Any advice gratefully received.

User

Posted 21 June 2016 21:32:38(UTC)

Hello,
I am a 32 year old and yesterday found out my father has been diagnosed with prostate cancer. Yesterday he had an MRI scan to check for bone spread (which the urologist thinks is likely because of 5 months of back/side pain) and we are awaiting the results.
I am frustrated that it has taken nearly 6 months to get this diagnosis and am angry with the GP but my father did not and still does not have any specific prostate symptoms so it seems every other avenue was explored before the prostate cancer one.
I just feel so sad and helpless, my father is a wonderful person and has worked hard his while life to provide for his family and now in his early 60's he should have the opportunity to relax and enjoy his life and this happens.
I've looked on this site and other verified sites like Patient.co.uk and have seen that the prognosis if the disease has spread to the bones is not great, most say 6-12 months. I cannot begin to imagine how we'll cope with that as a family. I am petrified.

Has anyone else had a similar experience/diagnosis?

I realise we have to wait for the MRI results before we know exactly what we're dealing with but I'd be grateful for any coping mechanisms that have worked for others or any treatments that have worked for others that we as a family could explore?

Thank you for reading,

LW

User

Posted 22 June 2016 07:44:37(UTC)

Hi,

Just a quick warm welcome to the site, my OH and I are at the very early stages of our journey with PC, am sure someone will come along with some help and advice for you very soon.

Thanked 1 time

User

Posted 22 June 2016 07:58:39(UTC)

Hi Gabriella
Welcome to this forum. We all appreciate that the wait for results is an awful time, I think we started our journey in late October 2010 and finally got all the results on 23rd December that year! The good news is that our diagnosis was awful, stage 4 with spread to lymph and bones and a Gleason score of 10 ( the worst) and yet here we are, more than five years later. I have rarely known anyone with such a poor prognosis as you seem to have got from the other sites. Only our worst cases where none of the therapies have worked have taken the path you describe. Most men do respond well to hormone therapy and that does give them more time, then there is now the opportunity to get early chemo which has been proved to be a life enhancer in this cancer. There are numerous other drugs working we'll to keep it at bay.

So the message is, try not to anticipate the worst, even if his cancer has spread it is not an immediate death sentence.

How to cope? That's a tough one to answer, we all have our ways. Some of us talk to friends or stranger, many of us use the forum as our muse, please feel free to do that, we are very friendly and will always help if we can. You can speak to the nurses on the cancer charity phone line, they are great too. Speak to your doctor, who will support you. Most of all, just be there for your dad (and mum if she is still here) and support him, go to appointments with him if he needs you. Don't be too doom and gloom yet, it could still be ok.

Lots of love
Devonmaid xxx

User

Posted 22 June 2016 09:12:07(UTC)

Hello Devonmaid,

Thanks so much for taking the time to reply. I feel more positive since reading your post.
Am so happy that your family member (is it your father?) has been winning his fight since 2010,that's really inspiring. I hope he continues to be well.
I think we're all in a state of shock, my father is naturally quite stoic as is my mum but I think it's knocked them for six.
He will hopefully get the results of his MRI soon and we can then formulate a plan once we know what his treatment will be.
I am naturally a worrier anyway (doesn't help) and have a stressful job and worry that I'm not going to be around enough to help them as I have to work full time. I agree that reading the other sites with poor prognosis hasn't helped. I think I'll stick to this site now!
Anyway, we'll see what his results say and go from there. It's weird how a little test result can turn a family completely upside down in a second.

Thanks again,
LW

User

Posted 22 June 2016 10:16:28(UTC)

hi
its difficult but you need to wait for all the results, I have bone mets diagnosed last march am still here, you should get a staging when all results are in, has dad had a DRE this would give him is Gleason score

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'

User

Posted 22 June 2016 10:29:45(UTC)

HI Gabriella
No not my dad, it's my hubby, he was 61 at diagnosis. Blade runner above means a biopsy will give you a Gleason score, sometimes they don't do Biopsies when ten PSA is very high as they will be fairly sure of spread. The Gleason score gives an indication of aggressiveness, however as I said, ours was to highest and yet, here we still are.

Do you know any of your dad's numbers? PSA (by the way one of our members Trevor Booth had an initial PSA of over 13,000! He's still happily with us and his lovely wife Julie shares their trials and tribulations in a humorous way in here. My hubby's PSA was less dramatic at 25, the cancer had spread though. We have had men here with PSA over 100 with no spread. That's why you simply have to wait for your own results and even then, how he responds to HT to get any idea of how things will probably go.

