Radiotherapy

Hello W, sorry to read this. Did your radiotherapy department give you a 24/7 helpline number? My husband was given one although we didn’t need to use it.  If not, I would suggest looking at nhs111 on line or telephoning them.  I’ve had to do this a couple of times this last few weeks for my husband and they have been very helpful - although the system is long winded ( ie 3 triages this week with 3 different people before they decided my husband needed to see a GP f2f. I do the telephoning because my husband is waiting for new hearing aids and can’t hear on the telephone very well, because he has felt too poorly to be struggling to make sense of said calls and because, actually, he is not very good at articulating his problems and if told something inappropriate he is not able to challenge. They usually ask if I have his consent to talk. 

HTH and hope you get the help you need.

Thank you, WW.

This is what I needed to give me a feeling of backup, I don't want to be a bully or a nag about anything my partner does as it's his decision, he thinks his blood tests will be read now and if there was a problem it will be dealt with and he maybe right, but I'm concerned that they won't be looked at till Thursday,. Because he is having his entire pelvis done I wonder if it could be too much in one go, it's a large amount of bone marrow in the firing line. I don't want to be over dramatic, but I do think nothing is lost by phoning up and having the discussion.

Many thanks for your support

L

Hi L Sorry to here of his issues. At the start of each RT session I was asked if I was Ok, any changes to urine, stools, any new pain or any changes to my eating and drinking - for me I had no issues - but I was told to advise Radiotherapy if any changes were noticed even over weekend. (I was at Christies in Oldham and this is a cancer unit open 24/7 with out and in patients).

As WW says changes in bloods below the maximum and minimum values are a worry. I would either contact the department requesting the blood be done or as it's a weekend 111.

Sorry I ain't much help and hope you get it sorted.

Kind regards

Brian.

Hi Brian, 

you are helping, I’m usually so on it, but now and again I need to reach out. This forum is great because there’s always someone that know’s what you are talking about and what you are feeling. I didn’t think about his discussion with the Radiographer on Monday which will happen, so that’s a good thing. 
L

I just wanted to do a bit of feedback for both of these problems for anyone that maybe about to have RT. incase I've made you worry. We  saw the consultant today and had a chat about these issues amongst other things and this is what he said;

The back and now my partner has hurt his neck, is probably more down to holding a ridged stance whist on the table having the treatment. rather than anything sinister, as he feels he is unable to relax incase he makes the RT go somewhere it's not aimed for, so he is tensed up through the whole procedure and then I guess thats effecting his back or neck after.  But it is very important to not do any high impact sports- Rugby/fighting etc. (though can't imagine anyone has the energy for that!) because any injuries will take longer to heel, because of the lack of testosterone. 

The low bloods are ok and a common thing, you only need to worry if they go down to 1 (the lowest norm is roughly 4) If it's in the 3 area like my partner its ok, but need to keep an eye on it.

L

Hi L - Thanks for the post and apart from the low bloods and the back and neck issues I hope all is going well - I think he's got another week - and then he's done. Hope there's no side effect and the fatigue isn't too bad.

You know me - so laid back when I was on the "sunbed" during one of the later fractions the Radiologists had the Abba Gold CD playing and they left me for the 8/10 minuets of my session. When they came back to let me off the bed they advised me to give up karaoke. 

At my age the only high-impact sport I do is dominoes!!

Good advice though and thanks for sharing .

Best wishes

Brian

Thats very funny, I will always think of you now when I hear Abba playing Yes he has another week it has gone quite quickly really. The consultant also said he would be on HT and Abiraterone now for the rest of his life now which was a bit of a surprise as we both thought was 18 months to two years after RT. So we are making another mental adjustment to that one, something we are both learning with this game is that you never really know what's next.

I am aware he has locally advanced PC and I agree with you that I would have thought the HT might be 18/24 months but not lifelong. As I understand it his RT was to treat the entire area - pelvic area - the lot to try and mop up the spread.

I am aware that there is (don't forget I am not medical and only started reading /understanding PC 18 months ago!) a valid argument about life long HT where it should be given over a period and then stopped, have regular PSA checks and resumed if the PSA increases over a certain level. Perhaps this is one for the consultant at the post RT meeting 3/6 months later.

As an aside - is he on Calcium / Vitamin D tablets as the HT weakens your bones? (it's great this PC and being old - I rattle in the morning with all the pills I take!!).

On the up side, only another intensive week and then the RT's done - once I had completed mine I felt in the wilderness, no appointments for 6 months - a strange feeling!

Best wishes

Brian.

Hi all,

I have been away from this forum for a while and still waiting for my RT to start.

I have been waiting for my RT appointment since I had a copy letter making the request to the Consultant Clinical Oncologist back in January 2023.

I had my PSA checked early May which came back with 2.63ug/L, so I'm encouraged by this significant drop from my initial 39.

I know consultants will be going on strike at some point and I'm naturally concerned at how much longer I will have to wait for my appointment.

I did call my urology nurse a few weeks ago but they couldn't help pretty much saying that I'd have to be patient and wait, there's many of you in the queue!

I'm getting anxious about what's been going on with my cancer during all this time waiting.

Obviously the HT is doing its job slowing things up ready for the RT but once again, it's the waiting not knowing etc.

Thanks for any advice that you can give.

Graham

Hi

I'm a little bit behind you in treatment as I have yet to start HT

But I do share all your concerns about what are these delays doing to me and my prostate

It's certainly a worrying tome for all of us especially with the radiographers now threatening strike action If they do strike What will be the effect on any of us ?

Regards

Pita63