My mum was, what seemed like all of a sudden, diagnosed with Adenocarcinoma of the rectum T4N1EMVI+ve in June 2025. We're coming up to a year now and awaiting her operation for a total pelvic exenteration.
Her treatment started with 5 weeks of Radiotherapy, followed by several rounds of Chemotherapy, unfortunately the tumour hadn't shrunk to the size they had hoped and her option for a more standard form of surgery fell through.
The good news is that the Chemotherapy removed the cancer from local lymph nodes, the not so great news is that the options for surgery became a lot slimmer with a TPE being her best chance of removing all the cancer, avoid spreading and a smaller chance of recurrence.
Originally her surgeon had 'penciled in' the 15th of May to perform the surgery, however thats now been pushed back with no clear date in sight. A major concern with this is that she is now 3 months without treatment, she's concerned that the cancer could now be spreading again (as we're always taught that these things need to be caught early and managed quickly for the best outcomes), she's just had another set of scans, so we should know the outcome of those pretty soon, I was just wondering if anyone else has experienced a wait this long? Is it normal? The consultants, nurses etc don't seem to give much away when asked questions, so it would be great to hear from anyone else who may of had a similar experience?
The other question/s I suppose I have is for anyone who has had a TPE or been close to/helped care for someone after a TPE. It feels like theres a lot of information about the surgery, post op care, recovery and quality of life post TPE, however it would be great to hear from someone who has had some form of experience or connection with the surgery, and is open to sharing.
Is that anything you wish you had known before opting for the surgery or anything you would have done differently? Any advice anyone could give about recovery or about supporting someone through recovery? The level of care needs for somebody who has just undergo such a major surgery? The realistic truths about living life with 2 stomas? How easy/difficult did the changes to everyday life come to you? Would you do it again and ultimately, was it worth it? Any insight or advice would be welcomed and extremely appreciated.
I understand that every situation is different and each is very case by case, we're under no illusion that this will be easy, we would just like to be as prepared as possible, get all the information and learn as much about peoples experiences as we can, and hopefully find a light at the end of this tunnel.
Thanks x
Hi ZD92
I have had a TPE, for a different cancer, so I might be able to help answer some of your questions.
My cancer was recurrent cervical cancer (if you click on my name my story is in my profile) and I had chemo and radiotherapy before an attempt at a hysterectomy(which failed) followed by the TPE. My cancer did spread after I was opened up for the hysterectomy, but it was still contained within the pelvis.
From the time my recurrence was discovered to having the TPE was 5 months and in that time I had no treatment other than the hysterectomy attempt. It took a long time to get a biopsy to confirm the cancer had recurred, and have multiple scans-cts, mris and a pet scan. I only had pain relief during this time, which was quite tough. If the cancer had spread beyond my pelvis, the TPE would not have been attempted in my case, but the only spread was over my bladder and uterus, and there was no lymph node involvement.
I would have attempted to become as fit as possible before the surgery, but this was difficult as it happened only weeks after my abdominal surgery for the hysterectomy and recovery from that was difficult mainly due to the level of pain I was experiencing.
The TPE was my only chance of a cure-if it hadn’t been possible I would have had palliative chemotherapy, so I chose the surgery willingly-my chances were put at 30% survival-usually for my type of cancer it’s around 50% chance of cure.
There is no way to sugar coat the fact that it’s massive surgery with a long recovery time. I was in hospital for 2 weeks, and on discharge was exhausted and very weak. I needed help with absolutely everything, and could do very little for myself. On bad days I couldn’t manage to get to the bathroom for a shower so I had bed baths. I even brushed my teeth in bed using a bowl of water brought to me because I was too tired to move.
I vomited a lot, so needed a bucket by my bed, and my bed needed changed frequently when my stoma bags leaked. I couldn’t do this myself, so my partner did everything for me. I’d recommend a waterproof mattress cover to save the mattress.
I tried to get up every day and have very short walks in the house-I needed a Zimmer frame for this. Sitting was very uncomfortable and painful for several weeks and lying in bed was easier in the early days. I used a full body pregnancy pillow to help support me but initially needed to sleep on my back. It’s a very strange feeling to have everything in your pelvis removed. I slept a lot!
I had help with managing my stomas at first from my partner. I accepted they were part of the deal straight away so they didn’t bother me. It takes time for stomas to settle as the healing goes on inside, and it takes time to find out which stoma products help you. There was quite a bit of trial and error involved but I had a lot of advice from the stoma nurse who visited the house regularly for several weeks.
Do I regret the surgery? Emphatically not because I’m now considered cured. I never had any further admissions to hospital with any issues, and no recurrences. However, I’d say that I probably underestimated just how major a surgery it was to go through, despite meeting up with some ladies who had been through it.
They told me recovery would take about a year, and I’d say there were about right. Recovery wasn’t linear-there were some steps backwards at times, so I was glad for any baby steps I made and progress I could see. I couldn’t eat very much in the first few weeks due to vomiting so much, but after 6-8 weeks my appetite improved.
I’d suggest introducing food gradually to test what can be managed at first, and chew everything thoroughly. Bland is best to start with. I can eat and drink anything I want now but that took time. Some things initially made me very sick-dairy and fatty foods were the worst culprits for me. I loved fruit ice lollies which helped keep me hydrated when I couldn’t manage much.
Stomas with time and practice become easy to manage-they don’t really affect my life at all. I wear the same clothes, don’t use special underwear, and go swimming and abroad on holiday.
