Newbie Hi All.

Hi Rocky1 ,

Firstly welcome to the MacMillan Online Community although I’m really sorry to learn of your recent diagnosis. 

A long drawn out path to the diagnosis of anal cancer is unfortunately too common, I wish the medical profession would sit up & take notice!

The majority of us here have had a diagnosis of anal cancer, we know exactly how you’re feeling right now. We are at all different stages of our journeys here, some like yourself are newly diagnosed, some going through treatment, some going through their recovery & those like myself that are through the other side of our 5 year surveillance & have been discharged. Personally I’m almost 8 years post treatment. 

Please don’t be shy, if there’s any questions you have please just ask, nothing is taboo here, the nature of our diagnosis leads to conversation I never thought I’d be having!

I’ve everything crossed that your scans go well next week, hopefully your results will go straight to the next MDT (multi disciplinary team) meeting & a treatment plan can start being put into place. 

We’re here to help support you however we can.

Nicola 

Hi Rocky,

Yes it is completely overwhelming to get the news that you have cancer, especially if you had no idea. But now you are in the system they will find out what is going on for you, and will be able to work out a treatment plan, so at least you will be starting to move forward a bit.

It is awful for you to have had this going on for so long, sadly it is a familiar story to many of us here being told we had piles. Many GPs just don't seem to have heard of anal cancer, and so much anxiety and stress are caused whilst we are waiting, and eventually getting the news which can really shake us, as you know.

There are so many kind and supportive people here at many different stages and levels of cancer who understand what it feels like, and know how bewildering it is so please ask if you have any questions and let us know how things go for you.

All the best, xxx

Thank you for replying. I’ve just been feeling lost. I guess this is the hard part waiting. I’m also not sure who to tell or if it helps. I’ve stopped the Google search. That just gave me huge fear, I’ve read on here it’s not the best thing to do. I think this forum may be what I need right now. 

Thank you for the reply. It’s the waiting bit that’s the worst at the minute. But at least I have found this forum. Not that any of us want to be here , but we are so I’m thankful for the support.

Hi Rocky1

As you say the waiting can be really difficult, I know it was for me and I think especially so when there has been a long drawn out path to diagnosis but I found that once there was a treatment plan in place I started to feel more in control and less anxious.

As others have already said you can ask any questions here.

All the best for next week and please keep us updated.

Monty xx

I will and thank you for replying. Just having a bit of support here means something. Just having people on side that understand x

Hello Rocky1 

A warm welcome to the forum, although I am so sorry to hear of your diagnosis.  And I admit I am taken aback at how long it has taken for you to to get to the definitive diagnosis, sadly, as others have told you, you certainly aren't alone in being misdiagnosed.  However, it does seem that your treating team are being a lot more responsive in progressing the investigations.  Even that can seem to take weeks, but there is a lot of work going on behind the scenes where all the scans are analysed and your treatment plan being discussed.  However, please don't ever be afraid to chase the hospital now that you know what is wrong, sometimes we have to self-advocate and you shouldn't ever have to wait as you did before now that you are being fast-tracked for cancer treatment.

I think we all know the shell-shock, disbelief and fear that comes on hearing the diagnosis.  You may not think it right now, but once treatment starts you really will start to feel a lot more positive.  There is nothing quite like the hope that at the end you will be cancer-free.  We have lots of tips and coping strategies that we can share so please let us know what your treatment plan is and when it starts.

Big hug

Irene xx

PS  I only told family and a couple of close friends about my diagnosis, it is a very personal thing and you are under no obligation to let others know, do just what you are comfortable with.  The ones I told about me were there to help me through treatment and beyond.

Thank you. I just keep thinking maybe my symptoms were down to piles etc as the colonoscopies never showed anything and hope it started growing for a shorter period. But I don’t know. I think you are all right, once the scans are done and I have a plan that’s got to better than now. This.waiting is awful as I’m sure you know. Thank you for reaching out. This forum seems to be the best place for me right now. 

I live in Australia and I have found this forum to be absolutely vital to my well being during and after my treatment. To know that you are not alone and to get advice and warm wishes from others in this community that you would rather not belong to(!) has been a lifeline for me. Also, I discovered the word ‘scanxiety’, which is something we all go through and is a real thing! Take care and go with the process. Trust your medical team and stay in touch. xx

Oh Irene 75359, I totally get why you didn’t tell many people about your diagnosis. My extended family are all in the UK and I couldn’t bear to tell them - it would have been worse for them not to be able to see me and hug me and feel they could be of help. I also haven’t told many people in my social group about my diagnosis - I was lucky in that from my outer appearance, no-one would have known I was going through the treatment, but of course it was important to tell those closest to me. And also to allow my husband to confide in his close friends. It’s hard on those that love us as well. Thank God for all of you in this group.