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Papillon Treatment

11 Jun 2019 22:46

Hi I was diagnosed With anal cancer six weeks ago and I am looking for advice from anyone that has had papilion treatment or anyone that has information on it .I am awaiting an appointment .The hospital I am at have advised a Colostomy bag and seem anti papillon treatment but would still like to explore this option. 

Many advice would be appreciated and any one who has had it good or bad out comes .Just need some opinions ...feeling a bit lonely and scared as hell .

kind regards

J x

Papillon Treatment

13 Jun 2019 21:49 in response to Just1

Welcome to the Cancer Chat forum J.

Unfortunately I couldn't find any recent discussions about this treatment on the forum but you're more than welcome to give our cancer nurses a call about this on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

I know you're feeling lonely and scared so I wanted to put you in touch with @Julesb ‍. They have been on this journey and will know what you're going through at the moment so hopefully they'll pop by soon to offer their support.

Wishing you all the best with your treatment J.

Kind regards, 

Steph, Cancer Chat Moderator 

Papillon Treatment

14 Jun 2019 13:02 in response to Just1

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

Papillon Treatment

14 Jun 2019 19:24 in response to Julesb

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 arse 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 

Papillon Treatment

15 Jun 2019 08:57 in response to Just1

Hi Justine,

my tumour was low too, the doctor could feel it when examining me but had not grown into my sphincter although it certainly affected my bowel movements! 

It does then sound like you are not a candidate for the same treatment as me but when it comes to colostomy I think anything else is worth a try first unless it’s an aggressive tumour and so any delay in surgery would be detrimental to you.

radiotherapy in that area is not painful when you are having it but I had 28 treatments done 5 days a week over almost 6 weeks. As treatment progresses you start to feel the burn and so it’s very important to look after your skin as they advise. It’s about 2 weeks after treatment you feel *****! It was very painful and morphine was the only answer in the end. Things seem grim with the pain and urgency of bowel movements and in my case the effects on my bladder but it improves in a matter of weeks. It’s 6 months since my treatment ended and so now the lasting effects are the tiredness, chemo brain and the mental after effects being at quite a low ebb.

it seems you run on adrenaline throughout treatment and then once they say you are okay you come down with a bang which is apparently very common.

i don’t of course regret having the treatment but it’s not easy and you will need the support of friends and family whatever treatment you have. It’s extremely important and Macmillan are also a great support if you need them or chats on here. You will make friends in the “cancer” club lol x

do you know the size of your tumour as that determines treatment options too?

 

jules x

 

Papillon Treatment

15 Jun 2019 17:59 in response to Julesb

Hi Jules 

thanks for your reply the tumour was at first 16/12cm long 

but had it snared over 5 operations the tumour left is 1 inch long I think cannot see the measure ment on any paper work but will ask at my appointment next week . Yes I will definitely be taking the risk if the Papillon treatment except me and I know it’s gonna be a long hard slog but I feel it would be worth it to not have a bag . I have great friends around me but have chosen not to tell my father or sisters as not sure they would mentally cope but have told my kids I am quite a strong character and am sure this won’t beat me . but appreciate the heads up I am a workaholic so will be cutting down my hours so I can recover . Did the hospital you were at try to talk you out of the papillon route my hospital are  not supportive at all and I’m literally telling me if I do not have a stoma bag I’m going to die .... ??  Hence that is why I am hoping to get as much information and talk to as many people as I can about this option thank you very much for taking your time out I really appreciate it 

 

thank you 

justine 

Papillon Treatment

15 Jun 2019 18:14 in response to Just1

Hi Just1,

I don't have anal cancer so cannot advise on that but I do have two bags, a colostomy and a mucous fistula, although the fistula is a cap now rather than a bag.

I've never had a problem mentally with having a bag and for me, it's infinitely preferrable to spending 6 hours a day on the toilet and having the world fall out of my bottom as a regular occurrence. It's simply a different way of going to the toilet.

It did take me 4 operations to get things goodly greatly physically but now it's all good.

If you want to discuss any bag related stuff, I'd be pleased to offer any help and advice I could give, although I can see at this time that you're against having one.

 

My best to you, whatever you decide

Taff

Papillon Treatment

15 Jun 2019 18:38 in response to Just1

Hi Justine, 

my hospital pushed me to have the chemo Radiotherapy as the first choice and if that didn’t work it was going to be colostomy. However they made it clear that it was because of the size of my tumour, type of tumour and the locality that made it an option for me. If your doctor is saying colostomy is the only way for you then I can’t argue with that. You need to seriously think about what delaying surgery would do to you long term Hun.

Jules

Papillon Treatment

15 Jun 2019 19:01 in response to Julesb

Hi Jules

You can’t argue with that but I can if they have given you the option with T2  cancer why not me ?? There not even giving me that option . I just hope papillon is an option for me and I will take my chances if the sh..hits the fan colostomy May be my only option but I need to try this Avenue first I will let you know Friday what they say in Guilford but fingers crossed I will be going down your route and I too will be as lucky as you .

thank you again for your support

justine 

Papillon Treatment

15 Jun 2019 19:33 in response to Just1

Hi Justine 

if it is T2 then definitely push for the treatment I’m not being negative Hun, just trying to be diplomatic because all rumours are different but I know sometimes you can come across single minded doctors. If I was in your shoes I would definitely ask all the questions and explore all the options so please let me know how it goes xxxx

Papillon Treatment

15 Jun 2019 19:40 in response to Taff

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 

Papillon Treatment

15 Jun 2019 19:43 in response to Julesb

Thank you and will do speak soon x

Papillon Treatment

15 Jun 2019 20:39 in response to Taff

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 

Papillon Treatment

9 Jul 2019 14:50 in response to Julesb

Hi Julesb

I hope ur well & reading this. Can you tell me if you had the Papillon contact radiotherapy after chemo radiotherapy or was it just the chemo radiotherapy. Ta.

Papillon Treatment

9 Jul 2019 22:00 in response to smashem63

Hi There,

i had chemo radiotherapy so both together and not the contact Papillon treatment 

Jules