Consultation for TPE

Hi Madge18 

We’ve spoken before when you joined the community-I’ve been through cervical cancer, recurrence and the TPE surgery. It’s a lot to get your head round, that’s for sure. 

I have to confess that I didn’t ask a lot of questions beyond what my surgeon explained to me at my pre op discussion as it just seemed so huge at the time it was overwhelming,

But I’d be asking about scans-I needed multiple scans before surgery-ct, mris and a petscan. If you haven’t had scans recently I would expect you’d need them to establish exactly where the cancer is, and whether or not there is any spread. I was told there would be no surgery if the cancer had spread beyond my pelvis, but the scans showed it hadn’t. 

If I were going through it again, I’d ask questions like these-

How many surgeons will be involved in the surgery? I had 3- my gynae surgeon led the op, but I also had a colo rectal and urology surgeon who did my stomas. Ask if you will be meeting other surgeons involved in yours in advance for discussions. 

What exactly will be removed?

How long would you be expected to be in hospital? 

How long is recovery expected to be? Will any recovery programme like physio be put in place? 

How many of these surgeries have you performed, and what has the success rate looked like?

I didn’t ask any of these things so I’m thinking with the benefit of hindsight! I also didn’t ask what would happen if all the cancer was not able to be removed, so that’s a personal decision for you. I tried to focus on the end result and that it would work so I didn’t want to hear any negatives, but some people like statistics and I’m not one of them!

I had my surgery in March 2020, so am considered a success story, but my life is very different now in some ways, and my recovery was long and difficult. I coped pretty well with the stomas as I accepted them from the start and just got on with it as I knew I didn’t have any other choice. I still travel abroad, go swimming, I can eat and drink anything I want with no dietary restrictions so all those are very positive things, and I had no post operative issues at all requiring me to be readmitted at any time. I don’t have any pain relating to my surgery, and crucially my cancer was successfully removed with clear margins without any further recurrence.

There’s no doubt about it being a huge surgery, and I was exhausted in the following weeks. I was very weak and needed a lot of help at home initially. Recovery isn’t always linear-sometimes it can feel like one step forward, two steps back, but this operation gave me a second chance to live so I’ve never regretted it.

There are a few of us who’ve been through this in the group who have different cancers, so I’m sure you’ll get other replies and please ask any questions you’d like to-we are happy to share our experiences. I’m in the UK, but not all of us are, so some things may be slightly different.

Sarah xx

Hi Sarah, I will definitely be asking most of your suggestions. I am a stats woman and I these help me process things. I’m at Marsden and I am due all the scans you mentioned. My oncologist is wanting 3 monthly scans for the first few years as the cancer is very fast growing. 
speaking with you has put my mind at rest a little, I just don’t know how much more my body can cope with. 
The last scan showed up some inflammation and after discussions they decided on the TPE. This was in feb. The last brachytherapy was an 80% chance and they decided to try that to reduce it as much as possible. 

thanks for replying. It’s easier to write it than speak it.

If you are a stats woman, they can give you that if you ask, of course. I always looked on stats by their very nature as being out of date when published, as they are looking at data from the last 5 years and general data includes everybody, no matter what age or other health conditions they may have.

I chose to think of myself as being a unique individual instead and never consulted dr google. I asked my surgeon never to give me a prognosis because I know I would have found that difficult.

 I was aware that my stats weren’t particular good in the general sense, and my surgeon did tell my partner (not me) on the day of my surgery that my chances of success were 30%. I would have still gone ahead as this was my only choice other than palliative chemo at the time, but I’m glad I didn’t know my chances were even less than I had thought! 

I’ve known several ladies over the years who were treated and had their surgery at the Marsden, or who sought second opinions there for recurrence so you’ll be in good hands. This surgery is very expensive so they will not do it without a good chance of a successful outcome, and it sounds like you’d be very well monitored going forward which will be reassuring. Our bodies are incredible really…we find we can cope with things which initially seem unimaginable. 

