Hi All, not been here since beginning of the year.my pelvic exenteration was not done in favour of a more conservative partial vaginectomey. And the following 6 sessions of carboplatin-paclitaxel chemo really knocked the stuffing out of me. I have to self catheterise due to my bladder not emptying. I've had constant pelvic pain since. I had an MRI and CT scan 10 days ago and yesterday I had an examination under general anesthetic. My surgeon has told me that something 1.2cm is deep in my pelvis so I will have a PET scan in the next week.
I feel so angry. This will be my 3rd recurrence and I feel that if the pelvic exenteration had been done as planned then I wouldn't be here facing this again.
Does anyone else feel let down by their team? I have lost faith in them definitely don't feel like I want ro go through it after the year I've had.
Hi Lee
I am really sorry that you are facing another recurrence.
I had carboplatin and paclitaxel and it does indeed knock the stuffing out of you. It is not an easy treatment to go through.
I can understand your frustration with not being offered the pelvic exenteration especially due to another recurrence. I can understand that you are feeling let down.
I am sorry to hear that you are having trouble emptying your bladder and that you are having pain.
I can understand that it must feel hard to go through treatment again. Perhaps just try to take one step at a time and focus on getting the PET scan done now. Once that is done then perhaps it will show what may need to happen next.
In the meantime why not give the Support Line a call and talk things through. You have had a challenging year and it may help to chat to someone about things.
Jane
Hi Lee75
I’m really sorry to read that something else has been found after your examination. That must be hard to deal with. In my own situation, having tried a hysterectomy after radiotherapy and it being a non starter, I would always favour a pelvic exenteration as potentially a more definitive solution to recurrence. I’ve known too many ladies try more conservative treatment/surgery and seen it not work.
Initially I was angry at my team for putting me through an attempted abdominal hysterectomy which was abandoned after I’d been opened up. I found it very difficult to recover-being left with 25 staples in my wound where nothing was even removed. But I discovered afterwards that was because my cancer had become very aggressive and was spreading..
I didn’t have anything to face after having a pelvic exenteration-everything was removed with clear margins, I needed no further chemo and with no further recurrence nearly 6 years later means I’m considered cured. It was worth it for me, despite the enormity of it.
Do you think further surgery might be a possibility? I had no cancer in my colon but asked for it to be removed to try and reduce the chance of recurrence for me. My colorectal surgeon said he could save it, but I said no. Sometimes we need to speak up for what we think is best for us.
Sarah xx
Hi Leeanne
It’s very difficult when you sign consent for a particular surgery and wake up to find something different has happened. I never even considered that my hysterectomy with BSO would not be completed, and I remember feeling utterly devastated when I came round in recovery and was told it hadn’t been done,
I can understand you might not feel well enough mentally or physically for more surgery if it is an option. I had a nine week gap between my attempted hysterectomy and total pelvic exenteration and was in a lot of pain from the cancer. I felt quite weak overall and hadn’t been able to build up my strength in those weeks.
There’s no sugar coating that it’s a massive surgery with a long recovery and this isn’t easy to comprehend or really appreciate in advance.
I met up with some ladies in Yorkshire who had been through it-we went for lunch and I was able to hear honest accounts from them and how they were coping. I wonder if your own hospital has any way of putting you in contact with others who have been through it so you could meet them or talk it through?
I found my surgeons brilliant in terms of their skills and knowledge but ultimately they have no knowledge of living with the outcomes of surgery personally. I was never offered any psychological help or counselling in advance, or after, surgery and that was hugely detrimental looking back.
Only you will be able to decide what to do next if you are told that surgery is still a possibility but I would expect you to be given information about other possible treatment if surgery is not possible or you decline it. I understand what a huge decision it is to make because it can offer a chance of cure but there’s a lot to consider-the recovery, living with two stomas etc. You need to make the decision which is right for you and which you’d be comfortable with, but if you need any support from someone who has gone through it and come out the other side, I’m happy to try and help if I can.
Sarah xx
