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