Wishing you and your dad, all the best, please let us know the outcome.

Lots of love
Devonmaid xxx

User

Posted 22 June 2016 10:29:54(UTC)

I think it best that you stay away from Google - it seems you have already been caused more distress than necessary. We have many members diagnosed with bone spread who have continued to live fairly normally for many years - 10 or more in some cases. One member carried on playing rugby and another has recently completed the sahara marathon - many carry on working during their treatment. It isn't always spread (mets) to bone that causes problems - mets to the soft organs can be just as serious, or sometimes worse. No point double guessing what your dad might be dealing with - best to wait until all the results are in.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Thanked 1 time

User

Posted 22 June 2016 10:31:26(UTC)

Oh sorry, one more thing. Is he having a bone scan? This is the one usually that determines the bone issues. It's a nuclear scan, my hubby has had three or four so far.

Cheers
Devonmaid.

User

Posted 22 June 2016 10:31:49(UTC)

Hello Nidge,

Thank you for your reply. I don't think he has had a DRE yet.
I will tell him that I will go with him for his next appointment and so I can ask the doctor all these things because I think my Dad is on a state of shock and may not ask.

I am glad you are battling through and wish you all the luck for the future 😊

LW

User

Posted 22 June 2016 10:32:44(UTC)

He had an MRI scan which involved having 2 injections beforehand? Is that the nuclear scan? They're the results he is waiting for....

User

Posted 22 June 2016 10:32:50(UTC)

PS - just a thought but it might not be very productive being angry with the GP - they are not specialists or mind readers and a back or side ache isn't particularly indicative of PCa so I can see why a PSA test wasn't the first thing they did. Back / side ache is more often associated with kidney or bowel problems.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 June 2016 10:35:48(UTC)

PPS I am pretty sure he will have had a DRE but perhaps didn't want to discuss that bit with his daughter :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Thanked 1 time

User

Posted 22 June 2016 10:42:08(UTC)

Hiya,

Does DRE stand for Digital Rectal Examination? If so then yes he did have one of those. The Urologist said he didn't need to do a biopsy because he was certain the examination showed PCa.
I didn't realise a biopsy may be needed for staging purposes though. Another question I'll add to my list when he sees the Oncologist.

Also, I know it's not very productive to blame the GP, I just feel angry and need to blame someone but I realise that gets you nowhere! Will try and be more positive from now on!

LW

User

Posted 22 June 2016 12:14:44(UTC)

Hello LW and welcome from me too.

It is very hard to be positive when you get that initial diagnosis. Cancer is such a big scary word but it covers a lot of types.

If you go to Publications on this site you can look at/download/or order what is called the Toolkit. These are a set of booklets explaining various treatments, POSSIBLE side effects, emotional reaction etc. I say possible in that way because not all men react to the same treatment in the same way. Some sail through and it's a success, some suffer dreadfully and it's a success. For some it might not be the treatment for them, in which case it can be tweaked or perhaps dad might be offered a Trial.

The Toolkit will eventually be useful to help you ask the questions you want answers to.

As a worrier this situation is made worse for you but try not to let it exhaust you. In the weeks and months ahead you'll be there for both your parents. Just do what you can, when you can and I'm sure they'll appreciate you even more for it.#

Best Wishes

Sandra

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

Thanked 1 time

User

Posted 22 June 2016 14:13:29(UTC)

Lyn is right about trying not to be angry Gabriella, I could so easily slip into anger about many things that have happened (and have from time to time ) none of it has done me any good, as it doesn't change anything. We did have a person on here who sued her GP and won, but she got very little support here because taking money out of the already struggling NHS seems very wrong (not that I'm saying you would do that!).

I've found the best approach is to be happy that the cancer has been discovered and that treatment has started. In our own case, side pain, trouble with water works, erections etc was put down to old age (55!) by our GP, it was only when a new chap saw hubby five years later that a PSA test was done. I'm eternally grateful to that GP. Without him I am certain my hubby would be dead.

That's how I keep a lid on it, looking for,the positives and trying to keep my head above water, not being all teary but being loving, practical and planning nice times. In our five year journey, we have seen both daughters married, buy houses and have a baby granddaughter who is the light of our lives. It certainly hasn't all been bad.

