Newly diagnosed - colostomy or not pre treatment

Hi  I'm Jo and I'm new to this group

So I have recently been diagnosed with Anal cancer

Unfortunately I was aware back in July of some sort of Anal obstruction but when I went for a colonoscopy in September the consultant totally missed it and gave me the all clear

I then went back to my GP who referred me to Gynaecology ( 3 weeks later ) who examined me and found a 'rectal mass'

I was then referred back to the consultant and I had biopsies under GA , MRI, CT and PET scans

Throughout this time I have struggled to go to the toilet and it is getting more difficult each day and depend on laxative powders

The colorectal nurse thinks that I should have a colonoscopy in case I reach  the point where I cannot go to the toilet at all - I have my first appointment with the oncologist in two weeks

I really do not know who can advise me -  anyone else been in a similar situation please?    

Best wishes x

  • Hi Jo (),

    Firstly I’d like to offer you a warm welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us. 

    So many people present to their GP’s/consultants with viable symptoms of anal cancer & are dismissed, many as having haemorrhoids or fissures. I asked my oncologist back this summer why so many people are still getting misdiagnosed & he said that anal cancer is still a pretty rare cancer & the symptoms that people present with can be contributed to other more benign conditions & if it’s not offered then patients should insist on a digital rectal examination although in your case you really would hope that a colonoscopy would have picked it up!! 

    Although I didn’t have one personally we do have a couple of members here that have had a colostomy prior to treatment & have coped well. It seems it can relieve some of the pain caused by an obstructive tumour & also alleviate the discomfort of going to the loo during & just after treatment has been completed. 

    Hopefully one of our lovely members that have experienced this will be along soon to offer you some insight. In the meantime we do have another group on the community, the Ileostomy, colostomy and stoma support which you may also like to join just to gain a little insight into what living with a colostomy can be like. 

    I’m hope this helps a little. 

    Nicola

  • Hi Nicola

    I hope you are well

    Thank you so much for your message it means so much to have your support

    I am now focused on the now -  what happened earlier this year cannot be changed

    I have had amazing support from my Colorectal nurse and have decided to go ahead with the surgery which will be this coming Tuesday  Though full of trepidation I believe it will give me the opportunity of getting the best results from my Chemoradiotherapy

    Every best wish and thank you again for taking the time to message me x

  • Hi again Jo (),

    I agree with your mindset totally, what’s gone before can’t be altered now & it’s the here & now & how you approach it that matters definitely. It’s definitely a healthier way of dealing with the situation. 

    If it’s any comfort, in hindsight, knowing about anal cancer & it’s treatment what I do now (3 1/2 years post treatment) in your situation I think I would have made the exact same decision. It’s good that it’s happening sooner rather than later too, hopefully it’ll offer you some relief. 

    Please don’t hesitate to post any questions you have, no matter how personal, I can guarantee we’ve all asked them before. We’re here for support whenever you need us. All the very best of luck for Tuesday, I’ll be thinking of you. 

    Nicola

  • thank you Nicola its so much easier knowing that I'm not alone 

    I don't like to share with family the concerns I have as they just worry on my behalf 

    I have no idea what to expect from treatment but I'm sure I will learn more at my visit to Oncology in a couple of weeks 

    Get Tuesday out of the way and then think about that

    best wishes Nicola xx

  • Hi Jo C 

    Welcome to the group, I'm relatively new to the group as well. 

    I had just tried replying, I don't know where my reply went so sorry if I'm repeating myself. 

    I was diagnosed with anal cancer and had a colostomy on 3rd Oct for chemoradiotherapy. My colorectal team advised me, they've been a great support both pre and post op. 

    Long story but I originally went to gyny with gp thinking it was a bartholins cyst however the lump I found in vagina got bigger, PR exam was given then went for mri, they thought rectal, biopsy confirmed Squamous cell carcinoma and queried rectal/vaginal. However, fast forward to having colostomy op I had a flexible sigmoidoscopy whilst under with biopsy that confirmed anal cancer which has gone to vaginal tissue. I had no signs /symptoms that I could think of and only began bleeding after the 1st PR examination. I had the sigmoidoscopy whilst under as I began to become uncomfortable and bleeding more. 

    Going onto the colostomy, I get on alright with mine. I was in 5 days after the op. I can change my bag in a few mins, you'll find your own routine and you'll get used to it. Your stoma team will support you too. For me, like you, focusing on the now is really helpful. I knew having the stoma was the 1st step on the ladder to treat cancer. Taking one step at a time. I knew being able to change my bag myself in hospital was a tick towards getting home. For me now, my next step is to start chemoradiotherapy. 

    I wish you all the best and please keep us updated x

  • Hi Hamfan21 and thank you so much for taking the time to message me  It sounds as if we are a very similar position currently and if I can be of any support to you or indeed others along the away I would be honoured to do so

    Unfortunately I am a little in the dark and as useful as a chocolate fireguard as they would say lol but I am happy to share my journey 

    How are you coping at the moment ?  I am struggling to sit down for long despite having a cut out cushion and the evenings are the worse time - it doesn't help that I have a herniated disc

    How long after surgery before you were allowed to drink and eat ?

    Have you had an appointment with Oncology yet ?  

    Hope you don't mind all the questions :)

    Love and best wishes Jo x

  • I have a temporary (loop) stoma, which if the treatment goes well can be reversed. I was unlucky in that shortly after starting chemoradiotherapy my small bowel was so inflamed that it prolapsed through the stoma. It was all pretty horrid.To some amazement, they did get it back in again, and I have restarted treatment. I don't want to put you off - but now I know to be careful. Drink lots of water. Behave as if you have a hernia during treatment. The stoma nurses are wonderful and it is better to keep the whole area clean ( I had other issues as well that made a stoma make sense). Most people have no issues, but it's not alll been straightforward during the actual treatment. I am in early days, and having somedouble days to make up for the ones I missed while I was in hospital; I'll let you know if there are any more problems!   

    All the very best. I have been told that this type of cancer responds exceptionally well to treatment, and fully expect to come out the other side feeling great! x

    LesB

  • Hi Jo

     I had a defunctioning loop colostomy on 30th September in preparation for treatment. After the first couple of days Which were a steep learning curve, I have found having a colostomy quite easy to manage. You quickly adapt. my tumour was apparently taking up about 75% of the rectal passage, so was advised it would help with treatment. 

    I started treatment on 17th November and so far it’s not been too bad, although I have been pre-warned of the possibility of worse side effects towards the end of treatment. 

    Hope this helps. Blush

  • Hello  hoping your colostomy op went well today and that you’re doing ok. X