Diagnosis

Hi Scared123 and a warm welcome to the board. It sounds like you had a lot to take in and you leave with your head spinning don’t you? I’ve searched for previous posts but they both seem to be from 12-24 months ago but I’ve attached a link to 1 below 

 Anal Cancer 

You could also try posting this on the Anal board?

I had rectal cancer but it sounds like yours is quite low if they’re suggesting a permanent stoma. Would the operation be an Abdominal Perineal Resection (APR) where they sew up your anus (barbie butt) and you have a stoma for life? It’s a big op but a lot on here have had it.

I had 5 weeks chemoradiotherapy in 2016 - radiotherapy at the hospital and chemo in tablet form at home - and it shrank my tumour from 4cm to 1cm then I had an operation to remove the tumour with temporary stoma. I found that stage of treatment to very tolerable but yours would obviously be at a stronger dose so you may encounter sore skin and diarrhoea 

It sounds like the Aphrodite trial is the same treatment but in a stronger dosage which will hopefully obliterate the tumour meaning no need for an operation. You would presumably be regularly monitored but it can be quite stressful living from scan to scan to check that the tumour hasnt returned. In the worse case scenario you would have to go through the operation at a later date but in the best case you’ve avoided a major op and permanent stoma?

Im sure if you give your colorectal support nurse a ring then she’d talk through it again with you. I took part in a trial during my treatment in 2016 and was allocated a clinical trial nurse so you could maybe see if you could speak with them.

My friend told me to take everything I was offered when I was diagnosed so I did. This trial sounds to be using existing methods but in a stronger dose so don’t let the word ‘trial’ scare you. 

I know I’ve probably not been much help but hopefully given you a few pointers and, at the end of the day, it has to be your decision. Actually I remember asking my oncologist what she would do - she said she wasn’t allowed to answer that but if I was her sister then……

Please let us know what you decide and how you get on and feel free to post with any questions or for advice - we’re happy to help and support you through this

Take care

Karen x

Thanks Karen. The consultant hasn't mentioned it is an APR but said it was too low for resection hence the permanent stoma.

Like you said, the best case would be to rid of the tumour but I will be living in constant fear and dread of it returning (I suppose that could also happen after op). 

I just don't know which way to turn and what decisions to make. 

Have you thought about giving the support desk a ring on the number below and having a chat with them? x

Hi Scared123

My tumour is also very low, threatening the anal margin.  I am due to begin 5 weeks of chemo with radiotherapy next week Capecitabine tablets and external beam radiotherapy). I met with my colorectal surgeon last week who told me that without doubt I would be having a permanent stoma - no doubt, no question !

My tumour is quite large (4.7cm) and locally advanced, but there is no spread (N0 V0 M0). My oncologist has told me that there is a 30% chance that the chemoradiation will destroy the tumour completely, leaving just scar tissue behind. I asked about the expected percentage of shrinkage if there was not a complete response to treatment and I have been told the tumour could shrink between 75 - 80%. My colorectal surgeon said my surgery would take place 10 - 12 weeks after my treatment programme ends.  I am struggling to understand why he said I will definitely have a permanent stoma without even seeing how I respond to chemoradiation. I would have thought that if (worse case scenario) the tumour shrinks by 75%, there would have been enough of a clear margin to remove the tumour without a permanent stoma.

Have you decided which pathway you are going to follow? I have not been offered any clinical trials.

Take care

Hi Susie64,

Your situation sounds very similar to mine. I had an appt with oncologist who told me it is nearer 5cm even though I was told it was 4cm. 

I am also going to be having 5 weeks of radiotherapy and chemo (also the Capecitabine tablets) with a possibility of shrinkage. If successful I may be eligible for the internal radiotherapy or worst case I will have to have surgery.

I enquired about the shrinkage and the surgery which they informed me because of the location the size would not prevent the stoma or make the surgery easier. 

I have read that not a lot of colorectal surgeons recommend the Papillon treatment but if you look online it is now recommended by NICE and may be another option for you?

Let me know how you go on x

Hi. I think the tumour has to be less than 3cm for Papillon - see link below

https://www.clatterbridgecc.nhs.uk/patients/treatment-and-support/papillon

Hi Kareno62

Are you aware on anyone being considered for Papillon after tumour shrinkage following chemoradiation?

Thanks

I think KevH had chemoradiotherapy before Papillon. I’m afraid I’m still struggling to tag people into posts but there’s a link to one below

 https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/264190/papillon-cbx 

If you type papillon in the search box at the top of the screen then it will bring up previous posts

Hi scared123 , I was recently diagnosed with a rectal tumour, see my profile. It's been a hell of a rollercoaster. I asked my CNS to advocate for me in the collorectal MDT as I wanted them to explore organ preserving treatment before they went straight to the low anterior Resection and temporary stoma. I am having another endoscopy on Monday to see what's what and then another chat about all my options. I think it is good you are being offered a choice of treatments but it's such a difficult decision. I originally wanted to have the papillon treatment first but I am wavering now as the clock ticks and I've had my endoscopy cancelled already due to strikes but asking for a second opinion has meant that its possible I didn't need the Resection and the tumour can be removed safely and still preserve my organs. 

I wish you so much luck with your journey. As people have said it has to be your decision. Gosh 

Hi Kareno62 

The way I tag someone is to type the "@" symbol then start typing name.

eg. to tag you, i start to type "@" followed by "kar" and the dropdown list shows with username matches and I select the user I want.