Hi,
I am sorry it has been a while since I’ve been on this forum.
I completed treatment and had my first post treatment MRI. The result showed no trace of the cancer. I will have a follow up MRI in four months.
It is a strange feeling being told all is ‘well’ after such a long journey through investigations, surgery and finally chemo-radiation, the pain was horrendous, as I am sure you all know.
I haven’t been left with some difficulties and pain when pooping. I occasionally have urine leakage if I try to hold it, not sure why that is, but it is very annoying.
The other issues I have is periods of extreme fatigue and pain. Some days I am perfectly well and then I get days when I have muscle and nerve pain pretty much all over. On these days I also feel exhausted.
I now also have shoulder pain all the time. I think it is arthritis or maybe some kind of inflammation. I mentioned it to my oncologist and she kind of nodded it through, suggesting that it can happen.
I would talk to my GP about it but it is now impossible to get an appointment. I’ve been waiting three weeks to talk to them about my bum pain when I go to the toilet with no indication that I will ever get an appointment.
Has anyone else on here experienced joint pain after treatment?
Hi LCraig that's brilliant news that you are all clear so happy for you. My oncologist told me it takes a good year for your body to recover from the treatment and get back to normal or a new normal. Im just over 8 months post and still feel tired sometimes, I also get achey tight hips so I'm doing some mobility work to sort them. Did you have a specialist nurse you could contact when having treatment, if so maybe worth contacting them if you can't get a GP appointment i still ring mine if I have any questions or concerns. Your body has been through a lot and it takes time to recover, also the radiotherapy treatment is apparently still working upto 6 months post treatment. Be kind to yourself eat well and exercise if you can it will help. Sending hugs. Xx
Hello LCraig
I am delighted to hear that you first scan was clear, that is such good news and isn't it such a relief after the nail-biting wait once treatment is over?
I found that whilst my treatment was absolutely faultless and I have regular scans and consultations, I experienced a lot of the 'nodding' too when I updated the oncologist on my after-treatment symptoms. I now think that their remit is to get rid of the cancer and you will have to self-advocate with your GP for other care. Some hospitals do have side effects clinics but I was never referred. Fortunately my GP is very proactive and has lost no time in referring me for additional treatment.
I definitely have a new 'normal'. Fatigue (not all the time), osteoarthritis in both hips, anal and urinary tract stenosis to name but a few. A year ago I had an elective stoma which has been life-changing for the better for me, I have had virtually no problems with it and no longer have pooping problems or extreme urgency. I keep cushions round the house and in the car because my bottom aches when I sit and the new skin is extremely sensitive.
I would say that pooping was still painful for me three months after treatment but it did ease off although never quite like it was before. And I do pelvic floor exercises along with panty liners for very slight leakage (but I don't think it is urine).
It sounds a lot but I cope really well most of the time. I am more than three years out of treatment and accept that this is my life now, for the most part healthy!
However, and it is important to remember this, there are forum members whose lives have more or less gone back to as they were. It is very early days for you and Bungle1 has give good advice about exercise - I find walking my dog does loosen me up.
Big hug
Irene xx
This is a really interesting post for me. I had immunotherapy and that caused problems with inflammation so I was hospitalised with colitis and then pneumonitis. I'm now struggling with inflammatory arthritis.
Bungle mentioned about a specialist nurse and that's a really good idea if you have one. It was through mine that I got referred to a rheumatologist who now works with my oncologist. I'm on arthritis drugs now and sulafasalozene is also given to people struggling with colitis. I had a flare up earlier in the year and those tablets really helped me. still struggling with my joint pain though.
I'll cling on to Irene's last paragraph as although I'm cancer free at the moment I'm certainly nowhere near where I was before the 'journey'.
I wish you all the best and continued improvement
Hi Craig ,
I’m so pleased you have the all clear but sorry you’re suffering side effects . Hopefully they’ll improve as time goes on .
I’m 6 months after treatment , my hospital only do a digital examination at 3 months , then MRI and CT at 6 months . At the 3 month check I was told tumour had gone and the oncologist said likely lymph nodes would be gone too .
I’ve the results of my 6 month MRI and CT tomorrow . Hoping I’m all clear !
I’ve also developed hip pain over past 2 months . It’s quite painful walking and climbing stairs and wakes me up from my sleep when I turn over . Eventually got a GP appt who said it was Arthritis although he didn’t examine me or do any tests . I wondered if I’d pulled a muscle . Anyhow he agreed to let me have some physio . I’m hoping it improves soon as I can’t go on the long walks I used to enjoy .
I hope you start to feel better soon , seems a few of us with post treatment pelvic pain .
kind regards
Sharon
Hi Goldie,
Wishing you all the best for your scan results today. Everything crossed for you.
I also hope that the physio helps you and that you’re able to get back to your long walks. I too have experienced pain and mobility issues post treatment and know how frustrating it is.
xx
Good luck Goldie 65 for today! Fingers crossed for you.
Happyflower x
Goldie65 - good luck today and please let us know how you are x
Hi Malph , like many that have pelvic radiotherapy I too ended up with hip pain & bilateral sciatica, I had some early signs of osteoarthritis in my left hip prior to treatment but it was so much worse after treatment had finished & I was recovering. I went to my GP who sent me for X-rays which showed some mild osteoarthritis so she told me to self-refer to physio, my physiotherapist said he thinks it’s something called greater trochanteric pain syndrome which from what I understand is chronic inflammation of the greater trochanter muscle. I was given exercises for that & the sciatica which although they don’t alleviate it completely it is much better. It would be worth self-referring to physio to see if they can help you too. Goldie65 this may apply to you too, when you go to physio it’d be worth mentioning.
I’ve just begun an application to join a 14 week program based on strength & balance as the physio said with arthritis it’s important to keep your muscles strong so that your joints are well supported.
Nicola
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