Anal cancer back after 2.5 years of clear scopes

Hello Hope4life

I am really sorry to hear of this recurrence and I can understand how frightened and apprehensive you are.  Coincidentally, @Bowbows posted about having APR surgery just a few hours ago, for some reason unfortunately I can't tag her to alert her to your post as she may well be able to help.  This is the post.

https://community.macmillan.org.uk/cancer_types/anal-cancer-forum/f/general/312020/post-long-term-issues

I had an elective stoma two years after the end of treatment as I had so many problems with anal stenosis after radiotherapy.  Life isn't perfect but it is a lot easier than it was prior to having its formation.  Certainly at the time of diagnosis I didn't expect that I would need one but I did, even though my tumour hadn't spread.  I don't often think about it now and my life no longer revolves around morning loo visits and planning loo stops when I am out.

It is a big decision and I hope you get some answers and help from those who have had this surgery.  There are other members who no longer visit the forum and although some found the recovery hard, they are now getting on with their lives.

Please come back and let us know how you are.

Big hug

Irene xx

Hi HopeforLife,

I am similar to you except the chemo and radiotherapy did very little for my cancer and surgery was the only option I had. I had my surgery on the 16th December 25 with the formation of a permanent stoma, APR, removal of a third of my right buttock and reconstruction surgery along with a vaginal flap. My cancer was right in my sphincter muscle and had grown outside my bottom too. I left hospital on Christmas Day 25 and by 20th April I was back working full time. My job is quite physical and I never stop throughout the day. I am doing really well apart from some niggling long term 

I made sure I was physically fit before I went in for surgery and I am sure that helped me a lot. I am also aware this is not possible for everyone. As for recovery, it hurt like hell especially my bottom and even now, this area can be very uncomfortable especially if I sit for a while. Initially they advised me to sit for up to 15 minutes at a time but I only ever managed about 3-4 minutes if I was lucky. I just took my time and listened to my body. There was nothing that really helped apart from taking it easy. The one thing I really struggled with was the lack of after care. I came out of hospital on 25th December and didn’t see anybody at all until the middle of February and that was the stoma nurse. I had no idea if my wounds were healed or not and some of my stitches were still in. That scared me a lot as I had no idea if everything was ok or not. Fortunately it seems as if it is but I am not letting myself get overly excited as I have only had one scan which appeared to show it was clear. Just keeping my fingers crossed. 

More than happy to discuss any areas you can think of. Nothing will upset or shock me.

Bobonows

Hi . Sorry to hear of the return. Im only 12 months on from treatment.

Im replying as  i met a lovely chap at the Anal cancer support group. He had his Stoma put in 8 years ago.

He said it was hard at first , but he has lived life to the full , and it has not stopped him . 

Try a Stoma support group. They might be able to advise you . Wishing you a safe journey . I dont think there is an alternative option. 

 Alt

Thank you Irene so much. I am glad you are better. It’s just nice to communicate with someone who’s actually had anal cancer. I wish you all the best. 

Thank you Bobonows. I am so sorry you had such a delay in follow up care. I am hoping the best for you and that it is gone for good but I understand the cautious optimism. 

Thank you Agp, that is the reality I need to accept I don’t think there is an option. The stoma support group is a good idea. I hope you continue to be clear in your follow ups. 

Thank you. Tbey told me if any return that would be my only option . Sending positive wishes , and keep us posted on your journey . Thank you for your kind words AGP

 BoboBows 

I am truly horrified at your level of aftercare after such major surgery.  I don't know where you are but that takes my breath away.  You really are a resilient lady and all credit to you for pushing on.  Keeping everything crossed that your scans continue to be good.

Irene xx