Hello

Hi Nicky54 Welcome to the club although I'm sorry you have found yourself here. You have had a long road to diagnosis which unfortunately seems to happen a lot with anal cancer, so many on here myself included were misdiagnosed to start with. The standard treatment is chemoradiation and it is highly successful. I found the the treatment while not a walk in the park not as bad as I had expected. We all do react differently though, some on here have just carried on as normal and some haven't. If you get them the side affects don't all come at once though they build overtime but your treating team will provide you with things to help. People who were in pain prior to treatment say the pain goes once treatment starts. You should speak to hospital about pain relief as you are suffering now. Part of my tumour was external and was uncomfortable and the hospital gave me instillagel to put on prior to any treatment starting it numbs everything. Try and keep busy and stay of doctor google. Start moisturising your skin down below to get it in good condition prior to treatment it helps. With regards your daughters wedding I really hope you will be ok for it, if you speak to your team they might be able to work around it. If you have the standard treatment it is 28 daily radiotherapy sessions you get weekends off and then either oral or iv chemo, most on here seem to have oral chemo although I had iv. Any questions just ask, everyone here will support you however you need. Sending hugs. Xx

Thankyou so much , that’s helped so much 

I do feel it’s the fear of the unknown whilst I,m waiting for results of PET scan for the staging etc , I am eager to get started on treatment too but can’t until I have another meeting with oncology team 

I work full time too and want to carry on as much as I can for normality but it’s too painful to sit / walk especially after bowel movement so far been off since 1st May and while off my mind is going crazy with all sorts of thoughts .

Im currently on tramadol and lactulose but feel I need something to keep the pain away around the tumour lump in my bum if that makes sense ?

They also mentioned about a stoma which frightens me so much , I think I will have to decide before treatment starts whether to have one or not have one but again it’s fear of the unknown again ! 

I hope you are doing ok , how far along your treatment are you ? 
Thanks for responding too , it means a lot x

Hi Nicky54 I finished my treatment November 2024 and am currently cancer free and being scanned and checked every 3 months. I have some on going issues from treatment but they are slowly improving and my oncologist isn't worried just says its early days. I chose to not work during treatment, I could have at the beginning but further in it might have been a problem. Financially it was hard but I decided my health was more important, I can't remember exactly but I think I went back to work maybe 3 or 4 weeks post. A stoma was something never mentioned to me but I think some countries do one pre and then reverse post. There is a lovely lady on here called Irene75359 who had an elective stoma post treatment who I know as soon as she sees your post will respond so she may be able to give you more advice on that.

Ask for some instillagel if some of your tumour is external.

Personally I never had one, but a lot of people get a sitz bath and saying pooing into it and the water helps pain wise.

Once you have a treatment plan and dates you will feel more in control amd settled. Xxx

Thankyou so much x 

this helps so much

Hello Nicky54 

You are in that awful place right now where everything is a blur of appointments, scans and meetings.  There is so much going on behind the scenes but until your team has all the information they won't come up with a treatment plan.  And meanwhile you are walking around in a fog of disbelief and fear.  We all really do know how that feels and all the various tests seems to take forever.  But once everything is done and treatment starts, you will feel a lot more in control than you do right now.

Sadly, your account of the journey you had to go through is all too common.  So many people on here have been misdiagnosed with haemorrhoids and had to jump through hoops to get a final diagnosis.  I am really glad that you self-advocated and pushed, although the mind boggles that your GP sent you on a private referral for the investigation when you should have been on the two-week cancer pathway months earlier. 

I had an elective stoma a couple of years after treatment ended, I had continuing bowel problems and my life was so limited and I had a lovely consultant who listened, gave me the option without any pressure and said call me if you decide to go ahead.  And, my experience was that having the stoma formation really was fine - the most pain was in my shoulder (!) which is referred nerve pain as you are pumped with gas to make the op easier.  But I was medicated for that and it only lasted a couple of days.  If I had known that I would eventually have a stoma, I would have pushed for one before chemo/radiotherapy started.  The radiotherapy makes the anal passage and surrounding area very tender and life would have been a lot easier without the 'traffic' every day!  And about 10 days after surgery I was out walking my dog again.  To put it into context, last year I had a small hernia repair in day surgery and that was much more painful.  Please just ask if there is anything else you want to know.

