SHAPE study, rad vs simple hysterectomy, need advice!

Hi all

I’ve been offered the chance to take part in a trial where I have a simple hysterectomy rather then a radical. I haven’t read all the information about it yet but need to make a decision by tomorrow as my surgery date is Monday. Is anyone part of the trial or was given information about it and decided not to go for it? I would be grateful for any advice.

Many thanks

Sam

Hi there

i'm on the SHAPE trial the first for my hospital. The computer decides whether you have a simple or radical hysterectomy its a 50/50 chance. It chose radical for me. I must admit I was disappointed at first but soon came round. It will benefit others in the future deciding whether the simple hysterectomy has the same effect as having a radicL hysterectomy but with less side effects. 

 

Hope this helps

Helen xxx

Yes very helpful Helen! I didn't think I would get a reply.

Can I ask what made you decide to do it? I am swaying more towards being in the trial but obviously concerned about the chances of it returning etc. Most of my family are against the trial too as don't think I should risk my life for others, but I'm not sure I see it that way. Surely I will be so closely monitored that if it does come back it would be dealt with very quickly?

Something silly really. My father had non hogkins lymphoma when I was a baby. He took part in a trial then and lived until I was 30. He had fabulous treatment and care despite having to travel to hospital miles away. 

I had hoped I'd get the simple option as I didn't fancy the thought of some of the possible side effects. My consultant and CNS spent a lot of time going through paperwork with me. My husband and I felt we had nothing to lose and would get more attentive treatment being on trial. Only you can decide. Good luck x

Hi Sam,

To the best of my understanding, when a clinical trial is set the outcome is already pretty-well known. Nobody is going to put you to unnecessary risk. The purpose of a clinical trial is to collect data in a controlled manner in order to prove a point. Sounds to me very much as though medical people are already convinced that a simple hysterectomy will have exactly the same benefits as a radical but with less trauma. Now they need to prove it before they are permitted to make it new standard practice.

Be lucky :-)
Tivoli

I decided not to be part of the trial. basically When you enrol you get put in one of two groups. One group will have the standard radical hysterectomy which has about a 4% chance of cancer returning, or the other group has the simple hysterectomy which the leaflet said there is an 8% chance of cancer returning. Although the chances of my cancer returning is very minimal anyway, i decided that because I have two children I didn't want to risk doubling my chances of a recurring cancer. My surgeons have a very low rate of damage to the nerves and bladder problems so for me I just couldn't see the benefit of a simple hysterectom. 

If the chances of an improved quality of life was greater after a simple hystectomy was better or the trial had been running a little longer or I hadn't had 2 little children to think about I would have done the trial, but had to do what was right for me. X

Thank you so much Sam for explaining this trial in detail, as well as your reason for choosing not to participate.

Good luck tomorrow!
xxxxx
Tivoli

Good luck today xxx

Just seen your replies. Thank you, it all went well so I was told! xx

Hurrah!

Happy Christmas!

(((((HUGS)))))

Tivoli