Hi, I’m a newbie on here, and would really welcome some advice! 2 weeks ago I was called in for a post-smear test appointment. I was told the smear showed high risk hpv and cgin cells, and the consultant was clear that this could be serious. I wasn’t expecting it but he carried out a biopsy using LLEZ, and the nurses showed me what had been taken, which was the size of a very large grape. Less than 2 weeks on I’ve been asked to come back for a ‘catch up’, and they suggested that I bring someone with me. All they would say is that he might want to talk about mri scans, but at the first appointment I was told that if I was asked to come back it would mean bad news. I’m absolutely devastated, I had no signs of anything wrong and this has all happened so quickly. Half the time I’m numb and in shock, the other half I’m completely terrified. Has anyone else experienced this, and am I right to suspect this sounds pretty bad? It’s the speed, the fact I’ve been called back, and the fact they said bring someone with me that is really setting off alarm bells. Any advice would be great, thank you!
I don’t know if I’m much help but I hope you are ok. As scary as your story sounds, you have to remain positive. Whatever it is, if anything, at least they’ve found it now especially as you’ve had no symptoms and whatever it is they can treat it and you will be ok.
I got the fright of my life in December 2020 when I was diagnosed with CIN 3. Like you I had no symptoms and I was petrified and shocked. You think when you’ve no symptoms everything is fine but no. I had to convince myself that I was lucky that these abnormal cells were found as I had no symptoms and I had to be grateful they were found on time. I’m currently waiting on my results six months post treatment.
You’ve already gotten through biopsies and LLetz so you can get through whatever is next. It could be nothing too. Fingers crossed for you.
Hi Plumm3. Sending you a big hug. I know how hard it is for our minds to not take us to the worst case scenario but it is possible that this is actually good news. What I mean by that is that it is very positive that you were checked out and followed through with tests and procedures each of us dread. The timeliness is also a good thing. You’ve got a team that are clearly working quickly to treat you effectively. My understanding is that the MRI or PET scans can be used following surgeries/biopsies to confirm whether or not the spread is limited etc. I can say that for my mom the scan was just to confirm that their surgical margins were correct and that the cancer had not spread beyond the tissues that had been removed.
Is terrifying and I am amidst waiting for next steps myself and want you to know that you are not alone, and as scary as it all is, you are a brave woman for going to get your paps done (so many don’t) in spite of having no symptoms. You are also bravely tending to anything that needs to be tended to in order to ensure that this is treated effectively. I admire your strength and know you can do this! Don’t be afraid to call the doctor’s office and ask for them to explain what they are looking for in the MRI or any other questions. You deserve to have the information needed so that you can understand why tests/procedures are being done, but also to provide you with confidence in your care team that they are doing the right things for you at the right time!
If you need any additional support, don’t hesitate to reach out. I’m happy to connect and am sending you tons of positive energy, strength, hugs and courage!!
Thank you both for your lovely replies. This forum has already been a big source of support and information, I’m so lucky to have brilliant family and friends but ladies on here are the only ones who really know what this is like! I’ve tried to be strong for more than two weeks since the first phone call, but yesterday the panic and depression really hit. As everyone says, it’s the not knowing that’s so very hard, and it’s easy to think worst case scenario. They’ve just phoned me again to confirm that I’ll be attending the appointment, so it’s really difficult not to be thinking things are quite serious. Thanks for your positivity, it’s helped me feel stronger again today!
I have recently been told I have CGIN changes and CIN 3 too following a hysteroscopy and Lletz. The biopsy confirmed it’s still precancerous but they are more careful with CGIN and I am discussing a hysterectomy with my consultant tomorrow. I’m so sorry you are so worried, the unknown and waiting is truly torturous. I can completely relate. Before my biopsy results the consultant couldn’t give me the reassurance I was looking for…. I basically wanted him to tell me it definitely wasn’t cancer and he couldn’t. What he did say though was that even if it was, it was very treatable. Easier said than done but try and stay positive and know that you’re stronger than you think. Whatever it is has been found and will be dealt with. I wish you all the best for your appointment. xx
Thank you! I’m dreading it, but also want to get it out of the way as at least I’ll know more about what’s going on. Good luck with your appointment too, it’s a hugely life changing experience so I hope all goes well for you. Thanks again for your wise words, they are much appreciated!