Hi all
I have already posted in another thread, before spotting this one 
. So I want to say a big hello, and outline my current sitch.
I am 39 years old, married and have 2 children (8 and 18 yr old). Back in 2016 I had my first ever smear test (no excuse for waiting other than embarrassment). I had tested positive for HPV, and had a punch biopsy via a colposcopy which came back as CIN 3.
Shortly afterwards I had a LLETZ biopsy, and the results came back as CIN1 and no further action was taken.
I won’t lie, I found the experience very difficult emotionally, and as a consequence buried my head in the sand with regards to follow up PAP smears.
Then earlier this year, I would sometimes bleed after sexual intercourse. I had a bad feeling, and booked an appointment with my GP. She saw 2 lumps on my cervix and referred me via the 2 week suspected cancer pathway. The consultant performed a colposcopy and confirmed that they were not lumps, but were patches of glandular cells, which had probably grown back after the first LLETZ in 2016.
He took punch biopsies and I went home quite happy. Then a week later, I receive a letter stating that the biopsies have come back with CIN 3 again. It was my understanding that in the majority of cases CIN does not come back after a LLETZ procedure so I was really upset.
The following week, my consultant removed 10mm of my cervix. The local anaesthetic did not work very well and I was in pain during the procedure. Then, for whatever reason he could not stop the bleeding. I fainted in the chair and had to be packed, catheterised and admitted to a ward. At this point, I’ve already told l myself that whatever the outcome I will be having a hysterectomy as there is no way I can go through this again.
Roll on a couple of weeks, and the bleeding has stopped. I had an MRI… which was then followed by a PET scan which I can only assume is due to something seen on the MRI. It’s a complete guessing game, with no response from the Colpscopy unit when I have called about me requiring a PET scan. The lack of communication has been such torture. I understand that the hospital probably wants to wait for the results… but tell me that! Set me some expectations etc…
I now have an appointment with Gynaecologist Oncology on the 7th August. I’m scared stiff, but I’m ready to fight whatever the outcome. Apologies for the essay. I found it very therapeutic writing this down.
Hi Meme85
I did reply on your other post about your experience, which really wasn’t a good one.
It’s standard to get appointments sent out like this without additional information. The colposcopy unit won’t necessarily have any more information you could be provided with at this stage so you have an appointment made for you. Also standard that it’s with gynaecological oncology as colposcopy clinics are under this specialism.
At the moment, you’re right-it’s just a guessing game as you don’t know what your results from scans are, and I know that’s difficult for all of us to be waiting like this. You have said you’ll be having a hysterectomy no matter what, but that would be a decision for your consultant to make and it’s not a foregone conclusion that’s what will happen.
If you get a cancer diagnosis, and I’m not saying you will, then a hysterectomy is only possible for early stage cervical cancer so it would depend on the staging of any cancer. Another point is that if you were able to have a hysterectomy, then it does not remove the hpv virus, so you would still need to have regular check ups and a different type of smear called a vault smear. Even after a hysterectomy it is possible for abnormal cells to return as you would still have the hpv virus in your system.
However, all of this is jumping the gun as you don’t have a diagnosis yet, but I can understand that some people do like to consider every possible outcome. It’s very natural to be scared about all of this but your appointment is quick, and if the results from your scans are back in time for this appointment, this is actually also very quick.
I completely understand that you will be worrying about this until you have your appointment, but I’d just say try not to second guess things for now-it can make the anxiety worse for you. The results could come back that they did not achieve clear margins from the LLETZ and you need some further treatment, meaning that not all the abnormal cells have been removed. That would still not be a cancer diagnosis. Keep us posted on how you get on and we’ll be here in the group to help support you through this.
Sarah xx
