Soreness

Hi Deb, as you know I'm about a month or so further out so to speak. 

I still get deep aching sensations and sharp pulling pains.

Its likely that area got the most "Attention" maybe?

I wouldn't worry unduly. I know people who have minor symptoms a year out. Its very common I believe. 

Ian x

Hi Deb,

I’m about the same time past treatment as you, and have found that taking one sachet of Laxido every night means I can go to the loo in the morning without much pain, although it is a bit uncomfortable.

If I miss a single dose, then the next day is very painful and the soreness lasts for days, with farting hurting too. The pain is very much as you describe. Every time I’m amazed there’s no blood.

I think running and dancing also aggravate it, and once it’s sore it takes several days to settle down.

I’m also doing pelvic floor exercises to help reduce the farting follow through. It seems to be working but I’m not sure, it’s difficult to measure!

I asked the pharmacist if I can take Laxido for ever, and she said I can but that it’s very early days so I might not have to.

Remember: the radiotherapy is still working. You probably feel like it’s done because you’ve got the all clear, but it is still doing its job, and its job is to cause damage. So it’s busily damaging your anal canal, and will for up to 9 months after treatment ends.

I actually take comfort from the soreness because it shows stuff is still happening, and I need that as my cancer is still there.

No comforting advice really, just know you’re not alone.

best wishes,

I'm with you on that thinking Trish.  It's a good way to turn a negative "Why arent I fixed yet" into a positive. 

I also try to think my pains around the area that still had a residual mass are just signs that the radiation is stil working away. 

We need to stay positive. 

Ian x

Hi Debh1

Everything you are experiencing is normal and to be expected even though you are 4 months out. The radiation has and is continuing to cause lots of inflammation and scaring, your internal skin is very delicate and vulnerable to tears and fissures. We are all different but the healing process can be frustratingly slow. Also it’s an area where not a lot of air gets to. It’s a moist area and you have to go to the loo every day and pass waste. You will also have stenosis ‘narrowing’ which doesn’t help things either. Keep taking stool softeners, Epsom salt baths and moisturising. Things will continue to improve slowly. 

The wind, following through, not being able to hold things is also to be expected and will also improve slowly over time. 

For me, it took a good year post treatment to feel I was in a good place. However, 19 months on my body is not the same as it was. I still have urgency but only usually in the morning, the wind has died down but some days it can be very frequent and embarrassingly  loud depending on what I’ve eaten. Fibre is usually the culprit! I have odd moments in yoga when it’s all very quiet and I think I’ll have to run out the room to let rip. Thankfully that hasn’t happened, yet! I very occasionally don’t get to the loo on time and have an accident and sometimes I still get soreness. Particularly if I pass a large, dry stool I will have a little bleeding and soreness for a few days. 

You may also notice that your bowel no longer tolerates certain foods. This can exacerbate wind and toilet runs. IBS type symptoms are common after pelvic radiotherapy. Over time though you will get to know your new bowel and how you can adapt your diet. 

How you are now Deb is not permanent, you have more healing to do, things will get better. Give yourself a year minimum, how you are then will probably be a better reflection of how you’ll be in the future. 

We never quite return to how we were though. 
Sx

Hi Deb,   I’m so relieved you posted this & to see the replies. I was going to do a similar post. Everything you put in your post is happening to me too, I think I’m about 2 weeks ahead of you treatment wise. In the last 2 weeks I seem to have taken a bit of a backwards step. This happened to me at around the 9 week post treatment mark too. I’m really quite sore despite taking Laxido every day. What really concerned me was the terrible itching I had on/off all day for about 2 weeks on the left side of my anus exactly where my tumour was. Despite my November scan which was clear, I had begun to think it was coming back. The itching has calmed today now I’m more sore and have a weird sensation in my left buttock that feels like it’s swollen yet it isn’t swollen. Can anyone recommend a cream to use? Also, although I’m to have a lung CT scan in February ( due to node enlargement which atm they think is benign), I’m not due to have another pelvic MRI until 12 months post treatment. The Consultant said 3 monthly DRE’s were sufficient. What’s everyone else’s experience of how often pelvic  MRI’s are carried out post-treatment? 

Hi 1in1500

Whilst itching can be a symptom of AC its also a common side effect when the skin is trying to heal post treatment and can linger. I had a lot of itching particularly at night. Piriton helps and is perfectly ok to take. 19 months on I still have the itch sometimes, particularly after a bowel movement. 

Surveillance protocol can differ between hospitals. I’m under Guys, London and am the same as you. For the first two years I have 3 monthly DRE’s and annual abdominal CT & pelvic MRI scans. Thereafter, the DRE’s change to 4 monthly, then 6 monthly until I reach 5 years.

As AC is a skin cancer any changes can usually be felt through the DRE with the pelvic MRI to check higher up in the places they can’t reach. CT scan is usually to check for any spread.

All the best for that scan in Feb lovely. 

Sx

Hi all thank you re your above posts. I have had a recent diagnosis of anal cancer. The soreness that you discuss is what I am currently feeling, so some reassurance that I am " normal".

I am hoping that my chemo radiation will start in the next week or two.

many thanks, J

Thank you all so much for replying to this. I feel very thankful to have this forum and coming on here always gives me such reassurance when I'm feeling a bit rubbish and uncertain!

Thank you xx 

This forum has quite literally saved my ar** if you’ll pardon the pun and stopped me from spontaneously combusting. Today was the first time I shared my concerns as I hadn’t been wanting to spoil my family’s/friend’s Xmas/ New Year by discussing my worries. It’s been causing me to not sleep. Thanks to all for your support xx

Have only had one MRI in September 2016 because of severe cellulitis in left buttock, after which I developed lumps in both groins.  MRI showed that these lumps were late onset lymphoedema and not tumours!  Apart from that one I have only had DREs.  As I have said in the past my consultant said that he preferred to rely on look and feel!  Almost six years on, discharged from check ups last May, I have complete confidence in his judgment.  Who am I to question him?

One final thought - when you are being given positive news accept it for what it is and stay calm until the next check up.  I've learned that consultants only tell you the truth, as it is.  Hopefully it is what you had hoped for, but if it isn't at least you can believe them and not question what they are telling you - they are the experts.  I now have lymphoedema in my left ankle/heel - again late onset from radiotherapy - my tumour was right side!!  But so what!  Here telling you!  Mxx