I have gone through radiotherapy first which worked on my anal cancer briefly, but I had a recurrence a few months later and then a course of chemotherapy and an immunotherapy trial which sadly has not worked either . I have fortunately been referred to St Mark’s hospital with their world class team of surgeons for a pelvic exenteration which will remove all organs and nearby areas such as the sacrum and prostate.
I am having the operation late next week but just wondered if anyone in the group has had a similar operation and can give some supportive advice.
Samiant, male aged73 very soon .
Hi Samiant ,
I’m really sorry that you’re now facing yet more intervention to rid you of this damn disease! I’m going to tag SarahH21 as I think that it’s pelvic exenteration surgery that she had although I believe for a different diagnosis (hope you don’t mind Sarah!). On the plus side it sounds as though your treating team are throwing everything at this & you’re going to be in really good hands at St Mark’s. I’m sending lots of healing thoughts your way & hope your surgery goes well next week.
Nicola
Hi Samiant
It’s really tough to have to go through more after you’ve been through a lot already. Thanks Nikki65 for the tag-I don’t mind at all.
So, I had a recurrence of my cervical cancer and had a total pelvic exenteration almost 3 years ago now. I’m a woman and I can see you’re not from your post, so while the bits that will be removed will have some necessary differences, a lot of the factors about the surgery will have similarities.
It is a very big surgery, but the fact that you have been referred for it is a real plus point. It’s a very expensive operation, and your doctors would not put you through it unless they thought there was a very good chance of success.
I was a bit younger than you at almost 58 when I had mine, but I think no matter what age you are your body is undergoing something huge and recovery time will be long and often, frustratingly, up and down. The weeks immediately after surgery were hard for me and I was absolutely exhausted. There is a lot of healing to do, and you will need to take things very easy.
I had 2 nights in the high dependency unit, then 12 nights on the ward. It takes a bit of getting used to, having everything in your pelvis removed-it feels very strange at first when you try to move! I was very weak, but pain was well managed and I was sent home with a bag of meds. I was on paracetamol in hospital, with oramorph on request and the pain levels were nowhere near as bad as I had anticipated.
You can click on my name to read my story but obviously I have been left with a permanent colostomy and a urostomy. It becomes very straightforward to deal with these as time goes on and with practice. I never found it difficult to look at them or deal with them, I just accepted them as necessary to save my life, and all my cancer was removed with very clear margins so it was extremely successful. I have never once regretted having the surgery.
I basically live a normal life-I can eat and drink what I like, I regularly holiday abroad, and though I have some other issues they are not connected to this surgery.
I appreciate that the thought of the operation can be really frightening, but I focused on the outcome and not the process to get there, which I think helped in accepting it.
Is there anything in particular you would like to know about? I’m happy to answer any questions based on my experience and give you any handy tips for recovery that I found helpful if you’d like. It can be difficult to connect with others who have been through this, so I’m happy to share anything with you that might help.
Sarah xx
Absolutely, Samiant -it’s a lot to take on board, and I’m sure lots of questions might pop into your head.
I am a big advocate of this surgery where it is feasible because of the possibilities it offers, and I see it in a very positive way overall. It is difficult, but so very worth it.
I look forward to talking to you again.
Sarah xx
