Hi, new here

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Hi, 

I’m a 44year old who’s just been diagnosed with Anal Cancer, it was picked up on Colonoscopy.. I was referred to the Gastro team in March because of elevated Calprotectin levels, and they wanted to rule out Crohns or Colitis as I had also been experiencing some faecal urgency /incontinence.   Thankfully ai was deemed a high risk cancer as unfortunately I’ve lost both parents to cancer before they were 60.

Anyway, I saw one of the Registrars from Gastro team on Monday,  who told me the findings of the biopsy taken colonoscopy, he wasn’t able to answer any questions, saying it was a rare form of cancer and all he knew was that it was AIN3 /stage 0 - and that i’ve been referred to a Colorectal surgeon.  I’ve been coping pretty well until today, but have found myself to be highly emptional today and thinking all sorts.. 

The waiting for an appt is so difficult.

I have no idea what to expect, i’m trying to continue to work, I’m a health visitor so public facing role  (dealing with other peoples traumas, safeguarding etc) and i’m struggling. And scared. 

Grateful to have found this forum and to be able to read of peoples experiences and success stories. 

  • HI Worried,

    I'm SO sorry you too have this miserable cancer and are facing the treatment regimen, but good for you for finding your way here so early in the process. I sure wish I'd had this forum while I was in the trenches! But better late than never.

    The waiting is the WORST. But if your trajectory runs true, you'll be hustled into treatment tout suite and so busy with all of it that you won't have much time to think and let the anxiety and emotions roll up. 

    I don't know what a a health visitor is, but it sounds as if you help folks find tools and coping mechanisms, which will serve you well. There's almost no way to proceed serenely and without fear, but you sure do learn to ride the waves of jittering and keep plugging on, day by day and, when necessary, moment by moment.

    Your youth and the fact that they caught your cancer so early weigh heavily in your favor, despite your family history. Before you know it you'll be on the far side of it all, and helping new people as they show up on the forum.

    What sorts of questions or worries are uppermost for you?

    Hugs

    Suz

  • Hi  , 

    Firstly welcome to the Macmillan online community although I’m really sorry you find yourself here.  

    I’m so sorry to hear that you lost both parents to this damn disease, life just isn’t fair sometimes is it?… It must be quite disarming for you when in your professional career you’re the one that’s usually supporting others through difficult times & now you find yourself needing some support yourself but you’ve definitely come to the right place & as Suz has said you have the knowledge & tools that will stand you in good stead. 

    If there’s a positive side to all of this it’s that you’ve been picked up extremely early stages therefore any treatment that you have will be deemed curative. I was diagnosed T1N0M0 so just a little further on than yourself & here I am almost 5 years down the line cancer free to date & hopefully I’ll be discharged at my next appointment (due next month). Lots of people here have unfortunately been misdiagnosed for a long time with things such as haemorrhoids etc., & therefore are staged much later than you & I, please don’t get me wrong I’m not meaning that our diagnosis was any less traumatic but down the line I now thank my lucky stars every day that my GP was so vigilant when I saw her in the very beginning & got me referred immediately. 

    The waiting for appointments in the beginning is so difficult, your mind is in overdrive from your diagnosis & you just want things to move faster but again as Suz has mentioned when the ball starts rolling things usually move pretty quickly. 

    Please just ask if you have any questions at all, we’re a friendly, supportive, open minded bunch & nothing you ask is too personal so please don’t hesitate. 

    Remember we’re here to support you however we can. 

    Nicola 

  • Hello Worried

    We all remember only too well the utter shock at finding out that we have cancer and the trauma of all the mixture of emotions that follows - I really do feel for you and to have lost both your parents to cancer when you were relatively young is so sad.  And I am not surprised you are struggling with work when you mind is running haywire.

    The good thing is that you will be fast tracked for treatment, so hopefully you won't have lots of waiting.  There are some gaps between appointments and scans until the team decide your treatment plan, but once you know what is happening things always seem better and more positive.  It is seeing a light at the end of the tunnel that makes all the difference.

    The forum is such a wonderful resource and quite honestly I couldn't have done without it; I learned things on here that I didn't know in spite of having exemplary care throughout.  And of course if you just want to offload more about your fears, there are lots of kindly listening ears.

    I hope that your appointment comes through very soon, I am thinking of you.

    Irene xx

  • Thank you for the reply, its all just sinking in now.  Hopefuly, the wait won’t be too long. I will definately be using this forum - its so helpful al reassuring reading about others that have been through similar experiences. x

  • I just feel a but numb, and not sure what I should be doing… go to work as normal or stay home? I’m mindful that while good work is good for you, thats fine but likewise, dealing with conflict and high stress situations is not a good idea at the moment for me as i’m  really struggling with anxiety..  But physically i am well..  

    Hoping that a referral for opinion from a specialist in London (i live in rural North Wales) means that there is an option of suregery as they have caught it early? But then I think I shouldn’t raise my hope about that. And this is what my mind is like, back and forth, questions, worry… 

    Its just a horrible time, but thankful i’ve found this forum i have a feeling i will be using it a lot xx

  • Hi again  ,

    My tumour was 2cms in diameter & 2mm deep. When I had my diagnostic scans (CT & MRI) it wasn’t visible on either & there was no spread to lymph nodes or any other organs so my colorectal surgeon opted for surgery as first line treatment, he told me at the time there’s only 1/600 cases of anal cancer that’s diagnosed early enough that they qualify for local resection. When the pathology came back he’d achieved a 4mm clear margin on the majority of the tumour but a small area close to the sphincter muscle had only a 1mm clearance which is cut off for further treatment. I had a meeting with my oncologist who offered me into the PLATO clinical trial, the leg of the trial I was on involved 23 days of chemoradiotherapy opposed to the standard 28 with a slightly reduced strength radiotherapy, he described this as mop up treatment for any stray cells that may still be lurking. 

    Please make good use of us here, it’s enough sometimes knowing there’s others there that know exactly what you’re going through. 

    Let us know how things go.

    Nicola