Anxiety

Hello LCraig

I am so sorry to hear of your diagnosis and I confess I had to look up melanoma anal cancer as I hadn't heard of it.  The treatment doesn't seem to be the same as for squamous cell carcinoma so I am completely in the dark of the next steps for you.  But a warm welcome to the forum in any case and I am really sorry that I don't have any common ground.

But from what you say the fact that the cancer is localised would appear to be good news although I am sure you are struggling to find anything good about a cancer diagnosis.  That is something we all have in common and all remember vividly and your feelings must be overwhelming right now.

There is a MacMillan melanoma forum but I couldn't find one for your specific type of melanoma and in any case, you are more than welcome to post and share on here.  We are always here to support those with a cancer diagnosis should they want it.  So if you feel up to it or want to, please let us know when you have more information.  Or if you just need someone to commiserate, our lovely members will do that too - our experiences may not be identical but your feelings sound so familiar.

Sending a big hug

Irene xx

Hi LCraig

Like Irene i had to look up your type of anal cancer on macmillan site, it had 3 different options for treatment which im sure your oncologist will discuss with you. Have you been given a contact number for your specialised nurse, if so maybe give them a ring to confirm everything. I didn't really ask many questions at the start but then i got myself a note pad and kept it with me and wrote down every random thought and question that came into my head and asked them at each appointment, some of my questions I know were stupid but I still asked them and my oncologist answered them all. Your feelings are perfectly normal and valid, I think you experience so many different feelings when you have a cancer diagnosis and they go backwards and forwards. The fact that your cancer is localised I would think is a good thing. Sending hugs. Xx

Hi LCraig 

It can be difficult to take in everything in appointments and we don’t always absorb every bit of information. Anal melanoma is very rare, so could you have maybe been mistaken in what you think you were told? 

Before you rush ahead with searching for information online, my recommendation would be to phone your nurse or the consultant and ask for them to confirm your particular type of anal cancer you have been diagnosed with. I see you have an appointment this week, where everything should be fully explained, but it’s worth a call today to check to be sure.

Sarah xx

Hi Irene75359 

As the diagnosis is anal cancer, the best place to post is here in the anal group. As you say, there isn’t a subgroup on the melanoma forum and it’s very rare, so it may not be likely to get replies in that group. Best to post here where you will all be able to give help and support.

Sarah xx

Hi SarahH21,

Thank you for your reply and good advice.

I will give them a ring just so I know where I stand.

I also think searching on line is not a good idea and I am going to stop doing that. I need the expert to tell me how it is, which may not be as bad as I am thinking.

 Thank you again. xx

Hi LCraig 

I‘m not a fan of Google for answers unless I know what I’m looking for, so I didn’t do any searching at all when I got my cancer diagnosis, or even beyond that. I put my trust in my doctors. I can remember on many occasions at appointments not picking up on everything I was told-being anxious makes it hard but I took my partner to everything after my original diagnosis-I then realised how much I had missed! 

I hope you can at least settle your thoughts if you get the right confirmation of your diagnosis, and your next appointment will have it all explained. Good luck!

Sarah xx

Hi LCraig ,

Like Sarah has advised I would try & clarify your diagnosis with someone from your treating team. There is so much information coming at you at those first appointments then add to that the stress & shock of receiving a cancer diagnosis we struggle to take it all in & I for one had to speak with my nurse a couple of times to clarify things. I had awful trouble retaining any information in those early days & had to write everything down! So any questions that pop into your head between appointments jot them down in a notebook & take it with you to appointments & you can also record any information given to you in there too.

When I was diagnosed back in 2018 (squamous cell carcinoma anal cancer) my colorectal surgeon explained that it’s akin to a skin cancer but obviously in the case of anal cancer is treated differently. If your diagnosis is melanoma rather than squamous cell carcinoma then yes it’s much rarer & treatment options may differ but you’re in the right place & we’ll support you however we can. 

I hope you manage to clarify things soon.

Nicola

Hi Nicola,

Thank you so much for your kind and thoughtful reply.

I have always dealt with medical appointments independently and on my own, but at my next appointment I am going to be joined by partner who is excellent at asking the right questions and noting the answers.

It is a scary time and my anxiety has got in the way at times of my asking the necessary and important questions. This is because there’s a big part of me that wants to be in denial and not know all the important facts. I will get there.

Thank you for sharing your experience.

Neil.

Hi again Neil, like you I generally attend medical appointments alone, I was alone for my diagnosis & apart from my initial appointment with my colorectal surgeon following diagnosis I attended all of my appointments alone thereafter, my lovely dad, who I sadly lost earlier this year, insisted on coming to every single treatment session with me though & kept me smiling throughout. 

I think you’ve hit the nail on the head about there being an element of denial at the time of diagnosis, this was definitely the case with me & I think a lot of others would agree with this too. 

My tumour was also localised & early stages & I had local resection surgery as first line treatment but due to a tiny portion of my tumour only having a 1mm clearance I went on to have a reduced course of chemoradiotherapy. If your particular diagnosis does turn out to be melanoma I have a friend that had a stage 4 metastatic melanoma diagnosis a few years ago which had spread internally too & she had immunotherapy following a couple of surgeries & is cancer free to date & doing really well so as difficult as it is right now try & stay positive. 

If you feel up to it please let us know how you are when you have some news. 

Nicola