ongoing pain

Hi Beyond terrified , great to hear that things are going well for you besides the pain.

I have ongoing tenesmus (feeling a constant urgent need to poo even if I’ve just been) a year since treatment.  Little research has been done about it & it’s treated as a symptom of the tumour which ought to disappear after CRT.

So I’ve had to learn to hope it’ll improve with time while also  plan for it to be permanent.  Hope for the best, plan for the worst

The downside is that I can’t plan anything & that I’m always uncomfortable.  Upsides are finding distractions - walking, table tennis, learning Japanese, Netflix…  A month ago I bought an electric moped so it’s easier to visit friends & family, & on Saturday I rode to a local bike project to help fix bikes…

It’s hard to know when to stop looking for cures - it’s such a personal choice.  Maybe there’s something that’ll help your pain, maybe not, maybe it’s just a question of time.  I’ve stopped all drugs & cut contact with hospitals & doctors; my life feels better without them.

Wishing you the very best  xx  toni

Hi Beyond terrified, 

I think what you’re experiencing is most probably the aftermath of the radiotherapy. I suffered intermittent pain at my tumour sight & 3+ years on this still happens from time to time but only lasts a day or two. The pain in the butt cheeks I also get & have been told that this is most likely sciatic pain, one side is typical of sciatica, it starts a little higher & travels down my leg but the other is confined to my butt cheek. My oncologist thoroughly examined my last MRI & reassured me there’s no residual/new disease or fractures etc., & I have to trust that. My hips get very sore & stiff if I’m not constantly on the move & I’m considering asking for a physio referral if only to get some proper exercises I can do at home to keep my hips as flexible as possible (I also have early signs of osteoarthritis diagnosed prior to the anal cancer). I hope this helps ease your worries a little & I’m really pleased to hear you’re back at work & doing well. 

Nicola 

Hi Beyond terrified very good news about your scan results! The issues you describe are very common after effects of pelvic radiotherapy. At first I was anxiety ridden about them and feared the cancer was back. Now I’m more relaxed after having clear scans. Pain and a strange sensation at the tumour site occurred often but had been reducing. It returned again yesterday but I’m not getting worked up about it anymore as my scan last month showed no anal cancer and it will probably go again in a while. My legs and hips were very stiff walking after the radiotherapy with some sciatic pain but this has improved. It’s still early days for you so hopefully these issues will lessen as time goes by. Bev. 

Thanks Bev, I was hoping it would be down to the treatment, but probably normal to fear the worst.  Hopefully I will feel more assured as time goes on :) 

Thanks Nicola, yes that helps.  I too am suffering with my hips.  I have been trying to build up my steps, but as I have a desk job, have been less active and not achieving my 10k a day since I went back to work.  Yesterday i did 14K to make up the week's deficit, and this morning, my hips felt like concrete.  I really struggled to get out of bed first thing, but I have noticed as you say, if I am inactive for any period of time, they are worse :(  I got some general hip exercises from the NHS msk site.  Think that's all I googled and something came up, say yes, I would definitely get physio input if you can.

Thanks Toni, the pain is only mild, it's just the worry of what might be causing it, but I think it probably is just the after effects of treatment.  I hope :)

Hi, just wanted to say that I’m at the 10 week post treatment for stage 2 SCC and I’m getting buttock / leg pain too. Good to see some reassuring comments here. God the anxiety is driving me crazy. Doesn’t help that with the weather like this, I’m stuck in the house going stir crazy. x

Ten weeks is still very early days for this treatment I think, your leg might be sciatica as someone else mentioned?

I have paraesthesia of my leg, started in the 2nd last week of treatment but apparently it's not a known side effect of the treatment.  It is much better now with Amitriptyline.  A couple of people I know who have had cancer in the past, 1 lady 15 years down the line, both say that every time they get a twinge, they think it's the cancer come back.  Apparently this is the new normal for us now, but it was reassuring for me too to see some of the comments, and as someone else said, i am reassured by the scan results.  Or at least I am trying to be.  Not a lover of winter myself, it does make it hard to get about, try throwing yourself into something on Netflix, I recommend Lucifer :)