I was hoping I wouldn't have to post in here again, not on medical matters anyway.
It's been six months since I finished my Radiotherapy alongside Chemo, and initially, I was fine. the odd bit of discomfort, but nothing major - but over the past few weeks I've had nothing but horrible pains in my bladder area - from one side to another, in the centre, and now right across the top. I can only describe it as it feels like I've had surgery and I'm pulling on stitches.
I feel like pulling out what hair I have left (natural baldness, not cancer related!) as I feel like I'm getting nowhere with my medical team. I say team, as I use the word loosely, reasons for which I will come to.
My CNS - can never get through to them due to long term staff sickness, annual leave - calls not returned, nor emails responded to.
My Radiologist team - the most helpful of the bunch - but getting conflicting information ranging from 'You shouldn't be getting pain now, see your GP as you might have a UTI to 'It's perfectly normal, things are still settling down.
My Oncologist - new doctor, wasn't even sure what treatment I'd had, and when I'd had it. I had to tell him what was done and when. Very reassuring.
My Urologist - "I'm a surgeon, you need to speak with your Oncologist or Radiologist team".
My GP - "I will refer you for an Ultrasound, as this is beyond what I've seen before. If it gets to unbearable, go to A&E" A young fellow, and at least he's honest.
Well, it DID get unbearable a couple of weeks ago. Unceremoniously dumped out of A&E at triage stage and sent over to the out of hours GP who was rammed. Didn't get to see a GP but saw a nurse instead, who said she had no idea, and to try and phone my Urologist secretary next working day and arrange an appointment. So, quite evidently back to square one, as per above.
I have swelling in my groin, and it even worked it's way to the base of my man bit and that's swollen up too. Perhaps in a younger life I would have been grateful for that, but not so much now.
I'm still really bloody sore, hurts to pee, have done dip tests and had samples sent off, and it's not UTI.
Which leaves me to ask, have those here that have had radiotherapy had anything like this? Because I'm kinda getting sick of it, the not being able to get answers from those that should be giving me answers.
I do have a CT scan booked for 13th Jan, finally, after yet another cock-up where someone somewhere had forgotten to book my in for my post-treatment scan )you really couldn't make it up could you?) which I am hoping my give me answers.
Oh, and before I forget, Happy New Year to you all!
Hi Nick, and a Happy New Year to you, although it sounds as if things have not started great for you. I had radiotherapy. Fortunately I did not have the symptoms you describe, but I was warned that something like this was a possibility. Have you had a cystoscopy recently as you should be due for one? I had one every 3 months at first. Sorry I have no good answers for you, only to keep trying with urology. Best wishes.
Best wishes to All, rily. What is a Community Champion ?
I was waiting for you to turn up
I had my Cystoscopy at the end of November, and did wonder if the other swelling may have been related to that - but over a month on, I'm not sure how it could be, unless it's just taking a long time to go down.
I did, however, have the pains in the groin start at the end of October, and it's really been pretty relentless since then.
Urology did say to me that I won't be called back in to discuss my CT Scan results unless they've found something, and they'd write to me if they didn't find anything.
So in other words, if a letter comes through with an appointment, time to start pooping myself! Bit of an odd way to do it in my humble opinion.
We have a family member who is an NHS dentist. Says that the NHS really is creaking, but I really do think that if the routine mammogram system can write to everyone so you have it in black and white that you are clear, so should departments scanning for other cancers.
All the best, Denby
Hi nickfreckle, what a rotten runaround you have been given. I imagine the scan may help check all is ok? Your story shows the downside to a multi team approach, no one person taking responsibility for the care of the patient. It should be your CNS who smoothes your path. If you can find the energy I think a complaint to Pals would definitely be warranted. So sorry you’ve been through all this, I hope 2020 improves for you from now on. x
Sorry you are having all these problems at the moment. My husband had radiotherapy 16 months ago for prostate cancer and last months started with what we now know to be the late effects of pelvic radiation affecting his bladder and bowel.
He sent for the Macmillan booklet, ‘Managing the late effects of pelvic radiation in men’ which was helpful as the symptoms detailed in the book were what he was experiencing.
It may be helpful to get this but the symptoms you describe don’t seem to be the normal late effects of radiotherapy.
Good luck with your scan, it may provide some answers but I would definitely make a complaint to PALS as has been suggested.
