Newly diagnosed and terrified

Hello Bubbzee

So many things I want to say but first of all I am so sorry to hear of your diagnosis and that you have had to find us.  That said, just about everyone on here knows what you are going through and can truly empathise.

First of all I was not immune comprised so can't offer any advice on that but I am sure there are a few other members on here who are and I am hoping they will pick up on your post.  However, and I could be wrong, I don't think it affected their treatment in any way.

What to tell people?  This has come up before, as you can imagine, and people deal with it in the way best suited to them, there is no right or wrong way.  What is important is that YOU feel comfortable when and if you share what is really private information pertaining to you - we don't ask others the finer details of their illnesses and not should you feel obliged to share yours if you don't want to.  Our cancer comes under the umbrella of lower GI cancers.  My immediate family knew and a couple of close friends but I was amazed when casual acquaintances would ask all sorts of really personal questions (which I didn't answer!)  Finally, and most importantly, having anal cancer has absolutely no shame attached to it at all, anyone who has any sexual experience is at risk and that covers a huge percentage of the population.

In the early days of diagnosis life is a whirlwind of scans and appointments and there is a lot going on behind the scenes.  MDT (multi-disciplinary team) meetings are held when all the information is gathered to determine the best treatment plan for you and once you have your treatment plan you will feel a lot more in control of what is happening and your life can move forward.

I am keeping everything crossed that your scan results are good and that treatment will start very soon.  We have lots of tips and coping strategies we can share, and are always here to support too, if you need it.

Big hug

Irene xx

Hi Bubbzee, welcome to the group. Every one of us on here was in exactly the same position or caring for someone with anal cancer feeling like you are right now. Firstly I am glad you have found us and will get lots of tips on how to manage side effects and pain. When I first was diagnosed Macmillan and the cancer research site are the best sites for information about Anal Cancer. It really isn’t something to feel ashamed about and we were just plain unlucky as 90% of sexually active men and 80% of sexually active women will have had this virus and our immune systems will usually get rid of it within two years but unfortunately we were just unlucky. I read somewhere in my case that when women are going through the menopause your immune system takes a dip and that might have affected me. When I started treatment I only told my family and a couple of best friends and those who persisted in finding out I would just avoid as they were just being nosey and it none of anybody’s business whatsoever as to what type you have. As Irene has said lots will be going on with scans etc and when you get a start date you will feel a bit more in control. You will have us to help guide and support you. Keep us posted on your progress 

Julie

Hi , bubbzee, 

it is terrifying when first diagnosed but this forum has been my best friend throughout my treatment and now 5 weeks post ..

I only told my close family and friends .. I laughed about where the cancer was , rather than feel embarrassed .. as Julie has said , we are the unlucky ones.. I have an autoimmune condition , so stayed away from the pain relief , kept away from most people for a couple of months and worked through the side effects … 

you will be fine … upwards and onwards 

Take care 

Chrissie xx

Hi, I’m so sorry to hear of your diagnosis but you are absolutely in safe company.

Be kind to yourself processing the information and next steps.Share, when you are ready, with those you wish to. I was embarrassed too so with some people I said ‘bowel area’.  You’ll be surprised that most people won’t care where it is. (My cancer and location sounds very similar to yours).

When you start your treatment they will keep a close eye on you and your immune system and how your body is coping but ask if you are unsure. 

Such a lot to take in but this community is a great support. 

Very best wishes, Nikki x

apologies for not getting back to you all before now. I did want to process everything you have said.  I am one of the lucky ones as I already have many doctors up at King College Hospital. The consensus is that due to taking a drug called Azathioprine (immunosuppressant)  for over 30 years has been the main reason behind this cancer.  I have had many squamous cell cancers removed from my skin.  I have had the results of my PET scan and it shows no spread other than taht which I mentioned earlier into the vaginal wall. 

The doctor explained that due to th radiotherapy I may need a ‘vaginal’ dilator’ or that the area between the rectum and vagina ( cannot believe I am saying this) may disappear. Has anyone had experience of this?

I have been having biopsies fro AIN3 for many years and nothing has changed. However in May I was told the biopsies were ambiguous and they were referring me to Homerton Hospital. Under the care of Ms Tamzin Cuming I would have ablation under laser. Both the department and I had no reason there was anything else other than cellular changes.  When they did an MRI that morning thy saw the tumour and like I said previously it was 5cms.   Without going into it both Ms Cuming and my eminent neurologist at Kings have shown surprise that it has not been found earlier.  I had biopsies as late as may 2024 and it was not found.  Should I continue to feel angry?  

