Chemorads/Brachytherapy late side effects

[Derry71]

Just wondering if anyone else experiencing the same?

I’m now 4.5 years out of Chemorad treatment with all clear scans. (Stage 2B early advanced squamous cell)

Since early part of this year I’ve had stinging in my rib cage, and occasionally pain in the bones of my pelvis (dull ache) pretty similar to symptoms prior to diagnosis. I’ve had chest x ray and mammogram…all clear. In my check up with Oncology last week I had the news that I’m at 1% chance of recurrence and most likely to be signed off at my next appointment in 6 months.

Discussed these pains to be told it’s nothing to worry about, most likely Radiation Fibrosis. I was quite sensitive to radiotherapy which resulted in me needing a replacement hip last year.

Anybody else have the same and how do you control the pain?

[Jimbo65]

Hi Derry71, hopefully the hip is good and you are mobile. That's the key. Mobility. You have to find some gentle exercise that will keep the body moving. Ask for some pain management from your GP And if there is a hydrotherapy pool near you see if you can get referred. Some physio and maybe some osteopathy might help too. Also ask about taking supplements like Vitamin B12 , calcium and magnesium . Wishing you all the best. Xx

[Derry71 in reply to Jimbo65]

Thank you any suggestions are most welcome and will be tried. Anything for a pain free day x

[Dustyangel]

Hi Derry,

Can I say a very well done to you beating this, its a very encouraging news! I myself have got 2 appointments to go until I'm set free. Its been super hard right from day 1. My treatment chemotherapy radiotherapy chemotherapy and brachytherapy came to an end just before Xmas 2019 ,and the end of Jan 2020 I started to get side effects which still affect me today. I was told its gonna be pretty much now the same for the rest of my days. I've had insufficiency fractures to the pelvis, trouble with water works and bowels, pretty much pain everyday! I take cocodomol amitriptyline for the pain and take medication for bowels and water works. (Incontinence/frequency/urgency) issues. It dosent help much tbh. Also tiredness and fatigue . I'm also on hrt for early menopause caused by treatment. I've also have been diagnosed with osteoarthritis in my hips no one is taking account for this one says it's cause of the menopause and the other blaming radiotherapy! I know for sure I did not have this before radiotherapy! It's a long hard journey hate to use that word, but I've accepted this is mylife from now on, I've beaten something that no one wants and I'm very proud of myself and our NHS without them, we'll I hate to think. It's just upwards and onwards from here its really hard not to dwell expecially on the harder days and I'm sure we all have some kind of ptsd, but hold your head high be proud of all you have overcome ❤️ all the best to you x

[Derry71 in reply to Dustyangel]

Hi Dusty Angel thank you for responding! I was diagnosed Jan 2019 finished treatment April 2019 so we are on pretty similar timelines in our journey. I have everything crossed for you being set free too. To say this has been life changing is an understatement. However during treatment the only thing I suffered with was painful urination and a very active bowel and towards the end quite tired. The overnight menopause wasn’t a delight don’t think I’ve had a day since without an ache or feeling tired. My oncologist knew it was the treatment that cut off the blood supply to my hip joint which resulted in avascular necrosis..cue 15 months on crutches until I was given a replacement hip. The same year my hip gave up I had necrosis of the cervix which was excruciating pain and at the time it mimicked a recurrence even on the MRI. Don’t get me wrong I’m so grateful to be here alive and somewhat healthy and our NHS got me there !! They do mention achy legs and stiffness and bladder and bowel issues but I didn’t realise the extent of damage radiation can do to you. I literally feel like I have been kicked in my left side all day everyday. But I’m here and that’s what matters. Just wish there was an easy fix for the pain. Xx

[Dustyangel in reply to Derry71]

Hi derry, oh my goodness that is horrible that you had to go through all of that aswell as the treatment and side effects. I too never realised how damaging radiotherapy could be.. I think they wait (until in my case anyway) until you ask them about the pains or whatever. My left side is much worse than the right I learned that radiotherapy was mainly on my left so that explains that. Sorry if tmi my bottom put politely as I can feels like I'm pooing through a straw, hence laxidos everyday! I've had bleeding in my bladder which I've had bladder installations to repair the walls of bladder and so far so good! Yes the overnight menopause is something else never thought it would be that bad either until it hit like a brick. I do also have the feeling that I've had a kick on the left side, my knees are also knackered which I find odd but I think menopause has something to do with that with joints even my shoulders ! Pain relief dosent really work been on it now for years so probably dosent do any good now, but not going on to anything stronger as I need to work and also live a life, without being drugged up to the eyeballs! There is no easy fix wish there was.... but we are here for that I am thankfull xx

