Anal cancer

Hi.just diagnosed with anal cancer and my heads all over the place.i have an appointment with general surgery and oncology but i have no idea what to expect..i know the general one is like a meet and greet type of appointment but the oncology i havnt a clue .could anyone give me a rough idea as to what happens.the appointment is also a month away and this worries me as surely i would be starting some sort of treatment asap

  • First of all, so sorry to hear that you have joined the club no-one wants to be a member of. My Australian friend said when I told her my diagnosis ‘your mind must be jumping like a squirrel in a cage’ and that was a very good description. The worst bit is waiting for that first appointment - once you have the plan you will feel calmer. And they always have a plan.

    Anal cancer has a good cure rate, so keep that in mind. But DON’T google - you will only read things that may never apply to you but once you’ve seen them they will only add to the feelings of panic. 

    I don’t know where you are but in lots of places there are cancer centres which can offer free counselling. I would strongly advise finding out about this if available- google or GP may help.. It was a huge sanity saver especially in the early days when I just didn’t know what to do with myself.

    I would also suggest calling the hospital to see if they have cancer nurse specialists (known as CNSs). If they do, get a contact - probably a CNS in ‘lower GI’. If you are lucky enough to have one they are a fantastic bridge between you and the complexities of the hospital system. They will be able to tell you whether the month’s wait is normal and what might happen in the first appointment.

    Different hospital/consultants run things differently so it’s hard for me to say exactly what will happen in the 1st appointment just from my own experience but I would  expect that you will go away with a good sense of your treatment plan and when it will start. Macmillan have good advice on their site about what questions you might want to ask. If you can, take someone to be your listener - when you are scared it’s very hard to absorb information. If not, take a notebook. Don’t worry about asking them to repeat information or explain something more clearly. In my experience most consultants are very understanding about how anxious you may be and are keen for you to ask what you need to.

    Come back to me if I might be able to help further. I’m one of the (few) unlucky ones who was not cured so I’m an experienced patient. (And even then I was in remission and completely healthy for 5 years before it popped up again). 

  • Bless you hun.scared is an understatement.the not knowing is so bad.i know things are happening in the background as had mri..ct..pet ct.biopsy and the news of sorry you have cancer.i know each case is also different and like you some never get better.i have my notebook and write down questions that pop into my head.some stupid some not so.i know it sounds daft but this first appointment cant come quick enough.i need to know whats what and whens when.maybe then i can concentrate on fighting this .thanks for all comments.it helps a little.and i wish each and everyone of you the very best of luck in your own fight xx

  • Thanks for the good wishes. I do feel for you. Do you think you might be able to get some counselling nearby? It was such a relief to talk to someone and not have to worry about how they felt. With friends and family you know it affects them personally so it’s hard to share your worst fears. A counsellor has heard it all before and they can really help you to deal with the fear.

    You may not agree but I found it wasn’t helpful to think of it as a fight. Everyone talks about it as if it is a battle. Some days you will feel like fighting - good for you. Some days you will just want to go back to bed. On those days, be kind to yourself. You don’t have to be strong and positive all the time. In spite of what some people say there’s no evidence that positive thinking makes any difference to the path the cancer takes. The important things are to follow the instructions your medical team give you and to stay as active as you can. If you want something positive you can do while you wait for the appointment then keeping as active as you can will help with side effects. No idea how fit and able you are but again, lots of good advice on the Macmillan site. Once treatment starts it will get harder so the fitter you can get beforehand the better, whatever your starting point whether that means running a marathon or exercising sitting in a chair.

    be thinking of you and wishing you well xx