Hi,
I’m new here, wish I wasn’t having to come here but I am trying to come to terms with my diagnosis and hope this community will make me feel less lonely.
Following a smear in November 24 with HPV positive result and abnormal cells in the birth canal I had a colposcopy and due to the changes being in my birth canal they offered LLETZ treatment on the same day December 24, which I went ahead with.
I was called back 4 weeks later to be told “it’s cancer”
I had a second LLETZ treatment on that day so they could take a further biopsy to “stage the cancer” January 25 (still pending results) I’ve also since received a copy of the letter they sent to my GP which states the following:
Endocervical adenocarcinoma CGIN FIGO 1a1 in all margins
I’m a little confused because I keep reading that people get sent for MRIs to check for any spread and to stage and yet I’ve not been told about this?
I had my regular cycle 1 week after the last LLETZ and it’s been hell, cramps, heavier than usual, back pain, bloating etc.
Ive also been given antibiotics for 1 week as I believe I have infection following LLETZ due to unpleasant odour.
I guess I’m asking if anyone has similar experience to me?
if anyone else has not had MRI? Or will this come after these results?
i feel like I should be preparing myself for the results and getting familiar with possible treatment plans / next steps but everything I read terrifies me.
appreciate any responses.
from a very lost woman right now!
Hi brummymummy and welcome to our group.
I can hear the panic and fear in your words so my first piece of advice would be to take a deep breath and relax! Reading letters copied to gps with no further explanation can really be unhelpful if you don’t understand what they mean.
FIGO is an international classification for gynaecology and your letter states your cancer is classified as “1a1” which is the lowest possible stage and absolutely tiny. It means it has gone no deeper than 3mm. For comparison and context, I had a tumour that measured 3.7 CM.
A scan would be unlikely to pick up anything as small as a stage 1a1 cancer, so you may not get an mri scan. It would also be highly unlikely to have spread as it’s been caught so early. The fact that it has been found in all margins indicates that the LLETZ hasn’t successfully removed all of the abnormal cells and this has been discovered when the tissue removed in the LLETZ was analysed. It can be common for periods to go a little haywire after a second LLETZ, but this should settle in time and the antibiotics should clear any infection.
However because of the location of the cancer, and the fact that is CGIN /adenocarcinoma which is higher up in the cervix you may have an mri scan just to make sure it is not even higher up.
I’d recommend not trying to research treatments and plans on the internet-as you’ve seen, it’s scaring you and it’s too early to let your thoughts rush ahead and make assumptions just yet.
When is your appointment to discuss your results? I hope it’s not long to wait, but please do not spend that time in a blind panic. Your cancer is at a very, very early stage and should be straightforward to deal with, which is a really positive thing, although I completely understand how scary the word cancer is to us all. Keep us posted with how you get on-my situation was very different to yours but I try to make sure I reply to all the new posts in the group in my role as Community Campion for the cervical group(basically that just means I am a volunteer for Macmillan, and I’ve been through cervical cancer myself.
Sarah xx
You effectively have your results already in the letter sent to your gp, but what’s needed now is the consultant to explain the next steps for you. You know from the letter you have a very early stage cancer, at stage 1a1 so try to focus on that.
It can be very easy to let intrusive thoughts come into your head so try and keep yourself busy and distracted if you can. I’ve learned over the years to try my best not to worry about things I can’t control, and not to worry in advance when I haven’t been told something for definite. Worry doesn’t help get you anywhere and takes up a lot of energy!
It’s never nice to get any cancer diagnosis, but early detection is the key to getting it dealt with successfully. Post in the group any time you want if you think of any questions, need a bit of reassurance ofr just to have a bit of company and someone to listen. I hope you won’t feel so lonely now you’ve found us!
Sarah xx
