Due to have Trachelectomy... advice please?

Well there you have it… finally got to see my consultant today… And I’m due to have a Trachelectomy and lymph node removal on 10th July.
I’m slowly moving along the forums… The post treatment one can’t come quick enough!

For some reason I’m still feeling quite positive, that itself is freaking me out! I feel like any moment I’m going to come crashing down… Lets hope not!

I’d just like some advice… It’s not a very common procedure is it? As I’m only 25 they’re trying to preserve my fertility… which I’m very happy about!

I’ve never had any kind of surgery before… Can anyone give me any advice on what I should take in with me? and what to expect?!
How long am I likely to be off work? … like I said I have no idea what to expect but I know everyone is different!

Just counting down the 3 weeks now… I’m going to kick this thing right up the ass… and fingers crossed for my lymph nodes!!

Em xxx

Hi Em

Great news that you are able to have the trachelectomy and you're feeling positive, just a little more waiting to go :)

I had the trachelectomy in April through an abdominal incision (due to size & location of the tumour) - did they tell you how they are doing the procedure? I only ask because I think recovery times/duration of hospital stay are generally less if you have the vaginal radical trachelectomy.

I was admitted to hospital the night before, and was in hospital for 8 days in total. I wasn't allowed to eat anything once I'd been admitted - they gave me 4 pre-op drinks the night before, and 2 the morning of the surgery as this is supposed to aid recovery. I had an enema the night before and in the morning as well, not the most pleasant experience but the nurses were mercifully quick at doing it! I was very wiped out for some time after the surgery, was able to get out of bed (very very slowly!) on day 3 and shuffle around to the shower and back I think around day 5. They will give you plenty of pain relief to get you through, and you'll have a catheter after surgery to rest your bladder - mine stayed in for 11 days, not the most glamorous acccessory but I was grateful for it at first!

If you have any friends or family that can be with you for a few days when you get home, I would recommend that because I was pretty much bed bound and couldn't manage stairs or much walking for the first week home. You will have anti-blood clot injections whilst you're in hospital, and then I had to have them for 28 days after surgery. I am not good with needles and arranged for the district nurse to administer the injections at first, until I felt comfortable doing them myself. You'll also have to wear compression stockings (tight knee length things, not very sexy!) in the weeks after the op.

In terms of getting back to work, my consultant's initial estimate was 6 - 8 weeks post-op but I have struggled a bit with recovery and when I last saw him he thought it would be 12 - 14 weeks post-op till I felt up to it. As you say, everyone is different and you might want to try and not commit yourself to a return to work date with your employer until you see how you feel after surgery.

Things to take with you into hospital.. all toiletries as they won't have any, sanitary towels and a normal towel, face wipes/wet wipes, nighties (easier with the catheter and other tubes than PJs), big pants (due to the swelling, get some that are a couple of sizes bigger than you normally are). Entertainment! I didn't have the concentration to read, so would recommend you take in a iPad/laptop/portable DVD player and plenty of DVDs, together with some good headphones. I was lucky enough to be given my own room but I don't know how common this is and if you are on a ward with other patients they are noisy places so ear plugs may come in handy too.

That's everything I can think of for now! Hope that helps.. feel free to message me if I can be of use with any other questions.

Lou xxx

Hi Em,

Glad you’ve got your treatment plan :slight_smile: I remember feeling very determined and almost, weirdly, looking forward to my op once I knew the date. It gave me lots to focus on and to prepare for. I went in to complete overdrive cleaning the house, cooking meals for the freezer etc!

I’d add earplugs and an eye mask to the list too, I was in a shared ward for the first 2 nights before having my own room and I’d really recommend them. I had a snorer and a shouty old lady so was thankful I’d packed them. My boyfriend brought in a favourite mug and herbal teas too which was a nice change from the plastic cups of tea too.

Xx

Thanks ladies!

I’m pretty sure it’s a vaginal radical Trachelectomy that I’ll be having & key hole lymph node removal… So hopefully my recovery time will be good … Bit miffed that it’s so close to my birthday!!

Making a list of things to take in with me already. And feel like I’m now going to finally have to mention it to people, especially as i’ll probably drop of the earth for 6 weeks or so.

I just find it so daunting telling people, I don’t mind the world knowing but actually saying it out loud myself scares me!

Also, how long did you wait for them to tell you your lymph nodes were clear?! For some reason that’s what I’m worried about most… More waiting!!

