Late side effects of chemoradiation for anal cancer

Hi Betty , 

I went through my treatment 20 months ago with few problems but after 4 months late effects set in .. although mine aren’t the same , I struggle to get any help and advice even from the late effects clinic at my hospital .,

I hope you have a clinic near you that can help ? 
take care 

Chrissie 

Hello Bettyc 

Unfortunately there has been a quite a number of posts recently with people suffering various late-onset side effects.  Pain in the thighs and groin can be most debilitating, my pain is in my hips and I had an MRI last week as the MSK physiotherapist thought I may have muscle tears in the area.

It took quite a while for me to get to the MRI last week, I had a DEXA scan, physiotherapy and hip x-rays which showed degenerative arthritis in both hips.  Pain killers don't help much and I was referred to the hip clinic for triage which led to the MRI.  

So, in your shoes, if your pain doesn't improve, I would start going down the investigatory path (if you can).  Your thigh and groin pain could be caused by your hips and it is worth getting everything checked out.

Best of luck Betty

Irene xx

Hi,

I have been suffering with bilateral hip pain, pelvic and buttock pain since finishing chemo radiotherapy in Oct 2023. The pain is a constant and quite debilitating at times.

i feel like during all my hospital appointments that nobody has really listened to me and initially said the pain was expected for the first 3 months post treatment.

 I have been referred to physio, pelvic physio, pain clinic (utter waste of time) and in January was referred for xray and that has shown degeneration in both hips. I have now been referred for hydrotherapy and CMATS. I hope and pray they can help with this pain  

GP started me on pregabalin, not sure how much this is helping but afraid to stop until I have been seen by someone who can actually give me answers. 

last year I started going to the sauna and cold plunge pool. This helped for a few hours and felt I could walk normally again but soon wears off.

This is definitely down to the treatment as prior I was able to walk, jog, horse ride and could walk upstairs without being in pain. 

Hi AW3 ,

I really do feel your pain! 

I’m almost 8 years post treatment & after suffering with exactly what you’re describing a couple of years ago I went to my GP who following a hip X-ray said I had the onset of osteoarthritis in both hips & told me to self refer into physio, I did this & was told it wasn’t my hips but Greater Trochanteric Pain Syndrome & bilateral sciatica. I was given a physio program which helped for a while but things have got progressively worse especially this last year. I’ve recently had steroid injections for the GTPS which didn’t help at all so I’m back to square one! My GP has referred me for an MRI on my lower spine but from what I understand this can take months & I’ve self referred back into physio, I had a telephone consultation yesterday & have a face to face  appointment on 24th of March to see where we go from here. I feel my mobility is being impacted greatly, I’m a young 60 years old & have so much more  that I want to do in my lifetime. 

Nicola 

Hi Bettyc,

Im sorry that you’re experiencing pain and can see from the responses you’ve had that you’re not alone.

I finished treatment in November 24 and developed sudden intense sacral pain radiating to hips in February 25. It came out of the blue. I had a spinal mri which showed several areas of stenosis with nerve contact. I was urgently referred to the pain clinic last march and have finally been given an appointment for next month. 

I don’t think that there is much guidance on the after effects of pelvic radiotherapy, although some areas do have late effects clinics. I know that we don’t have one in Sussex but might be worth exploring if there is anything where you are. It seems that many of us develop pain after treatment despite having been active and fit before.  

I really hope that you can access some help with this.

xx

Hi I’m 4 years in remission and yes I get a lot of pain in the same areas also at the tops of legs back and front, I put  it down to the radiotherapy.

Laura x