[Jimbo65 in reply to Dustyangel]

Yes, we'll said. Positive attitude is so empowering. But don't be fobbed off by consultants blaming menopause. Radiation causes weakness in the bones and put that with medical menopause and its a double whammy for the joints. So again get advice on supplements. Do not give up HRT unless there's a history of breast cancer in the family. Do use dialators as it's really important to help bowels and bladder as well as pelvic floor exercises. Find your nearest late effects clinic too. We've got different bodies now and it takes time to come to terms with that. Find your way to do that and its onwards and upwards ladies. 🥰

[Dustyangel in reply to Jimbo65]

Hi Jimbo, thank you for your reply. Fed up tbh with getting fobbed off, I would be at my GP every week with something I'm just not like that. So mainly suffer in silence, apart from this group where we can all learn something from people who have been through the same or similar. I haven't given up on hrt still on it don't think it makes a difference with regards to joints there is no history of breast cancer in my family but as a precaution i put them on my upper thighs.(patches) and take an oral pill also. those awfull dilators well say no more I tried and just couldn't. You are right we are different than what we were previously there is no doubt about that x

[MPG15 in reply to Dustyangel]

Hello Dustyangel

I was absolutely 100 per cent like you. Couldn’t bear the thought of a dilator let alone trying them. However… eventually I was persuaded and I just wondered if you had tried the silicone dilators? Nothing like this hideous torture of the hard plastic NHS ones… why NHS???? Like we’ve not been through enough!!

The Silicone ones come in a much better range of sizes (ie tiny ones to start with!) plus they’re much softer and kinder to use on our delicate parts. You can use them with a lubricant like YES gel (or if I find it particularly painful I use a bit of Instillagel which is a topical anaesthetic gel you can get from GP or buy online). Bloody godsend!

Initially I just used them vaginally but post treatment after I’d healed we discovered the scar tissue had really gone to town in my back passage (I had stage III anal cancer) and I found it just agony going to the loo at all so I then bought a set for that and it has worked (slowly) but worked so I can pass bowel movement more easily.

The silicone dilators are expensive but absolutely 💯 worth it. Frankly my sex life isn’t going to be taking the roof off anytime soon (sorry darling husband) but at least I know I can if I want to and if I’m able to stay awake past 9pm at night 😂 (that’s a fib I’m asleep by 8:30 🤣🤣🤣) rock n roll !!!

Xx

[Dustyangel in reply to MPG15]

Hi there, thank you for your reply. It's good to hear that you have found something that suits, those NHS issue ones look like they should be in a museum! I have not tried anything else tbh and I have not let my partner near me either since diagnosis, which was in Aug 2019. The treatment has also affected my bowels it feels like my back passage has shrunk if that makes sense so very painful to pass bowel movements and get fissures also. I get round that by taking 2 laxido everyday to make it easier to pass, sometimes it still hurts stings and burns nippy kind of feeling. Not sure if it scar tissue? I'm not to good in telling my consultant everything mostly I keep things to myself, find it hard to explain properly., with all the other issues that are ongoing nothing has seemed to get any better so I just get on the best I can. There is always a constant reminder of what we all have been through, forget what it likes to feel 'normal'. I'm also done in by that time too after I take my extra painkillers so I can actually get a decent 5/6 hour sleep ! How's things going for you regarding follow ups? 😊xx

[Crossing41]

Hi there, fabulous news from your doctor! I can’t say I had your exact symptoms and have been cancer free for 41 yrs. However, all my post-cancer challenges have been from The effects of radiation therapy to my pelvis. My best advice is that even when given the all clear, find the most knowledgeable doctor for your post cancer care. I’ve had some great ones but they all totally missed the vascular disease that developed and sent me on a wild goose chase of pain mgt, orthopedics and PT for over 2 yrs. before discovering I had a blockage in my iliac artery from scar tissue -so if you are anything like me, you’ll always want to be diligent around your symptoms. Best wishes.