Important - Ask for the Interlace study treatment

Hi Tanya

I was offered this trial 7 years ago when I was originally diagnosed and declined the opportunity because it wasn’t explained properly to me.  I could kick myself now but there’s no point looking backwards in my case. It could have made a huge difference to what I subsequently had to go through, which I wouldn’t wish on anyone. Thank you for highlighting this to those who still have this opportunity.

Sarah xx

I’m so sorry this happened to you Sarah. I guess as it was a relatively new trial at the time they weren’t pushing it as the results weren’t known then. Even so, I can imagine it could have saved you from the ordeal you’ve been through and that must be very tough to know. And, at the time, you’re reeling from the diagnosis and can’t think straight anyway xxx

I remember my consultant just gave me a leaflet and didn’t go through it with me. I’d just been diagnosed, so my head was in a spin and I knew nothing about what treatment would really mean, with or without the trial.

As you say, the results of the Interlace trial were not known then, but his words stuck with me. He said I’d need to be altruistic to do the trial as it was about learning things for the benefit of others coming after me, and not me. Of course we know now that the trial was a success, and could have helped me.

I decided I just wanted to get on as soon as possible with the standard chemoradiation but I don’t think he should have framed it to me in the way he did-he was quite dismissive I felt.

However, I’m very happy to read that others have been helped and done well. A different consultant might have explained it all to me and things could have been different for me overall, but it’s just something I’ve come to terms with.

Sarah xx

I agree whole heartedly Sarah, it’s a bit of pot luck as outcomes somewhat depend who you get and its natural that some people have more of an aptitude for some things than others do and it’s relevant to everything in life.

If I may share my experience of this, abnormal cells were missed from a smear test in 2019 (nhs admitted this) then a private gynecologist in 2024 missed my cancer during a LETZ procedure and histology report (he has admitted this), then a nurse at my surgery missed a 5cm tumour during a follow up smear test (denied by her but it was there!). My experience is nowhere near as bad as yours has been but I can understand a little of how you feel.

The nurse is the one who nearly cost me my life as when I tried to book a smear test for 6 months after the LETZ, she told me the consultant was wrong and I don’t need one for a year. I am so grateful that someone, somewhere must have realised and sent me an appointment at the 8 month point. If I had waiting a year as advised by the nurse, my outcome would have been very different. I don’t feel any anger about the series of events but I do feel aggrieved that the nurse, who is essentially incompetent, is allowed to deny all knowledge and no comeback. Sorry to go on about myself! It’s quite cathartic to share.

I hope you’re doing ok Sarah x

Oh gosh, Tanya, that’s a catalogue of failings right there, but it’s good to share, and get it all out I think! 

It’s really scary to think about the impact of these errors, potentially, on our lives. I speak up much more now than I used to about anything I’m unhappy or unsure about, and have a new gp who I trust and is very thorough. He has helped correct my medical records which have so much missing. 

My previous gp was someone I never even met because I couldn’t get an appointment, and 2 years ago he diagnosed me over the phone with a urine infection. If he’d seen me in person he might have noticed my jaundice! I was very lucky that my partner decided to come home from work at lunchtime to see how I was as I’d been so ill, and phoned an ambulance. 

When I got to hospital and had a scan it was clear there was a problem with my bile duct and I was transferred to a bigger hospital. They discovered that a blockage in my duct had caused an infection so serious it was life threatening and I was pumped full of massive doses of antibiotics. I was there for 9 days and my gp practice called me while I was there and still insisted I only had a urine infection because that’s what the gp had said! 

It’s hard losing faith in those who are supposed to help us, and feeling unable to trust what we’re being told. I should have complained to the practice manager but even that is difficult as they don’t provide her email address and you’ve got to write a latter and send it in! 

I’m doing ok thank you-yesterday was the 7th anniversary of my original diagnosis, and on Monday I’m meeting a surgeon to discuss a hip replacement so I’ve still get things going on!

Sarah xx

This thread has been of great interest to me. I was diagnosed with stage 3C1 cervical cancer in January this year. I was treated with 2 doses of Paclitaxel and carboplatin 3weeks apart and then 5 weeks radiotherapy and cisplatin. I also had 4  brachytherapy sessions in the last 2 weeks of treatment. I was surprised how well I tolerated treatment, it was not without problems but it was all manageable. Following the latest scan I am cancer free. 

I'm posting this because I appreciate everyone involved in research and I think I am an example of how the study has defined treatment and outcomes are becoming more positive. 

That’s excellent news Eileen41 and I’m glad you’ve had such a positive experience. It will give encouragement to others starting out on treatment I’m sure.

Sarah xx

Hi I was diagnosed in late nov 2024 . On my first hospital visit with the oncologist I was told what was going to happen and the process of how it works etc . During that consultation the oncologist told me about the new regime that he advised me to have which was the combined chemo etc he also said that if I had been diagnosed 3 months earlier this would not of been available to me . I am immensely grateful that I had the opportunity to have this new regime and also hope that everybody who now gets diagnosed gets the same opportunity to have this , or if not please ask for it . I went on to then have the chemo radiation followed by brachytherapy. I am so pleased to say that I have had my first mri and have the allclear so fingers xed it stays away . To everyone who is going through this also diagnosed I hope you all get the best of care . X 

I have just finished the interlace 6 week treatment and about to start the chemoradiotherapy next week.. 

My consultant didn’t offer it as a choice or at least it didn’t come across that way she described it was like standard treatment, I asked about it because in my own research I found some people did have it and some people didn’t, she pulled up the cancer research site with the trial and all the figures etc and said it has the best results of cancer not reoccurring in the future. 
I’m 37 so for me there was no way i was going to decline even if it meant loosing my hair… that was the only negative I had to personally battle and my consultant said cold cap wasn’t an option which I was devastated about… but still even though it was really hard it wasn’t going to change my decision to have the interlace treatment.