I had my colposcopy on 19/11/15 and was told that they were marking the punch biopsies they took as urgent and that I would need to attend an appointment with the consultant on 25/11/15. In addition I had really heavy bleeding the day after the colposcopy and had to return to the clinic for them to give me diathermy treatment to stop the bleeding.
At my appointment with consultant she said it was cancer and that I was being referred to the specialist oncology hospital in my area. She said she didn’t want to speculate on how serious etc which I understand although she did mention hysterectomy may be likely and also mentioned chemo briefly and said If I was having surgery it would be before Christmas. I’m now worrying that it’s going to be really bad news and I am having trouble thinking about anything else at the moment. I keep swinging between thinking the absolute worst and then thinking it will all be ok.
Historically all my smears have been clear, the last being January 2014. I was referred to the women’s health unit by my GP due to bleeding following sex which has only been happening since September 2015.
An ultrasound scan prior to my colposcopy showed a normal uterus and the internal examination only flagged up inflamed cervix so I’m hoping that’s a sign that the tumour is smallish and could only be seen during colposcopy.
During the consultant appointment she asked whether I wanted to preserve my fertility which felt to me like they can see a future after treatment and that they think I may have several treatment options. My daughter has just turned 2 and although we were planning on trying for number 2 next summer, the thought of losing my fertility doesn’t completely freak me out as long as it means I’m around to see her grow up.
I guess I’m just trying to minimise my anxiety by clinging on to any speculation that it might not be as bad as I’m expecting.
Does anyone have a similar experience and any words of wisdom?
Thanks for reading
Hello sweetheart! :-)
Woo! It's all a bit brand new and scary just at the moment but some deep breaths and one step at a time and I think you're going to cope with this just fine. It's sounding like a fairly small tumour. Normally if you are a 2b or above they go straight for chemo-radiation not surgery, so it sounds as though she thinks your tumour is not as developed as that. Also, if she is asking about whether or not you want to preserve your fertility it sounds very much as though she thinks you might get away with a trachelectomy or even just a cone biopsy, which would suggest an even smaller tumour. The thought that you need to keep hold of just at the moment is that they are considering surgical and not chemical nor radioactive therapies, and this tells us that they don't believe there is any risk of spread.
Be lucky :-)
Thank you for your reply, it's really heartening to hear a positive view on things. Hoping my MDT appointment will be this Tuesday followed by EUA and MRI over next couple of weeks. Trying to keep busy unfortunately I have been super organised and done all Xmas shopping already so can't use that as a distraction!
Thanks again for your response I feel a bit better now!
Thought I'd write a quick update since I had my first appointment with the consultant yesterday. He has given me an initial staging of 1b2. He said the tumour looks about 1.5cm and is clearly differentiated adenosquamous. I am scheduled for an EUA on 4/12 and will have an MRI sometime the week after. He didn't even mention the possibility of a trachelectomy and I am provisionally scheduled for a radical hysterectomy on 6/1. They wanted to dp it on 23/12 but I pushed to wait until after Xmas which they have said is fine. I am having a few wobbles about the choice to have another child being taken away from me but I know I am so lucky to already have my daughter and that the cc has been found and that it is treatable. Any tips for helping with recovery will be gratefully received!
Hi again :-)
I can't believe they wanted to give you a radical hysterectomy two days before Christmas! Normally they try to empty the wards. Perhaps the way the NHS is run these days all hospital beds have to be full all of the time. Anyway, I'm glad you managed to persuade them to delay it until after the festivities. Do, please, for your own sake, ASK about a trachelectomy, don't just sit quietly waiting for them to suggest it. The best tip on this forum for recovery from a radical hysterectomy is plenty of peppermint tea. If you've been super-efficient and done all your Christmas shopping and still need some distractions then now is the time to find yourself some really nice nighties, dressing gown, slippers, that sort of stuff :-) Focus on having a super Christmas with your family :-)
Be lucky :-)
Hi Tivoli, thanks for your reply :)
I will definitely ask about trachelectomy, though wonder if it wasn't mentioned as they want to check scans etc first. I will definitely stock up on peppermint tea and may treat myself to some nice pjs/nighties as you suggest!
I am looking forward to Xmas as my brother is home for a week (he lives in Thailand) so that was part of my reason for pushing for 6th jan. I think because of where Xmas falls this year there are more bank hols so they need to cram people in to hit their 31 day targets.
went to work today and they have been great about reducing my workload etc whilst still letting me potter about the office to keep my mind busy.
Thanks again for replying, it's great to connect with other ladies who have experienced this process already. It moves so quickly once you are diagnosed that sometimes it's hard to process everything, but writing in this forum definitely helps.
Glad you managed to convince them to postpone the op!
Do ask them why they don't offer you a trachelectomy, although if you are 1b2 they woudn't be able to do it as the tumour needs to be under 2cm normally, but I'm puzzled as to why they say you are 1b2 if yours is only 1.5 cm... Perhaps there's some misunderstanding there-it's best to ask to be sure,in any case I wish you good luck and the best tip around here is as Tivoli says peppermint tea! I can honestly say that I didn't suffer from the gas too much, it was very mild, but maybe that's because my op was less serious-just a keyhole lymph node removal..
Hi Anna, thanks for your reply :)
im wondering whether he has said 1b2 as a worse case in case the mri shows it has gone deeper into tissue and is larger than can be seen just by examination?
i will definitely ask about trachelectomy if my staging is lower than anticipated but I'm not getting my hopes up too much!
i have EUA tomorrow which will hopefully confirm his suspicions that it hasn't spread and after that hopefully an mri next week. It's the waiting that's the hardest I think, am just trying to keep busy, but not too busy as he said over exertion might make my (currently constant) bleeding worse :(
Thanks again for your response
Good luck with your EUA today-fingers crossed for a good result, let us know how you get on!
Waiting is the worst, hang in there, soon you'll get the answers and the treatment plan..
EUA went ok, though I have been in all day having been told I was second on morning list didn't go in until 215pm!
The dr who did procedure went straight to another surgery so I don't know outcome have been told to expect a letter but think I'll ring my nurse on Monday anyway.
Mri booked for 15/12 and I'll then be seen in clinic on 22/12 for final treatment plan decision. I am booked in for hysterectomy on 6/1 and think that will be the final decision though need to see whether lymph nodes are affected first.
Thanks for asking how it went