Hi

Hi, ATS, welcome, sorry to hear you are in this predicament. Mine was a low resection so can't help with an APR except to say someone will come along soon to help. All I can say is keep talking, either to your nurse, on here, or the Macmillan helpline is great. Don't ,if you can, keep it bottled up. Sending (((hugs)))

Hi ATS

I noticed that Gemmary said that someone would be along.

I’ve read others that have had the same op and they’re doing really well so I thought if I posted this it will put you back at the top. 
I am a LAR  so I have an ileostomy . 
It’s frightening I agree, it’s the unknown that’s the worst part. 
I'm ten months on and I’ve been to Spain, I’m flying again Monday to Ireland  
I eat lovely food out and enjoy life to the full. 
I think I was boarder line  as my tumour could be felt. Silly me I thought it was piles as that’s what the doctor told me.

I am not sure about a reversal as there’s an issue , but my cancer is in the bin so I am going to make the most of it.  I feel so much better now that the blockage is removed. 
My stoma is no bother at all.

The treatment that you describe sounds positive. 
Take care

Please keep us updated if it helps 

Hi ATS. I had an APR in July 2019. As Ann said, I  have had very few problems with my stoma. I eat everything I ate before, including sweetcorn, which I understand a lot of people have problems with. And nuts, my muesli is the nuttiest ever! I went back to work and only rarely have to change my pouch at work. I got used to it pretty quickly and often forget I have it. I cried at first when my surgeon told me I was going to have a stoma but, as my colorectal nurse said, it's saving my life. Keep your chin up and keep posting. Any questions please don't hesitate to ask. No question is too daft! 

Love Kim x

Hi.what in particular is it about the operation that terrifies you?.I had a panproctocolectomy in july 2019(rather more removed) and if you read my bio you can see how I got on.

If there is anything specific do ask.nothing is too small or too silly 

Kath

Just thought I would pop this up to the top for you.hope you are feeling a bit better about things.

You mentioned the stoma nurse.I know most dont but I accepted the trial stoma bags before my op and found that they helped my confidence by showing me that no one could tell I was wearing one and that they were so easy to attach.In fact I asked for extras to practise changing them and to see the most comfortable place to site the stoma( came in handy when they marked me up prior to the op)

All the best

Kath

I opted for the TAMIS procedure which is being done on Monday.  I will then wait on the results to see if the margins were clear and if the tumour was a T1/T2 and what stage.  I may have more decisions to make regarding surgery in the future.  I’m still struggling mentally and emotionally and have frightened myself silly with google.  The bleeding is still a problem and i’ve had another bleed today which traumatises me no end.  

ATS

Try and think that now you are having treatment you are in a good place to think that others are dealing with the cancer. There’s nothing for you to do apart from eating as healthy as possible most of the time and gentle exercise.
The rest is being dealt with by the experts. Just hand yourself over and they will get rid of it. 

T1/T2 is a good result. Keep that in the back of your mind. 
Please don’t look at Google. This is the best place to ask questions and get answers from people that have been through it. 
Take care 

Hi ATS,

i

I have picked up a notification that you have started to follow me and I hope you have had a chance to follow my journey. I don’t know what a TAMIS procedure is I will have to try and look that one up. Assuming this is an exploration procedure to find out the full extent of where things are at.

My journey started with bleeding from the back passage and was quickly put on a cancer pathway by the GP. Which resulted in being diagnosed with T3/4 low rectal cancer. The options that was laid out for me was 5 weeks Radiotherapy and 5 weeks Chemotherapy the big operation and a permanent stoma. until I went on here between the initial diagnosis and the follow now consultation with the oncologist.

Through the forum I found out about a treatment called Papallion which if suitable could be done after the Radiotherapy and Chemotherapy and if successful would avoid the big operation and a permanent stoma.

It wasn’t classed as the gold standard but I pushed at the consultation with the Oncologist for me to explore this option and the Oncologist whilst pointing out that it wasn’t the gold standard did support my decision to follow this path.

I am 4 Years on from completion of my treatment and whilst I have had some minor issues along the way. I have just a couple of camera examinations in the next 12 months and if there is no sign of reoccurrence then I am hopeful that I will receive a discharge next year.

I don’t know if Pappilion will be suitable for you but please ask about all your options and then consider what is best for you.

In my case my cancer hadn’t affected any other organs or lymph nodes although there was signs of it showing on the Sphincter. The cancer had responded very well to the Radiotherapy and Chemotherapy and it had been said if I hadn’t had done papillon then there was a 30% chance it could come back but having the further treatment this would reduce it to 11% chance. The gold standard was at a 6% chance of it coming back it  but to me it would of also created another problem area with the stoma site.

I had the Pappillion treatment at Clatterbridge with Professor Myint and he has said the more years that I go without any sign of reoccurrence then the 11% chance comes down and if it did then I could go back to the gold standard. So there was nothing to lose once it was determined that I was suitable for the treatment.

So please explore all your options and weigh up all the pros and cons and do what is best for you.

If you haven’t all ready then please read my journey for more detail although I think I probably have covered it mostly here.

Kind Regards KevH

Hi Kev, Papillon is something I am going i look into.  The TAMIS procedure is removal of just the tumour through the back passage with minimally invasive surgery. It’s highly likely I will need chemo and radiotherapy afterwards and I did ask my surgeon about papillon and they just dismissed it and talked about the usual radiotherapy.  My tumour is about 3 cm and is a polyp type on a stalk but is a bleeder and I’ve had severe bleeding resulting in iron transfusions. Everytime its examined or disturbed it bleeds a lot so papillon was not an option as a first line of treatment and i’ve opted to have it removed.  

Your story is very positive and I’m so pleased for you, I can only hope for the same.  The thought of losing my butt terrifies me and I couldn’t face the APR surgery.  

Hi ATS,

I still had to undergo Radiotherapy and Chemotherapy for 5 weeks and I had a good response as the Oncologist from Saint James said it’s as good as it gets and supported me then going on and having Papillon. As I said earlier I could have left it at that with the Radiotherapy and Chemotherapy but Professor Myint said if I didn’t do anything then there was a 30% chance of it coming back whereas if I then had Papillon then this would reduce to 11%. So I was given the option and I obviously wanted to reduce the odds so opted for the further treatment.

If they can remove yours albeit through an operation without the need for any bag then that’s a good thing. I would then ask the question of the likelihood of it coming back and if there is anything like papillon needed to reduce any chance of it reoccurring or will the Radiotherapy and Chemotherapy be enough.

Kind Regards KevH