Keep you chin up, things may be better than you think. The bone scan involves an injection then having to go away for about three hours for a nuclear scan. The MRI is the one with the enclosed scanner, quite claustrophobic.

I hope you are feeling a bit better now and that dad's scans are clear.

Love
Devonmaid

User

Posted 22 June 2016 15:53:12(UTC)

Thanks Devonmaid,

My Dad is booked for the nuclear scan next Thursday. He is still awaiting the results of the MRI he had yesterday but I'm guessing the nuclear scan will be the more conclusive scan anyway?

I know what you mean re. trying to be positive. I am trying and being on this forum does help but when you are unfortunately pessimistic it is a struggle!

I'm assuming my Dad will have to wait for the results of the nuclear scan to come back before any treatment starts so I don't expect that to be until July time. Will try and carry on as normal as possible until then.

Thanks again for all the advice, everyone on here is so helpful and kind x

User

Posted 22 June 2016 23:16:49(UTC)

Hi Gabriella,
Welcome to the forum,I know it is weird to say welcome because you would absolutely not choose to be here but I hope that you will get ,advise , comfort ,knowledge and answers.
I did pick up on people saying to stay positive they said that to us in the beginning and my thoughts were "Are you Crazy" Trevor was diagnosed late with no water work symptoms just pain in his back and ribs his starting PSA was 13000 so like your Dad he was back and forth to the GP for over a year before a PSA test was given. In the beginning of our journey I was angry that he wasn't diagnosed sooner but in now in hindsight and understanding this disease it wouldn't have made any difference.
Trevor is stage 4 with spread to his bones and lymph nodes he also didn't have a biopsy , it would have been pointless his scan results and his high PSA told the oncologist everything they needed to know.
So that is the start of our journey but fast forward 3 years and Trevor is still going strong he is still driving and doing jobs around the house so when they tell you to stay positive believe it because it is true.
Life doesn't always turn out how we think it should be but sometimes takes a different path.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

Thanked 1 time

User

Posted 23 June 2016 07:36:00(UTC)

Hi Julie,

What an inspirational message to wake up to. Thank you so much.

Trevor's journey beginning sounds simular to my Dads, I hope it continues to be also as the thought of him still being around in 3 years fulls me with relief.

We still await the MRI results and the nuclear test is next week so I'm guessing no treatment will stay until July time fingers crossed.

Am feeling more positive since being on this site for sure.

Thanks again and all best wishes to Trevor and yourself.

User

Posted 23 June 2016 11:50:40(UTC)

So my Dads MRI results showed no spinal cord compression which is good news, the Nurse Specialist said that they are now awaiting his nuclear scan next week and his case will be discussed at the doctors meeting tomorrow.
She said that the MRI did show 'a few things' but she didn't want to tell my Dad until things had been confirmed with the nuclear test.
Wish everything could be done and results back in one day! But that's me being impatient!

My parents are going away for the weekend to get a rest now which I'm thankful for.

User

Posted 23 June 2016 13:04:31(UTC)

Impatient! Well of course.

Who wouldn't be.

The sooner you know what's what the sooner it can be dealt with.

The "few things" could be something or nothing, maybe old injuries etc so once the nuclear scan is done you'll all have a definite idea of where the main problems lie.

In the meantime, I hope your parents enjoy their weekend (hopefully not in the floods like we currently have in the south east!) but I'm sure, even in the rain they'll get pleasure just being together.

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

Thanked 1 time

User

Posted 23 June 2016 19:34:49(UTC)

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

Thanked 1 time

User

Posted 23 June 2016 19:41:44(UTC)

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 June 2016 07:15:44(UTC)

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 June 2016 12:35:24(UTC)

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

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User

Posted 26 June 2016 13:32:08(UTC)

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 June 2016 12:36:33(UTC)

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!

GW

User

Posted 30 June 2016 14:36:58(UTC)

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 July 2016 16:34:46(UTC)

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!

GW

User

Posted 01 July 2016 16:56:54(UTC)

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 August 2016 15:57:04(UTC)

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 August 2016 16:08:55(UTC)

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 August 2016 22:12:23(UTC)

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 12 August 2016 23:39:11(UTC)

"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 August 2016 20:55:29(UTC)

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.

G.

User

Posted 13 August 2016 23:00:15(UTC)

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 August 2016 17:24:52(UTC)

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.

G.

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