Hi,
I was diagnosed with stage 3c1 cervical cancer in June 2023. I had chemo, radiotherapy and brachytherapy with NED confirmed following an MRI in January 2024. I was given another MRI which showed I was still NED in may 2024.
It was then agreed that my follow up would be an MRI every 6 months with telephone appointments every 4 months. This was to continue for 3 years before I'd be discharged from services.
However I've now been told by my oncologist that I won't have any more MRI scans and my follow up will now be 6 monthly telephone appointments. Apparently new research shows that MRI in cervical cancer follow up is unhelpful and that those that had a complete response to treatment at the 4 months stage don't require mri scans or internals to monitor for recurrance. Instead I should remain vigilant and report any changes which would then be investigated.
I've been told that chances of recurrance are small in those that have had a complete response at their 4 month scan.
I just feel a bit uneasy with this. I didn't have symptoms until a few months prior to my diagnosis and I worry I wouldn't have symptoms of a recurrance until it's too late. But I don't want to be a nuisance and have a drama needlessly. They have assured me that symptoms are much more likely if a recurrance was to occur.
Can anyone shed any light on what their experiences are. This is apparently based on new research.
Hi CarrieG and welcome to the group.
I can understand why you are concerned-I think we all think that scans will form part of our follow up, and we get concerned when we find out that’s not the case.
I can only go on my own experience, where I was told that follow up mri scans would only happen if I displayed any symptoms of recurrence. I received a NED result from my 3 month post treatment mri scan, and told I’d had a complete response to treatment, and was then put on 3 monthly appointments which would consist of a chat and visual internal examination (I was stage 2b and had chemoradiation). I was told that mri scans could only pick up something which was large enough to be seen on the scanner, and that mri scans could not pick up individual cells.
I had 2 follow up appointments and on my 3rd, so around 9 months after treatment ended, my consultant saw something very small on my cervix and wasn’t sure if it were just scar tissue or radiation damage or something else. I had NO symptoms such as pain or bleeding, but he sent me for an mri. I felt absolutely fine.
This showed something small-it measured 11mm and was big enough to be picked up on an mri, but he still wasn’t certain this was cancer. I underwent a biopsy under general anaesthetic, which confirmed the cancer was back in the same place.
I was very unlucky not to have any symptoms of recurrence and for it to be cancer again, but I suppose I am proof that it can happen. However if it had been smaller, the mri scan would not have picked it up so unless symptoms started I would have thought I were still clear. I did then start to have some bleeding using the dilators and then started to have pelvic pain again.
So, I do understand your concern-not everyone has symptoms, and you depend on a very vigilant consultant picking up and changes on the internal exam. I’d be concerned about going onto phone appointments only, personally. I would never have discovered my cancer was back if I’d just had a phone appointment because I felt very well.
I think I’d be asking if you can have face to face appointments rather than a call, especially as you are not too far out from your treatment. Personally I don’t think that’s an unreasonable request, if scans are not possible so I’d have a chat with your consultant an£ see if that’s an option.
Sarah xx
