Radical trachelechtomy journey - long post sorry!

Hi all

I’ve been lurking on the boards for the last couple of months and although I’ve never posted I wanted to say thanks to everyone as the advice and information I’ve found on here has been invaluable. I’ve been checking in on peoples’ journeys with baited breath and sending positive thoughts but never found the courage to commit to writing. I wanted to tell my story as I recognise so many of the fears and questions I see cropping up and if I can be of any help back that would be great.

I went to see my Doctor back in October (the day after my cat had to be put down and I’d broken up with my boyfriend!) because I had some bleeding after sex (actually it looked like someone had been murdered) and some inter-menstrual bleeding as well over a couple of months. I was a few months overdue for my smear as well faceplant. One look at her face when she saw my cervix and I knew it was serious. It bled as soon as she touched it. I was referred to the gynae clinic at Guys and St Thomas’ under the 2 week route so I had a fair idea she suspected cancer.

I was seen 8 days later at the hospital and my consultant was amazing. He took a biopsy and also felt around a lot and made an appointment for me to come back a week later. He said he’d found a ‘wart like’ growth. Having been on the forums here I deduced he also suspected cancer as the wait is often longer and I figured he was checking for spread when he examined me. He confirmed I was 1B1 a week later and said he knew I already knew it was cancer. The wait before that appointment was the worst of my life. Although I knew what he was going to say I had no idea of the staging and feared my fertility was about to me taken away or even worse that he’d say there was nothing he could do for me. I’m 35 and single and although I don’t know if I’ll have children the thought of having the choice made for me was more than I thought I could deal with. I was told I was a candidate for a trachelechtomy but that I needed scans to confirm. I had all the pre-op assessment then and there, spent 3 hours in total in a bit of a haze being prodded and poked and piled high with literature, special pre-op drinks and wipes I was to swab myself all over with before the op.

I went for a CT scan and an MRI, and the day after I was called back for another MRI the next day without explanation. I assumed the worse and had a total meltdown in front of my entire office. Id’ been holding it together until that point but the stress just sent me into meltdown. When I got to the MRI they said they just hadn’t got clear enough images and redid the scans, this time with the dye.

Fast forward to my next consultant appointment and I saw a different doctor who told me the MRI had come back clear with no sign of the tumour which meant that my cancer was actually very small and although in 95% of cases a trach would have been the right operation, it might be possible to get away with a cone biopsy. I asked about lymph nodes and he said there was a small chance I wouldn’t need them out either. I had to make a choice on the spot and the doctor wouldn’t guide me either way so I decided to try for the biopsy.

I had the biopsy and EUA under general anesthetic and it was pretty stress free, except the hospital misplaced my clothes and didn’t tell my Mum where I was (she had my phone) so I ended up an extra 3 hours at the hospital waiting to be reunited with both.

I met with me original consultant and he seemed annoyed the cone biopsy had gone ahead and had been voted for in the MDT meeting in his absence. I didn’t have clear margins and now my trach had been moved again as a result of the first surgery. In total my op was moved 4 times which shredded my nerves a bit but luckily work were amazing about it all.

I had the trach and lymph node removal on 3rd December and was in hospital 5 days in total - although the last 2 it seems were a mistake as 3 different doctors told me I’d be discharged on day 3, but one said that’s not what she had heard and didn’t let me go. When I got my discharge notes lo and behold they had me as supposed to have left 2 days ago. I got my own private room in the hospital which was a curse and a blessing as I got some privacy but think I got a bit forgotten about at times. I had way too many visitors, I organised it that way but in retrospect could have done with a lot more sleep time.

When I was in the hospital I saw the consultant who said that he was confident this would be the end of it, and on 16th Jan after a 2 hour wait (argh) he told me my lymph nodes were clear and I was free of cancer. I was completely shell-shocked but my Mum dragged me home for a glass of celebratory bubbles.

I’m on week 4 of recovery now and doing well. I’ve just finished my blood thinning injections and when I got used to doing them it was all fine (I just rewarded myself with chocolate after each one). I was recovering at my parents’ over Christmas but I’m back home and my energy levels have really picked up this week. One massive positive - the compression stockings seem to have totally cleared up all my cellulite!! I’m sure it won’t last but I’m on holiday in 2 weeks and will be very grateful if I can keep it up until then. My wounds have healed nicely and have left only tiny scars. Only ongoing issue is cystitis that I have now had for 3 weeks because of the catheter. It seems the antibiotics have seen off the infection but everything is still irritated and waiting to settle down.

My GP has been great, she basically asked me how much time I wanted signing off work for, offered me counselling, gave me a good talking to about taking it easy and was so kind I felt like crying. She also gave me a form to exempt me from prescription charges, which the hospital didn’t ever mention to me.

During the op they put a smit tube in my where my cervix was to keep things from closing up while I healed, I’ll go back to have this out 6 weeks after the op and then I’m on the usual 3 month check ups.

I has been a complete rollercoaster from start to finish. I’ve had the most amazing support and love from my friends and family and have had to learn to be a lot better at asking for help. At times the stress and worry felt too much to deal with and binges on Dr Google had me convinced my life was over. It still feels like there’s a long road ahead but I have got a lot better at not worrying about things so much until they actually happen.

My heart goes out to everyone out there diagnosed, or just going through the worry and stress of waiting to find out if anything is wrong. If anyone has any questions for me I’m more than happy to answer where I can. In the meantime it is my personal mission to browbeat every last person I know into getting their smear tests done. If I had just gone when the letter came and not prioritised work I could have saved myself a world of pain but hindsight is a powerful thing…

Kat x

Glad to hear you're recovering well Kat :) 

I had trachelectomy & lymph node removal on 30th Nov and had my results 22nd Dec and all clear too! 

Great news for us both in time for the New Year. 

Hugs 

Jaime X 

21-8-15 Abnormal smear results high grade changes. First smear aged 24 

25-8-15 LLETZ procedure.

6-10-15 Biopsy results - Diagnosed Cervical Cancer 1B1

30-11-15 Vaginal Trachelectomy and key hole lymph node removal 

22-12-15 Results - All cancer removed and lymph nodes clear :) 

Great news! Thanks for sharing :-) I suspect it was 16th Dec and not 16th Jan you heard your lymphs were clear :-D

Be lucky :-)
Tivoli

Thanks Jaime, glad to hear you're recovering and got the all clear for Christmas, best present ever hey?

Tivoli - whoops, you're quite right, sorry it was a late one! :)

Brilliant news Kat! I am a 1B1 girl too. However, I opted for the hysterectomy as I already have 2 children. I was also given the all clear at the beginning of November.

I love when ladies post positive outcomes like this. Hopefully it will give some hope to those ladies who have recently been diagnosed.

xxxx