Gleason 9 pelvic metastatic nodes

Hello Pbwolf,

A warm welcome to the prostate forum, although I'm very sorry you have the need to join. You'll find this is a very friendly area with plenty of support and advice from others.

From what you describe I'm not surprised you're wondering what's next.

Macmillan offers many services to help with the issues you've mentioned including a helpline, financial help, a "buddies" service who can 'phone you on a weekly basis to talk about anything at all you wish and much more.

I attach a link below detailing these and how to use them and would encourage you to have a read and make use of whatever will provide the right support for you at this stage of your journey. You'll also receive responses from our members shortly.

All the best, Derek.

www.macmillan.org.uk/.../get-help

Hi 

As excavator said, there is help macmillan can help you with and direct you in areas you may need. Ive recently had help from macmillan over something which I felt was an issue with my oncology team. They set up a meeting with an oncology with the help of the urology department but it also made my mind up of asking my gp for a referral for a second opinion or, any options of any trials going forward ive requested for royal marsden. Im still on triplet therapy, I have 1 dose of chemotherapy to go, but I want to know what happens next. Similar to you I suppose. Basically ive been told I might get a scan for later as a bench mark, but carry on with hormone jab and daralutamide. No RT until later to manage any pain, even though they said it will kill cancer cells. To me, if it can kill the cells and your body can take the side affects, carry on with treatment.

I too have osteoporosis,  not caused by the medication,  but found prior to finding out I have PC. Im currently on bone medication. Ive had 4 fractured vertebrae but I have seen an improvement recently but I do get bad days. 

How are you coping with your osteoporosis?

Hi, thanks for the info, yes it does sound like some similarities. I'm waiting for an appointment at osteoporosis clinic over a month now, think will contact them tomorrow to see what the waiting time is!!!. I got through chemo relatively unscathed,  just the usual common side effects, however became lethargic and tired it took me a year to really get over it, there can be lots of long term side effects that they really don't tell you about. Like it may add ten years on your body, so I've gone from a fit 59 year old to a knackered 72 body. I'm interested in any trials, I'm amazed that treatments vary from centre to centre. Regards Pete 

Hu,

Yeah, depending what trust, they do different things, even though my oncologist didnt believe me when I told him this. 

It all comes down to a postcode lottery I call it, hence why if you don't think something is right, challenge it.

I've had to challenge my gp from a result rheumatology gave regarding my osteoporosis being caused from my pc treatment, even though it was found prior to pc. My doctor is now sending another letter to rheumatology. I asked the gp doesnt anyone look at previous results etc anymore and just second guess...

Will wait and see what happens as I want to knowcwhats caused the osteoporosis,  especially when oncologist are adamant I have no cancer in my spine and its not caused by pc

Keep your hopes up, and question everything you ate not sure on.

All the best 

Hello Tattibogoes 

Around 210 Health Trusts in the UK - Take off the ambulance and mental health trusts that leaves 190 - who all go their own way in dealing with your diagnosis, They don't even all offer every treatment (Think Brachytherapy) if their Trust doesn't do it it won't be offered.

On this journey (I am 4.5 years into mine) you soon learn knowledge is power and to advocate for yourself. 

If you are in England the NHS App helps - but make sure you get FULL access to your medical records and CHECK all your test results.My GP has put "OK for this patient" against some of my test results - well they simply were not!). Some hospitals use different Apps such as "My Chart" and "Patient Knows Best".

GP's are Good at general practice - they know very little about prostate cancer, urology and oncology and the effects the treatments have on your body or the potential medication clashes. (Hormone Therapy can bring on type 2 diabetes and weight gain!)

I think that's my whinge over for now. The best thing for me is I fall under The Christie in Manchester - the 4th best cancer hospital in the World!

But you are right:

Tattibogoes said:

Keep your hopes up, and question everything you ate not sure on.

Best wishes - Brian.

Hello again

Winge all you like, im new to the game as you are aware. I just hate it when nobody listens to your questions or make some excuse, they are there to help us but even though its tough for some trusts for resources etc, it seems they dont want to treat somepeople even if there is a sliver of hope to beat an illness

Gareth

Hello Gareth (Tattibogoes) 

At least you have almost completed the chemotherapy, and although triplet therapy is fairly new it's got a high success rate - it's sorting out your other associated issues that are also important.

Just as an aside - you know with a cancer diagnosis you are entitled to free prescriptions? As Tesco say - every little helps.

Do as much research you can - use trusted sources (not Dr Google) ask questions here and then when you see your team or GP be fully armed with your questions and I usually have a list of the answers I am expecting and if I don't get I ask why.

We are all different - I am still on and off treatment after 4.5 years and so far I have "dodged" chemotherapy but I know it's in the toolbox for later. I am still learning after all that time - as I said, we are all different.

Best wishes - Brian.

Thanks Brian,

Yes I getcfree prescriptions. Luckily my daughter is in uni learning pharmacy and she told me about what I could get free. I must have saved a bucket load already just for pain medsctoctrycandxget my osteoporosis under control.

Also, I've started my application for PIP. Its not means tested, but can takesca fee months for them to go through your claim. Funny enough I had a phone call yesterday to talk about my condition and what help I need. It might be something everyone here csn look into. They do backdate the money to you to the day you first applied for PIP if you were successful 

Gareth

Hello Gareth (Tattibogoes ) 

Not only is PIP not means tested it's not a taxable benefit and it puts you almost into qualifying for a "blue badge".

I am a "lucky boy" at 70 only having broken 1 rib in my life and not being in any pain at the moment. My last MRI did show lots of wear and tear on my bones but normal for a bloke my age. (It's a good job really as my pain threshold starts at nowt and tapers off!).

Good luck with your final chemotherapy and PIP application.

Best wishes - Brian.