It’s hard work being a carer for someone after this surgery-I was lucky to have a partner who wasn’t phased by my stomas and is by nature very practical. But it was exhausting for them and scary at times. Be scrupulous about trying to avoid infection round the wound and stoma sites.
Just don’t underestimate the tiredness! I hope that’s enough to be going on with-feel free to ask any questions you’d like to. I’ll finish by saying my surgery was in March 2020 and I am very lucky to have ultimately done so well.
Sarah xx
Hi ZD92
I think the medics concentrate on the mechanics of surgery itself and their role in it. I had 3 surgeons doing my op, and I remember the urology chap saying I’d wake up feeling like I’d been kicked by a horse!
However, they actually have no real idea of the practicalities of life immediately after surgery because they don’t live it. They don’t know what it feels like to live with 2 stomas, so in reality, there probably isn’t much information they can give to us that will be helpful.
I found the most helpful thing was meeting up for lunch with a few ladies who had the same cancer as I did, and 2 of them had been through the surgery themselves. I gained more from that than anything and I could see that they were well and living their lives.
You haven’t mentioned how old your mum is-I was 58 when I had my surgery. Because it’s such a big surgery, involving multiple staff etc, it’s very expensive for the nhs and I was made aware that they wouldn’t attempt surgery without feeling there was a good chance of success.
There are lots of factors at play after surgery as you’ve said-there is a risk of infection, and potential complications but that’s the same with surgery in general. I was discharged from hospital on the day the first lockdown was announced in the UK on 20th March 2020 and it was very difficult to get support from anyone other than my partner.
While in hospital I developed an infection from something called a “pelvic collection” which is where all the “gunk” from my surgery collected in my empty pelvis. This wasn’t serious, and was left to drain naturally, but the smell was horrendous! I was helped by nurses, either sitting in a wheelchair or supporting me to shuffle to the shower, with one who had the job of cleaning all the stuff dripping onto the floor! I could not have walked unaided to the shower due to drains/bags etc attached to me. Nurses had to help me with washing my hair as I didn’t have the strength.
I developed an infection in my abdominal wound when I came home, but we couldn’t get district nurses to come out to help with advice and dressings for example. I was too weak to go back to hospital which is 1.5 hours away. My partner had to rely on queuing up at the local pharmacist with photos of my wound and having a chat with the pharmacist who was able to advise on what to use. Make sure you have a thermometer at home to take your mums temperature regularly so you can take action at any sign of shivering/raised temperature.
I’m not saying any of this to scare you, but just make you aware of things which happened to me so you are aware of what sort of things CAN happen. I didn’t know how little I would be able to eat and I lost 3.5 stone very quickly with all the vomiting. While in hospital, I wasn't put on any special diet as my consultant wanted me to “get back to a normal diet” as soon as possible.
With hindsight this was not a good idea as I just couldn’t face hospital meals! It’s best if they give you liquids only at first, and things like jelly, and smooth soups, then build up to soft food. Your body needs time to adjust to a new digestive system. I didn’t know I should have asked my partner to bring things to me like jellies etc because no-one told me!
I’d also recommend not being shy about pain relief. I tried to soldier on in hospital and say I was fine, but again with hindsight, I’d never do that again! I was in the high dependency unit for 2 nights on a pain pump, and when moved to the ward was offered paracetamol and oramorph if I asked. I wish I had taken more advantage of the oramorph!
I took some mainly at night to help me sleep, but the nurses try to get you up and moving/sitting in a chair in the day and they did not seem to realise how painful and uncomfortable this was for me. It’s better to take regular pain meds to stave off pain rather than try and deal with it when it’s established itself.
That’s probably enough to be going on with-I’m conscious I don’t want to overwhelm you with information. The only thing which affects me in my life now is the fact that I live with severe osteoarthritis, but as far as the surgery goes, my life is very good. I have no pain, no issues with my stomas, and I feel very well.
It has given me my life back, and extra years to see both my daughters get married, and my granddaughter born nearly 2 years ago. A TPE is a really daunting prospect, scary in its magnitude and the changes it makes to your life. I chose not to focus on the process of what would be removed, but on the potential result of a life without pain from my cancer, and the cancer gone.
Although it is life changing I prefer to think of it as life saving. The memories of those early post surgery days have faded now. I’m proud to have come through it successfully and very grateful to the team who saved my life.
Sarah xx
One of the things which I didn’t know at the time was that I should have had a discharge assessment prior to leaving hospital. I had to demonstrate I could walk up a flight of stairs and back down, but nothing else!
I had my surgery in a different county, in a different health board area, so this should have been done automatically to assess what I might need in the way of care post surgery in my home county.
I’d recommend talking with the hospital staff post surgery to see how your mum’s discharge will be assessed and handled.
Something else to consider is contacting the local social care department to see if any type of home care would be available, paid or otherwise. Either your mum can self refer to do this, or you can do this on her behalf.
You’d be looking for a “needs assessment” by contacting the adult social services department of your mum’s local council. I’ve done this myself quite recently so have been through the process. A carer can also have a needs assessment-again we’ve been through this process when my in laws were in a difficult situation with my father in law being carer for his wife with dementia when he had cancer and major surgery. My partner was eligible for a needs assessment on the basis of caring for two elderly parents who both had difficulties.
There may not be help available, but it’s worthwhile having the assessment done so your mum is on the radar for adult social services. Her gp may also be able to assist with signposting to extra help.
Sarah xx
