Hi

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I have been diagnosed with anal cancer and starting treatment in a couple of weeks both chemo and radio.

feeling really emotional and anxious re radiotherapy .. is it awful and sore and painful a few weeks in? 

  • Hi SoniaD, 

    Sorry you have found yourself here, I know first hand how you must be feeling, but this is a great place for support and tips. 
    I will say everyone is different and what side effects some people get other may not.

    I can only speak for myself  I was Diagnosed with advanced stage 4 N1, I ended up with a stoma, which as much a I hated the thought of it, it was the best thing I had to have and adapted very well and quickly to it, I started my treatment chemoradiothery a couple of months after which seemed like a life time as I just wanted to get it started. 

    so from the start I bathed everyday day in Epsom salts, used E45 to wipe myself after having a wee, and was given a barrier cream to put on after, by the second week I started having cystitis caused by the radiotherapy I drank lots of cranberry juice and water and I was told to use antihistamines for the itching which worked well, my skin around my groin area went brown but was not sore at all, and at the end of my treatment I had a sore on my bum which they gave me dressings for,  I used my stoma powder to dry it out and used antihistamines to stop the itching which cleared up within a few days to be honest I can honestly say I did not suffer or really go through what I read may happen, I didn’t have to worry about trying to go for a poo so I didn’t suffer pain wise in this area. What pain I did have I was taking oramorph the pain was more so because of the big tumour I had and the mucus I was having to get rid of , you get this when having the stoma. 

    where some people will suggest a siltz bath I never had to use one so can’t really comment on that but I do swear by the Epsom salt baths and wiping with E45 which I’m sure is the reason I didn’t suffer with my skin. 

    I ended up not being able to continue with  the chemo tables as it caused me heart problems, so just had radiotherapy yes I was very tired all the time and when I wasn’t having treatment I just lay on my bed in and out of sleep. To be honest I found the journey every day worse and having to have a full bladder than the treatment. 

    I went back to work part time 6 weeks after treatment finished and worked my way up to full time over the course of a couple of months been back to work 15 months and in remission. 

    wish you all the best in your treatment and please if you have any questions please ask someone will do their best to give advice. 

    Take care 

    Laura x x

  • Hello SoniaD welcome to the group and sorry about your diagnosis but glad you have found us. Do you know what stage you are? I know many of us here can remember how we felt coming up to the time when treatment starts. I was stage 2 with no spread to the lymph nodes so had the six weeks chemo radiotherapy treatment. The first day was a session of intravenous chemo followed by radiotherapy which the radiation session is painless and lasts about 10/15 minutes. Following the first day I took chemotherapy tablets which you take from Monday to Friday whilst you have the radiotherapy and weekends off. We all have different experiences going through treatment with some who luckily escaped harsher side effects and some do experience pain but you have a team who are there to help you through it with lotions and pain relief medication. The side effects do slowly build up and like Laura I did have radiation cystitis around the end of the first week into the second week in which was helped by drinking loads of fluid and cranberry juice. My skin started to be affected around the end of the fourth week. I did use a gel called StrataXRT which helped keep my skin intact externally but my team were on hand to help with pain relief. I did get the sitz bath which is a famous piece of equipment on here which helped when you open your bowels and do a wee as they can become quite painful. When taking opioids it’s important to take stool softeners and your team will usually give you these. I am two years post treatment and doing well. Once you start treatment you will find the time passes really quickly with the to and froing to hospital appointments and it’s very tiring and I would have an afternoon nap most days. I hope you have some family and friends who can help support you to appointments or shopping etc. Please keep in touch on here with how you are getting on and ask any questions. 

    Julie

  • Hi Sonia,

    I'm so sorry that you've got this miserable cancer, but very glad that you've got your treatment ready to roll and have found this forum! I wish I had before I finished treatment. I could have used the support!

    Everyone's journey is different, and your approach to it will reflect what you've learned serves you best. I wanted to know about the potential side effects, but went into it being confident that I'd be one of the lucky ones with few or no issues. Well, I was wrong, but it was still the right attiutude for me to tacklie it with. 

    My side effects started slowly- nothing more than a mild burning and being tired for the first couple of weeks. And some nausea, but that was easily handled by chemo nurses. By the end of the third week I was feeling it, and weeks 4 and 5, plus the first few weeks of recovery, were pretty hard. 

    Your team wlll be there with pain meds, creams and ointments and whatever else you need. Don't try to tough anything out. Get help when you need it. Clear your schedule so you can rest. Your body will tell you when so iisten to it!

    It's a very aggressive regimen, I won't sugarcoat it. But it's very, very effective.

    Keep checking in here! We want to know how you're doing!

    Hugs

    Suz

  • Hi   & welcome to our little corner of the Macmillan online community although I’m really sorry to hear of your diagnosis. 

