Late skin effects 2 years after treatment .

Hello Goldie65 

I'm afraid I can't offer any really helpful advice but just wanted to answer you in solidarity.  I am more than four years out of treatment and my skin is extremely fragile and sore in the whole area although not itchy - that must be very difficult to cope with.

I have tried Sudocrem and Bepanthen which do help a little but can't treat the underlying cause which is the damage to the skin by the radiotherapy (radiation proctitis).  I am still under consultants who nod sympathetically and tell me what it is but don't offer any solution, and I have come to the conclusion that this is something I have to live with.  However, I am waiting to see a clinic about hyperbaric oxygen therapy which I initially booked for my hip tendinopathy and whilst investigating discovered that this treatment may help my proctitis more than my hips.  This is an expensive route to go down (unless your treating hospital offer this) but because my mobility has been affected and nothing has helped I was prepared to bite the bullet so a postiive effect in other areas would be a huge bonus.

I will post on here about my experience but in the meantime, I would be really interested if you find something that helps.

Irene xx

Hi Goldie65 ,

I’m almost 8.5 years post treatment & still get rashy & sore, my colorectal surgeon described it as akin to nappy rash. My skin is super sensitive where the radiation affected it. I've documented on the forum before how something as simple as slightly fragranced toilet paper can start an episode off so I now travel with my own in tow!  I can only wash with aquamax cream which I get on repeat prescription from my GP & a flare up usually responds really well to sudocrem, this was suggested by my oncologist. My colorectal surgeon told me very early on that although our skin can heal well after radiotherapy it will never be the same as it was, it will always be more sensitive & fragile. 

I hope this helps a little.

Nicola

Just to add.  Your post prompted me to discuss this with my husband who used to dive as a hobby so he said find out more about the various pressures of oxygen needed.  And further investigation showed that the pressure needed for tissue damage caused by radiotherapy (at least 2.4 ATA) is only available at a few places in the UK and under medical supervision.  So the clinic I am waiting to see won't be able to help me, nor will any of the other places that offer Hyperbaric Oxygen therapy in London apart from Whipps Cross Hospital in East London.

And I discovered this too; "Because NHS England withdrew routine funding for elective radiation damage treatments, your pathway to securing 2.4 ATA therapy will require going via a specialised private or evaluative registry route".

Back to the drawing board...

Thankyou for responding Irene ,, 

It’s a shame we can’t get the Hyperbaric Oxygen therapy on NHS. I hope it at least helps your hip pain . 
I’ve got some Sudacrem today , so I’ll try that . I’ve also bought a protein drink that also has collogen and Vit C today , so I thought I’d try that as well as I probably don’t eat enough protein . I’ll let you know how I get on.

kind regards 

Sharon x

Thanks for responding Nikki , 

Gosh 8.5 years is a long time to still have sore/ skin. 
I’ll have a look at what I’m using for washing , also I have wondered if toilet paper is effecting me .  I’ve bought some Sudacrem today and a Protein drink with collagen and Vit C to try . So I’ll let you know if any of those help . 

kind regards 

Sharon x