Hi everyone, I’m really scared and I’m wondering if anyone else has been in a similar boat and can reassure me or just share there thoughts with me.
Back when I was 25 (5 years ago) I had HPV with cin2 abnormalities which was easily treated with the lettz procedure. I got my results back 2 weeks later by post to tell me all was good and I then went regular for check ups.
Last year 2022 I had my routine smear, I had abnormalities again and had a colposcopy which showed I had cin1 with HPV I was told these changes could go on there own and to come back in a year. February 2023 just after loosing my mum to cervical cancer unexpectedly in December I was told after my colposcopy that I now have cin3 with HPV meaning my cells had changes dramatically in a year.
I had another colposcopy where I thought I would be treated. When I spoke to my gynaecologist we had a discussion about how quick my cells changed in a year and he wasn’t too happy about this, we also discussed my mum having carcinoma of the cervix, this was undiagnosed and we had no idea mum had cancer until her autopsy results. He mentioned about possibly being genetic as my Nan also had cervical cancer and following my problems he said to me “ if after today we remove your abnormal cells but they come back a 3rd time we talk with you regarding a hysterectomy”. Then followed this by saying pop on the bed and let’s remove them in a nut shell. When he was looking about to perform the lettz, he stopped and said let’s have a chat. He sat me down and said that it’s too complicated to do in clinic and I need to be put to sleep.
I was then referred for Surgery a couple of weeks later. When I had my surgery I asked the surgeon how long it would take, I was down for a extra 20 minutes longer than was told to me which made me think it was worse than what they thought. After my surgery I asked if she was able to get everything, but by her response I wasn’t very confident.
It’s been 3 weeks since my surgery, 2 days ago I received a appointment been made through my medical record app. It was with a gyno oncologist for my results. I freaked out and called the clinic. They put me on the phone with my gyno who performed my surgery, she’s booked me in next Friday for a chat, she wouldn’t tell me anything over the phone. She said I will need possible further surgery but that’s all she explained.
Why would I be having an appointment with a oncologist? My mind has jumped straight into thinking the worst due to loosing my mum recently to the same disease. I am so worried.
I googled the doctor and he was one of the top gynaecologist oncology surgeons in my hospital and specialists in cancer and hysterectomy’s etc.
has anyone had similar before?
I’m half expecting them too say I need to have a hysterectomy but I don’t know if I’m just assuming the worst.
Hi @bethmarieexo . Im so sorry to hear you’re going through this, and im so sorry to hear about the recent loss of your Mum. I cant begin to imagine how tough that must be, but please know you’re not alone and there are tonnes of women here who can and will support you.
Im not a doctor but i would imagine that if youve got an appointment with an oncologist then perhaps you just have changes or cells which need more detailed removal, or perhaps the oncologist just wants to know more about your family history. It could be any number of things so try not to let your mind jump to the worst case scenario (although i know that is easier said that done!). Is your appointment tomorrow or a week on Friday? Hopefully it is tomorrow and you can get more of the answers you need. And if it was the scenario in which you needed a hysterectomy, there is so much they can do for fertility preservation and things and tonnes of women on here have had one with success. I know it is scary but keep talking to people and try to deal only with the facts that you have been given. Last bit of advice, stay off google! Here if you want to chat x
Thankyou so much for your reply, it’s really helped calm me down. I was jumping to all the worse cases and haven’t been able to sleep properly since.
Do you know if your allowed to request for a hysterectomy? I’ve had problems since I was 25 and because of what happened to my mum and what’s happening to me recently I can’t stand the anxiety. I’ve had miscarriages since my last lettz 5 years ago and I don’t want to keep putting my self through that heartbreak, I have a 11 year old so I’m very fortunate to have experienced a pregnancy, I don’t know if that’s something I can request?.
It’s next Friday 21st, I will write in here with my results x
No need to thank me, i know what it is like to be in the unknown with all of this. For context, i was diagnosed with stage 3c1 in January, started treatment on feb, finished in March and am now waiting on results in September. I know the anxiety can be agonising. I called the MacMillan helpline and Jo’s helpline and both were incredibly supportive, both offer free phone services if you want to talk to someone like that. They were great at calming me down when i was having severe anxiety attacks. I promise, youre not alone. Remember to concentrate on the facts of where you are now and try not to spiral.
Regarding the hysterectomy there are some situations in which they arent a good idea, but im sure your oncologist will chat it all through with you. One thing ive really learned is that every body is different, what is right for one person might not be for another. Either way, make sure you ask the questions you want answers to when you see your oncologist. I would recommend taking someone with you too, in case they ask questions about your family history which you might need help with, or incase you’re bombarded with information and need help remembering it all!
Lastly, for anxiety i find some guided meditations really help, along with deep breathing. I also take CBD which im sure has calmed it a lot for me. Big deep breaths, you’ve raised an 11 year old so you’re clearly a strong woman - you’ve got this. DM if you want to chat that way xxx