At present I am due to be ‘discussed’ on the 16th and the timeline for the radiotherapy to start is the end of August. 

Lastly and then I’ll leave you all in peace.

I am a very active person who does not like to not be. I have been told that my tiredness is a given post radiotherapy. Is this right?  I know the oncology team will help with this but I wanted to ask the experts?  I do a lot of voluntary work with charities and am a peer supporter.

I am often told I am the patient expert. As you have already been or are going through this I feel you are the experts and so am coming to you all!

 I had back fusion in January and within a week was pain free and up and running - figuratively speaking.  Will I really feel so dreadful. As It is I am scheduled to have 6 weeks - Monday to Friday of radiotherapy and one plasma exchange on the weekend. For my neuromuscular condition. I understand I will feel tired but everyone is saying I will be REALLY tired. 

Apologies if I have rambled on a little. I hope you all can mange a good weekend. Best wishes to you all

Hi, come on this forum as often as you like, you are not alone in your journey.

I'm sorry to hear all you have gone through. 

I know you’ve probably been told this but everyone is different going through treatment and recovery. I coped until week 3 then began getting really tired and still to date suffer with fatigue. Some days are good. (I’m just 9 weeks post treatment of 5.5 weeks of chemo and radiation). Key is to go with how you are feeling one day at a time. If you’ve always been quite active you may not suffer fatigue too much, it’s difficult to say.

Try and carry on with your normal life activities as long as you can. I worked (mornings before treatment) up to 4 weeks of my treatment but then found mentally I needed to concentrate on my treatment and body/mind. 

If I could go back (which I wouldn’t want to do) I would have asked for pain relief earlier than I did though. I tried to be brave as long as I could but then I found I needed stronger pain relief to cope as it was near to the end of treatment. Again, everyone is different but tune into your body. 

With regards to the dilator, try and put this to the back of your mind for now as this will be post treatment. But yes, I have to use one too. Your MacMillan nurse will talk you through it but it’s not as scary as it sounds, just something you may have to use for a short time post-treatment. 

Post as many questions or concerns you have in here. You are in good company as we are all here to support each other. 

Best Wishes, Nikki x

I can relate to everything Nikki2024 has said. If you are normally very active then that can only be a good thing when you have had treatment and push yourself back to getting fit again. The treatment is harsh and why wouldn’t it be as it is fighting cancer is not just a cold and some of us do recover much more quickly than others. Please don’t feel you can’t come on here to have a moan as that’s what we are here for and moan away. Get a sitz bath ready for the start of your treatment to help soothe the effects of the radiotherapy sessions. We talk bum, anus, pooh, vaginal dilation and the lot. never talked about bowel movements before all this but at the end of the day we all have them! 

Julie

You are so right Julie , we talk quite openly about our rear ends !!!! Does anyone know if you can go swimming 2 months post treatment or have highlights in your hair ? 
enjoy the sun everyone 

Chrissie xx

Hi Julie, not sure about swimming but hair highlights are at least 3 months post treatment.

I saw my hairdresser recently and couldn’t have any colour, unless it was just a ‘tint’ in my hair. She said as long as the treatment is still in your body it’s a ‘no’. She has a lot of experience with cancer and treatment too. 

I’ve decided to embrace my roots!

Lots of love, Nikki x

Hello Bubbzee

I think if you were to ask every person who has used to forum, not one would have had an identical experience to the next.  That said, fatigue is very common during and after treatment and for some (me) that fatigue can be an ongoing issue and I have just adjusted my life around it.

I don't know about the area between the vagina and the anus, the perineum, actually disappearing but that may very much depend on the area that is targeted during radiotherapy.  What I do know is that I have been left with extremely thin, sensitive skin there.

I can understand you feeling anger at a tumour being missed - my 'polyp' was biopsied in 2017 and noting was found.  But by 2021 I had a CT scan which showed a tumour, and it was submucosal but even then subsequent biopsies were inconclusive.  But they knew by then that there was some form of malignancy there and I had to have several procedures before the cancer was identified.  I really try not to over think it as I really think (in my case) it wasn't negligence but my bad luck.  But to miss a 5cm tumour is somewhat surprising, to say the least.

Please don't ever worry about rambling on here (and you didn't!).  This is probably the only place where we can really discuss every single aspect without judgment and most importantly, with those who know all the nitty gritty of treatment and beyond.

We are always here!

Irene xx