Advice/ guidance

Hi I really know how you feel I’m also a nurse caring for my husband. He was diagnosed last year with advanced prostate cancer. At present he’s on hormonal injections 3 monthly and is awaiting date to start radiotherapy. We have been told if he doesn’t have radiotherapy, the cancer will spread. My dad also passed away in December so times are tough but I try and keep positive. However my hubby has a negative mind set and is suffering with pain and discomfort of this horrible illness. I have decided to drop some hours at work, as I’m finding it difficult too. The only thing you can do is give him the support and take this time to be with them both in this situation. Sending virtual hugs 

Hello Nursebytrade  A warm welcome to the online Prostate Cancer Forum.

I am so sorry to find you here but you are in a good place for help and advice (I am married to a general nurse and I know cancer isn't a speciality). So a "Grade 5 Prostate cancer" is aggressive. I have put a link below to a cracking booklet from Prostate cancer UK that should help you understand the diagnosis:

https://shop.prostatecanceruk.org/our-publications/all-publications/how-prostate-cancer-is-diagnosed

Prostate cancer thrives on testosterone - your grandad's hormone therapy will remove his testosterone and stop the cancer in it's tracks. As it's possible it's spread - then Radiotherapy and possibly Chemotherapy will follow, The best advice at the moment is to keep him as active as possible and exercise as much as he can. Personal advice, get round with your grandchild as much as you can now - that's a type of therapy and a positive attitude from grandad can be half the battle.

Ask anything you want - it's OUR Community and YOU are a member. You will get answers.

Best wishes - Brian

Hello Blue67  Again a warm welcome to the Community.

So sorry to read about your dad and your hubby's mind set. With Prostate Cancer pain and discomfort are not something everyone gets - have you brought this up with your team?

I would also suggest if you don't mind me doing so:

* Have you thought of joining our Carers only forum You can do this by clicking on the link I have provided. the forum has plenty of other people in the same situation and it's a great safe space to swap ideas and chat.

* There's plenty of help and advice from the Helpline on 0808 808 00 00 (8am - 8pm 7 days) if you need just that bit of inspiration, give them a ring - we are all here for you.

I know it's hard when your other half has the wrong mindset - but we are a Community and we are all here for both of you. You remember we are here for YOU  too - don't take on everything yourself - we have a thread "No Specific Topic" you can join us there to vent, moan or even discuss do-nuts - It's just an "out" away from this cancer where we chat.

Think of the Community as an extra bit of family - we are there for you.

Best wishes - Brian.

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Hello Nursebytrade and Blue67.

A warm welcome to both of you. I am from a different side of the profession in that I am a microbiologist but everyday has been a steep learning curve with this horrible disease. My husband is T4, Gleason 9, Grade Group 5 with spread to distant lymph nodes and an odd area behind the pancreas but also a low secreter which basically meant he was given possibly 6 months. As they did not have a standard route for treatment, or know how he was going to respond to it, then it was a difficult few months initially but here we are 3.5 years later and he is still going strong and we have a good quality of life, albeit different from what we had initially expected. I won't deny that it is a rollercoaster journey as he shows resistance to different drugs at about 18 monthly intervals. He had 33 sessions of radiotherapy to the whole prostate area in 2020 including lymph nodes which was successful and has left him with only slightly weakened urine control. He has also had 6 sessions of chemotherapy last year which worked but we are investigating why there is a slight rise in PSA again. It is difficult to treat the area behind the pancreas because of the risk of damage to other organs in that area. My husband's biggest battle is with the mental side of things and with the fatigue so keeping as fit as possible is essential, as is a positive attitude to release the bodies endorphins. He does have some pain but this is controlled with drugs - it is trial and error finding the right combination. Diet wise there are things that are recommended, particularly when going through treatment, but generally it is a good balanced diet, reduced alcohol, caffeine, processed foods - you get the picture. Hot flushes can be a side effect of the hormone therapy and we find that having 1 - 2 cups of sage tea a day controls this, although others take a sage supplement and for some it is medication. Loss of libido and ED came on soon after starting hormone therapy so we have lots of hugs and cuddles and are still extremely close, in fact it has brought us closer together as we have come to terms that our time together is limited so we are making the most of it. A wobbly willy has developed the longer he is on hormone therapy so he has to sit down to go for a wee - I got fed up cleaning up after him as he couldn't point Percy.

Others with an advanced diagnosis have a lot better prognosis, it all depends on your TNM, Gleason and Grade group, along with whether you have an aggressive form so please upload whatever information you have onto your profile pages as this will help everyone give you more targeted information.

Basically I would say live as normal a life as possible with friends and family, that is good for mental health. The only time to be a bit more cautious is when undergoing chemotherapy due to the immunosuppression.

The other important thing is to look after yourself. It can be very draining mentally and tiring physically looking after a loved one with cancer so find time to be kind to yourself.

Please come back with any questions no matter how small or silly they might seem, we have all done it. Also be aware that some of the medical professionals will assume that because you are nurses you have more understanding of the disease than you do, so slow them down if you need things explaining.

Hello Nurserytrade. I am sorry to hear of your difficulties. I am a retired registered nurse and my husband was diagnosed with prostate cancer in autumn 2022. I fully understand the shock, anxiety, fear and a sense of wanting to help but feeling totally at a loss if what’s best to do for all concerned even though you have a nursing qualification!

my own coping mechanisms ( despite persistent tears and little sleep!) were to gain as much info as possible and to be with my husband all along the journey at appointments etc and to be sure I was giving him every support. But…. I was getting really exhausted throughout the radiotherapy as I was doing all the travelling.

two weeks into the 4 wks RT my daughter turned up on the doorstep! She insisted on taking over the driving for the third week and leaving her children with me! It was just what I needed! She was my life saver!!!! This same daughter lives closer to us but throughout she never let a week go by without asking us to go for little treats - a visit to her house to test a cake she had made, a trip to a very local and small antiques fair , a cup of tea and cake in a local tea shop. Nothing expensive or strenuous but just giving us a break. Our other 3 children live much further away but they all made regular contact. Our other daughter sent my husband a box of edible treats to eat during the radiotherapy. These signs that they all cared and were trying to support us meant so very much to us !

my husband did not have chemo and so the risk of infection was lower. That said, he was told he is vulnerable to Covid and should have antivirals if he got it. We have come to the conclusion that we take sensible precautions ( ie flu and covid and shingle jabs, masks in hospitals etc) but the psychological benefit of seeing friends and family and enjoying life outweigh the risks. Obviously, we might have concluded differently had my husband had chemo. Our  children make sure they do not have physical contact with us if they or their children have any symptoms of nasty viruses.

i hope this helps and I hope the replies you receive here reassure you that there are many of us travelling this rocky road alongside you. Now you have found us you are not facing this alone! Good luck!

Hi all, 

Just wanted to thank you all for your messages and sharing your stories and experiences with me. 
I really do appreciate all your kind words and will be taking your advice onboard. 

I know it will be a long process but I’ll definitely be making more time to see him with my daughter and make lots of special memories. If not for me but for my little one. 

It does help knowing that I’m not the only one going through this and my thoughts go out to you all. Sending you all virtual hugs.