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User

Posted 23 Jun 2016 at 20:34

Hi Gabrielle,

Just a quick welcome to the site from me. It's a worrying time when you have half the information and it's gets better, if that's the right word, once all the results are in and out then you know what treatment is to come. In your first post you mentioned mets in the bones usually means a poor outcome, that maybe from googleing. I was dx last year withgleason 9 and mets in bones. I've had HT and chemo and scans have shown remission in the bones. I know the little bugger is lurking in the background but I aim to be around for a very long time. So mets in bones isn't t the worst thing! Once your oncolo team as all information you will know what to expect. I was petrified when I was first dx but the experience wasn't as bad as I thought. Not everyone's journey is easy but I hope your dads is.

Good luck with the results

Steven

User

Posted 23 Jun 2016 at 20:41

Hello Steven,

Thanks so much for your reply. I'm glad to hear you are doing so well,remission in the bones is great news!

I think whenever you hear the words 'cancer' and 'spread' you think the worst, maybe that's from the media and false representations of what treatments are available. The GP was telling my Dad that in the last 10 years the treatments for prostate cancers have significantly improved.

I have now stopped looking at Google! I'm sticking to this site and Cancer Research UK, Patient.Co.uk etc

Thanks again for your input and I hope you continue to improve and be well.

😊

User

Posted 24 Jun 2016 at 08:15

Gabrielle, I'm not sure that it actually false representations as much a just ignorance.

Prostate cancer treatment in particular has moved on in leaps and bounds over the past 10 years. My John's seed Brachytherapy was in its infancy then but is now offered more routinely. Likewise the addition of Chemo at a certain point of treatment has proved beneficial.

The words Cancer and spread together form a huge fear in everyone's mind - even the knowledgeable. ~Until you have a full picture fear will rear its ugly head and sap your energy.

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 24 Jun 2016 at 13:35

Hello reading this is almost like writing it myself! my dad was diagnosed on Tuesday with a gleeson score of 9 it's spread to his lymph and looks like bones too as he has been in so much pain he's been under the GP for several years and they have treated it as anthritis now they say it could all be connected. Like you I'm peterfird of losing my dad who has been my rock and my hero. He goes for a bone scan Wednesday even that seems along to wait as they said they wanted to started the hormone tablets and injections straight away as it was an aggressive cancer. I don't know what the future holds as do no one but I've read so many positive stories on this site it does give hope. The one thing I wish I stop thinking about it every minute. Good luck to you and your family.

Amanda X

User

Posted 26 Jun 2016 at 14:32

Hi Amanda,

I'm sorry you've had the same horrible few days as we've had. I agree the waiting is the worst thing, I think once we know what we're dealing with it'll be easier to digest.

I wish you and your family all the best also and hopefully we'll have some positive news and a treatment plan soon.

Good luck.

User

Posted 30 Jun 2016 at 13:36

Just a quick update. My Dad is currently in hospital with spinal cord compression.

He got a telephone call on Monday to come in straight away. He has 3 lesions on the spine. Radiotherapy started yesterday and will continue daily until Tuesday. He seems ok in himself.

This has obviously stopped the prostate plans for a few days but he'll hopefully have his nuclear scan whilst an inpatient so that'll be done too.

I know his PSA is 107 but no Glen's on score as yet as he's mostly being acted for by the neurosurgeons at present.

Am frustrated that the prostate issue is now on the back burner for a bit but I understand why.

I just hope that once the spine is stabilised then the prostate plan can happen. I know lack of communication can sometimes be an issue so I'm going to chase up the urology team tomorrow.

All a bit of a roller coaster really!

User

Posted 30 Jun 2016 at 15:36

Well at least they were efficient enough to get him in quickly and the best place for him with SCC.

The cancer will be dealt with as soon as they sort him out so try not to fret.

We can't control the winds - but we can adjust our sails

User

Posted 01 Jul 2016 at 17:34

Thanks Johsan. Yes je was seen very efficiently, he has been discharged home now, the rest of his radiotherapy is to be as an outpatient as the neurosurgeons were very happy with him.

He has an appointment to see the oncologist in 3 weeks to discuss the prostate. In the meantime, hormone injections have started.

He has been on steroids since Tuesday for the SCC and has today developed hiccups as a result. I think it's related to the high dose of steroids.

They will start weaning down from tomorrow but will take 21 days to completely finish. Hiccups annoying for him. Has anyone else suffered from this?

I am finding it difficult not to panic about every little symptom now but my Dad is actually a lot better in himself and pain is much improved since morphine and steroids started.

Am trying to find some positivity in the midst of all this, feel like I've had a stress headache for a week!

User

Posted 01 Jul 2016 at 17:56

Gabriella

How worrying for everyone, SCC is a constant concern for those of us with mets to contend with, I'm delighted to hear that dad has been looked after urgently. Thankfully he has started the RT which should reduce the size of those Mets and the steroids should make him feel a lot better. I've not heard about hiccups being a side effect, that's bound to be annoying for him. There are a few people here who have experience of SCC, I hope someone who has that direct experience will be along to support you shortly.

