Found you!

Hi Pam (Lady Tourelle),

I’m sorry to hear you’re having some ongoing issues but I’m pleased you’ve managed to find us again. 

Can I ask has your Dr ordered the colonoscopy because of the pain & incontinence you’re experiencing?

As you know I completed treatment in June 2018 which makes me a little over 2.5 years out of treatment & although different to your own I still have some ongoing issues too. Mine seem to be skin related, the external skin is pretty sensitive & prone to being quite rashy & I get bleeding every so often when I have a BM (I’m experiencing this at the minute again!) which I’ve been told isn’t unusual & is probably down to fissures, I’ve been told by my oncologist & surgeon that if the bleeding was extreme or I noticed any new lumps or bumps then that’s the time to worry. I was also told that when you get past 2 years NED your risk of any recurrence is reduced. I too had normal CT & MRI results in July last year although this doesn’t stop you panicking does it?  I mention my issues at every appointment but the answer is always the same. 

Nicola

Hi Lady Tourelle  nice to hear from you. I completed treatment in August 2019 and still have episodes where I have urgency to go in a morning and bouts of diarrhoea. I do get sore from time to time. As Nikki65 has said this is due to the sensitive skin in our nether regions that has been radiated. When I get bouts of soreness I then find it hurts when I go to the toilet. I would mention this to your colo-rectal nurse when you next speak to them. It doesn't harm to just check. All the best, Bev.

Thank you both. It’s good to be in touch again. I have been referred because of a change in bowel habits ( bit better now!) and low abdominal pain. Reading further I came across Pelvic Radiation Disease, that seems to fit. Have you come across it? I also have a very painful hip, which my physio thinks is muscular, but treatment related. I suppose we never stop having the odd little concerns! I also have to accept that 
I’m getting old! 
Pam 

I’ve had hip pain in both hips on/off since treatment & I did wonder if it was pelvic radiation disease. It can cause hairline fractures apparently. Fortunately the pain isn’t there every day. I did have some hip pains before treatment but not as frequent which I put down to the peri-menopause or menopause. Like you say though we’re getting older and it’s hard to tell if these hip pains are age or radiation related. Bev x

Hi again Pam (Lady Tourelle), 

I totally agree it doesn’t take much for those dark thoughts to start creeping in again does it? Nature of the beast I suppose! I’ve got hip pain, I had a touch of osteoarthritis in one hip prior to treatment but it’s both sides now & has definitely been accelerated by the radiotherapy, I also have sciatica that I’ve never suffered from before treatment. I’ve heard a little about pelvic radiation disease but need to do a little more reading on it. My BM’s can differ from day to day although I seem to go at the same time every day, it’s generally only once, I very rarely get diarrhoea & I think the variations I do get are possibly food related, Hopefully you’ll get your colonoscopy very soon & get some answers or at least have your mind put at rest as it can’t be much fun. 

Nicola 

Hi Nikki65  I have had sciatica too since treatment, both sides. Fortunately it is not too frequent. I am going to mention my on/off hip pain when I have my check up at the end of the month.  I'm sure it's related to the radiotherapy. I will post with the advice given by my Oncologist. Bev 

Hi 1in1500 yes my sciatica is a constant on the right side but only once in a blue moon thankfully on the left. My surgeon checked my scans in 2019 for damage to my hips & said it showed some wear & tear that had probably been accelerated by the radiotherapy & if it became too much he would refer me on to neurology & a pain clinic. I don’t know about you but my hips are so much better when I’m on the move but they seem to stiffen up as soon as I stop & sit & that’s where the pain kicks in! Yes please let me know what the response is from your Dr. 

Nicola

Good to hear from Lady Tourelle (Pam) and I hope you are soon 'sorted'.

I finished treatment July 2017 so no longer have scans, just appointments and examinations.   All have been fine, although last time I had a telephone appointment so no examination.   This should be happening next month.

I still have little problems with BM's and soreness.    I have a good week to ten days then something changes.   At the moment I go one day, sometimes twice, then next day not at all.   After a week like this I seem to go back to every day!

After a BM I often feel sore for a while and use Sudocrem.   Very little bleeding and no diarrhoea.

Like Nikki I always mention this at my appointments but no one seems concerned and I am told my skin is very fragile after radiation.

I'm 76 now and still reasonably fit and active so feel it is a small price to pay!

I'm now getting anxious about my next examunation, that feeling never goes away!

Good luck!

Hi Pam (Lady Tourelle)

How are you doing? Have you heard anything about your colonoscopy yet? Hope you’re ok. 

Nicola

Hi Nicola, thanks for getting back to me. Unfortunately I don’t seem to be logged into the group, so don’t get the mail. I hope I’ve sorted it now. I have the colonoscopy at the end of the month. I went to see a Pelvic Pain physio, she gave me exercises for the pain, which I already do nearly every day. I do yoga & Pilates. She was more concerned about my ‘ lady bits’ & soreness & sex life, which is almost non existent. I am more concerned about the pain around my hip. It is apparently muscular. I have had a stroke, which doesn’t help as the pain is the affected side. I guess it’s something have to live with. Brain haemorrhage, 2 spinal fusions & Anal cancer are not a good mix unfortunately! 
Hope you are keeping well? 
Best wishes,

Pam