Radiation fibrosis

Jaycee, that must have been so worrying for you, and I am so relieved you had it all checked out and the results came back NED.  I must admit I had to google radiation fibrosis too and like you, I found that treatment is massage of the area.  I wonder if specialist physiotherapy would help, I googled that too, and there were lots of links and also some to some very complicated medical papers that mostly went way over my head.  Dr Google eh?  What came out of Google is that there is further treatment so if you don't get much relief, I would follow it up.

In the meantime, I hope the gel helps, not least with the itching which sounds unbearable.

Irene xx

Oh Jaycee, how miserable, and this far out from treatment it's just too cruel to get smacked with this! I didn't know this was a possibility either. Keep us posted on how well the lidocaine gel works. 

:( Suz

Hi Irene thank you for your comments. I am just so relieved that the itching/pain coming back was not the cancer. It shows us all that when these things happen it’s not always what we think but is important to let your medical team know what is happening. Yes I also found some literature regarding the radiation fibrosis and found a physiotherapist on you tube who was giving information about the fibrosis on those who had breast cancer. When it mentioned swelling, lumps and tenderness that was what I was experiencing and as we have radiotherapy in our very tender regions it causes painful bowel movements. I am not at all sore externally and the soreness is just inside. I am waiting for the gel she has arranged to be sent to me and hopefully this will help. I am finding using the anusol pessaries just at night helping. I am going to find out how we can massage this area to break down lumps. I wanted to write all this as I am sure some on here will experience these symptoms too.

Hi Suz I will let you know and what I find out about preventing it progressing. It can happen years later. When I had my first child she was premature and I had to have forceps and an episiotomy which was a big cut. I had quite lumpy scar tissue years later and my doctor said some people are prone to producing too much collagen in your skin and the scar becomes a keloid scar. 

I agree.  I have all these peculiar aches, pains and twinges and was really fearing the worst at my last scan.  In fact I was trying describe the feeling to the oncologist, and she said like a period pain?  And yes it was.  But everything was fine.

I also totally agree about describing your experiences, I debated whether to describe my sores but in the light of how well I am now I thought it was worth putting it on here to reassure others who may think they will never get over it.

Hi Jaycee12 ,

Thank you so much for taking the time out to post about your symptoms and the outcome of the investigations surrounding this. It must of been a worrying time for you. Radiotherapy really is the gift that keeps on giving isn’t it? I know personally how easy it is for your mind to shoot straight to recurrence when you have certain symptoms & I do think to a certain degree that will be with me forever, maybe this is the legacy of having any cancer diagnosis. I completely agree with the difficulty of mainstream treatment for radiation fibrosis & our particular cancer type/position, obviously massage isn’t an option, I wonder if doing some pelvic floor exercises might help? I know you’re not working the muscle in the same way as with massage but you’re still working it & I don’t suppose it could do any harm. I hope you get some relief from the gel prescribed by your oncologist. 

Nicola 

Thank you Nicola. I just wanted to make a point, although we should get things checked out if we have symptoms pop up, that it doesn’t always mean the cancer has come back. Reading about radiation fibrosis kind of makes sense regarding painful bowel movements and the swelling. I think doing pelvic floor exercises is a very good idea and I have seen one at my local hospital and when I go next time I will tell her about the fibrosis and get some information. I will let you know how the gel does. I am away at the moment and hopefully this will be on my door mat when I get home.

Seen a pelvic floor physiotherapist which I omitted in my post!

Massage to the anal vagina vulva l area . Look up lymphatic massage on YouTube.

Hello Jaycee, 

So pleased to hear you are NED! I am 18 months post treatment and have exactly the same issue that has been progressively worsening. I use Instillagel to help with the pain. The massage thing seemed beyond me! 

I am now experiencing the weird flashes of pain I used to get prior to my diagnosis but none of the feeling of fullness etc. my last scan was Dec and all was fine. She reassured me it was stenosis (scar tissue). Hence the pencil thin poos again as it’s really narrower things and occasional blood. Sometimes if I’m not careful about taking softeners I can tear the scar tissue. Now that does make for some expletives in the loo!!! 

I am due for my next onco appt in June and at my last appt she did mention they can do a surgical procedure to help “stretch” the scar tissue but it has setbacks and complications so I’m just going to continue for now. The Instillagel is an anaesthetic gel so sounds similar to what you’re using and it comes in a handy pre filled syringe so if you’re doesn’t do ask for that as it helps to get it in the right place! 

You’d think after all we’ve been through already we’d get a break but unfortunately although we may be in remission or even cured we are left with life changing outcomes that can be a hurdle. Its hard always to be positive about things, afterall I’m alive and so grateful but you can’t help feel it’s a bit unfair and be a bit worried if it’s returning. Luckily we have this forum full of useful info that helps us realise we are not alone  sharing info reminds me to feel a bit more confident that these things are normal  there will be issues but not to overthink them (which can be hard at 3am when you’ve got a horribly familiar pain!). 

I should also say I’ve got a referral to see a Biofeedback team at St Marks in London. Biofeedback is a retrain on how to go to the loo (sounds ridiculous) but apparently really helps and frankly I’ll try anything!  So I’ll keep you posted once I’ve seen them. Apparently lots of hospitals around the country have this Biofeedback so might be worth a look. 

Best wishes to all

PPR x