Exenteration

Dr Larsen, are you under Brighton hospital? I recently had brachytherapy at Brighton hospital and I saw Dr Larsen and Dr Lancaster. I have stage 3/4 cervical cancer and have just had chemo, radiotherapy and brachy. I'm now waiting for the MRI to see if it worked. Do you have contacts for Dr Larsen and his clinical nurse? They are really helpful if you have questions. I can send you phone numbers if you need them. 

Hi Elaine (Edy ) and welcome to our group.

I’m glad you’ve found us-this surgery is not that common so it can be difficult to find others who have been through it. If you click on my name you can read my story from original diagnosis to beyond.

I was treated in Sheffield so don’t have any experience of your area, but no matter where you are, this is a big deal to go through. To be honest, I didn’t ask many questions because I didn’t want to scare myself out of having the surgery, so I relied on what my surgeons told me which was the basic mechanics of the surgery. I needed 3 surgeons-gynae, colorectal and urology so saw all of them in advance of the operation.

There are different types of pelvic exenteration, but they should tell you what is being removed. It looks from your original post that you are losing your bladder and colon, which would be a total pelvic exenteration. 

It’s hard for me to know what you need to ask your consultant-but things like how long would you be in hospital, do they have pre or post surgery physical therapy or counselling available? Do you need any further scans to check if surgery will be possible? 

The thing about this operation is that the surgeons and consultants can tell you what they will do but they obviously can’t tell you what it will be like or what recovery is really like. Having been through it I’m happy to try and answer any questions based on my experiences-what do you feel you would really like to know about-having stomas, what does recovery really look like etc? 

Sarah xx

It sounds like we have/had the same team. Kate Lancaster was/is my oncologist & Dr Larsen Disney is my gynaecologist/oncologist, he’s absolutely lovely isn’t he!
I do have that information I just don’t know what I should be asking… 

it’s so lovely to be in contact with you. Yes Brighton will be where they operate. 

I’m so glad you’ve found me Sarah  

I had an operation on 16th January which I think was more of an exploratory operation & to get some biopsy's. The surgeon found the tumour & confirmed cancer but he also said my other organs ie heart, liver, kidneys were all in tip top condition, he even seemed pleasantly surprised! I was supposed to have an mri before my appointment on the 12th Jan but I haven’t received an appointment. 

If on the 12th he/they decide to go forward with the operation how long do you think it will be before they actually do the op? 

im off to read your story & hopefully get back on line tonight. Thank you so much Sarah. 

I also had a small op to get biopsies, and then had multiple scans-mri, Ct and petscan to check for no further spread and to clearly map my pelvis. My petscan was clear except for the tumour 

Time is normally of the essence for this op, as it can’t go ahead if the cancer spreads outside the pelvis. I had to wait longer than would be usual for 2 reasons-I’d had a failed salvage hysterectomy in January 2020, so needed to recover from that, and it took time to coordinate my surgical team, as my gynae consultant/surgeon wanted the best team she could get to work with her. 

So from knowing I needed this surgery to having it was 9 weeks. You go to the high dependency unit after surgery, so the date of surgery is also dependent on a bed being available there. 

Please feel free to ask me anything you’d like to-I’m happy to share, and no question is too silly if you don’t know the answer! 

Sarah xx

He does seem really nice. I see Kate really but I met him when I had my brachytherapy. Whereabouts do you live? I'm in Bexhill. Did they not mention chemo/radiotherapy this time around? Why straight to surgery?

Hi DebDebW 

I realise you’ve asked Edy but just to say from my experience chemo could have been an option though not with curative intent, and you cannot have radiotherapy twice in the same area so that wasn’t an option for me having had it before.

Going to surgery as I did gives a potential 50% chance of cure but of course nothing is guaranteed. 

Sarah xx