Hi, I have an appointment this Thursday for my TPE. My head is spinning and unsure what I should be asking. It’s not like I haven’t had other consultations re my cancer, but this one feels like my last chance.
can anyone give me a few examples of what to ask? I’ve been thru cervical treatment in ‘23. It came back last year, but due to the location I wasn’t able to wee. It was crushing my urethra. I had an emergency SPC put in last July as fluid was backing up into my kidneys, so now connected to a leg bag. The stomas I am 95% sure I can cope with. It’s the op and the future.
I’m mostly worried that it travelled again as I can feel something in my vagina. I’m in constant pain from the SPC and the scarring from the interstitial brachytherapy.
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
