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Advice for Dad re:outlook

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User
Posted 24 Jun 2018 at 21:45

Hi everybody, 


My Dad has recently been diagnosed with advanced prostate cancer, stage 4, Gleason 3+4 with extensive bone mestases and lymph node spread. We are aware that Dad's prognosis is not great and that the cancer is incurable so understandably both mum and dad are having a hard time finding anything to feel positive about. He has started hormone treatment a few weeks ago but mum is worried that his cancer is so advanced that there will be nothing else that can be done treatment wise. I've no idea if I am being naive but I would like to hope that we have at least a couple of years left with dad. Dad was diagnosed around 6 weeks ago and hasn't yet seen an oncologist. Is this normal? 


Any information or just positivity that anyone has to offer will be greatly appreciated. I have been reading the posts for a couple of weeks now and they've already been a great help. Thanks x

User
Posted 25 Jun 2018 at 17:36
Missy, my PCa is incurable, or I would prefer to say chronic, and I have been living with it for eleven years nearly. Much more serious Gleason score than your Dad, so don't despair. You'll find more and more treatment options available with every year that passes; it isn't a case of HT or nothing.

Good Luck

AC
User
Posted 25 Jun 2018 at 22:21
Hi MissyA,

I’m another with advanced incurable PCa with bone mets diagnosed 2 years ago. If you view my profile you’ll find a bit more info - just click on my name/avatar.

For what it’s worth at present I feel physically and emotionally great.

All the best to you and your dad.

Dave
User
Posted 24 Jun 2018 at 22:29
My husband also has extensive bone mets and lymph nodes. PSA over a thousand at diagnosis well over a year ago. He's had HT and early Chemo. PSA did get down to 1.1 before starting to increase. Hardly any pain which is positive. Now started on a trial of Abiraterone and either ipatasertib or a placebo. There does seem to be a number of possible treatments and we are hopeful of keeping going for quite a while.
Best wishes
User
Posted 25 Jun 2018 at 10:40
Hi Missy, my dad is in a similar situation. He was diagnosed with PCa 6 weeks ago, found to be advanced 4 weeks ago after scans....PSA 55, T3b N0 M1b (stage 4) He was put straight on degarelix HT and we are scheduled to meet with the Oncologist this friday for the 1st time. I believe the plan is start him on chemo as soon as possible (6 rounds over an 18 week period), alongside his HT. I'll update you once we have a clearer picture of the treatment path. Sending you all heaps of positivity. Xx
User
Posted 25 Jun 2018 at 23:06

Hi Davywls, thank you. I am pleased to hear that things are good for you, long may it continue. I will pass all of the messages on, hopefully Dad will feel a bit better for  hearing everybody's positive stories x

User
Posted 26 Jun 2018 at 11:32

Hi MissyA, am in a very similar situation with my Dad. he was diagnosed a year ago with PSA of over 1000, varying hormone therapies for the last 12 months and PSA around 15. There are peaks and troughs and he sees an Oncologist every 2 months but he's really well, no pain, no symptoms to speak of.  It sounds horrible when they first tell you but by a certain age I'm told you're likely to die with it rather than of it. Good luck to your Dad x


 

User
Posted 26 Jun 2018 at 17:54
Lisabun, let me just say that when diagnosed I was given about five years. I don't remember the word incurable being used. After all this time though, guesses by oncologists or anyone else are irrelevant. My focus is on living with a chronic condition and using whatever tools (treatments) become available to tackle it!

AC
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User
Posted 24 Jun 2018 at 22:29
My husband also has extensive bone mets and lymph nodes. PSA over a thousand at diagnosis well over a year ago. He's had HT and early Chemo. PSA did get down to 1.1 before starting to increase. Hardly any pain which is positive. Now started on a trial of Abiraterone and either ipatasertib or a placebo. There does seem to be a number of possible treatments and we are hopeful of keeping going for quite a while.
Best wishes
User
Posted 24 Jun 2018 at 23:11

Hello  thanks for your reply. I am sorry to hear about your husband but it is reassuring to hear that he is not suffering unmanageable pain. We lost my grandparents to cancer so I understand why my parents are feeling so down but many years have passed since then and treatments have improved enormously. I am hopeful that once we have seen the doctor and got over the initial shock that we all start to feel a bit better. Best or luck to both you and your husband x

User
Posted 25 Jun 2018 at 10:40
Hi Missy, my dad is in a similar situation. He was diagnosed with PCa 6 weeks ago, found to be advanced 4 weeks ago after scans....PSA 55, T3b N0 M1b (stage 4) He was put straight on degarelix HT and we are scheduled to meet with the Oncologist this friday for the 1st time. I believe the plan is start him on chemo as soon as possible (6 rounds over an 18 week period), alongside his HT. I'll update you once we have a clearer picture of the treatment path. Sending you all heaps of positivity. Xx
User
Posted 25 Jun 2018 at 13:58

Hi Lisa, thanks so much for your reply it is a great help. It's not easy is it. Lots of love to you and your dad xx

User
Posted 25 Jun 2018 at 17:36
Missy, my PCa is incurable, or I would prefer to say chronic, and I have been living with it for eleven years nearly. Much more serious Gleason score than your Dad, so don't despair. You'll find more and more treatment options available with every year that passes; it isn't a case of HT or nothing.

Good Luck

AC
User
Posted 25 Jun 2018 at 18:45
Hi AC, it's great to hear you're still going strong 11 years after diagnosis. Could I ask, were you diagnosed as incurable from the outset?
User
Posted 25 Jun 2018 at 20:05

Thanks Auld, I am pleased to hear you are doing well. I will pass all of this positivity on. I think we will all feel a lot better o when we know a bit more and are able to get into a bit of a routine. Very best wishes to you x

User
Posted 25 Jun 2018 at 22:21
Hi MissyA,

I’m another with advanced incurable PCa with bone mets diagnosed 2 years ago. If you view my profile you’ll find a bit more info - just click on my name/avatar.

For what it’s worth at present I feel physically and emotionally great.

All the best to you and your dad.

Dave
User
Posted 25 Jun 2018 at 23:06

Hi Davywls, thank you. I am pleased to hear that things are good for you, long may it continue. I will pass all of the messages on, hopefully Dad will feel a bit better for  hearing everybody's positive stories x

User
Posted 26 Jun 2018 at 11:32

Hi MissyA, am in a very similar situation with my Dad. he was diagnosed a year ago with PSA of over 1000, varying hormone therapies for the last 12 months and PSA around 15. There are peaks and troughs and he sees an Oncologist every 2 months but he's really well, no pain, no symptoms to speak of.  It sounds horrible when they first tell you but by a certain age I'm told you're likely to die with it rather than of it. Good luck to your Dad x


 

User
Posted 26 Jun 2018 at 17:54
Lisabun, let me just say that when diagnosed I was given about five years. I don't remember the word incurable being used. After all this time though, guesses by oncologists or anyone else are irrelevant. My focus is on living with a chronic condition and using whatever tools (treatments) become available to tackle it!

AC
User
Posted 26 Jun 2018 at 19:57

Thanks everyone for all of your responses, I have passed them to mum and dad and we do all feel a little calmer! I have to say, I do much prefer the term "chronic" to "incurable" x

User
Posted 26 Jun 2018 at 19:59

Hi Alexandra, thanks so much for your reply. Wishing your dad the very best of luck x

 
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