Probably the best thing to do is discuss everything with your consultant at your next appointment; tell him/her about the big date in you diary and how important it is (totally understandably) that you need to be able to do that.  He will be in a better place to advise you.

In the meantime, a warm welcome to the forum; we have all had this cancer and treatment and everyone is so helpful to newcomers; remember you can discuss anything on here.

Big hug

Irene xx

Hello Nicky54

The time between receiving that diagnosis and treatment starting is really the hardest time.

I also wanted to reassure you that the chemoradiation treatment for anal cancer is very effective, even when the cancer is locally advanced.

My tumour was large, anal, rectal, lymph node involvement and locally advanced. I got clear results at the primary tumour site at my last scans. The treatment can be tough, but it is also very effective.

I also elected to have a stoma prior to treatment on my surgeons advice and I consider it to be the best decision. Prior to stoma I lost weight, could not go to the toilet and was in great discomfort. The stoma allowed me to eat again and no painfull BM'S during treatment. The surgery was quick, technically it can be reversed, but I have elected to keep it for now. I find it very easy to manage and it does not stop me from doing most of the things I did before. I am very active and I eat most foods. I wear my normal clothes and have never experienced leaks. With small adjustments it has fitted into my normal life.

Regarding the effects of treatment, I actually had few side effects. I listened to all the great advice regarding creams and got started early, increased my protein intake and kept active.

In the last week I had a few little sore areas and an itchy bottom, but this was healed within the week. I didn't need pain killers and my energy levels came back very quickly. My hair thinned a little, but everything else was normal. Also after the first week of treatment the pain in my backside got better, I was able to sit down comfortably again. 

It's very difficult to determine how your body will react to the treatment, but your daughter's wedding is something to look forward to and could be totally doable.

Keep us posted and ask any questions, we are all here to help.

Ally xx 

Thankyou Irene , 

your advice is very much appreciated ! 

It’s so surprising that the late diagnosis is a common issue , it makes me feel so angry not just for myself but for others here too . 
I will definitely discuss in more depth with the doctor and nurse on my upcoming meeting now , 

I feel less anxious about the stomach option now you have explained your experience 

thanks again x

oh my goodness , thankyou so much for your response , 

This had made me feel so reassured about the feeling of despair and the unknown ahead of me , 

I will start to prepare a list of creams and items to help before my treatment starts now 

I’m ready to tackle this ! 
I feel so much more positive for my daughters wedding now 

Thankyou so much xx

Hi Nicky54 , 

Another warm welcome from me to the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis. I’ll repeat what’s already been said in that unfortunately the long road you’ve experienced to your diagnosis isn’t uncommon in the case of anal cancer & it’s not acceptable! GP’s should have this on their radar as numbers are increasing & as with many other cancers the earlier its detected the less radical the treatment.

I asked my oncologist once why so many GP’s miss anal cancer at the early stages & go on to treat for haemorrhoids or fissures, he said that every patient that suspects something is amiss shouldn’t leave their Dr’s surgery without at least an internal examination. 

Anyhow you are where you are now & we can all appreciate the way you are feeling, the waiting around following your diagnosis is excruciating. 

Most of us here have been through the chemoradiotherapy, some have had stomas prior to treatment starting, some didn’t have the need, some have gone on to have elective stomas post treatment & most have said they’ve been relatively easy to get to grips with & have eased any issues with bowel movements etc., it’s also possible that should you need a stoma prior to treatment that it may be reversible post treatment too. My advice would be to have a thorough discussion with your consultant about this. 

You’ve received some great replies to your post already so I’ll not repeat but know we’re here to help support you throughout this process & please if you’ve any questions at all just ask & we can share our experiences with you, we’ve learned a lot along the way. 

Nicola 

That’s so lovely of you ! 
Thanks so much 

I’m definitely feeling the love and support from everyone on here so far , I’m so glad I bit the bullet and signed up to this forum 

I hope you are doing well now , 

Once again thanks so much for your support xx