Thanks again ladies! Xxx

Hey up,

I had to wait 3 weeks for my results, due to Easter falling on the 2 week mark. It’s normally 2-3 weeks. I’m probably different given I had an abdominal radical hysterectomy so I was a bit relieved as I couldn’t have left the house at 2 weeks!

Xx

Hi EmJess,

I'm glad you're finally getting some answers, I'm still waiting for my results from the cone biopsy I had two weeks ago!

I'm so happy for you that you are getting the trachelectomy instead of a hysterectomy. I just hope they will be able to do this for me if I need further treatment.

You seem to be doing really well keeping positive, I hope the surgery goes well for you and it's nice to know you may still be able to have a family in the future.

Keep up the positive attitude, you're helping me stay positive too :)

Lisa x x x

Abnormal Smear 15/04/2013, Colposcopy & Lletz Procedure 30/04/2013, Diagnosed CC 15/05/2013, Cone Biopsy 03/06/2013, still waiting for results...

Hi Lisa!
Did they say how long the wait would be?
How are you feeling following your procedure? Ok I hope :slight_smile:

I’m sure you’re going to be just fine! After talking to my consultant about why he was doing a Trachelectomy rather than a come biopsy I know they wouldn’t of done it on you if they weren’t certain it would be the best for you… These consultants won’t leave anything to chance! Which is the best thing :slight_smile:
So I can’t wait to hear that you’ve been given the all clear :slight_smile:

You keep up the positivity too!! It’s kind of rubs off doesn’t it?!

All the best :slight_smile: xxx

Can anyone fill me in on what will happen at my pre-op assessment?? xx

Can anyone fill me in on what will happen at my pre-op assessment?? xx

Hey Em,

You’re likely to have a few blood samples taken (I had 3), give a urine sample and a nurse will ask you health related questions and measure/weigh you, do blood pressure tests etc. I also had a chest x-ray. They’ll also do a couple of swabs for MRSA in your cheek and groin area (you do those yourself).

I was given pre-op drinks too and information on what would happen in hospital, what to take with me etc.

Xx

Jo, thankyou so much! You are a wealth of knowledge! :slight_smile:
I don’t think there’s a question of mine you haven’t answered!

Hope you are well xxx

Haha, I am your stalker! I'm still off work recovering from my op so plenty of time to answer questions and help out. It's a frightening time and a weird time so anything I can do do help someone else in the same position is time well spent :) I ended up staying 6 days in hospital and I'd just say don't be afraid to speak up if you're not comfortable etc. my ward-mates changed every day with emergency admissions in the night and families traipsing through it. I was in tears after 2 days, not being a princess, I just could not switch off. I had a word with a nurse and was given my own room after that. I was so distraught with no shut eye but didn't want to cause a fuss. She was a lifesaver!

 

Well thankyou… I really appreciate it! I just want to get on with it now though… And start recovering. It’s going to be a long 3 weeks wait!

I’ll also keep that in mind! … I don’t sleep very well at the best of times!!

Hope you’re recovering well, how long have you had off? xxxx

Hey,

I’ve had 13 weeks off since my op and I’m signed off until the end of June. My recovery has been really slow though so not sure when I’ll be back yet. I’m only now walking upright and swimming! It’s been much harder than I thought tbh. But everyone is different and with a key hole op you’ll no doubt be up and about much quicker than me! Xx

Hi, I had my lymphnodes out first (in jan) and then my cervix removed (in march). Both ops were done via 5 key hole incisions. I was in hospital for 24 hours both times. For the lymphnodes I was given an epidural which was fine and I had very little pain afterwards. It does make you very bloated as I think they put gas inside to separate tissue and make everything easier to see, so don't freak out if you look like a balloon, it will go down!. I felt fine after day 3 and was up and about. I had a build up of lymphatic fluid in my groin on days 3 to 6 which was horrible but antibiotics and self massage brought the swelling down. 

After my lymphnodes came back clear ( results took 2 weeks) I was booked in for a second op to remove the cervix. This time I didn't have an epidural but had morphine afterwards which made me very sleepy And feel a bit sick. I was out again in 24 hours with a catheter for a week. That was the worst part by far, it doesn't hurt, just embarrassing! Again after day 3 I was mobile around the house and by day 10 I was going out and about.

im just over 3 months post op and I'm running the 10k race for life tomorrow with some friends. I was running again after week 6. I was back to life as normal after 4 weeks.

im 31 and luckily my body seems to have coped and healed really well.

