Scared

Hello Unknown I have just read your post and want to welcome you to the group. None of us probably wanted to need this group but it is a godsend when you are experiencing fear and anxiety when waiting for a diagnosis or duration of treatment and post side effects symptoms. I can understand your feelings of fear as you are at the moment not knowing what is happening to your body. When I was first examined by my GP just before Xmas she said more or less that it wasn’t right and was sending me for tests. I went home that evening feeling petrified as I originally thought it was just piles. She said it felt too hard for piles and looked very concerned. Waiting to hear from the specialist was very stressful and you just have to go with the flow and keep busy. When I had my first internal examination they found polyps that they were not worried about as the shape apparently were quite common. They said there was an area that would need further investigation. Again more waiting and then eventually the news it was anal cancer. The treatment is very effective and a good success rate. We have had a couple of men on here a few of months ago who I hope will see your post. The treatment side effects does affect men differently compared to us ladies so I cannot say much about that side of things. I can’t see a problem with you phoning your hospital and speak about your concerns and hope they may be able to help your anxiety. I do find they are hesitant to say too much unless they are 100% sure what the diagnosis is as much as we want them to say what we want to hear. I do hope things go well for you but glad you have found us if you need to unload your fears or find good tips on managing the effects of treatment 

Thank you so much for your reply - I’m going. To call the McMillan nurse tomorrow - I also anxious thinking why have they given me a nurse to talk to - is this done for any possible cancers or only for ones that don’t have good prognosis 

Hello Unknowns

i was allocated a contact telephone number for the Macmillan specialist nurse who was absolutely amazing. This I believe is automatic so that you can call with any worries or change of symptoms.  One word of advice is please don’t Google for your information unless using a reputable site like Macmillan or cancer research uk as many are out of date and just doom glorifying. I am 27 months post treatment for anal cancer and now having a great life and feel positive about my future. I was stage 2 and you will find some here who were more advanced and doing well so keep positive 

Hi,

Sorry to hear you've joined our club, but I think it is normal to have a nurse contact when you're going through any potential cancer diagnosis.  Anal cancer is usually Squamous Cell Carcinoma (it is rare for it to be melanoma or adenocarcinoma), but squamous means skin.  I've just finished chemo-radiotherapy for an (internal) anal canal SCC.

There's lots of great advice within this forum, and also on the macmillan and Cancer Research UK pages.  What's frustrating is that because anal cancer is rare, there is not much specific literature on it.

I originally had a colonoscopy which found the offending area, and later had a CT scan and a MRI, and also a PET CT scan as part of the diagnostic (and radiotherapy planning) tests, and they may also take a biopsy (called an EUA - Examination under Anaesthetic) which is a general anaesthetic, but a day procedure.  I had 2 of these because initially my biopsy showed AIN3 but then when they did another one 6m later they then found SCC.

I was able to contact the bowel nurses even when I was going through the AIN3 diagnosis, they're good for chasing things up and explaining stuff.

It's really hard waiting for results etc, but everything took weeks to come back for me, even when the surgeon said they were sending the biopsy off as "urgent" and it should be back in 5 days, it actually took 3 weeks!

Good luck with everything, hope you get some answers soon x

Thank u for your reply it means so much to me more than you think 

can I ask what stage u were given and how you are doing now - are u in remission or cured or NDT - all a bit confusing x 

Thank you for your reply  what stage did u have and are you cured or in remission or still having treatment ? X

Hi I was diagnosed stage 2 and no lymph nodes affected. It has been 27 months since my treatment and I am showing no signs of cancer. You are still under your oncology team for five years after your treatment to keep an eye on things from CT scans and physical examination. If II continue to be clear of cancer after the five years I no longer have to see them. The longer you show no evidence of disease NED is a good sign that it will not return. We do have to be realistic in life and nothing should be taken for granted and after a diagnosis you do look at life slightly differently. We all experience side effects from treatment differently and when reading about them before treatment be warned it can be scary but from reading about them on here I had some lovely advice and you do get through it with the support from your treatment team and practical advice from here. 

