Raising Awareness

RosemaryA

Do you or have you experienced Low Anterior Resection Syndrome?

If so you may be able to help a major international study which aims to assess the numbers of people affected by Low Anterior Resection Syndrome (LARS) along with causes and treatment. The criteria are below and you will need to register by March 9.

International Consensus on Low Anterior Resection Syndrome: a 2020 Tripartite Vision project

Background:
We know that some patients have poor bowel function after surgery for rectal (back passage) cancer, a condition known as Low Anterior Resection Syndrome (LARS). It is increasingly recognised that many people experience LARS but there is no agreement on what symptoms or problems should be included in this syndrome. This makes it difficult to find out how many people are affected and to assess the causes and treatments for Low Anterior Resection Syndrome.

Invitation to participate:
We are seeking patient volunteers who have had surgery to remove a rectal cancer to contribute to an international consensus on the definition of Low Anterior Resection Syndrome. It does not matter if you did or did not have a temporary ileostomy, or if you needed any other treatment for the cancer. It does not matter if you personally have good or poor bowel function. We are just keen to hear from as many patients as possible.

This study is being run simultaneously in three languages (English, Spanish and Danish). The consensus exercise will run from late March 2018 and consist of three rounds of electronic voting.

There will also be an opportunity for UK-based patients to attend a face-to-face consensus meeting after the voting rounds but this is entirely voluntary, and anyone who just wants to join in the electronic voting is most welcome to contribute to just that part.

To register your interest, please complete the following quick registration questionnaire before 9 March 2018 - http://bit.ly/2EWXF5k

Mosyposy

Thankyou for posting this @RosemaryA , I have just registered.

Dan-888

Registered as well ! :D

I seemed to remember signing up to some media review of some sort @RosemaryA . But I don't seem to have heard a thing since?
Sorry, I can't remember the details of the media session!
No issues, just remembered is all.

RosemaryA

@"Dan-888" - hello and nice of you to drop by, particularly adding your good news story to the thread about remission :)
We were in contact at the end of last year about the charity's screen at 50 campaign. The focus has shifted slightly since the merger of the two charities, so screen at 50 has become but one element in our overall campaign for optimal screening. Currently the focus is on FIT: you'll be aware that this was due to be rolled out in April this year (in England; Scotland has already implemented FIT) but it's become clear that the programme has been delayed and there are also question marks over what sensitivity level will be used - which is critical to detection rates.
My colleague @EmilyS has you on file as a case study for screening age, so she may well contact you in the future, if that's OK?

With best wishes

Rosemary

Dan-888

Thank you for refreshing my memory @RosemaryA ! But of course, if I can help in some way.

HilaryB

@RosemaryA - I have registered as still have LARS symptoms almost two years post op....

Dan-888

The phrasing used for LARS symptoms in this survey is so accurate to my own experience that I wish I'd taken a copy!
I wanted to complete the whole survey before I ran out of time that I forgot!
Is there a way I can ask for a copy!

Michele

I registered and have taken part, @"Dan-888", @HilaryB and @Mosyposy , I don't know if you are on Facebook but I belong to a LARS group. It's called Living with Anterior Resection Syndrome and its really informative.

Dan-888

Thank you @Michele !

HilaryB

Thanks for the info @Michele - will take a look :x:

Mosyposy

Yes @Michele, I am a member of the Facebook group Living with Lower Anterior Resection too. It is very good and I have picked up lots of helpful tips and information. Everybody knows exactly what you are talking about and are very supportive. Knowing that others experience these horrendous symptoms make you feel less alone. 🙂

Michele

@Mosyposy, what do you post as and I will say hi :x::x:

sweetcheeks

@Mosyposy ,I will definitely look out on fb for this, Geoff’s having so much trouble :x::x:

sweetcheeks

Just joined :x::x:

Mosyposy

Hi @Michele and @sweetcheeks, I post as Mo Reardon. I really find it helpful. Great knowing you are not alone facing these symptoms 😫

sweetcheeks

Hi @Mosyposy , I’m Traceygeoff Hawken, I had no idea there was so many people in the same situation, thanks so much for letting us know :x::x:

Mosyposy

Hi @sweetcheeks, I guessed you were Tracey with you saying you had just joined! I must admit I mainly use Living With Anterior Resection Syndrome group now as I can relate to what everyone is talking about and if I make a post the feedback is very helpful. I just check into this forum every so often to see how everyone is doing. I hope Geoff’s symptoms soon get a lot more manageable. It seems to take time and can be very frustrating...for both of you! :x::x:

sweetcheeks

Thanks, yep definitely, actually compared to some it appears Geoff’s isn’t near as bad , though obviously it’s dreadful for him , and it makes me realise not everything means a recurrence
@Mosyposy :x::x:

Michele

Hi @Mosyposy & @sweetcheeks , I am glad that you have both joined and that you are finding it helpful. :x::x::x: