I’m sorry you’ve received this diagnosis and welcome to our site.
You’ve come to the best place. As you’re probably learning anal cancer is rare, there’s not many of us out there, but there’s a good community of AC patients, at various stages in their cancer journey, on this forum.
Collectively we have a wealth of experience and advise that we can share with you as and when you need it. Your medical team will be fantastic as will your family and friends, but there’s nothing like talking to people who really know and understand what its like.
You can talk on the open forum or connect with people in a similar situation to yourself. When I joined the forum I connected with another member who was due to start treatment on the same day. We supported each other throughout treatment.
At the top of the this page you’ll see the ‘Ask an Expert’ feature. Via this you can email directly a working anal cancer surgeon who will answer any questions you have about AC. In addition, Macmillan have a helpline you can call for advise or just to talk to someone. Telephone no. is at the bottom.
I have been contributing to this forum for over a year. I was diagnosed stage 3b in March 2018, completed treatment in June and in September was told my tumor had gone. I am currently 12 months in remission with 3/4 monthly check-ups. I now use my experience to support and help others to be better informed.
Most importantly, the treatment for this cancer is highly effective and curative. You will read lots of positive stories on this forum. Treatment is sharp but short. We tend to all suffer the same side effects but they can vary in intensity. You won’t know how you will be affected until you’re in the thick of treatment, its very individual. The treatment is manageable and your medical team will have all sorts of meds to support you through it.
In the meantime, if there is anything we have help you with, please ask away.
Look forward to talking to you and all the best for your appointments over the coming days/weeks.
I posted on Macmillan's Facebook page the other day ... probably Friday ... that I was feeling a tad overwhelmed because I'd had my diagnosis on Wednesday, then on Thursday night had to call out an ambulance for my 82 year old father
Then, on Saturday, the exhaust fell off my car in the hospital car park! I phoned Dad's favourite mechanic on Monday, who said they would collect the car that evening so I cancelled an appointment with my GP and told Dad I wouldn't be able to visit
But the mechanic didn't turn up & Dad seemed surprised that I shouted & burst into tears on the phone on Tuesday night!
OK he's in poor health but has nursing staff around 24/7 where as I ... we? ... have to cope, on our own for most of the time
That's one reason why this online group is so important to people like me JUST STARTING on this emotional roller-coaster
I was diagnosed 2 weeks ago, and waiting for my scans was terrifying. Everything seems 20x harder than it really is.
scan results have calmed me down but I’m still waiting for the medical team to plan and arrange my treatment.
I’m trying to look after myself and acknowledge that I have an anxiety problem for the time being (never previously had problems with anxiety). It really helps to understand what the issue is. There are lots of small things we can do to manage anxiety, so taking little moments to relax, getting things ready in advance, allowing extra time for stuff helps keep my stress levels in check.
I found a little 1 minute meditation video on YouTube which is good when I’m mid panic.
AC is technically an indolent cancer. That means it can’t really be bothered to grow much or spread far. That makes it very treatable and very survivable.
Keep in touch with this group too, it has helped me lots in just a few days.
I've been a member of this group for a couple of hours now and have been so reassured even within that short time!
So far I've had an MRI scan, a colonoscopy and a CT scan ... in that order. So.when my colorectal consultant called me in, he was already able to tell me that the cancer hadn't spread. Reading here that anal cancer rarely spreads and is eminently treatable and survivable is wonderful news
I know what you mean about the need to relax, having suffered from undifferentiated anxiety for more than 40 years. It was first diagnosed as depression but was shown to be anxiety when I completed HADS (Hospital Anxiety and Depression Scale) questionnaires!
My local NHS trust has uploaded a number of relaxation audio tracks at
I'm about to start treatment next week and have to say finding this group has been amazing.
I suffer very badly with anxiety and am constantly asking questions and worrying about the treatment ahead and everyone has been so helpful
Meditation and hypnosis is helping me massively too and although am sure I'll lose it a bit as next week approaches, I've felt a lot calmer in the last week or so compared to the loneliness of waiting for results and tests etc.
Welcome doesn't feel quite an appropriate thing to say, but you know what I mean!!
As I said, my anxiety was initially diagnosed as depression, but since the real cause of my self-isolation and lack of self-care was realised, the relaxation has been a massive help
Strangely, i was as quiet as a mouse during my diagnosis session with my colorectal consultant
My keyworker nurse told me to get a large sheet of paper on which to write my questions for the radiology/oncology team. A week later a and I still only have THREE questions!
Don’t worry too much about preparing questions. In my experience the medical professionals are pretty thorough and comprehensive and will cover a lot with you. The challenge is remembering everything because there can be a lot to take in and it can be overwhelming. If you have someone attending with you they could make notes, some people even record their sessions, with the permission of the oncologist of course.
Any questions that you have after your meeting, you can come on here and you’ll always get response(s) pretty quick.
You may find this Macmillan ‘Understanding Anal Cancer’ booklet useful. This was given to me at my diagnosis meeting. Prior to treatment I dipped in and out of it when I was feeling brave. Its a very straight-forward guide about AC, staging, treatment, short/long term side effects etc.
Pleased to see you're getting organised and have your "Mac Pack" and thought that you and everyone else might be interested in a Mac organiser that you can obtain free of charge by clicking on the green link I've created for you, it's a really interesting and useful pack to have and I'm sure you find it very interesting.
Please remember the doors to the online community are always open don't knock just come on in and chat and ask questions as you need to.
Good luck with your treatment, please keep in touch.