Hi Unknown,

NOT knowing is just the worst, isn't it? I'm really glad they directed you here, which is the best place to be for support and help. I didn't find this forum until I was finished with the treatment and well into recovery, which is certainly better late than never, but I'd have loved to have this lot with me when I was in the trenches.

I doubt the hospital will speculate on the cancer type, for the very reason you cite. But if it is anal cancer, it's almost certainly squamous cell carcinoma, not what we usually think of as skin cancer. 

My cancer was T2 N0, so a smallish tumor, and no lymph node involvement. So I got the gold standard anal cancer treatment of 4 days concurrent chemo and radiation (the chemo in a little bulb that I wore around my waist and pumped into me over a 24 hour period, replaced daily, 5 1/2 total weeks of 5-day-a-week radiation, and another 4 days of chemo at the end. 

It's super aggressive treatment, and no fun. The recovery was even harder. But you get through it quickly and that's a huge blessing. I know a lot of folks with breast cancer, which doesn't carry the embarrassment factor of our cancer and also has a high survival rate, but seems to need months and months of treatment. 

It's hard not to google, but do try to resist. It doesn't really answer your questions, just dumps lots of horrifying information into your head with no mediation. If you search this site you'll find better and more helpful info.

Having this place as somewhere to go for help and comfort has meant the world to me. I'm so damn sorry you've (likely) got this miserable cancer, but keep coming here with questions and before you know it, you'll be the one offering support and advice to the new scared folks.

Hugs

Suz

Hi Unknowns ,

Firstly welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us.

At my first meeting with my colorectal surgeon following my diagnosis he explained my diagnosis (squamous cell carcinoma anal cancer) as being akin to a skin cancer. I had local resection surgery followed by s course of chemoradiotherapy. I am 5 years 4 months out of treatment & cancer free to date.

I would be quite surprised if you diagnosis turned out to be melanoma,  the most common form of anal cancer is SCC (squamous cell carcinoma), adenocarcinoma is much rarer but there’s been a couple of people I’ve known to have been diagnosed with this but I don’t think I’ve come across anyone on this forum that has had melanoma. 

The only firm way of diagnosing you properly will be through the tests that have been planned for you & possibly a biopsy whilst you’re having the colonoscopy. 

We all understand the anxiety you’re feeling as we’ve all been there at diagnosis & it really sends you into a tailspin doesn’t it? Please give the hospital a call & see if you can speak with your consultant just to try & have them explain a little better as to what you’re facing. There’s so much to take in at those first appointments that some information invariably gets lost & I’m sure you won’t be the first to ask for a little more clarity & to have things explained again. 

Please come back if you have any questions, we’re here to support you however we can.

Nicola 

In 11/21 I was diagnosed with Stage 4 anal cancer. I had quite a bit of bulky disease in the anus, with a 6 cm circumferential main tumor. I finished chemoradiation on Feb 3, 2022. I did receive an immune stimulant that jazzed up my immune system to kill any residual cancer cells for 5 months. I’m in the USA, so our treatment here is a bit different than in the UK. 

My last three scans have been negative for any disease, and 3 weeks ago I was told that I was “cured” and am now on 6 months f/up.

The reason I’m telling you this is that every person has a different version of this terrible disease, although we all have a lot in common. Worrying about what stage you’re in is not the most important aspect when it comes to any person’s results. It’s all individual. Even me, 72 years old with stage 4 is now with undetectable disease!

In the UK, you have many people to assist you through this mess. This site has many folks who are knowledgeable and more than willing to try to help you get through this, so it’s good you’re here. I’m sure there is someone on this site who is male with some of the same issues that you can relate to. 

Im sorry you’ve been diagnosed with anal cancer, but here’s hoping that you’ll be one of the ones who do well and are able to get on with your life!