SCC

Hi Jas78 and welcome. Sorry to hear you've been in so much pain, I was the same after my anal biopsy. I did not have a stoma, but had chemo and radiotherapy. The radiotherapy does leave you sore but I'm guessing you will avoid this with having the stoma.  The chemo/radiotherapy is a very effective treatment for this type of cancer. I'm 15 months on from treatment and my annual scans were all clear, have a look at my profile for further details. The chemo is fine. I had an intravenous dose on day 1 of Mitomycin and then 8 capsules a day (excluding weekends) of Capacetabin, for the rest of the 5.5 weeks treatment with radiotherapy sessions (about 10 min each) for 5.5 weeks Monday-Friday. You're bound to feel anxious, it's all so new isn't it, hospitals ,scans etc but it's good you're feeling positive. You will find the treatment goes by very quickly. Please feel free to ask any questions about anything x

Hi JAS78,

Welcome to the online community, although I’m sorry that you find yourself here. I’m also sorry your having so much discomfort right now. I know exactly what you’re talking about though as I had my tumour biopsied then removed via local resection prior to a course of chemo-radiotherapy so I completely understand the discomfort you describe. I found bowel movements extremely difficult post surgery & ended up in A&E 5 days after where I was prescribed glycerin suppositories & told you quadruple the stool softener I’d been given by my surgeon on discharge. I wasn’t advised to have a stoma but there are a few members on here that have had one so hopefully someone will see your post & be able to share their experience with you. I’m sure once you get to grips with it you’ll be ok & at least you won’t have the issues of uncomfortable bowel movements during your treatment! From the sounds of things it’s probably the position of your tumour that’s is causing you issues as if you’ve been told it’s AIN3 then I think it’s been diagnosed quite early which is good news for you, mine was stage 1 so just a little further advanced than yourself but I had no lymph node involvement & no mets thankfully, hopefully you’ll have a good response to the treatment. I’m now just over 2 years post treatment & NED to date, I’ve just been put onto annual check-ups opposed to 3 & 6 monthly ones. As 1in1500 has said it’s only natural to feel anxious especially as you’ve had the stoma op as an emergency but hang onto that positivity if you can it’ll carry you through the weeks to come. Again I echo 1in1500 in saying if you have any questions please just ask we’re here to offer advice & support, although each of our journeys differ slightly, in having this diagnosis we’ve all been where you are now to some degree. 

Nicola

Hey lovely 

welcome to the group.   I had a very similar story, my stoma was done on 7 February and following the treatment of 5 weeks chemotherapy staring on 16 March  I got the final all clear in July and confirmed via biopsy in August.  I had my stoma reversed 2 weeks ago and so far all going really well.  Normal service has resumed with going to the toilet.   The stoma wound is not healing well due to chemotherapy impacting healing, but it’s all good.

The journey you have ahead is a hard one, but the results are worth it.   Take each day at a time and my best advice for the sores that you get from radiotherapy towards the end is to use a sitz bath.   

Good luck. You will do this xxxx 

Hi Matilda24,

It’s great to hear from you & huge congratulations on the excellent biopsy results & your stoma reversal. Good to hear normal service has resumed well! Well done. Hopefully your wound will heal soon.

Nicola  

Hi Nicola

Thank you so much, it’s good to be at the end of journey.  Hope you are well x

Hi, thank you so much for replying. I honestly didn’t know how good it would feel to read other people’s journeys and know everything that I am feeling and experiencing is perfectly normal. I’m seeing the oncologist next Thursday so will find out what they have planned for me with the chemo. I have also been referred to a gynaecologist which I am going to tomorrow Just to check over that side of things before I start treatment. Congratulations on your clear scans 

xx

Hi Nicola, I really appreciate your reply. Hearing your stories really does settle the mind. The stoma has been a huge shock and I am still early days with it. I found it all very overwhelming to start but I think in the long run because my tumour is blocking the way it could be a blessing in disguise in the end. I’m very nervous about the radiotherapy as they said the tumour will swell before it shrinks!!! Not much room left in there as it is. It’s the size of a golf ball. 
xx

Matilda, I am so happy to read your message. The stoma has been a huge shock to the system. I went for an appointment with my consultant to discuss my diagnosis and didn’t leave the hospital. Emergency stoma was decided and off I went. I was sent straight to a ward. It was all very frightening especially as my husband couldn’t be with me. I am definitely holding on to the fact that when I get the all clear I will have it reversed. 
its all been a huge whirlwind to be honest. It’s only been 4 weeks since my doctors sent the referral letter. I since had 1 biopsy with colonoscopy and 2 operations! I’m not sure how long they will want to wait to start treatment as I only had the stoma done on Saturday but I’m seeing the oncologist on Thursday. 
I hope you start healing soon and feel totally back to yourself soon. X

Hi Jas78 

Wow that must have been scary and with no time to get your head around the stoma let alone anything else.  I hope you are recovering well, for me when I got diagnosis I was so upset by the stoma but I have to say by the end of it I was actually very used to it and if I was told that it couldn’t be reversed I wouldn’t have been devastated.  

I had the support of a fantastic stoma nurse and had a good stoma journey with no accidents and I. Fact having had lots of toilet issues due to the tumour in a way it was a relief.   Although now it is reversed I am also happy.  

my advise would be do not lift anything as it’s very easy to get a hernia under it, I did and this needed repair when they reversed it.  

my reversal was 7 feb and my treatment begun 16 March.   It seems like forever and you just want treatment to start ASAP but use this time to get healthy take lots of vitamins and get ready for the next step.    You have got this you will do it, lots of positive thoughts xxx

Hi again JAS78, 

As you’ve said the speed that everything has moved at thus far has left you feeling overwhelmed but on the flip side I don’t suppose it’s left you much time to sit around worrying how long things are going to take to get moving, with the whole pandemic issue there have been delays in lots of medical procedures/treatments but your ball is definitely now rolling. I know it’s easy for me to say being 2 years down the line but try & not worry too much about what’s going to happen when you begin treatment, i.e., swelling etc., I’ve known a few people on this forum with large stage 3 or 4 tumours that haven’t had stomas & have said that once the radiotherapy kicks in they’ve literally felt it shrinking, you do get a little internal inflammation but I wouldn’t say enough to warrant panicking about it plus, difficult I know, but try looking at the positives, bowels movements during & after treatment can be really quite uncomfortable especially if you’re like me & suffered a bit of internal inflammation & constipation & you’ll not have that to contend with once you get to grips with your stoma. Have they staged you at all as when you mentioned it being AIN3 I was under the impression that this meant it was very early stages although you’ve said it’s fairly big, mine was stage 1 & 2cm in diameter but only 2mm in depth.

I’m so pleased that Matilda24 has replied to you too, it’s great when someone can offer some advice/support that’s had the same experience. 

Nicola