Just wanted to say "Hi"

Hello Nikki

A warm welcome to the forum although I am so sorry to hear of your diagnosis.  You have definitely come to the right place as every one of us have heard those words and can empathise with what you are going through right now.

Your reaction is totally normal; sometimes when we hear of any major issue in life (our health) we experience emotional numbness. It's the mind's way of self-protecting and helping us cope when we're flooded with huge emotions; the reality does come once all the tests, scans and preparation for treatment starts. 

Are you having chemo/radiotherapy?  This is the standard treatment and it can be brutal but it is short and sharp and very successful at eradicating this type of cancer.  We have lots of tips and coping strategies that we will share with you once you know when everything is going to start.

The subject of 'anal' cancer does come up every so often and many of us feel exactly as you do but the fact is that if you have ever been sexually active you are at risk from this type of cancer, and there are only a few of us who have never had a sexual experience.  I certainly enjoyed my youth and wouldn't change a thing, but somehow the stigma of anal cancer is still around.  I have gone through different stages in thinking about this; at first it was I should be open, then it isn't anyone else's business and then took the easy way out and said I had rectal cancer (true actually, my tumour was in the rectum).  The odd thing was that people I didn't know well would ask me what type of cancer, whereas those close to me were just sad that I had cancer at all.  I didn't have much choice as I had systemic chemo first and lost all my hair and it was obvious I was having cancer treatment.  If I hadn't I think I would have just told immediate family about the diagnosis.  But take your time to think about it and just do exactly what you are comfortable with.  And you certainly won't get any judgment here!

Nikki, you haven't offended in the least and please remember that anything and everything gets discussed here, this really is your safe place to share.  We are here to offer support at any time should you need it.

I am thinking about you, please let us know how you get on at your next appointment.

Irene xx

Hi Nikki

I'm so sorry to hear about your diagnosis. I am 6 weeks post chemoradiotherapy treatment and ALL the time keep thinking when am I going to react to this life shattering news, I have cried a few times but nothing like I would have expected.  I feel that I'm having to comfort everyone I have told rather than thinking about myself.

I too 'blurted' out the type of cancer I had to my boss the day after I fouund out as I was in complete shock and then was mortified after reading up causes of anal cancer. I'm a woman who was only 51, married 22+ years and was pretty shocked when I read up about it.

I initially confided in a close friend who is a GP and she said your only factor really is your a woman over 50 (& barely that!) She had said look just tell others who ask that its a type of bowel/GI cancer and hope that suffices tho as Irene mentioned people ask questions. I was genuinely horrified at a number of people that I told asking so many questions as to where exactly/type/tumour size/stage/symptoms..the list of questions I had was awful I felt.  If someone had told me they'd cancer I would never start asking such inappropriate questions - that's just how some people react so just be prepared to cut them off with your answers. They do not need to know, nor should they be asking!

I don't think l there is a right or wrong way to react tho I still feel I haven't even begun to come to terms with it. I constantly feel like I'm talking in the third person and that it's not happening to me. You will deal with it in your own time but the main thing I can say is try and stay positive,  I struggle with that but try really hard. Also as Irene says you'll know more after your meeting tomorrow but if it is the chemoradiotherapy route it is tough but the weeks of treatment do pass surprisingly quickly. Big hugs & prayers. 

Andrea

Thank you so much Irene for your response and kind words.  Good to know I'm not going mad.  I've not had an easy life so the point about emotional numbness makes sense.

Yes, I'll be having chemoradiation, haven't got a start date yet but told probably in about 3-weeks.  

Completely take onboard your comments about what type of cancer and I think I'll take your tip and say rectal, if anyone asks.  I've experienced the same, people close don't ask and others want to know.  But, I will take your advice and go with what I feel comfortable about.  It's a lot isn't it to process. 

It's so good to have this forum.  I was just researching earlier and discovered it and whilst everyone here is going through a dreadful time it's good to know I'm in a safe environment with others that understand and can share experiences.  Thank you.

Thank you Andrea, sending you big hugs too with your recovery period.

It's odd isn't it as I'm more concerned about everyone else and the fact that I'm given such awful news to friends and family rather than it's actually me and yep, I'm referring to 'it' in third party too and I feel completely removed from it.  I've not cried, screamed or reacted in any way.  It could be that my consultant told me I'd got a spot on my nose, that's it.  Funny how the mind and body works to protect.  

Like you I blurted things out to my manager and the rest of the team I had anal cancer and in hindsight wished I'd kept it generalised.  I'm going to think about what I say moving forward.  I'm with you, I would never ask loads of questions for someone else.

