Stage 4a cervical cancer

Hi Angel86 and welcome to our group.

I’m really sorry to read of your diagnosis and how quickly things have progressed for you-it’s  a lot to deal with both mentally and physically. I hope I might be able to help by sharing my experience.

I had stage 2b cervical cancer and went through chemo and radiation, with a result of NED. However I had a recurrence a few months later in the same place as my original tumour. My surgeon tried to perform a salvage hysterectomy, but my insides were too damaged by radiation and stuck together so it couldn’t be done safely. 

I then had a total pelvic exenteration, and to be honest I wish I had gone for this first instead of trying the hysterectomy. I had to wait for my exenteration surgery as I was still healing from the attempted hysterectomy, and wasn’t in the best place physically for the exenteration. 

It’s a very personal decision to have this surgery as it’s so massive, and I do know of ladies who have declined it, but I wanted to give myself every possible chance so I wanted to go ahead. I did have the total exenteration, so have a permanent colostomy and urostomy, although I was told by my colorectal surgeon that he could save my bowel as there was no cancer there, only radiation damage. I asked him to take my bowel anyway-I thought it would increase my chance of successful surgery and since I was having my bladder removed anyone I thought I’d might as well have 2 bags! 

I’ve never regretted my surgery and I had it done 4.5 years ago. Yes, the recovery is very tough, I can’t deny that, but I have not had any issues related to this since then and live a very normal life. I got used to the bags quickly enough, although it was hard at first to deal with leaks etc while my stomas healed. Now they are second nature to deal with and change.

I wear the same clothes as I did before and travel abroad often-4 times this year-so I don’t let my stomas rule my life! 

If I hadn’t had my surgery, I could have chosen to have chemotherapy, but that would have been palliative as when my cancer recurred it progressed very quickly. 

I’m happy to answer any of your questions if I can, so please feel free to ask anything you need to. 

Sarah xx

Hi. How are you getting on? I'm currently stage 4a. Just finished chemo and am due to start radiotherapy and chemo together in early December. Then brachy. What stage where you initially before the recurrence? Also, how did you know it had come back, from a scan? X

Hi DebDebW 

I will tag Angel86 in the hope that she will see your post as I think your question is meant for her? Sorry, I wasn’t sure who your question was directed to.

She hasn’t come back to make any posts since her original post, but hopefully might see your post and reply.

Sarah xx

Hi I’ve had a reoccurring cervical cancer begin of this year. Had a total pelvic exentaration in may 2024 and have 2 stoma bags. After 6 months I am still recovering and trying to deal with it mentally. You will get there. It’s scary but at the end of the day they saved my life 

Hi I have had a pelvic exentaration may 2024. I have not met anyone that has had this procedure and I’m happy to share my experience with mine 

I had all this treatment 22 years ago and this year it reoccurred and had to have a pelvic exentaration. 

I have had a pelvic exentaration may 2024. It is tough physically and mentally 

. 

Yes I’ve had a pelvic exentaration may 2024. Still recovering if you have any questions I’m happy to talk about it. It’s hard to find people that have had this procedure 

Hi 

I have just been diagnosed with stage 4a cervical cancer. I been told by a consultant but iv not spoke with an oncologist doctor yet, everything has been relayed from nurses. I have a large mass that is sitting close to my rectum and bladder but not yet invaded. They want me to have a stoma fitted on Wednesday 27th nov to protect me from chemo, but iv not even been given my results fully yet or had any official conversation about treatment with a doctor, that’s going to happen a week after my colostomy. They have just mentioned chemo. I just wanted to know if you were advised to have a stoma fitted? 

Thank you 

sorry to jump in post. Hope all your treatments go well 

Hi Star10473 

As I’ve said I’ve had this surgery and have met several ladies for lunch in my area who have had it. I also run a support group online so had met many others from different countries who have been through it. It’s not common, but you can find others to share advice and support and I’m also very happy to share my own experience.

Sarah xx