Hi J,

I am sorry to hear of your diagnosis and totally understand it is a worrying time.

I had T2 anal cancer and the tumour was around 4 cm. It was therefore recommended that i have chemo and radiotherapy at the same time and this was successful. I also have a friend that had the same cancer and treatment as myself and hers was successful also, hers had spread into her lymph nodes.

As far as i understood it the type of tumour, yes there are different types of tumours you can get in your anus, the size, and locality within the anal canal determines whether chemoradiotherapy is an option before surgery is considered and the inevitable colostomy bag.

I would therefore ask why Chemoradiotherapy is not an option for you, it cannot just be that they dont like it, there has to be a medicall reason why this is not an option for you. If you are able to have the treatment it is a chance to get rid of the tumour without surgery and so you should certainly ask and understand why this is not an option for you.

I am happy to discuss further if you wish.

Jules

Thanks for replying Jules B

So glad to hear you have made a full recovery and your friend too . It makes me more determined to keep fighting for this treatment .My mother died of bowel cancer a year ago so still feels quite raw to me but she was 84 and at 54 have no intention of leaving this wonderful world quite yet but when I do hopefully it will be with my *** in tact. I also have the unfavourable  type of tumour which is typically my bloody luck couldn’t even get that right and also it is very low and has grown into the sphincter muscle which basically stop falling out of your anus so they are insisting on colostomy bag I have an appointment next Friday in Guildford where they have a papillon treatment centre..I am hopping they will still go ahead with this treatment knowing the muscles will be effected and may cause me problems in the future .

if you have any more info on it and advice I would be truelly greatfull I am trying to make light of it but inside feel like I’m on a rollercoaster which doesn’t want to stop.

kind regards 

justine 

Hi Taff,

im really sorry if I seem really negative I’m single and over the age of 50 think it may be hard to announce to a perspective partner that I have or have had cancer and even more harder to say that I have a bag .I also watched my mother die from The disease towards the end she  suffered with dementia which I was actually quite grateful for on a good day whilst in the hospice she tell me how she’d had the most fantastic swim but would like another hotel room and on a bad day she’d want to know how the hell my dad and I let her end  up with a fu——- colostomy bag her words not mine .that was 18 months ago ... The words haunt me and I now think I have this urge to fight this outcome for as long as possible . I Have had this tumour for 18 months and  after my first opp I was in a bed next to a 19-year-old girl who was being taught by a nurse how to change her bag and I can remember putting my head into a pillow and crying for her and thinking how brave she was ...broke my heart .i am aware one day this May be my fate but not ready yet ... but would love to keep in touch with you as your  positivity is something I admire and maybe one day I too can write a post like yours .

Thank you very much for replying I really appreciate it 

Justine 

I had papillon treatment last year in April, they said it had gone, but I'd got an olser which would go in a year.,but I've had CT and MRI scans this feb. And it hasn't gone.:of course with this virus I've only had my results over the phone. But now because the cancer has attacked my lymph nodes they are suggesting an operation to take it all away, and of course it means asthma bag. I'm a very active fit lady, take care of myself but I'm 80:in may; and I am I just admitt quite scared of having it. But I only have chemo as another option which won't take it all away, I can't see the surgeon for 6-8 weeks because of this virus, to talk about it face to face. Just like to know, how long was the op.and did the recovery go quite well. I know it's not going to be easy. But like to hear what if in my shoes would you do.im relotivy strong and I'm not a wimp.

Hi, 

Please can I ask how you're getting on since your papillon treatment?

Thanks xx
 

Hi There,

my anal tumour disappeared but I had chemo and radiotherapy together. Unfortunately 6 months after having the all clear they found it had spread through my bloodstream into my lungs and so now on palliative chemotherapy as it cannot be cured once it has metastasised 

hope you are okay?

jules

Thank you for your reply.

I'm so sorry to read your update. It's such a cruel disease. My one wish in life would be that a complete cure could be found and no one would ever suffer again. It's breaking my children's hearts seeing what I'm going through. I'm waiting for a date for surgery, I need it gone. I was convinced a stoma bag was the worst thing in the world, but it reallly isn't is it.

Take care xx
 

Hi Jay,

I too wish there was a cure for every type of cancer out there! I'm just about to start chemotherapy again after a 6 month break as it had helped to shrink my tumours but now they are growing again! They gave me 6 to 8 months to live and I'm here 12 months on.

you try anything the bag is not the end of the world, I used to think that it would be for me but now I wish it was an option if it would get rid of this horrible disease. I wish you all the very best for a full recovery in time x

Thank you 

So sorry to read this, it really puts things into perspective. 

Please take care xx
 

Hi Jules ,

how are you hope you are well ? Have not been on for a while xx

Hi There,

im ok taking it a day at a time. Since my terminal diagnosis my treatment has stopped working and so not had anything since last July. I've lived longer than they expected me too so there's a big positive. I'm in a lot of pain with arthritis now which only started once I had chemo just a weird coincidence I guess. I just keep fighting!

how are you? 
 

jules

Hi Jules ,

sorry to hear that yes I too now have arthritis since chemo but only in one knee.I read your post when you said it had travelled through your blood & you now wished you had had the bag I read it allot and wanted to thank you for giving me a kick up the *** and made the decision to have a bag after 3 years of refusing .

I think of you often and will continue to think of you often 

keep fighting xx

Hi Jules ,

sorry to hear that yes I too now have arthritis since chemo but only in one knee.I read your post when you said it had travelled through your blood & you now wished you had had the bag I read it allot and wanted to thank you for giving me a kick up the *** and made the decision to have a bag after 3 years of refusing .

I think of you often and will continue to think of you often 

keep fighting xx

You keep fighting too hun. It's a hard road but we are still here and we need to enjoy life as much as possible. We try and get away in the UK as much as possible to see beautiful scenery and relax whilst I'm still able. 
 

im sending you all of my best wishes