Best wishes Luce x
Not a great start to the new year and really I’ve nothing to add apart from after your CT I’d give it 3 weeks and then phone up your CNS for results of it or you would just be left wondering for what could be weeks, but as you can’t get through to her I’d go with PALS. I really hope you can sort something out.
Hi Nick. Late response because I nipped out for a couple of pints. Thinking back, I did have some unusual and worrying pains later on after treatment. I had regular consultations with my urologist and I remember him poking around my abdomen but could find nothing. Things have faded in to a distant memory and hoping for the same for you. I was told long term after effects take years rather than months. The blood vessels rise to the surface over time and sometimes cause discomfort or bleeding. In most cases, not a problem. You can see this for yourself at flexi time. One thing I have picked up over the years is that regular nurses and GPs do not have much knowledge of bladder cancer, which is why I suggested trying to contact your urology staff. Best wishes.
Thanks for the advice regarding the booklet - downloaded a copy and had a read, and most of what I'm facing is pretty normal - although some of what I'm getting does appear to be in the 'less common side effects' bit. Of course, I don't do easy, so it's no surprise what I'm experiencing is in that section.
I guess I just need to get my head round the fact I've had it relatively easy up until now, and that there's still more stuff to come most likely.
Still, mustn't grumble too much I suppose, as I'm lucky enough to still be in one piece, although there have been times I've questioned that decision.
Hi last six of 37 radio therepy treatments no significant effects apart from loose bowels and gas.Radio therepists say I will start getting side effects .Tiredness is the problem but started exercise today which helps I go for a good walk in a recreation field localy used by dog walkers .The Royal Marsden is where I am the patient and feel lucky to have been referred there. About the side effects I was talking to a radio therapist who said about the importance of a full bladder which moves the bowel away for the prostate to be in the right position in relation to the original radio planning.I seem to have a problem in getting a full bladder My appointment is early morning and become dehydrated at night so effects fluid intake and time factoring for the bladder to be full.remember this effects the treatment radio field not to be strong on the bowel
My reply may suggest that some patients discomfort side effects may be due to the circumstances of the bladder and bowels position for radio therepy to the original planning
Even that seems conflicting, because when I was having radio, they were most adamant that my bladder was empty each time. I was called in and the first thing they did was direct me to the loo so I could make sure my bladder was empty.
I have seen some improvements over the past couple of days - but not much. the pain seems to be shifting around, and it's currently in the left side of my groin and radiating down my left leg, on top of the general bladder pain. Of course, just my luck that I've also developed a slight cough, so every time I do cough, it's pulling on my abdomen and subsequently my bladder and is somewhat sore to say the least.
As I said previously, that after reading the booklet and other sources on the internet - and I don't mean things like mumsnet, but Macmillan, Cancer Research and other based both here and abroad, it does appear that what I am going through is relatively normal and not unheard of.
I suppose it's just come as a bit of a shock to the system when overall, after treatment finished, I felt really good with no side effects apart from slightly loose stools for a couple of weeks. I thought I'd got away with the other side effects, but clearly I haven't.
Yes conflicting about the bladder being empty.Full bladder is required for the radio therepy treatment I am having.Got back from the hospital a little while ago feel wacked 2 to go the finish.Guessing I require time to get over radiation effects on normal cells
When I was having my RT, nothing was ever mentioned about the bladder being full or empty, but I know the prostate guys were always given a glass of water beforehand. My side effects didn't kick in until after the treatment finished. I had dodgy bowels for a month or so afterwards in the sense that I only got a 2 minute warning and then had to go. I always had to plan any trips around toilets. Fatigue was a strange one with me. I would be fine in the morning, but about lunchtime, a wave would come over me and I could feel the energy draining away. I had to curl up on the couch for a couple of hours and then I would feel the cloud lifting and would be fine again. this all gradually subsided and thankfully no long term effects. Best wishes.
I never really got the 'whacked' feeling after radio. As I said, aside from the travelling, whist not far, on a daily basis I got a bit fed up with it, I found it all pretty easy - and luckily for me, it's only until about 6 weeks ago now that I've started to suffer a bit. Even fatigue wise, whilst the odd day here and there was a bit of a struggle, it's only been recently that it's kicked in.
Strange thing is, I still appear to have more of the annoying side effects from chemo, such as the constant ringing in my ears, and regular headaches at the base of my skull - but slowly and surely they are improving. The Oncologist said that the nerves which cause these side effects are some of the last ones to heal themselves after chemo, so I could still be getting those for quite some time yet.
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