Cervical cancer and pelvic exenteration surgery

Hi Elsa. I have a TPE May 2024. I now have 2stoma bags and had all my lymph nodes removed. I was in hdu the first couple of days and was in hospital for 2 weeks. It was tough at the beginning. I couldn’t stand straight or walk on my own as had no strength. I needed help when I got home to do everything. It takes a while to get your strength back. I’m still recovering from it . But it is accepting that the bags saved my life and the surgeons and nurses were fantastic. If you need to ask me anything I’m happy to answer. I found it hard to find someone who had the same operation. 

Hi again Elza 

We’ve spoken before about the surgery-not long until it happens now.

I have found very few people in the forum in  the 4 years I’ve been here who have had this surgery, so I completely understand how difficult it is to find others who have experience of it. Unfortunately, you may not get too many responses, but I’m happy to chat any time. 

I see Star10473 has already replied so that’s a good start! 

My friend Susan13 has also had exenteration surgery, although hers was for bowel cancer rather than cervical. The challenges are the same! Susan is in the USA, so there will be a time difference in responses.

I was in this position 5 years ago-this surgery was my only option to survive potentially long term so palliative chemo was not something I considered. 

Remember, you would not be offered this surgery unless your doctors thought there was a good chance of success so hold onto that if you can. The odds of his being curative are normally given at 50/50. My odds were even lower at 30/70 but I was desperate to get the chance and consider myself very lucky. I am almost 5 years out from this and I know others who are even longer past surgery. So there’s always hope. 

Only you can decide if you want to take the chance of going ahead with this, but I have never met anyone yet who has regretted it. including me.

We spoke before about the need to have some support at home when you are discharged, so have you made any progress in finding out more about the help you might get? 

Sarah xx

Sarah -I’m so thankful I found you and I not gonna drop surgery as it is my last chance of survival,I am just very surprised how tiny amount of people had this surgery - I tried FB groups -nothing,some responses that mum had it ,and that’s all and to be honest -you are the only one who had this type of surgery and only one who responded and I was able to talk to.

Thank you xx

Thank you -at least one more person who went through it .I will message you -your surgery is quite recent ,just last year and I don’t expect it to be easy ,but it is scary as hell,but I’m happy to hear that you are better now and recovering and cancer is gone- that is the most important thing.

Yes I’m thankful the cancer has gone. I know what your goin through. It’s scary. I was so frightened of it all. My worry was to how they were goin to keep me asleep on the operating table for 9 hours. You’ll get through it. I hope ever goes well which I’m sure it will. Stay positive 

Thank you - I absolutely don’t think what gonna happen under anesthesia,because I not gonna feel anything and if I gonna die on a table that would be the easiest part.

Scariest bit is to find out what gonna happen when I’ll wake up,pain,not being able to move- I had  urostomy surgery and it was painful so I can just imagine how much pain you have to go through when you loose so many organs.

Are you in UK?

Elza 

In my experience the pain was very well controlled after surgery and I had a pain pump to use which was in my hand when I woke up. I was very sleepy for 2 days in the high dependency unit so I wasn’t aware of very much. When I got to the ward, I could have oramorph when required if I asked, and apart from that was only given paracetamol.

Sarah xx

My surgeon pushing for morphine and I’ve been on it before for 6month and it made me so constipated that I stopped morphine and for past 4month tried to heal my damaged gut health- it’s ok now ,but just a thought that morphine gonna block me again and surgeon told that I can cancel surgery if I don’t want morphine sounds very strange.I haven’t been offered other painkillers which is kinder to bowels,only told that there gonna be some laxatives which didn’t help me at all.Do you still have a pain pump and where do they put it?

Oramorph is morphine and any kind of medication like this can cause constipation but is standard to be given after surgery. I had an epidural inserted before my general anaesthetic which is intended to give pain relief continuing when you wake up from surgery but mine wasn’t very successful and leaked out from my spine.

The pain pump is a dispenser of morphine in controlled doses. You cannot overdose on it. It is something I held in my hand while in the hospital and I had it for 2 days while in the high dependency unit. I never had it again after those 2 days. 

Obviously I had my rectum removed in my surgery and had a colostomy formed-it began to work after 7 days, so I had no constipation despite the morphine. The doctors checked me every day and asked if I had wind-you still get wind with a colostomy! When I said yes, they weren’t concerned and output started passing through into the bag after a week. I didn’t need any laxatives. 

Have I understood you correctly-your surgeon has said you can cancel the surgery if you don’t want to take morphine? Was there no discussion about any alternative type of pain relief? Are you reluctant to have morphine only because you experienced constipation while taking it before?

Sarah xx

I got constipated while I was taking morphine before my surgery. I was only on this when I’m the hdu and take. Off it when I was put on the ward. The pain management team came round and assessed me at what pain killers I needed and they worked for me.