Low Rectal Cancer Diagnosis - newbie on here

Hi Court,

Bit difficult to understand the lack of research bit when NICE have approved the treatment and there are 4 centres in the England specialising in the treatment unless it’s Macmillan that haven’t done any research on it much yet.

Anyway I start my Papillon treatment at Clatterbridge Cancer Centre on the 28 June. So we will see how I get on then.

Kind Regards,

KevH

Hi Rosella and newbie 101,

I was in same position as you newbie and had the same surgery a couple of months ago following chemo and radio. 

I had my surgery done in one, APR, colostomy, radical hysterectomy and vaginal reconstruction. The recovery has taken longer than I expected mainly due to issues sitting for extended periods. Good luck with it all, you are definitely not alone.

Hi Rosella and welcome to the board. It's a horrible shock when you get diagnosed and there is a lot to take on board but it is doable. 

I did not have an abdominal perineal resection but my friend off the Bowel Cancer Board did and she recovered really well. She was out of hospital after a week and back at her office job after 6 weeks.

The colostomy bag may take some getting used to but it is a way of life for a lot of people and it will allow you to go out with your dogs without worrying about soiling yourself.

Everyone reacts differently to chemo but there is a lot of support from the nurses and various tablets and creams to deal with any issues.

Is there are a colorectal support team at the hospital where you will be treated who you can ring for some support or a Cancer Support Service?

The Beating Bowel Cancer site is also very good and they have a lot of booklets that you can download which explain the various treatment paths, what to expect, dietary help etc.

www.beatingbowelcancer.org/.../

Take care

Karen

I was refused a referral due to my radiation oncologists belief that there is a lack of structured research around it, I am sorry I did not self refer. I had the big surgeries which are fine but have been definitely left with a what if. 

The NICE guidelines cover it all and explain the different levels of evidence used for the bases of their  recommendations . Although research is available there is different types of reasearch collected. A lack of a certain type of evidence does not mean a lack of benefit but until they can gather all their appropriate evidence they have a duty of care to inform people . That is probably in the pipeline but not through yet . It takes years to gather . That is why it is available on the NHS but with criteria and recommendations so people are fully informed . It would normally be published in medical journals  . I personally think it’s a good thing to link in the guidelines as that is what is available for every other patient and people should be engaged with their treatment .

Nice are asking for feedback so they can work on their position not to prevent people from getting it . Not sure why you would think Macmillan would take that position . They were actually lovely about it all . Their nurse came back with information to explain Papillion treatment for those who have no knowledge and the NICE guidelines for its criteria . The actual Papillion company ignored me. 

Given one of our members had Papillion treatment then an inoperable recurrence and given my mum is a stage 4 patient and don’t wish that for anyone I wanted to ensure people understood it fully . If I was in your position I may well have it . As long as I understood it all . That was where I was coming from . I most certainly am not trying to stop people from getting it . It may develop into first line treatment with time . Who knows. I think  doctors are Allowed to form a clinical opinion either way without it being interpreted badly .

All  the best with your treatment . 

Great day here hope you enjoy it . I actually spend my time here advocating second opinions so I hope you understand the above . I have no intentions of acting as a gate  keeper . 

Take care,

Court 

Dear all,

I have followed this thread and is overwhelmed by so many of us sharing our experience and journey. Some very tough and some less. I like to say that everyone is very encouraging to some who are feeling down. 

I am a bowel cancer survivor and is experiencing the typical after math of reversal. I bet many of us have moods swings due to the erratic behavior of our bowels. However, I would like to say that I am glad that I have this second chance. 

More importantly, I believe that everyone, no matter what stage we are at, will always have this second chance. 

Luv..

I do understand and I wasn’t trying to be unfriendly.

I managed to get referred to Professor Myint who is the leading Specialist on Papillon in the UK. So much so that at my last appointment with him there was a Doctor from Rome in the room with us where they are looking to roll out this treatment there.

Professor Myint has wrote various articles and done several conferences over the years as well as training the other centres in England in the Technique.

I am not suggesting everyone is suitable for the treatment but everyone should have more than one choice if there is any other options available and once furnished with the information and assessments. Then they can way up the risks and make whatever decisions they think is best for them.

Hope you are enjoying the good weather 

Take Care 

KevH

Hi  Kev, . I appreciate that you were not . I sincerely wish you every success with your treatment .  All the very best as you go forward .

take special care ,

Court 

Hello Catherine and Kev

The latest update on my mother not being suitable for Papillion is following her visit to the GP yesterday: she was told that the reason is because the tumour is too close to the anus and treatment could make things worse, (it’s not anal cancer) I am asking the GP on Monday to make a referral to Prof Myint for a second oppinion; like you say Kev, if it’s a ‘no’ it would be far more reassuring from him! It wouldn’t be easy to make a 3hour journey as you know, but if he said yes it would be worth it!  It’s a long story but there are no other options for mum, so I’m not giving up yet. The GP is keen to talk to me so I think she will be on board to help.

Just to say this forum is so helpful with amazing people sharing their stories. Thank you! 

Hannah

Hi Hannah,

Thanks for the message. As you say the Journey is not easy with all the traffic delays and speed restrictions it takes us about 3 hours with a stop for toilets and refreshments.

We have tended to stay overnight as well to ease the traveling.

Professor Myint is a nice guy and he will talk you through if it is a possibility or not. I hope it is as we all want treatment but it’s also about quality of life too.

Good Luck with your referral and keep us posted.

Kind Regards 

KevH