Love

Devonmaid xxx

User

Posted 10 Aug 2016 at 16:57

Hello All,

Thought I'd post a quick reply with an update on my Dad.

So I think in my last post he had just been admitted for SCC.

Well, a month later and we're back again, I visited my Dad yesterday evening after work and he complained of a new acute back pain and numbness in this feet - he'd had these symptoms for 2 days and not said anything to anyone, thinking they'd get better.

I was furious! I've reiterated over and over to call the hospital if any symptoms occur but he didn't want to bother them!?!

Anyhow we went to A&E at 6pm and the neurosurgeons done a CT scan at 3am,this wasn't reviewed until 4am (by which time myself and family had gone home thinking he'd definately be admitted). The neurosurgeons said that the scan showed 'no new changes' and so they discharged him at 4.30am!?! He had no one to take him home and was still in pain!?! I picked him up at 5am and went in to speak to the doctors but the neurosurgeons had gone and the A&E doctor just apologised and recommended my Dad top up with Oramorph!?!

As it was so late I took my Dad home so he could sleep and then called his Consultants secretary who was lovely and she spoke to the Consultant who advised my Dad to come back to the hospital today. So a mere 6 hours after we left the hospital we were back in A&E awaiting an MRI (which he should have had last night) and being started on high dose steroids again (?SCC)

My Dad's first chemotherapy is supposed to start on Monday next week but I guess it all depends on what happened with the MRI and whether he needs more Radiotherapy.

It's all just so stressful - seems like we're 2 months post diagnosis and no real treatment has started yet as the SCC has interrupted it all :-(

User

Posted 10 Aug 2016 at 17:08

Hi Gabriella

So sorry things have gone downhill since your last (more upbeat) post.

Sometimes I just wonder at the mentality of those trained and employed to look after us. Beggars belief.

Hope the MRI shows something that can be dealt with quickly and that once the high dose steroids kick in he'll feel better.

I know you have nagged at him about the delay and nothing can be done about what has already happened, but hopefully he has now taken on board that he lets one of you know ASAP that all is not well.

Look after yourself - while you're looking after everyone else !

Sandra

*******

We can't control the winds - but we can adjust our sails

User

Posted 12 Aug 2016 at 23:12

How frustrating for you! All our A&E visits seemed to happen at night which feels so much worse. Where is this 24 hour 7 days a week service we're supposed to get? I hope the MRI goes ok and your dad gets the treatment he needs.

User

Posted 13 Aug 2016 at 00:39

"where is this 24 hour 7 days a week service we're supposed to get?"

Rosy, this might be the aim but with the present financial limits, trained human resources and facilities and growing demand, an effective 7 day NHS is unfortunately a long way off. Actually, the NHS does quite well for what is put into it which is of course totally inadequate. It's not just a case of under funding but successive governments short comings in providing medical training and making it attractive to enter the profession and to remain within the NHS. The needs of a growing as well as an ageing population are putting enormous demands on the NHS which in some areas is in crisis.

Barry

User

Posted 13 Aug 2016 at 21:55

Hi Rosy,

Thanks for your reply. Thankfully the MRI showed no compression but actually a protruding disc (unrelated to the cancer), the doctors will treat is with the morphine as obviously my Dad is not fit for surgery at the moment.

Hell also have some physiotherapy which may help.

He is due to start Chemotherapy on Monday, 6 cycles of Doxetacel over 4 months. Does anyone have any experience of this particular chemotherapy? If so what side effects did it cause?

I hope my Dad copes with the chemotherapy ok as he's been through so much already.

Any advice would be great.

User

Posted 14 Aug 2016 at 00:00

Hi Gabriella

Glad to hear this news and hope the chemo helps make your dad feel alot better. My husband had Docetaxel at a later stage and this was probably the best time during his PCa journey. We even managed a couple of short breaks away while he was on it!

Barry - I am a actually great advocate of the NHS and have just retired from 40 years of working in it so of course I do absolutely understand all the pressures. It's just so frustrating when things don't go as they should!

User

Posted 14 Aug 2016 at 18:24

Thanks Rosy, that makes me feel a bit better. I guess I'm mostly worried about neutropenia and my Dad perhaps not reporting symptoms of a possible infection.

The whole situation is just very stressful for all involved, especially my Dad.

Just want to get a glimpse of the future to see what it holds, it's the unknown that is so difficult.

User

Posted 16 Aug 2016 at 20:08

Hi everyone,

So my Dad's first Doxetacel seemed to go ok yesterday and he has today been discharged home, they have doubled his MST and his pain is much more controlled as a result.

I just have a question: pre chemo we saw the consultant and she said my Dad's PSA was 220, this has doubled since his previous result of 107 two months ago. During that period he had zoladex and another HT I can't remember the name of (was 2 injections). Is this common for the PSA to initially rise? He also took Cyproterone tablets which is supposed to stop 'flare' but obviously didn't work.

The consultant didn't seem to worried and was happy the Bone Profile test had reduced from 1000 to 200 (my Dad has bone Mets).

Am just a bit concerned re the PSA. Will have to see how the chemo goes and get the repeat PSA in 3 weeks time.

G x

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