Hello everyone, nice to meet you...

Hello glassyliz 

A warm welcome to the group, and you are quite right, although we develop online friendships we would all rather not have this disease in common.  But you have come to the right place for all the information you need and online support from a really friendly bunch of perople who know exactly what you are going through.

I think most of us have the same issue too around 'anal' cancer.  When I was first diagnosed I didn't even want anyone to know I had cancer (even though I was going to lose all my hair) and then when word got out, I was amazed that people that I barely knew would ask me what type of cancer - which is a really personal and private question.  So I went full circle from keeping the cancer quiet to feeling I should let everyone know that it was anal cancer but in the end I just told a couple of very close friends and my immediate family.  And it comes under the umbrella of a lower GI cancer.

Your partner could be blaming themselves totally unnecessarily; the fact is that almost everyone who has been sexually active carries the virus, it it just a small percentage that go on develop various kinds of cancers.  So he may well be innocent in all of this.

The main thing is that you have your diagnosis and hopefully treatment will start very soon.  With your background I am sure I don't need to tell you about all the MDT meetings going on in the background, but once you have your treatment plan in place you will definitely feel a lot more positive that you do right now.

So please let us know when treatment is due to start, we have lots of tips and coping strategies.  It is a tough course of treatment but has a very good success rate and in the grand scheme of things won't last nearly as long as the six months you have already been through.

A big hug from me to you and also to your partner; he needs to shed his guilt!

Irene xx

Ooh, I love the term "lower GI cancer" I haven't come across that before, but so much "kinder' for the listener and "anal" ;) (yeah, I do know it's their problem, but when it's people you care about... ;) )

It's going to be maybe 6 weeks before I get a treatment plan (the next MRI isn't until the end of this month, so it's gong to be a couple of weeks at least after that))

Thank you SO much for your reply.. it means the world (and my partner is being a typical man.. bless him.. I have done my best to reduce the guilt, and he won't come here himself in a million years!!! - what is it with men, eh?? ) But he such a wonderful man, sometimes it takes him a while, but he eventually gets it.. so, maybe next year he may come to ask questons??? lol

Hi glassyliz, and welcome.

You have addressed so many of the issues affecting us with AC; I didn't tell many people, initially, I could just imagine them all Googling it and going 'WHAAAT...??' To be honest, I didn't realise some cancers were sexually transmitted until I got it. I now don't think people think that way - might think 'Ew, how nasty' but they won't be thinking anything more of it.

In the end I had people I told, and people I have not told to this day. I suppose because the treatment was so quick, for people I had not seen regularly, I just stayed out of the way until it was all done, and then appeared again 'normal'. As time has gone on I have been able to tell people without feeling embarrassed, although I think the fact you don't hear much about it contributes to our embarrassment. There has been quite a lot of publicity about oropharyngeal cancers like throat and tongue - Rhod Gilbert the comedian did an excellent channel 4 documentary about it, and Bruce Dickinson from Iron Maiden writes a lot about it in his biography - but not much about AC although they are very similar.

My husband of 30 years does not have HPV, seems his body was able to deal with it, as most people do, and mine wasn't!

Anyway, don't be lonely; there are quite a lot of us out here, with different experiences and different approaches. Once things get going for you, you will start to feel much more in control and that progress is being made in getting you better.

Stay in touch and let us know how you go. xx

Hello Glassyliz,

A very warm welcome to the forum although of course you would rather not be here. 

I want to say that it is absolutely not just you. I was utterly mortified when I was eventually diagnosed in September 24 and remember thinking- how on earth do I talk about this.   

In the end I told close friends but there are many people including some family that still got the lower GI diagnosis. I just didn’t feel comfortable talking about it although I know that this just adds to the stigma. It’s a personal choice and just say whatever you’re comfortable with. The key thing is that those close to you know that you’re battling cancer and will want to support you.

The diagnostic journey is often a long one. For me it was 9 months and I know it’s been longer for others.

The positive thing is that you’ve found this brilliant forum where there is so much guidance and support. 

It’s so devastating receiving a cancer diagnosis and I hope that you get your treatment plan very soon. 

Please don’t feel lonely - we are all here for you.

Xxx

Hi glassyliz Another welcome from me. Personally i wasnt bothered about saying i had anal cancer but i did find most people then said oh bowel cancer and to start with i would correct and explain but after a while i just let people think whatever my point being from my experience most people seem to assume something different. Your partner is defo not to blame ( i hope you can get him to read some of these replys ) the majority of the population who have been sexually active are infected with HPV and for most it lies dormant and causes no problems, for some it flares up for a while and then shows in a test if tested in the area it flares in but again causes no issues and goes dormant again and for the unlucky few it flares and causes problems. This is a curable cancer and the treatment has a good sucess rate. I wont lie its not a walk in the park but it wasnt as bad as i had expected. Sending hugs. Xx

Hi glassyliz  & welcome to the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis. It really is an emotional rollercoaster. 

