Total Pelvic Exenturation

Hi ,

Big welcome to the forum from me . Glad you joined us .

I am so sorry to hear your husband has more surgery to face . I can totally understand your fears . I am going to try and tag in . I am sure he has written about the same surgery and could give you a more informed picture of what to expect . 

Hopefully he is around this weekend and able to help .

take care,

Court 

Hello Angel18,

As Court mentioned, I had a TPE last October. It was a big shock to be told that I needed to have it. The reason I needed it was because there was not a big enough surgical margin. My consultant said he could do just the basic tumour removal, but was of the opinion that it would be a mistake and that the best way to minimise the possibility of further spread would be to have the TPE. I chose his advice and had the TPE so only one operation and also no need for further chemotherapy. 

Yes it is a big operation (10-15 hours) and it is is in some ways life changing, but actually in reality it was not such a big deal. 9 months down the line I am quite fit and healthy and most people do not have a clue that I have had cancer and such radical surgery. Many who have not seen me for several months are amazed at how healthy I look.

Having two stomas is not really such a big deal. Your husband is already used to one ( I also had a temporary colostomy before my TPE surgery) so he will soon get used to having another for urine output. Plugging in a night bag for the urostomy is actually not such a bad thing, as it means I get to sleep through the night without having to wake up in the middle of the night busting for a wee!! 

It does take up to a year to recover from the surgery, but after 6 months I started to feel fairly good. I still have to pace myself, but I do have a tendency to try and do too much too quickly.

Please feel free to message me directly for more information and what to expect.

All in all it was super outcome for me and it has allowed me to once again lead an almost normal lifestyle and minimise the spectre of further cancer issues. I count myself very fortunate that such life saving surgery was available to me and how it has given me a new lease of life. I feel happy and positive and will always be grateful to the marvellous surgical team that made it all possible.

I do hope that you will both see it as a life saver and the opportunity for you both to have many happy years of life ahead of you.

Best regards and wishes

GM.

Thank you for your help and kind words. Much appreciated

Your treatment sounds almost identical to my husbands and the reason he is having the TPE is due to an R1 margin following his last operation, the cancer left is residual tumour. Very reassuring to hear of your good recovery and positive outcome, to hear this from someone who has experienced this first hand has certainly lifted our spirits. Thank you for kindly offering us the opportunity to directly message you if we have questions, we might take you up on this! I’m delighted to hear you are doing so well and enjoying life. I hope we can achieve the same.

Hi Angel 

My Dad had a TPE in September last year. It is a massive operation and is life changing but a year on and my Dad is doing great, he did have to have 6 months of chemo after the operation also which he sailed through really just a few issues and was playing golf throughout it all. this op Is ment  to be a life saving operation and not everyone can have it done so in a way he’s lucky he can. I hope it all goes ok for your husband. When is he due to have it done? 

This site is so good for help and advice as there is always someone that’s been through it. Take care Danni x 

Hi Danni, thank you for your response and great to hear how well your Dad is doing. My husband Mark had his operation on Saturday. He’s doing really well but as it’s only been a few days he’s not in a good place at this moment in time, physically or emotionally. It is to be expected and we are fast realising the recovery from this will be slower than his previous operations. I am doing my best to lift his spirits but reading your Dads story will hopefully encourage him along the way.  He’s already fretting about possible follow up chemo, which regime was your Dad on? Mark had 4 cycles of Capox prior to the op, he was scheduled for 8 so there is a strong possibility he will have the remaining 4 cycles after. He did not cope well with his, many symptoms including severe diarrhoea, he’s already anxious about dealing with this whilst adjusting to a new colostomy. Having to remind him one step at a time.

Hi Angel 

I have sent you a friend request as it won’t let me message you privately. Was Just going to tell you how my Dad was after the op. Ahh so he’s had his op already least it’s all over and done with now and now the recovering can start. 

I totally get where your coming from as it took my Dad a while to get through it and deal with what happened which is all normal. Mark is bound to feel down upset and depressed at times but he will get through it and he will be able to go back to living a normal life. My Dad was playing golf 2 days before his op and back playing again around 3/4 months after. 

They say it takes around a year to fully recover from a TPE. Hope Marks recovery goes well. Just message me if you want to ask anything. 

My Dad had the tablet form chemo (can’t remember the name of it) and 6 weeks of radiotherapy before the op then he had 6 months of folfox where he had to have the pump. 

Hi Angel, Thanks for letting us know that Mark has had the TPE now. Yes the first 2-3 weeks he will feel very rough. As my Urologist surgeon said to me..."Your body is running the equivalent of a full marathon every single day as it repairs itself from the surgery". So do expect him to feel utterly exhausted for some time ( i.e. several weeks/months!). Day by day it gets better and he will feel stronger and fitter. I can't comment on the follow on chemotherapy as I did not need it. 

Watch out for post operative infections and go straight back to your surgical team (NOT GP or A&E!) if he gets cold sweats and/or looses his appetite when he is home recovering. 

I just had my CT scan results and there are no abnormalities to report although my body is still repairing itself from the surgery. 

Wishing you both the best outcome.

GM

hi.. my kev had a TPE last november.. any questions please feel free to ask.. i hope things go well for you x

Hi Mandy

Thanks for the message. Mark has been home two days now post operation, he’s doing great albeit weak & tired. We’ve had a few issues with his new urostomy, lots of leaks so have been to see the stoma nurse today for help. He’s finding it all overwhelming and struggling emotionally but it’s only been 2.5 weeks since the op. Did Kev have numb legs after his operation? Mark can’t feel his thighs? It’s not stopping him from doing anything. 

Regards

Louise