I hope your appointment on Thursday will give you all the answers you need and if you think of any specific questions for us in the group, please ask away. Our surgeons know the mechanics of our surgery but they don’t live with the aftermath of it, so it can be useful to hear direct experiences.

Sarah xx

I hope your appointment went well yesterday.  It is alot to take in and process. I had a TPE last Aug due to rectal cancer that invaded the vagina and bladder. I was warned that it takes a full year to recover and that has certainly been the case for me. If you are already OK with the idea of 2 stomas, you are ahead of most people. Let us know if you have more questions. 

Thanks Susan13, it went as I’d thought it would. It seems they are in a rush now. I was referred by my team at the end of February. I’d heard nothing by the beginning of April. I chased it and found they hadn’t received my paperwork. It was emailed over and took 6 weeks to hear anything. I’d chased again with my team and my urologist chased too (I have a SPC and having issues.). 
They need an exploratory exam and biopsies to see what they need to remove. Blood were done at consultation but was called back as one was not viable. I’m going back tomorrow for the surgery pre assessment and then going to their private clinic for MRI and CT scans. Then back for the surgery investigation on Wednesday. 
I chased as I know how quickly the sarcoma can grow. 
nothing I can do now until we get the biopsies back.

There is a flurry of things to be done before surgery-I wasn’t aware you had a sarcoma cancer-mine was adenocarcinoma-but still there’s a sense of urgency in general about getting all investigations completed before surgery can take place.

It will be crucial to have the scans and exploratory exam to ensure the cancer hasn’t spread outside the pelvis-I was advised it wouldn’t be going ahead at all if this had happened in my case, and my cancer did spread very aggressively and quickly after my failed salvage hysterectomy all over my womb and bladder but thankfully no further. 

I hope you get all your results back soon, and it’s confirmed that everything can go ahead. 

Sarah xx

Thank you so much for your support. I’m still tired from being there all day Wednesday. I didn’t have much fatigue in ‘23, it’s kicking my behind this time.

I have an update…..

Good news - although the scans in February showed shadows, the one from last week show the same; it’s not grown. This is giving me a greater chance of it going into remission

The expected news…..

It will be a full TPE. I’m taking it as not bad news…. There is none at this time. Back in 2 weeks for full consultation with all the surgeons there that will need to be involved in the surgery. Surgery will be 2 weeks after that.

One question, any idea how to whip the OH into shape… lol . I don’t think he realises how much he will have to do once I’m home…or while I’m in recuperating… I’ve already started the list of things to do around the house.

Thanks for your latest update Madge18 -all sounds very positive. 

The full TPE isn’t bad news in my experience of others who have had either the posterior or anterior exenteration instead of the full TPE with cervical cancer. Those of us who have had the full TPE have fared better than the other ladies I know.

I had individual meetings with my colorectal and urology surgeons so it was good to meet them in advance and understand what they’d be doing.

Sorry, no advice on your other half! I have one who could already work the washing machine and tumble dryer and cook! I did need an awful lot of help when I came home and couldn’t have managed on my own. I’d recommend a waterproof mattress cover as an essential item, and I found it very helpful to have a long body (pregnancy) pillow. It feels very strange to have nothing in your pelvis until things settle, and it’s very uncomfortable to sit down. It was lovely when in bed to have the support of the pillow for my abdomen, when I could lie on my side, and also behind me as support.

You will be very tired and weak when you get home, so your OH will need to be prepared for you not to be able to do much for yourself.

Sarah xx

 SarahH21  he can do most things apart from tidying up and polishing. Main answer is…’I don’t know where it goes lol) 

I have the waterproof covers as well as dark bedding. I was looking for a bed cushion/support and the pregnancy pillows. Just a pillow between my legs allowed me to get comfortable before treatment last year. 

We have a few consultations coming up. I’ll ask the support team for any advice; website; leaflets etc. he’s worried I won’t cope, I’m doing the same for him. I can see us both using some choice words…East London meets Glaswegian. The air will be a lovely colour