Awaiting Trachelectomy (first post-sorry it's long)!

Hi everyone!

This is my first post; even though since this rollercoaster journey began, I've consistently used Jo's Trust for advice and support. I kind of feel ready to tell my story and chat to people in a similar position.

It started with a normal trip to my GP for a repeat prescription of my pill and I mentioned that I'd had bleeding after sex, which had become more frequent. I had also noticed some discharge. I was 27 (a couple of weeks before my 28th birthday) and didn't have periods as a result of my pill, but wasn't too concerned. My GP also wasn't and said it was probably nothing, I was due my 2nd smear in 2 months and she decided to do it there and then.

That's when it all got a bit scary; as soon as she touched my cervix it bled, heavily. She tried to reassure me but I honestly didn't hear a lot of what she said. She referred me to a gynaecologist for a colposcopy as an urgent appointment.

I went the following week and saw a lovely doctor, who again was very reassuring. He explained during the colposcopy that there were some irregular cells and he was taking some biopsies that he'd send for urgent analysis. He asked me to come back the following week and asked my boyfriend to come with me again too.

During that week I read a lot about irregular cells and I think I convinced myself that the worst they could tell me was I had CIN3. When we went back he wasted no time in telling me I had cervical cancer and he was referring me to the Royal Marsden for an MRI and to see their gynaecology oncology team. I was in total shock, as was my boyfriend. I had a cry but then pulled myself together and realised I had to tell family and friends that were waiting for my results.

We travelled to be with family, which really helped. Also it was my birthday and I cancelled my party, so it was nice to still celebrate it in some way. Also that week my Dad was diagnosed with prostate cancer- I know that sounds insane, but it's devastatingly true.

I had my MRI and saw the team at the Marsden. It was lovely to meet my 'team' and my amazing key nurse. They reassured me they could cure me and would try their best to preserve my fertility. That was my biggest fear. I know that it might sound ridiculous but I was never scared I would die, I was always scared they would tell me I couldn't have children.

They scheduled me in for an exploratory surgery to take a closer look at the tumour and to remove my pelvic lymph nodes. They couldn't tell just from my scans if the tumour was too big for a trachelectomy.

When I woke up from my surgery I felt fine (other than going into urinary retention, urgh) which was strange as I expected to me sore from the key hole surgery. The team came to visit me on the ward and explained when they examined the tumour more closely they found it was too large and they had not taken my lymph nodes. They thought it would be best to perform a hysterectomy, where I would keep my ovaries but lose my cervix and uterus. Basically I wouldn't be able to carry a child but through IVF could possibly have a child of my own through surrogacy. 

I was devastated but understood that they needed to do what was best for me. The hysterectomy for scheduled for the following week.

I went home to visit my Dad and spend some time with family when one of the doctors rang me. He explained that this was going to sound strange but they had taken some biopsies during the 'non op' and they had come back showing negative for cancer. He said that the biopsies taken so far had all been 'highly suspicious' of cancer and because of this they obviously wouldn't want to do an operation as irreversible as a hyseterctomy. Instead they scheduled me in for a knife cone biopsy on the same day. He stressed that there was only a 5-10% chance that the tumour wouldn't be cancerous and it was most likely I would still need a hysterectomy.

This was really difficult; a lot of family and friends were really optimistic but I didn't want to let myself in case I was disappointed again. The cone biopsy went well and I only stayed in one night. I was able to go home to spend christmas with family.

A few days after the surgery, one of the doctors called me. He said they didn't have the final results but he knew I wanted to know asap and provisionally it seemed that they were able to remove all of the tumour, and only a small part of this was cancerous. They obviously needed the final results but it looked very positive and it was the right decision not to do the hysterectomy, and they could probably do the trachelectomy to remove the cervix and pelvic lymph nodes.

So that's more or less where I'm up to now! I got the final results on new years eve and they agreed to schedule the trachelectomy for the 4th of Feb- enough time for me to heal from the cone biopsy. I had a little infection but that cleared with antibiotics, so healed well. And now the op is less than a week away.

Sorry for rambling! I think I needed to get it all out, it's all happened so quick- all in less than 2 months! And since the last op I've had a lot of time to think about everything. I obviously feel so lucky that by some weird change in events I went from having a hysterectomy to not needing one. But I still feel like I won't let myself get too complacent with celebrating until it's all over.

Really I'd love to know if anyone else has had a trachelectomy, how did you find it and have you had any success with getting pregnant? 



Also if anyone could tell me how to set out my 'signature' so it's not all squished or full of jargon, please help! I've given up trying :)



Hi there! 

I had a radical trachelectomy and lymph node removal on the 12.12.12.  Talk about a date you won't forget lol  I understand how scary it is, I was very nervous before mine.  I think anything that's an alternative to a hysterectomy is a fantastic choice to have and at least were in the lucky few who have that choice, I don't know if you have any children? I don't and for me the alternative to the trachelectomy was too much to even contemplate.  This is what kept me going through the whole thing, how lucky I was to get this surgery.  I have to be honest it is major surgery but compared to the alternative a much better outcome fertility wise.  On the plus side my consultant told us we could start trying for a family 6 months after the op and that around 70% of women who want to get pregnant after a trach can do.  What else would you like to know? 
I'm not sure how much/little information you would like before your op?  At least your on the journey now step by step you will make it out the other end xx

Hi Louloupop,

Thank you for getting in touch :) wow 12/12/12 is a very memorable date indeed! Hope you are feeling well.

Like yourself I don't have any children and was devastated when they told me I needed a hysterectomy. I had 3 days where I thought that was the plan, so feel incredibly lucky that that's no longer the case. And I now really appreciate how fortunate I am to be having the trachelectomy.

It's good to hear your consultant is so positive about pregnancy. I just find it difficult to look that far ahead at the mo.

How have you found the recovery? I'm a little bit concerned about lymphoedema business- how are these stockings I'm hearing so much about?! It's nice to chat to someone who's in a similar position- I feel like everyone is so relieved that I'm having this surgery that I'm reluctant to get too carried away in case things change, again.

But like you say, step by step :) 




This is also my 1st post but Jenoir_cha i could just copy your story as they are so similiar!

I went for a smear on 13/12/12 and the results showed adnormal cells so on the 23/01/13 I had a colposcopy and a biospy. On 07/02/13, my 30th birthday i was called in to my consultant and told I have 1b1 cervical cancer. Since then I have had an MRI, 2 CT scans and a PET scan. I was told by my consultant 2 weeks ago that I would need a hysterectomy.

This was worst than finding out I had cancer! I have a 3 year old girl but always expected to have more. Today I saw my consultant again and now they say I can have a Radical Trachelectomy and also will be removing the lymph nodes. Although i was scared of the surgery at least there is hope of future pregnancies.

The team told me there is a 40% chance of having a sucessfully pregnancy but it will be high risk and werent very hopefully. I have been on the net looking at statastics and from what I read there is a 72% chance having a baby.

Can you tell me how you found the surgery/recovery?? I'm very nervous about it, the only time i've ever been to hospital was having my daughter.

Any tips or advice would be great!

Hi T,

I've replied on your post but if there's anything else i can help with please get in touch :)