Newly diagnosed with Anal cancer

Sounds like a similar diagnoses to mine I got diagnosed with Stage 3 rectum cancer in June 22 and I'm still here to live and tell the tail!

Macmillan support has been vital for me as well as my friends and family. The NHS also do a out standing job and I'm sure you will be taken good care of they are truly wonderful people.

My treatment started with 5 weeks or radio therapy and then chemo therapy which was bloody awful I suffered for a good 3 months with sickness restless legs being wired from the steroids and not sleeping being sick and the amount of time I spent on the loo if I had a penny given me for every time I visited the loo id be a millionaire!

Early April 2023 I was referred to St Marks hospital London to remove the tumour unfortunately my cancer started moving towards my spine so I ended up with a permanent stoma  my coxyic bone was removed my rectum and anus  was removed and stitched up and my bladder was damaged by surgery so ended up with 2 urine catheters for over 6 months I now have a permanent stoma and catheter. I spent 5 wks in London hospital recovering from surgery and had a second operation because whilst in intensive care  I developed cellulitis around my stoma. Still I am making a good recovery and wanting to return to work in the next few months hopefully.

I will say that nothing prepares you for this journey I remember when I was told it was like my life was going along so nicely and all of a sudden someone came from nowhere and punched me right in the face! and looking back I don't know how I managed but I did and I'm still here!

Take all the help you need and talk to partners people friends family etc. I don't give up! focus on the plan ahead there will be hiccups I'm sure Stay strong the sun will shine for you and you can get through this I am learning to adapt with what I'm left with and grateful for all the support I have received has been  overwhelming.

I'm sorry if I have been quite upfront about my ordeal but I don't know of any other way to explain my experience Good luck with everything.

Please ask me any questions all the best Andy.

Wow! Thanks for the honest and upfront news of your journey Andy. You’ve certainly been through the mill with your diagnosis. I’m taking all the positivity from your story and hope I have the strength to deal with what lies ahead for me. I fee I have lots of living still to do.

We’re going to visit our local cancer charity (based at the hospital) for more advice and guidance. I really do want  to be prepared for the worse, which will help me mentally cope with this. 
Thanks again Andy for taking the time to share your story. I wish you well and will stay in touch. David 

Hi Horus64 ,

Firstly welcome to the Macmillan online community although I’m really sorry to hear of your recent diagnosis. Unfortunately misdiagnosis of haemorrhoids is still too commonplace therefore leading to later diagnosis. I don’t think there is such a thing as a glamorous cancer diagnosis but this one really does take the biscuit doesn’t it? 

You'll find the majority of us here have been through chemoradiotherapy with many, many of us having successful outcomes, so please if you’ve any questions please just ask. Personally I’m a little over 5 1/2 years post treatment, I was discharged from surveillance in June 2023 & as far as I’m aware I’m cancer free! I couldn’t take any opiate based pain relief either because they all caused chronic constipation so I went through treatment alternating paracetamol & ibuprofen 2 hourly when needed. If you do need something stronger & find yourself having to go down the opiate pain relief route then ask your Dr for some Movicol or Laxido, these are stool softeners in the form of soluble sachets & they’ll hopefully help combat the constipation. 

Regarding the treatment itself it’s short & sharp but very effective in many cases. The treatment is generally 28 days Monday to Friday with weekends of all treatment. The radiotherapy is over & done within 10 minutes or so, the main side effect from this being the skin reaction which can be like sunburn to varying degrees, some people suffer bowel disturbances although I didn’t. The chemo side of things can be delivered a couple of different ways, mine was a short infusion of mitomycin on day 1 of radiotherapy & then capecitabine tablets twice a day thereafter, some oncologists prefer to administer chemo by infusion via a pump you carry with you during weeks 1 & 5. With the oral chemo I suffered little to no side effects & I didn’t feel ill with it although after around 2 weeks I did feel pretty fatigued which I think was a combination of both treatments. 

I hope I’ve not given you information overload here, again any specific questions you have just ask. We’re here to support you however we can. I hope your appointment comes through quickly for you to meet with your oncology team.

Nicola 

Anytime David I'm 57 and there is still lots of life to live! you can get through it just remain positive and with open mind.

Nicola, thanks so so much for taking the time to send me this note. Firstly, well done you for being cancer free - such amazing news. It encourages me for a positive outcome.

Your note is really helpful and full of useful information and insights too. Definitely not information overload., I want as much as I can at this stage. I do hope I can have chemo in a tablet format and a one off infusion at the start! And short sharp treatment with 10min radiotherapy., despite the side effects, I think I would be able to cope with that.

I’m really glad a started this thread., it’s good to know you’re not alone., it’s just taken me time to process before I could reach out for support here. Thank you again and pleased keep in touch. David

Hi Horus64 welcome to the group. I first saw my doctor two weeks before Christmas due to slight bleeding and after examining me she straight away said she was referring me to the hospital as she knew it wasn’t piles. All through that Christmas I hardly slept and tried to act normal during the Xmas celebrations. I did have a biopsy the February and they tried to remove the offending area with a clear margin but unfortunately that didn’t happen. I too went for the usual gold standard of chemo radiotherapy. I was so scared when my oncologist went through the side effects but she has to do this and we don’t get them all. I have had a couple of blips but coming up 29 months post treatment and life is good. The treatment is brutal but you will cope as you say. I had a fantastic team helping me through it with a 24 hour contact so I could ring them about anything that worried me. Also I had this group for support and tips on what helped on creams, potions etc. I am aware us ladies side effects differ from you gentleman but the skin reaction from the radiotherapy is I would say the same. I am glad we have had  some new men on here who will hopefully see your post. I hope all goes well with your appointment on the 16th.

