Stage 1 Anal Cancer

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I was diagnosed with the above yesterday. I had been fast tracked a MRI scan and CT scan. I had an biopsy taken at my appointment under local anaesthetic. I have been told that will need a pet scan and a smear test plus a few blood tests. I'm now waiting for an appointment at the Norfolk and Norwich oncology centre. In 2017 I started dialysis at the NN eventually having a kidney transplant in 2019 at Addenbrookes. I was wondering if there is anything that I need to buy prior to starting treatment.

  • Hello Anitasian and a warm welcome to the forum though sorry you have to be here, unfortunately my treatment options are limited so I am unable to help but there are many guys and girls on here who can and will be happy to share their experiences and knowledge with you take care,

    Eddie

  • Hi  ,

    Welcome to the Macmillan Online Community although I’m really sorry to hear of your diagnosis. I was also diagnosed stage 1 & although I didn’t have to have a PET scan I was also asked to have a smear test which was actually due at the time of my diagnosis, I think that’s possibly due to a high number of anal cancers being HPV related as cervical cancers are.

    Once you’ve started your treatment your treating team will supply you with creams & any pain relief that you require but someone on this forum advised me to start moisturising the area that would be treated with just a basic aqueous cream prior to treatment which I did & I don’t know if it helped but my skin stayed in pretty good condition throughout. Also a lot of people that have gone through this treatment have sworn by a sitz bath which is a portable bidet that sits on top of your toilet, I bought one from Amazon but only used it once or twice. If you don’t already qualify you’ll be entitled to prescription charge exemption because of your diagnosis, it’s just a form that you fill in & hand in to your GP. 

    I bought some comfy loose fitting trousers to wear to my daily hospital visits in case I got too sore but was able to wear my jeans throughout. It’s also worth planning how you’re going to travel to & from your daily radiotherapy appointments in case you’re not able to drive yourself. I also batch cooked some meals just in case I didn’t feel much like cooking every night as there’s only myself & my daughter at home & she was doing her GCSE’s while I was having my treatment. 

    I’m sure others will be along soon to add to things you can do/buy in preparation for your treatment but please if you have any specific questions just ask & we’ll do our best to help if we can. We’re always here to support you however we can. 

    Nicola 

  • Hi Anitasian, 

    sorry you have found yourself here, however you have come to the right place for Tips and advice. 
    I was Advanced stage 3 T4 N1, just as I was about to start my treatment I started bathing in Epsom salts the one for psoriasis eczema and dry skin I bathed in this every day all the way through my treatment and a good few weeks after, I also used E45 every time I went for a wee  to wipe myself with and used  cavalon barrier cream, I never got sore at all.

    after the 3rd week I suffered with radiation thrush I started using a canaston cream which was for cooling a soothing there was no metals in so was fine to use and used antihistamines for the itching which really worked well. 
    I had  to have a stoma before my treatment as due to the big tumour I couldn’t poo so I never had the problem of being painful when pooing, but I know other used the silts bath. 

    For pain relief iv been on oramorph which was a blessing and still use it now as due to the radiotherapy causing 2 lumps of scar tissue and very inflamed so still have pain. 

    Hope this helps and good luck with your treatment, just want to add that after my first 3 months check up after treatment had finished my tumour had nearly gone and after 6 months I was in remission I’m now nearly 2 years after treatment and just about to have my second 6 monthly check up so far still in remission. 

    laura x x 

  • Hello Anitasian

    I am so sorry to hear of your diagnosis.   I must admit when I read your post I thought that you have had enough health traumas in your life and now this - my heart goes out to you.  But although we can't change things we can help support you through this treatment and beyond.   Nicki has covered nearly all the options that I would have suggested, especially the Sitz bath - wonderful for soothing the nether regions in the latter stages of treatment and beyond.  I even used mine as a loo - when everything is very very tender opening bowels under lukewarm water is somehow less painful.

