Hello - starting treatment Monday 4th July

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Hi Everyone, Just want to say that I am so glad I joined this forum I have spent the last few weeks reading lots of threads full of helpful information and positive stories so thank you.

I have previously suffered with piles and 5 years ago had two banded after a colonoscopy arranged because of bleeding.  I have suffered with bouts of bleeding on and off since then and put down to piles.

Last October I was misdiagnosed with a prolapsed pile by my own GP (with an external examination) and by the hospital Consultant February 2022 where I was only examined externally and told I had a Stage 4 Prolapsed Hemorrhoid which would need surgery - an Hemorrhoidectomy and I would be put on the waiting list.  I luckily asked for another appointment to see the Consultant for more information on this operation and a proper examination.  At this appointment she again examined me externally but did suggest a colonscopy as an MOT because of my age!  She said you have not got cancer!! So glad I agreed to this as a malignant tumour was found and not piles!!

After a terrifying couple of weeks while the mri and ct scans and biopsy results were all examined at a MDT I was told that I had anal cancer which had not luckily spread and was referred to the Radiotherapy Department.   My Consultant could not apologise enough and took all the blame for missing this diagnosis.

I am so angry that I was left all this time and I just put up with my symptoms thinking that I had piles - even my husband kept saying you've only got piles everyone has them they have them for years!!  After reading stories on this forum I am not the only one either.

I cannot fault the Radiology Department they have acted so quickly arranging a PET scan (this was all clear) I was even examined internally for first time!  I was told my treatment would be Chemo radiation over 28 days and I wasn't due to start until 18th July but I was lucky enough to get a cancelled planning scan appointment last week and start my treatment Monday 4th July so not long to wait now!  

After the nurse went through all the side effects for both treatments I was so depressed they certainly give you all the gloom!  You lot are all keeping me going though and I will keep looking on this forum for advice as I go along.  Got to focus on the end date of treatment 10th August.  Sorry for rambling on - I have put even more on my profile page! Slight smile

  • Oh, what a nightmare! I totally feel your pain. I went through the hemorrhoidectomy from hell, a colonoscopy, SEVEN doctors and nurse practitioners, most of whom didn't even examine me but told me that the agony I was in for a full year was normal and to go put some Prep H on my behind and come back in 10 years.

    I guess I should thank the pain for being so bad that I couldn't stop trying to find a doctor who would help me. I didn't expect the help to come in the form of a diagnosis of anal cancer, but the prospect of actually healing is worth it all.

    It's such a balancing act to research and prepare yourself for what may come, and to not fall into a stew of worry over how bad it could be. I went in super positive, staying in the place that I'd be one of the lucky ones who didn't have all the misery. I was wrong, but I still think it was the right mental attitude for me to take.

    And it IS getting better! I'm so glad you didn't give up and got a diagnosis, and now you can go about getting rid of this freakin' awful cancer and get your life (and hopefully a pain-free bum) back.

    Keep us posted. 

  • Hi ,

    Firstly I’d like to offer you a warm welcome to the club that nobody wants to join! But seriously we have a wonderful, informative, supportive little group here & although I’m sorry that you’ve had the need to find us I’m pleased you’re here so that hopefully you’ll no longer feel like you’re going through this alone. We’ve all been through what you’re facing in one way, shape or form & have a whole bunch of hints & tips on dealing with things that crop up along the way. 

    Unfortunately your story is all too commonplace, I was blessed with a very young, diligent GP (a locum at our practice at the time) & a great colorectal surgeon & oncologist but I spoke with my oncologist on a couple of occasions about people being misdiagnosed for months when they’ve had anal cancer all along (he was aware that I volunteer for Macmillan) & he said that although many of the symptoms are the same as you get with haemorrhoids etc., the very least a Dr should be doing is an internal examination, it really is shocking & extremely worrying that your consultant didn’t even do this! I’m a prime example of this, my tumour was undetectable on both my MRI & CT diagnostic scans but on internal examination my colorectal surgeon could definitely feel it, I was diagnosed T1N0M0. If you click on my profile you can read a little about my journey there. 

    It’s great that your radiology department have been on the ball although I should imagine your consultant has rushed things through after realising her mistake! Although this is not the news that you wanted it could have been a very different story had you not have insisted on that second appointment & she will have realised this! It’s also good that your planning scan was brought forward & you’ve an earlier date for the start of your treatment. You’re doing the right thing concentrating on the end goal this is exactly what I did & not long until Monday & things will be underway. 

