience…Experience.’

Can you please just imagine a glorious, godly echo on that last sentence? Thank you.

https://atyourcervixuk.wordpress.com/

Anonymous
  • Hi Gerry,

    I just wanted to say I love your blogs, I binge read all of them after your last post and have been waiting for this one like a crazy fan girl. It's a skill to be able to make someone laugh whilst blogging about cancer.

    I hope things are good with your recovery.

    Xx

  • FormerMember
    FormerMember

    I'm going through all this at the moment, currently waiting for nodes removed then trachelectomy. one thing I've really struggled with is people's understanding of what I'm going through especially at 30 with no children (even the doctors!). Your blog has really helped and made me understand I'm not the only person to be going through this. thanks x

  • Hi kate_1987

    Just noticed your first message above and wanted to let you know there is a very active (and friendly) Cervical Group you could join to get any questions you may have about Trachelectomy and/or Nodes answered by those who have been there, done that. Just click the coloured text link to open the group page :)  You have to actually join the group to start a new discussion though.

    Hope this is of some help, G n' J

  • FormerMember
    FormerMember

    @Dreamthief

    Thank you so much!

  • FormerMember
    FormerMember

    I'm glad this is helping people because I had hoped it would if anyone found themselves in the same situation - it's always nice to know that you're not alone even though this whole experience can feel incredibly lonely at times. Thanks for hanging in there and reading my nonsense ;) Just keep hanging in there xxxxx