    The treatment, although it may not seem like it at the time, is short, sharp and tough, especially in the latter stages and for a couple of weeks afterwards.  Thankfully we all get through with no small help from the teams treating us; so the other important thing I would stress is that if and when you find that the side effects from the radiotherapy are getting painful, make sure your team know about it.  They can prescribe strong painkillers the same day, these are often opioid based and can cause constipation (to be avoided at all costs if you are feeling extremely tender in and around the back passage) so make sure you take a stool softener such as Laxido alongside.  It is a stool softener, not a laxitive and in important in making the passage of stools more comfortable during a difficult period.  Towards the end of treatment I had diarrhoea (a lot of extremes going on!) and wore Tena briefs just to feel safe and as I had some leakage I had disposable squares on the bed at night.

    These next few weeks can be utterly hair-raising with so many appointments and scans but behind the scenes there is such a lot going on in planning a tailor-made treatment plan for you; once you know when and what is happening you will feel a lot more in control of what is going on in your life.

    We are always here should you need support or just to talk.

    Irene xx

  • Hello Anitasian welcome from the group. I was treated at Addenbrookes for Anal cancer stage 2. Before treatment I had surgery to try and remove the offending area with clear margins but as they found cancer cells I had the usual 6 six week treatment. As you are stage one hopefully you may only the five weeks chemo radiotherapy. At Addenbrookes I wasn’t offered creams and potions and had to kick up a bit of a fuss before they did which I was a bit upset about. After speaking to my team about it I didn’t have any more problems. I did start using a gel called StrataXRT which I bought online after reading Leeds hospital trial using this but it is expensive and that is probably why it didn’t continue. This gel can be kept on your skin during your radiation sessions as it does not block the rays. It kept my external skin in good condition but I did have some internal inflammation which I took pain relief. Get the famous sitz bath for help with cleaning if you don’t have a bidet spray. I bought some soft cotton boxer type knickers from Amazon a size up and some harem type trousers as I wasn’t able to wear anything that rubbed. You will be told what side effects to expect but I didn’t get half of them and what I did get didn’t all come at once. Radiation cystitis was one after the third week in and drank loads of cranberry juice or water. Antihistamines for the itching. When you get the date of your start of treatment I was given a schedule of dates and times to be at the hospital. I was asked to drink a glass of water about fifteen minutes before I was called in for treatment. They are very respectful in the radiotherapy room where you lay down and just lower your underwear down to the pelvic bone and they cover you with a dignity towel. You are in there for about 15 minutes and then it’s over. Let us all know how you get on and my team at Addenbrookes were brilliant 

  • Hi Anitasian,, like the others I'm so sorry that you too have found yourself in this dreadful situation. I am 3 weeks post 6 weeks of chemoradiotherapy here. Like others have said everyone seens to get slightly different side effects/ different levels of side effects and also at differing stages of treatment. A sitz bath I found was good to use to pee & poo as made it slightly more bearable, also good to use with some tea tree oil in warm water to sooth & aid healing (its easily cleaned/disinfected) Cranberry juice in your fridge just in case you need it. The nurses at the Cancer centre at Belfast City hospital were so good with making me feel at ease and I would recommend if offered after any of your sessions to see the nurses to not be embarrassed as they were great at recommending different wipes (Cavillon) and various creams. I started with Cetraben then was given Yellow paraffin and Cavilon barrier cream. I also bought some Aloe Vera gel which soothed around groin. Soft cotton boxer from Amazon I found great and lived in loose baggy joggers for comfort.  The treatment can be hard but its surprising how quickly the weeks go in with the daily visits.OT were able to provide me with a cushion to make sitting & especially driving a little more comfortable as treatment progressed. I was able to manage very well, driving myself every day etc until the last week when things got a little more uncomfortable. Agree with others here if you need increased pain meds. ask for them I tried to soldier on but should have asked earlier. 

    Wishing you an easy time through this journey. 

    Andrea

  • Hi Nikki65,  

    Thank you for the invaluable information.

    I'm glad that I have joined this group.

    Anita