    Please don’t hesitate to ask any questions here, however delicate the nature, I can guarantee they’ve all been asked before, we’re an open minded bunch here & don’t shy away from anything lol, I never imagined 4 years ago I would have discussed my bottom & toilet habits with so many! Joy 

    Nicola 

  • Welcome to the sore bum club. I’m 9 weeks post chemoradiotherapy as of 1st July. I cannot believe how they missed so many opportunities to detect your cancer sooner. I went to my doctor on a Monday in January and was internally examined. He put me on an emergency two week referral and I was in a local hospital with a consultant the following Sunday. I had all the scans and endoscopes and started treatment on 21st March (pretty quick eh). I had my treatment at the Christie in Manchester which is 25 miles from my home so the daily treks were a pain in the arse, excuse the pun. I had chemo by way of a PICC line for weeks one and five. The first ten days or so were a doddle but then the side effects started. My mouth came out in ulcers the likes of which I’ve never seen and the pain involved was horrid. The worst of that was gone in around a week, the hospital provided all the necessary medication to ease the symptoms. Then at around week three I started to feel the effects of the radiotherapy and in my case it wasn’t pleasant. Again I got lots of medical support and medication to treat the symptoms. Suffice to say that the effects of the treatment got gradually worse though I breezed through the second chemo. After treatment I sat with my team at the Christie and they warned me that things would get worse before they started to get better and boy they were not wrong. At week nine I feel I’m over the worst but I still have some really bad days. I lost a load of weight as I just couldn’t face food at all but I’ve started to put weight on again and have gained a stone in the last ten days. There are lots of other things I could include here but I just wanted to give you a feel of the bigger picture. The pain levels and toilet habits vary from person to person so I could say one thing and it could be a completely different experience for you. I’ll finish up by saying… stay positive throughout your journey you’ll have your ups and downs and your good and bad days. Don’t be alone, surround yourself with your friends and get used to talking about your bum and it’s various activities. Don’t forget the Macmillan gang they’re brilliant at putting your mind at rest and getting you through tough times as well as giving you lots of info about different aspects of life like mental health issues, financial worries, family troubles. Wishing you all the best for the start of your treatment next week. It’ll be over in the blink of an eye. 
    P.S. The radiotherapy machine looks scary at first but you’ll feel nothing at all and it’s all over in about 15 mins. 

  • Welcome to the sore bum club. I’m 9 weeks post chemoradiotherapy as of 1st July. I cannot believe how they missed so many opportunities to detect your cancer sooner. I went to my doctor on a Monday in January and was internally examined. He put me on an emergency two week referral and I was in a local hospital with a consultant the following Sunday. I had all the scans and endoscopes and started treatment on 21st March (pretty quick eh). I had my treatment at the Christie in Manchester which is 25 miles from my home so the daily treks were a pain in the arse, excuse the pun. I had chemo by way of a PICC line for weeks one and five. The first ten days or so were a doddle but then the side effects started. My mouth came out in ulcers the likes of which I’ve never seen and the pain involved was horrid. The worst of that was gone in around a week, the hospital provided all the necessary medication to ease the symptoms. Then at around week three I started to feel the effects of the radiotherapy and in my case it wasn’t pleasant. Again I got lots of medical support and medication to treat the symptoms. Suffice to say that the effects of the treatment got gradually worse though I breezed through the second chemo. After treatment I sat with my team at the Christie and they warned me that things would get worse before they started to get better and boy they were not wrong. At week nine I feel I’m over the worst but I still have some really bad days. I lost a load of weight as I just couldn’t face food at all but I’ve started to put weight on again and have gained a stone in the last ten days. There are lots of other things I could include here but I just wanted to give you a feel of the bigger picture. The pain levels and toilet habits vary from person to person so I could say one thing and it could be a completely different experience for you. I’ll finish up by saying… stay positive throughout your journey you’ll have your ups and downs and your good and bad days. Don’t be alone, surround yourself with your friends and get used to talking about your bum and it’s various activities. Don’t forget the Macmillan gang they’re brilliant at putting your mind at rest and getting you through tough times as well as giving you lots of info about different aspects of life like mental health issues, financial worries, family troubles. Wishing you all the best for the start of your treatment next week. It’ll be over in the blink of an eye. 
    P.S. The radiotherapy machine looks scary at first but you’ll feel nothing at all and it’s all over in about 15 mins. 

  • Sorry I’ve posted you a reply that was meant for someone else, I pressed the wrong button. Hope you’re well xxx

  • Oh thank you for your lovely replies and information.  Never thought I would become a member of the Sore Bum Club!

    My main symptom which has gradually got worse is bleeding which I have been told does stop with the radiotherapy - fingers crossed! Daren't wear anything light coloured and having to wear pads!