Like with Irene I really didn’t want the world & his wife knowing that I had cancer let alone what type! I initially told family, half a dozen close friends & my manager at work. It’s only since completing my treatment & having around 3 or 4 years clears scans etc., that I began telling people, when anyone slightly removed asks what type of cancer I had I just said lower colon, which isn’t really a fib is it? What I have often felt like saying is ‘what’s it got to do with you?’

I agree that now definitely is the time to look after yourself, I can kind of understand the way your partner must be feeling but he needs to understand there’s no blame to be had. Once I found out more information about HPV I realised that almost everyone that has been sexually active will have come into contact with HPV & it’s just unfortunate that some strains are more difficult for out bodies to clear & a small number of those result in a cancer diagnosis. 

You’re going to have a lot of information coming your way over the next few weeks so please if there’s anything you think we may be able to help with just ask. Hopefully you’ll have a treatment plan in place really soon. 

Nicola 

Hi and welcome

For me it wad difficult at first especially given that im a gay man and I often wondered what people think of me and wonder how I've developed cancer.

That said, as a nurse, I've also looked after people with lung cancer who have never smoked, people who have hiv who dont fit the usual stereotype. 

Whilst there are risk factors its not necessarily the case that we aquire these illnesses in a certain way so in the end I chose to be open about it to a degree. Friends and family tend to know but I usually describe it as a cholerectsl cancer of some sort or rectal cancer.

I asked my Dr the likely cause and she said it's hard to say as it takes a few hits on the cells such as health status hpv personal practices etc and that cancer just happens. For me im in my late 40s generally healthy and don't have any co motbidities so I wonder of I somehow caught hpv and its activated itself when my body has been low given a very stressful few year period but I suppose ill never know

I have a history of bowel cancer on my dad's side and lung cancers on my mums side. The women on my mums side tend to live long in to their late 90s though so I wonder of genetics play more of a role than we think

I would try not to get hung up on how it happened etc and remember, just because someone asks it doesn't mean you need to tell them.

You are in the right place here and there are plenty of lovely people on here who can offer advice.

Hi Ian, thank you for that (this is glassyliz btw, for some reason the site wouldn't let me log in with those details, so I have had to create a new profile!!!)

I was wondering about how stress may have played a part in this cancer tbh... I ran a business which was very badly affected by covid, and I narrowly avoided bankruptcy, but what made it worse that if I had folded, most of my creditors were people I called friends.. and I found that really difficult to deal with.. BUT I got through that and out the other side, only to have a complete nightmare to deal with in my family a year ago... then last February I developed A Fib suddenly, (which I still to this day believe was stress related, as it really was just a one off episode).. and it was shortly after than I became aware of what I though previously to be hemorrhoids, had grown.. and that took me off to the docs .. and here I am now with this diagnosis .... so it's been a difficult 5 years!! ;)

We seem to have things in common... my initial career was as a nurse, and both my father and grandfather (on my mums side) died of bowel cancer, so I think genetically I am predisposed to gut issues... and I am now 70, so aging won't help either! So, In short, a lot of factors have probably all played a part, not just the potential HPV infection... so thank you for your thoughts and experiences.

Hello glassyliz,

My husband was exactly the same, wondering if it had come from him, but I soon squashed that pointless line of discussion because anyone who has been sexually active can have HPV and probably does, but will never know it.

I believe that it flared in me because I've had a previous cancer: endometrial. I lost my spleen in that episode, along with quite a few other bits and pieces, so was already immune suppressed. I think it likely that my weakened condition provided the necessary conditions for this second cancer to take its opportunity.

Some of my acquaintances just think my new cancer is the old one come back for another crack at me. If pressed I tend not to respond. It's nobody else's business and I'm not sending out press releases. So, I've only told close family and very good friends.

So please reassure your husband as it's a fruitless waste of time. We've all got a rough journey ahead [I'm starting soon] so keep posting like I'm doing and sharing stuff that's on your mind. It helps to know we're not the only ones who've had the same thoughts and anxieties.

Hugs from Rainie x

1. Hi glassyliz 

And welcome this wonderful forum..

Your post brings back so many memories of how I was feeling 12 months ago..

As well as coping with cancer ..it was all the feelings of potentially being hpv related..

I've been with my partner for 40 years.. so it was such a shock.. I felt embarrassed.. dirty .. and guilty  at first.. but now i just feel relief that I found this forum.. relief I got diagnosed and relief that there is light at the end of the tunnel..

My close family and friends know my ac diagnosis... other people I just say lower rectal.. a lot of people just assume tgat mean bowel cancer..  I don't have the energy or the inclination to explain to them..

Try not to worry about how you got it..ss lots of people on here have said.. most sexually active people have had hpv and their bodies get rid of it within 2 years.. if you have been under stress and your immune system is low.. this is the times maybe our bodies cant fight the infection..

Please don't worry about anything.. reach out on hre if u need to talk.. your not alone x