    You've already had some really informative reply’s so I’ll not go over what’s already been said but I will echo what Suz has said in that although there are common threads in the way of side effects with this treatment everyone is individual in the way they react. The best advice I would give is to take each day at a time, the side effects don’t all appear at once they build gradually & you can deal with them likewise, be open & honest with your radiotherapy team & your oncologist & they should provide you with creams, pain relief etc., when needed. Also keep your eyes on the prize, focus on the best possible outcome & being cancer free. Anal cancer is very treatable & the chemoradiotherapy, although short & sharp, is very effective in a large percentage of cases.

    Rest assured the way you’re feeling is completely natural, it’s fear of the unknown but I’m sure once you begin your treatment you’ll begin to feel a bit more in control again.

    I remember being so scared on my first day of treatment but after that I knew what was happening & it just became a daily routine. I was given a printed schedule for my radiotherapy sessions & carried it with me along with a bright pink highlighter pen & as soon as I was out of the appointment I found it really cathartic putting a line through that days appointment, it sounds a bit silly now but it really helped seeing those days checked off & soon enough the appointments checked off overtook the one’s remaining & I knew I’d soon be done. 

    Please come back with any questions you may have, we’re here to support you however we can. 

    Nicola 

  • Hi Nicola I can very much relate to the marker pen which made it feel like a big achievement of getting through another day!

  • Hello Sonia and welcome to the forum although I am so sorry to hear of your diagnosis.  You have come to the right place, as each and every one of us  have been through what you are about to start.  We have lots of coping strategies, some of which have already been described to you, but please bear in mind that no one person's experience is identical to the next.  I was really badly affected but the team treating me were marvellous and kept me going with a supply of painkillers and dressings.  When something didn't help they would try another very quickly and before I knew it I was all healed up and out the other side.  It seemed forever at the time, but in reality we are only talking about a few weeks.  The side effects come on very gradually and not all at once either.  I would plan to have lots of rest, and it would be really helpful if you have family and friends who can rally round when you aren't up to doing much.

    We are always here should you need support; there isn't anything that you can't talk about here!

    Irene xx

  • Hi SoniaD

    I completely understand how you must be feeling and the waiting is the worst! Once you start your treatment you will feel much better emotionally and mentally, taking back some control and fighting back. 
    I finished my treatment in April , which was 7 weeks of chemo radiation Monday to Friday and 2 IV chemos , at the start and half way through . I had nausea from day one (and all the way through)but that can be managed with medication and I found eating little and often helped . I stuck with a low fiber diet from the beginning which was a bit boring but I was told that the treatment would cause diarrhea - it did , but mainly towards the end . By end of week 3 I had terrible vaginal itching which nobody had warned was a possibility. Tried different creams but nothing really helped until after 2 weeks it got better and I moved onto back passage issues ! So for me it was only after week 5 that I started to have painful and frequent bowel movements, but I didn’t have to take the really strong pain killers . The sitz bath was invaluable and I’d only learnt about it on this fabulous forum . Forget toilet paper and stock up on unscented wipes ( although they can still feel a bit stingy in which case just sit in the sitz) . My team didn’t recommend any creams but maybe because my skin didn’t split or have sores etc . They said to just ensure it was kept dry and recommended a hair dryer on a COOL setting - goodness knows you don’t need anymore heat down there! Weeks 6 and 7 were the hardest but most people seem to finish around week 5 anyway. 
    Everyone reacts differently but I wanted to share my experience as I feel lucky not to have had some of the issues others have had to cope with . It wasn’t a walk in the park but it could have been worse by all accounts . I work from home and managed to carry on with that - although some days it was a case of logging on , reading an email and then napping on the sofa! I had support at home with family walking dogs and preparing meals etc which helped enormously.
    Once you have your plan and get started with your sessions you will find that the weeks actually pass very quickly and definitely cross the sessions off as you go . 
    Wishing you all the very best , you’ve got this! - and we’ve got you , if you need it x

  • Hi I am starting my treatment next Wednesday and my oncologist came me the impression that I would be able to drive myself to each appointment. Is that the case or will I need help? 
    thanks Sam xx

  • Hi Sam

    I think initially you will be able to drive yourself and you don’t feel anything during the actual sessions . They last about 15 - 20 mins . They do advise that you have a full bladder for the sessions so depending on how far you have to travel you might want to get there a bit earlier and ‘top up’ rather than driving with the urge to wee! 
    Every one reacts differently but you may find as the weeks progress you’d be more comfortable with someone else driving , depending on side effects - fatigue, nausea, diarrhea, so would be a good idea to have a back up driver/s  . That said I know some have managed to take themselves to every session . 

    All the very best for next Weds and the following weeks. Let us know how you’re doing . Sending positivity and a squeezy hug x