I've read the treatment is tough so not looking forward to that (not that anyone would be) but been told it'll be 6 weeks which isn't that long.  

Thank you so much for your message, really appreciate it xx

You are doing well and coming to the right place for info. I was diagnosed in Jan 2024. I went in for removal of very symptomatic hemorrhoid. Turned out to be anal cancer. I was in shock, denial, embarrassment for a month. I decided I would only tell a few close friends and my close family the primary site. I've told church and distant friends that I have a rare GI cancer that needs some rough treatment but is curable. I am staying away from all my activities due to immune suppression from treatment. The only people I am seeing love me , support me, and know about my diagnosis.

It IS embarrassing. I know it shouldn't be, but it is. I even worked in cancer data research for 30 years and still don't want to tell any of my colleagues. You don't OWE anyone an explanation.

I had one acquaintance come in like a freight train, wanting every detail and going to take me to appointments etc. I barely know her. I had to say STOP. I am a very private person and I am keeping a lot private. I don't need you to "solve" it for me. I told her I was collecting Bible verses to encourage me through treatment (I am Christian) but she never sent me anything and has never checked in once. She just wanted info. 

All that said to encourage you to be your own Advocate. You owe yourself all the care and time you need. This is a season when it's all about you and you only. You don't owe anyone anything today.

Take care of yourself and you've got this. You're strong and brave and you will get through.

Thank you so much for your kind words and I’m sorry to hear about your diagnosis.

Sounds like you have a good support network of friends and faith. 

All the best to you on your recovery journey, Nikki xx

Hi Nikki welcome to the group we would rather not be in. I am over 2 and a half years post treatment and can still remember that very moment my specialist, after doing a removal surgery, told me they found cancer cells in the margins and I would be having treatment. I think I just sat there with my husband in shock and went home planning my end of life and saying what pieces of jewelry I want leaving to my children. I was naturally frightened and found this site which was my saviour being a source of tips on how to get through it. As said the treatment isn’t easy but we all react differently with some having a tougher time than others. The side effects accumulate as the weeks pass but you don’t get all of them unless you are extremely unlucky. I told my family and some close friends who were mature enough to not be stupid about making judgements. We have heard HPV has quite a high risk of anal cancer but anyone who has had even sexual contact can be at risk of the two main strains that cause it.  When you start your treatment the weeks pass by so quickly and you will find all your energy is taken up with getting better and not what unimportant people think.

I attend a fantastic post cancer group run by a local charity and all the ladies are lovely and I have only known one ask what I have had and I just said Anal cancer and they didn’t bat an eyelid. I know over 85% of them have had breast cancer as they do talk about it but I just do my thing and they respect everyone who doesn’t want to talk about their cancers. I only have here to unload what happens to our bodies and how others managed and I really would have struggled without these fine ladies and some men on here.

When you get your dates you will feel more in control and things will start to get real. You have summer approaching and I spent my time in a lovely cocoon garden basket out in the garden enjoying the sunshine and looking forward to a healthy future. Some times things get bumpy but you learn about your body and how to cope.

Keep us informed how you get on

Julie

Thank you so much for your kind words Julie and great to hear you are now post-recovery and enjoying life again with a great support network.  

I stupidly went to my consultant appointment on my own (don't have a partner) as I firmly believed the news would be positive.  The surgery itself was harrowing (similar to yours by the sound of it) and I was looking forward to drawing a line under it.  Little did I know!!

I think, as you've said, once I have dates etc I can get a plan together.  I'm naturally an organised person so like to know next steps!

I have my oncology appointment later today so I will no doubt get more details later today.

Thanks you Julie, lots of love, Nikki x

Hi Nikki

Commiserations on joining us all and the very best of luck!  One thing you might like to mention to people is that young people are lucky today in that they are given an HPV vaccine at school so are less likely than us to suffer this horrible cancer!  I've even mentioned to my now grown up kids that they might like to investigate getting a vaccine.

Carole

Hi Nikki,

So sorry you've got this awful cancer, but happy that you've found this forum. It's such a help.

Anal cancer IS embarrassing. I genuinely don't care what most people think about me and even I struggle with the reaction the very word gets. Some choose to keep the info totally private, some to be very forward about being out there and lowering the stigma. We all handle it as we need to. It's hard to deal with sometimes, as even within the cancer medical community I've found the stigma to be negativein some cases. 

You'd have a hard time offending anyone here. Here is where you come for support and suggestions. We don't have many secrets here!

:D Hugs

Suz