I’m pleased you’ve found us David but you’re right you have to reach out when the time is right for you, not everyone here feels the need to post either, many get what they need from reading others posts. This group really was my saving grace when I was first diagnosed, I’ll be forever grateful to those members that offered me so much support & encouragement. As you’ve said it’s a massive relief to know you’re not alone in this. 

The radiotherapy seems to be the same for everyone regarding the length of time you’re on the machine regardless of staging, the strength of the radiotherapy can differ from person to person as can the field it’s treating depending on the location of the tumour & if there’s any lymph nodes to be targeted also but it doesn’t seem to take any longer. It really is incredible how quickly the weeks fly by too once you’re in the routine of those daily hospital visits. I was given a treatment schedule which I carried with me & on the journey home from hospital each day I found it really cathartic putting a big old line through that days appointment, it’s the small things I guess! 

Depending on where you’re being treated many cancer treatment centres have Maggie centres either in the hospital grounds or nearby, these are a great source of information & support also, they do everything from financial advice, courses to do with personal well-being etc., to coffee mornings where you can just sit & chat. I was lucky, I was treated at the NCCC at the Freeman Hospital in Newcastle & they have a lovely Maggies in the hospital grounds & I called in a few times, it was lovely. 

Nicola 

Hi Horus,

I'm so sorry that you've got this miserable cancer too, but very glad you've found this terrific group. I didn't until I was in recovery, but better late than never!

Eating well and walking are GREAT ways to prepare for it, good for you!

Far too many of us were fobbed off with a piles diagnosis. I even had a probably unnecessary hemorrhoidectomy which caused me no end of pain. 

The treatment is hard, but it's very effective and blessedly fast (although it doesn't feel like it when you're in it.) Try not to wallow too much in the potential issues- most of us get some of them, but few of us get all of them. And the success rate is high.

Stick with us and we'll be with you through the entire thing.

Hugs

Suz

Hi Horus64 

I was  diagnosis Advanced  localised Stage 3  T4 N1 Anal cancer, I ended up with a stoma as the tumour  was really big and I couldn’t go to the toilet, I refused at first but once they explained due to me not being able to go to the toilet I will end up having to have an emergency one, and I didn’t need that half way through the treatment, I had it done I was petrified of it however after about 10 day I was fine with it and to be honest it was the best thing I had done as I had no problems with going to the toilet as this can be quite painful while going through treatment. 

I had the same treatment as everyone else 1st i had the chemo  infusion then off to have my first radiotherapy after that every day after was 3 chemo tabs am and pm, however after 4 days in I was rushed in to hospital with suspected heart attack after 6 day in the cardiac care unit, with everything thrown at me it turned out to be the chemo so had to stop it and just carry on everyday for 5 days of radiotherapy, which I was a bit worried about as I felt like I was only having half the treatment however my oncologist explained that the radiotherapy was my main treatment, and to be honest I was glad I couldn’t take it as I know it can really effect you. 

I felt I breezed through may treatment a couple of weeks in I had thrush  symptoms  and at the end I had a sore where the radiotherapy beam had been, both was short lived as I had antihistamines for the itching, some dressings for the sore on my bum, I didn’t have any burning down there, just skin peeling but no soreness, the hair on my body had gone but I see that as a bonus as I didn’t need to shave lol, and I think which helped my skin is bathing in epsom salts every day. 

Before I was diagnosed I was in pain so was taking paracetamol and ibuprofen and had a hot water bottle , but once treatment started I had oramorph which was a god send I never needed to take much but It really got rid of the pressure and pain. 

To be honest I think the worse thing about it all the was the travelling every day for 5 days it can take it out of you and leaving you feeling fatigued. 

I had a sigmoidscope a couple of months ago to see if I could have a reversal of my stoma but due to the way I have scar tissue due to the radiotherapy it has left to big lumps and has left a stricture there so would not be able to pass poo so I have a stoma for life, but I have no issue at all with it, it had given me a better quality of life as I use to always suffer with chronic constipation, now I don’t have to worry. 

Iv been in remission for 15 months 

I hope all gos well for you, and just 1 word of advice stay positive . 

Laura x

Hello Horus64

I am so sorry to hear of your diagnosis and can totally empathise with this bombshell (as you rightly describe it) descending on you.  I think each one of us can vividly remember the heart-stopping moment when we were told and the shock, disbelief and terror that came upon us.  But, once the shock wears off (if took me a good couple of months) you get totally caught up in the preparation for treatment.  Such a lot is going on with hospital visits and preparation, and before you know it you will be on the chemo\radiotherapy course and hopefully back to a cancer-free life.

I would keep a supply of Laxido close by (Laxido is a stool softener, not a laxitive) as you have found out opioid-based painkillers can cause constipation so if you need more help with the pain, take the Laxido alongside (not after!) the stronger medication.

I was one of those who suffered quite severe side effects but the treating team were wonderful and kept me supplied with dressings, creams and painkillers and I had very frequent check-ups.  So at all times, please let the team treating you if you have problems, hopefully you will find that they are enormously sympathetic and will do everything in their power to ease your discomfort.

And - the Sitzbath - available on Amazon, a portable bidet which fits on top of your loo and absolutely invaluable - filled with lukewarm water I just used to lower myself in so that front to back was under water and it was so relieving in the later stages of the radiotherapy.  I also used mine for bowel movements, the anal passage is very raw towards the end of treatment and going underwater was much less painful.  The bath is very easily cleaned and disinfected.

If there is anything at all we can help with please just shout out - just about each and every one of us have been through this and talk with the voice of experience.

And we are always here just to support if you need it.

Irene xx