    I was a bit of a coward when it came to the Oncologist explaining which Stage of cancer I had been diagnosed with.  I said sorry I would rather not know as I am finding it hard to take in that I have cancer.  I did say I'm worried I am now Stage 4 with being left so long and she did say you are definitely not Stage 4 so maybe Stage 2 or 3.  Maybe I will find the courage to ask as I go through the treatment. I do know it hasn't spread.  When I went for the colonscopy he put on the notes that it was a 2 cm tumour but when I saw Oncologist she said it was 6 cm so don't know if it has grown since then but I know the tumour is internal but also on the outside (the bit they thought was a  prolapsed pile) so maybe including this makes the larger size!

  • Wow, Carole , I'm so sorry to hear this.

    I actually thought i was reading my life story as its so so similar.

    I too was diagnosed as piles, but mine  was during covid so took place over the phone.  Because I had suffered with piles previously I agreed and accepted that.

    • 18 months down the line I have just been diagnosed with anal cancer, I've had my mri and ct and biopsys and met with my surgeon  and am now scheduled to meet my oncologist in 2 weeks.

    I'm dreading my treatment starting and the pain that comes with it, but at thisbpoint i keep telling myself - at least i will still be alive.

    I dread to think exactly how many others are initially miss diagnosed.

    We need to try to stay positive and this site is a marvellous, informative site filled with compassionate people who can help us through it all.

  • Welcome Carole21, though as Nicola has stated it is a group that we don’t really wants to join. You are experiencing much what others did when first diagnosed. I had my post first year appointment with my oncologist yesterday and everything is great (her words). A year ago I was sitting in that room with her giving my the long list of possible side effects I could suffer from during and after treatment and then added you are still a young woman and should be able to cope being fit and healthy. I am also 67. After hearing all the side effects I remember asking if my life would be worth living and becoming incontinent and was going to have to give up my Ramblers walking group which I really enjoyed. I was stage two and not spread and fortunately I went to my doctor because I was suffering constipation and started bleeding a couple of times. My doctor immediately gave me an internal and said that’s not piles as it was too hard and sent me to my local hospital for a sigmoidoscopy. They discovered I had a flat tumour and attempted to cut it out but found cancer cells in the margins. I have noticed Neilsbum mentioned mouth ulcers which I experienced early on at the start of treatment but read on hear to get some mild toothbrushes and childrens toothpaste. As each side effect occurs you deal with them as and when and I’ll add if! As you may not get some of them. You are lucky you have your family support and your husband cooking now. My husband didn’t start the cooking until I started treatment ha ha but he was wonderful and my children have grown and married and sadly don’t live just up the road but kept in touch via Facebook. On here you will find lots of tips on coping with bowel movements during treatment and one is a sitz bath if you don’t have a bidet. My husband bought a long extension of the shower hose and fitted a bidet spray to the end you can turn it on and of just by pressing it to help with cleaning and soreness. I will not bombard you with all the other things I did to help as I am sure many on here will add their hot tips too. To this day apart from sometime what I think are IBS issues due to certain foods I am pain free and getting back to walking and cycling and taking up tia chi. You have a future ahead. I think whatever happens along the way there are ways of managing it and making the best of things. Good luck on the 4th July Julie

  • Sounds like we will be going through our treatment at the same time so good to know i'm not on my own. Good luck with your meeting with the Oncologist. We will get through it. 

  • Hi Carole,

    sorry to see you here but welcome anyway

    iv had a few colonoscopies over the last 10 years, every time lots of bleeding, all seem to be the same symptoms, the last colonoscopy I had 5 years ago they said it was haemorrhoids, 5 years on now diagnosed with advanced stage 4 N1  anal cancer, i questioned the McMillan nurse and said how do I know that the last colonoscopy wasn’t the start of my cancer instead of  haemorrhoids she said if it was cancer you would be dead by now.

     however my next question I will be asking my oncologist if haemorrhoids and anal cancer have very similar symptoms, my symptoms for both was exactly the same struggled to go to the toilet and lots of bleeding, this time I  did have discomfort and  pain which I don’t remember having before, but I want to know if haemorrhoids can turn cancerous as there are a lot of people on here that have either like me had haemorrhoids and then anal cancer or a wrongly  diagnosed with haemorrhoids and it was anal cancer.

    There has got to be a link somewhere, and I think all haemorrhoid diagnosis should have a biopsy and check to see if there are any cancerous cells!!

    Goid luck with the start of your treatment, I had my first MRI scan yesterday after my treatment, and I must say I’m sure my treatment is working I’m not so much in pain anymore I’m sure my tumour has definitely shrunk and definitely getting back to my old self.

    take care 

    Laura  x x