Hello. Just signed up, never would I have thought 3 months ago that I would be on here having to talk about myself and the c word together, a bit about me. I’m 24 and had my first smear on the 12th of May where the nurse doing it made it clear there was something wrong. A week later the hospital had rang my doctor to contact me to discuss my abnormal results and book my coloscopy appointment, little did I know how bad the results were. I went to hospital on 1/6/16 where they told me about my severe abnormalities and signs of cervical. Cancer, they then completed lletz and biopsy and hoped they had got it all. 2 weeks later my biopsy results were back and they hadn’t I still had cc. I was quickly booked in for a mri and I found out from the consultant yesterday that it was confirmed at stage 1b1 and it’s contained within the cervix which I was very relieved by.I asked for them to try there hardest to save my firtility and they have booked me with a sergeon to discuss either a hysterectomy or cervix and lymph nodes removal. With the second one they said it might be a possibility that I have to travel to London for it. I have so many questions and these forums I’ve been reading from the start though each stage and they really have kept me sane. If anyone has any information about this proceedure I would really appreciate it. I am also really worrying about having time off work as we are struggling as it is and can’t see how were going to afford bills ect. Sorry for the essay 
Hi Ashleigh :-)
I am so, so sorry to hear that you have to face this so very young. I'm afraid that I do not have personal experience of trachelectomy but it strikes me as the most brilliant compromise for removing all traces of cancer whilst retaining fertility and, let's face it, a decent sex life ;-) You mention having to travel to London but you don't say where from. Presumably a great enough distance to make it awkward for those dearest to you to be by your bedside? And you mention 'we' in terms of affording bills, so are you in a long term relationship?
In looking for the positives in all this, my understanding is that a trachelectomy is just as successful as a hysterectomy in curing this, as long as you have squamous cell carcinoma and not adenocarcinoma. It is a much more delicate and fiddly operation which is why it is offered only to younger women who haven't already started their families. That is also why it is not available at every hospital in Britain because not all surgeons are skilled enough to do it. But, my understanding is that it is not quite as invasive as a hysterectomy so the recovery time is quicker, and of course you have youth on your side as well to help speed up your recovery. I'm quite sure that the other trachelectomy girls will be along soon enough :-)
Big hugs to you
(((((HUGS)))))
Be lucky :-)
Tivoli
Hi there
I would imagine that what they are referring to is a trachelectomy. They remove the cervix and lymph nodes and put in a cervical stitch to support any future pregnancies. I was diagnosed 1B1 in January 2015 and had my surgery 4 weeks after diagnosis. The tracheletomy went very well and I have been clear ever since. I had the surgery done laproscopically, so recovery was not too crazy and the op was nowhere as bad as I expected it to be.
Trachelectomy is becoming more and more common and is a fantastic treatment for women who want to keep their fertility. The success and recurrance rates are also comparable to a hysterectomy. This is because they are extrememly selective about who can have the treatment. The tumour usually has to be under a certain size (usually 2cm, though I do know people who have had trach's with slightly larger tumours) and there cannot be any spread. They check for spread in the surgery and revert to a hysterectomy if there is evidence of this. This is quite rare though.
They also remove lymph nodes during the op and send them off for testing. If any microscopic cancer is found in the removed lymph nodes then they often do additional treatment - again with early stage this is rare though. So as you can see, they check things at every stage to ensure that you get the best possible chance of a complete cure and also preservation of fertility. At your stage I would say you are doing the right thing trying to push for a trachelectomy.
Any questions you have, please ask away and also feel free to private message me. Also, if you end up being eligible fo the trachelectomy I can point you in the direction of a closed/private facebook group with 106 women who have had trachelectomies.
Out of interest where do you live? This surgery is done is lots of other places other than London.
Love, luck and prayers
Thank you for replying. Yes it is the squamous cell carcinoma one. Yes I already have a child who's 3 with my previous partner. I'm now happy with my partner, we've been together coming up 3 years. He does not have his own children and we had discussed trying for a baby this year before this all happened. So it's a very big shock for us all :-( I live in Doncaster so it's a good 200+ miles away from London which is a pain. I just hope that from here there is not much more waiting to do. It's just all one big waiting game isn't it
Ashleigh xx
Thanks nellie for your reply. It really helps hearing stories from woman with experience of all this. It keeps me off google. I'm so bad at pre diognosing myself with every pain I get in my body lol
No problem! Hmmm i'm surprised they are sending you all the way to London. I had my surgery in Nottingham and I feel sure there must be doctors with expereince in Manchester and Leeds. I'm sure other women will chime in if they have had a trach closer to Doncaster.
Stay away from Dr.Google as well, it will not help!! Jo's has lots of info which is far more accurate and we will happily answer any questions you have. Oh, and suddenly thinking that every pain means that the cancer has spread is copletely normal. I even had phantom pains! It all gets so much better once you know where you stand and have a treatment plan. But you WILL be okay, and you will no doubt be back posting on here in a few months time advising other newly diagnosed girls!
xxx
The consultant that I saw yesterday didn't no anything about the operation really so iv been looking myself but hopefully I will find out more on the 11th when I speak to the surgeon. Do you know how long after this appointment I should have the surgery and how long I will have to have off work? Thanks
Ashleigh x
Hi Ashleigh, your surgery date may vary depending on the doctor and area. They tend to move pretty quickly on these things though.
recovery time depends on how the op is done and also the individual. I felt ready for work after 4 weeks but my job can be pretty physical. mine was done by keyhole but done people have open trachelectomies and healing time can be a bit longer.
When is your appointment. Is it far away in terms of location?
Ahh right. My appointment is in Sheffield which is not too far away on the 11th so another week and a half and then waiting for the surgery. I'm just scared if I'm waiting too long the cancer might spread more and then I will be unable to have that done. I know it's ment to be slow progressing but I don't even know how long iv had it. I acctually had the hpv jab when I was 18 which seems pointless now because by the sounds of it I already had the virus. When I think about it just makes me feel dirty even though I know 90% of people have it
Ashleigh xx
