Full pelvic excenteration

Hi and a warm welcome to the board from me. I can totally understand how worried you both must feel but hopefully we’ll be able to help you through this. I’m going to tag in a couple of people who have been through this or have family who have been through this and hopefully they’ll see your message and offer you some reassurance. is this what your dad had? can you offer any advice?

I’ve just realised it’s your operation today so wishing you all the very best.

If you click on the names of the people I’ve mentioned you can see their profile page which may show their back story and also if you click on latest activity on the left it will show their previous posts. 

Hope this helps - you could also type ‘exenteration’ in the search field at the top of the page and it will bring up previous posts - I think that’s how it’s spelt!

Take care

Karen x

Hi Cara1

First of all I would like to welcome you to the forum, we're a vey friendly and helpful group.

I am so sorry to hear about your husband and can fully understand how the prospect of such a big operations scares you both.

As you both feel uncertain as to whether your husband has made the right decision regarding this surgery, I would suggest that you think about getting a second opinion.

It is a very difficult time for cancer patients and their carers with the added worry of Covid19, as most of the face to face support is unavailable at the moment, but do get in touch with your husband's Cancer Specialist Nurse, and the Macmillan helpline on          0808 808 00 00 (available 7 days a week 8:00am to 8:00pm) which offers emotional support  as well as help and advice on all cancer related matters.   Biowel Cancer UK also have an excellent website at www.bowelcanceruk.org.uk and their helpline is available from 9:00am to 8:00 pm Mon to Fri on 0808 808 00 00.

It is also very important that you look after yourself too, as you need to be strong to look after and support your husband.

Take care,

VickiLynne

Hi Cara, 

I had the same procedure carried out in 2018. Yes it came as a shock to be told that was my best chance for survival. Well 18 months later I am free of cancer and on the whole fit and healthy. I had a couple of post op infections but both were successfully treated with antibiotics.

My decision was based on maximising life expectancy and hopefully avoiding having months/years of chemo.

I remain convinced it was the best option for me and count myself very fortunate to be offered the surgery by a very well respected and capable consultant. 

Hello guitarman lovely to hear from you and thank you for your reply. I think deep down I know it’s the right decision I just fear any complications after the op, but I guess these feelings are pretty natural. 

Its great to hear that it has been successful for you and I hope And pray you get stronger and stronger by the day. 

I guess the one thing this journey has taught me is that you just have to make a decision and then just go with it.
I’ve done as much research as possible  and know that this is the best chance my husband has. I have faith so I will leave the rest to the powers above. 

Thank you for the much needed uplift

Hi Karen,

obviously I’m very aware that many people are going through testing time, some similar and some worse but I’ve never actually reached out.
just knowing that we’re not alone in this journey is a comfort thank you.

thank you

cara1 x 

Hi vickilynne, thank you for all the info. I think I’m just having last minute jitters and will probably be like this till after the op!! I will deffo look up the other information and reach out much more.

yes the covid situation just further complicates things and we can’t be supported by family or friends the way we would have been- not before, during or after but again that just another challenge we have to overcome. X

Hello Cara1,

I had never heard of the operation before. My first consultant, decided to throw in the towel after the seeing that the 5 week chemo/rad hadn't worked as anticipated and therefore referred me to the specialist in the region who had many years of experience dealing with complex cases like my own. When I met him, he just laid out his findings and basically said to me, that I had two surgical choices. 1) proceed with the originally planned APR operation or 2) go belt and and braces and take out the prostate and bladder as well, as the prostate had less than 1mm surgical margin. In his opinion, he had performed option 1 for several patients with poor surgical margins like mine who rejected option 2 and just about every one of them he ended up seeing again 18-24 months later with reoccurrences/secondaries.

A well known newsreader who suffered from rectal cancer, and went down the minimal surgery/stoma reversal route at the same time was given a 10% chance or living 5 years after the operation. He is still alive but has had to have several chemotherapy sessions to keep him alive. My surgeon informed me after having the surgery and the histology results, that my life expectancy survival rate was 62% to live another 5 years. Given that I am 60 years old, I think that is quite good considering many men die in their 60's from other causes.

There are downsides of course. The main ones being, needing to have two stoma bags for life and degraded or totally degraded man functions which obviously will affect both of you.

There are other things in life though and plenty of new things to learn and do. I started to play guitar again at the age of 50 and have become very capable. Since the operation I have built a substantial timber framed garden room, remodelled the kitchen, decorated the house throughout, landscaped parts of the garden and recorded many blues and rock guitar tracks. 

So both of you will need a positive mental attitude, and hopefully view it as a opportunity to continue being together for many years to come and learn new skills and experiences.

It is a big tough operation and obviously has risks. Make sure your surgeon and his team have a good track record with regards to performing the operation. He will feel like a truck has hit him for several weeks after the operation, but he should improve day by day, week by week, month by month. In 12 months time he should feel almost normal again if things all go to plan and he is determined to get back to fitness.

Contact me directly if you need any further info on my experiences and keep me informed on progress.

All the best

Guitarman.

Hi Cara 

welcome to the forum, there are so many people on here that are so good and full of great advice. 

My Dad had a full TPE September 2018. He had radiotherapy and chemo first to shrink the tumour in his bowel as much as possible then told him his best option is to have the total pelvic exenteration.

My Dad was pretty shocked as he was only 68 and very active and played golf 3/4 times a week so he wasn’t happy but he knew he had to as it was his best option and hopefully get rid of the cancer.
After his op it was tough and as guitar man said it’s like being hit by a bus, it was hard to see my Dad like that, but it does it get better you see improvements everyday day and they get stronger but yes they say up to 12 months before your fully back to your new normal. 
My Dad was back to his golf about 5 months after op and is still playing his golf now, we go on holidays and you can still live an active life and knowone would know you have 2 bags as they are his away. 
Don’t get me wrong there has been problems with the bags leaks and some blockages which aren’t nice but you do learn to deal with them. 
I know it’s such a worrying time but am sure your husband will be fine. If you need any more help just ask.
Thanks Danni  

Hi Danni,

thank you for your reply and encouragement, it’s good to hear your dad is managing well. 

you can imagine with my husband being only 45 it’s hit him hard. But as with everything you have to turn it on it’s head and I guess the fact that he’s so young means he is physically in a better place to deal with such an extensive op.

We may not be at the end of this journey but everyday is not a day closer to the op but a day closer to my husband getting rid of this tumour and closer to being cancer free

thank you

cara x

Thank you guitarman, your advice has been both helpful and uplifting.

I will contact you personally if that’s ok.

cara x