As far as hospitals go, the food is terrible so I took some snacks. You won't be able to eat for 12 hours before the op so I woke up starving both times! Ear plugs are a good shout as you don't want to hear other people's problems while you are trying to sleep and an eye mask so you can't see them! And some money if you have to pay for your tv and are staying a while, otherwise it's boring! 

Good luck and if you have more questions just let me know

Hello parkyparks!

Thankyou so much for replying with your story!!
I’m having my lymph node removed at the same time as my Trachelectomy … So it’s not exactly the same as you! But it’s so nice to hear you positive (if that’s the right word?) story!
The running thing also makes me feel abit better! I run alot and I’m going to be going crazy, it’s my stress relief!
I’ll definately make sure my bodies ready for it though!
Hopefully my body will cope just as well as yours… it’s my birthday 15 days post op… And I’d like to be semi mobile at least so I can open all those presents :wink: haha

Thanks again :slight_smile:

Having a wobbly day again today :frowning:
With my aches & pains I’m worried about my lymph nodes… Why does your mind do this to you?!?

I feel like I’ve been quite positive through all of this and I keep going for my appointments and getting knocked back … So I’m almost expecting it now :frowning:

My op isn’t due for 2 & a half weeks… I am so fed up of waiting!!!
I was diagnosed over a month ago :frowning: and only got to see my consultant exactly a month later!
Getting abit more stressed now, and the more people that know the less I can try to be ‘normal’

I do hope the next few weeks go quick :frowning: x

Hey Emjess, waiting is the hardest bit! I thought I was having my surgery done on the 29th June but as my period is due then the date has to be changed. So at the moment I have no idea what surgery I'm having or when it will be.  So I've decided to keep busy and do lots of pactical stuff so I'm all organised and ready for when i'm recovering. More importantly I'm also going to do fun things with friends and family. I figured this will take my mind off everything for a while. I've also increased the amount of exercise I do to hopefully aid my recovery.Your  surgery date will be here before you know it.  So do something nice for yourself :-) xx 

Hi Emjess,

this is my first ever post. I also have my pre admission appointment on 4th July. I still dont know what I'm having done. I guess I'll find out when I see my consultant then. I am both posistve and on the other hand a complete mess. I feel like I'm living two seperate lives. On the one hand I am a busy teacher and mother of four. None of my work colleagues apart from my head know why I keep having the odd morningor afternoon off for appointments, and I'm a senior member of staff so am relied on for alot in work. Leading insets and metoring students, running choir and attending meetings with governors. Only my husband and best friend knows outside of work, so I feel I have to remain strong and busy and keep going regardless. On the otherhand, I am in constant pain with my lower back, I keep thinking the worst all the time. I break down in tears whenever I'm left alone, and I am terrified of surgery and what they are going to find! I know I'm being dramatic but I like you emjess I have a wobble every now and then. I feel like I cant tell my husband my fears as he will be upset and worry too much.

sorry for the rant but this is the first time I've felt strong enough to post how I feel. I'm crying agian now. All I can say is I'm glad you are all here and have such positive attitudes to it all.It really helps me reading the advice and stories.

- abnormal smear 14/04/13

- colposcopy 29/05/13

- confirmed cc 15/06/13

-pre admission appointment booked 04/07/13

Hi Tes…
My period is due the day before my op. I’ve not even thought about it!! … Will they speak to me about it at my pre-op? I’m currently on the pill. And not been told to stop taking it? Infact to continue… Maybe they’ll get me to take 2 packs together?

I’ve been keeping very busy, which is great when you have a limitless amount of money… But i haven’t :frowning: so having to calm down abit now! Hence my lazy Sunday… Which has turned into panicked Sunday!
I’m sure I’ll be ok again tomorrow! :slight_smile:

Teachturner,
Is it like a pre-op on 4th? I wish you all the best… I’m sorry to hear about your diagnosis.
As you can probably tell I’m crazy up and down but I’m getting through it, just trying to take one day at a time… What Tes said is right, try to keep busy and do the things you enjoy.

Use this site as much as you can… It’s been a godsend to me… Like you I don’t want to scare everyone around me, especially my mum & partner… But having a freak out on here is ok, everyone understands! And it makes me feel so much better just to get some words of assurance and to know I’m not alone.
You can rant to us anytime!!
I wish you all the best on 4th, let me know how you get on - I’ll be thinking of you!
It’s ok to have a wobble! … But don’t try to hide it from your husband, he may be a massive help??

Em :slight_smile: xx