locally advanced prostate cancer

Hello Eddiel.

Welcome to the forum, my partner has locally advanced prostate cancer. He was diagnosed a year ago and has since gone through a whirlwind of treatment involving Hormone treatment and Radiotherapy. He is doing very well and we have settled back into normal life again. If there is anything you want to ask please do and if I can help you I will. Hopefully someone else will answer who are nearer Doncaster with some advice on classes. Do you have any stats like your PSA and Gleason score? and what treatment are you having at the moment? 

This is a good forum to be in, because there's lots interesting chat, information and support to be had. This is a place where you can relax and share your fears knowing that everyone here will understand where you are coming from and hopefully have answers to questions you may have. 

Best wishes 

L

Hi BarryW, thanks for your message, i was diagnosed july last year and was told straight away it was terminal. i too have been through  radiotherapy 20 sessions in april and prostap for life, had a TURP done in january as well, my gleason score is 4 plus 4 and my PSA 0.08, i went through a rough time after physio,-i have other health issues- for about 12 weeks, but i am doing ok. my main problems at this time are  too much broken sleep mainly due to an over active bladder, i have done all what to, how much and when to drinking routines, and tried several meds so if anyone has any suggestions no matter how weird, it would appreciated. PS cannot do sleeping pills too many unpleasent side effects and definately no operation, my heart and anaesthetic do not get along. and for anyone wondering how i managed the TURP operation with anaesthetic i had an epidural with the lowest dose possible and still my heart stopped twice, look forward to hearing from you. and thanks again BarryW and good luck.

Hi eddiel.

I also welcome you to our group and hope you get the help you need. First you say you have been told you are terminal.Sometimes we do not fully take in what we are told at initial diagnosis due to the stress of the moment or mis interpret it. With locally advanced PCa you would normally be told that it has escaped the capsule but is still very treatable and with a good prognosis. Your stats at the moment are very encouraging but your main issue is night time incontinence due to an overactive bladder. Certain foods and drinks can irritate the bladder such as anything acidic. My husband always adds a pinch of bicarbonate of soda to orange juice etc. We have also switched to caffeine free drinks and avoid anything fizzy. You could also try bladder retraining if you haven't already done so. Kiegel exercises are a good start. A continence clinic should be able to help. This is just throwing out a couple of ideas to mull over. 

Look after yourself and let us know how you get on. Also if you have any questions then just ask away no matter how small.

Hello eddiel  As BW said - a warm welcome to the club you didn't want to join.

I am so sorry to read of your diagnosis - "locally advanced PC" is usually described as "treatable" and not terminal so there is plenty of scope for you to have a great quality of life.

I don't know if you are aware of the Maggie's Centres - these are cancer support centres where you can drop in - have a chat and discuss your issues - I am aware Doncaster is well served by train and there are Maggie's centres at St Jame's in Leeds and City Hospital in Nottingham. Why not contact them and consider a "day out" for some support.

Other than the above - I am sure other Community members will be along to give you their personal ideas to reduce "the flow".

Best wishes and keep us posted as to your progress.

Brian.

To alwayshope and millibob thank you for your support. i will look into kiegel exercises and Maggies centers. I am a very positive person, but for the urinating problem which is not constant and can range  from barely an issue having to plan ahead to leave the house, and not having a good nights sleep for 18 months life is good. i was able to retire early have a wonderful partner and friends, good support  from macmillan nurses, district nurse, an open door arrangement with my urology department, my hospice and my cardiologist and oncologist.. I am also a realist, i was in healthcare for 15 years, 5 of which were in end of life "95%" cancer care, and know prostate, lymph gland, bladder,bowl and anal gland cancer, as well as ACHD and an aorta at 53mm is not good, but i have always been  a glass is half full person and will make the most of my remaining time, PS I have died 9 times 4 of which i was extremely lucky too due to heart issues so i have a good perspevtive on life and know to make the best of it, also while doing end of life care the biggest regret by far by patients was giving up to early, take care eddiel

Dear laws!!!! definitely not doing terminal. Much prefer the word "treatable" with a dash of denial. My partners treatment is full on with a heavy mix of HT, steriods and retail therapy and he seems to be doing well at the moment. The over active bladder is indeed a problem and my partner shares your pain on this, averaging three to four trips to the bathroom at night, which are also accompanied by a hot sweats and me shouting "For Gods sake can you turn off the light!!!"  Just lately he's tried not drinking anything past 8pm to see if that has an effect, but it's made no difference what so ever. So now he's going to start with the "Kiegal" exercises ( Thank you Always hope for that tip) and hopefully there will be improvement. 

Hi Barry W.

 At least my husband makes his nocturnal visits in the dark on auto pilot and hasn't gone into retail mode. A couple more tips. There is an app called the "squeezy app" which reminds you when to do the Kegel exercises - more is not necessarily better, just keep it to 3  or 4 sessions a day. Also when you go to the loo don't immediately void but try and hold it first for a couple of seconds and then release, getting to the point where you can hold it for 10 seconds. Another one is to fully void, sit or stand for a few seconds and then try and void again (double voiding). Finally you can try and retrain the bladder by initially voiding at hourly intervals, then gradually increasing the time between each void. All of these techniques are designed to strengthen the muscles round the sphincters and in the pelvic floor. Unfortunately patience is the watch word. 

hello again alwayshope looked up kegel exercises.i know them as pelvic floor exercises and habe been doing them for about 10 weeks and they do work. i have also taken millibobs advice and will be going to Maggies Centers on monday, had two bits of good news today MRI tests show no sign of MSCC and my heart is stable so it looks like i will have to go to Australia with my partner, being ginger and bald it does not suit me, anyway two questions to those of us with bladder problems. am i the only one who"s bladder control worsens with any minor cold or virus and does anyone think during bedtime that they wake up because they need to pee or they have a pee because they wake up, in the 18 months of poor bladder control on the rare times i have managed to sleep for over 5 hours "my usual time is 60-90 mins" i have never wet the bed, anybody who has an idea  how to get out of going to Australia please let  me know. take care.

Hello eddiel.

That's some great news about the MRI and the heart - and I hope your visit to Maggie's is beneficial. Regarding the visits to the toilet - yes I can go 2 - 3 times in the night - it's no bother, up - wee - back to sleep - no bed wetting - in fact I am so used to it it doesn't bother me.

Australia - wow - I would love to go but just think about the cost of travel insurance (my worldwide policy cost just over £ 750 this year). I do pay it because we travel quite a bit and as I write this it's a lovely sunny morning on my balcony in Turkey. .

Best wishes - Brian.

Great news with the MRI eddiel and I hope you find the Maggie's centre useful on Monday.

Haven't made any association between colds and flu with increased urination but if you think about it you tend to drink more and have things like soups when you are feeling under the weather. The body naturally tries to flush bugs out of the system so this could be a reason?

Your on your own with trying to get out of going to Australia. I understand they do a good line in hats with corks hanging off the brim.

Take care.