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Dad's biopsy was positive - I'm terrified

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User
Posted 31 Aug 2016 at 10:19
My 76 year old father has just been diagnosed. Needless to say we are terrified. It has come as a terrible shock as he is a very fit and active man. They think it is metastatic which scares me even more. He has just had a bone scan and MRI. What happens now? When will he start treatment? And what can I do to help? He is very much of the 'stiff upper lip' type and I'm finding it very hard to get information out of him. I feel like I am living in a nightmare. Any advice would be gratefully received.
User
Posted 22 Nov 2016 at 21:15

Hi.  I realised I have only every replied to the private messages I received on this forum and never updated this post.  Unfortunately I had some health concerns of my own over the past two months also so my family has had its moneys worth out of the NHS recently!  Cant fault the care at all.  


So my Dad's diagnosis was not as bad as we feared.  There was no spread to bones seen on scans, the worrying bone symptoms were very bad arthritis.  Other than knowing its not metastatic I've been struggling to get any more information as I think my Dad doesn't really want any and is doing what the docs say.  He is on hormone pills just now and starts the long course (~8 weeks) of radiotherapy in the new year.  At his consultation he was told it was treatable but was in both sides of prostate. I guess its probably locally advanced stage 3 or 4 as he wasn't offered surgery.  As a family we are in a much better place now, we've got over the shock and are looking to the future, and it is so true that the waiting for the scan results and full diagnosis was the worst part in all of this.


I have spoken to various people about my Dad's diagnosis and I've been shocked by how many people I know whose fathers and husbands also have or have had prostate cancer.  For such a prevalent disease there is very little awareness amongst the general public.  This is an issue that needs addressed and I will be definitely be supporting this charity for the work that is going on and raising awareness in future.  Also PSA tests are clearly not being done as regularly as they should and its important that men understand they can have this test.  My Dad had never had one until a few months ago when he presented with symptoms.  The GP never suggested it and my Dad never asked because he didn't know to.  I'm now urging my husband (and anyone else that will listen) to educate themselves and discuss this with their GP's.


Thank you for your advice and also for this forum just existing, I got a lot of comfort from reading all the personal stories on here.  Will keep updating.


x


 


 

User
Posted 31 Aug 2016 at 10:42

Gosh, at 76 there is every reason to hope that rather than a nightmare this is something dad will just learn to live with for the rest of his life. Even if it has spread, there are many treatments that can control it and we have members still here 5 or 6 or 10 or more years after diagnosis. Time to take a deep breath I think? Order the toolkit from the phone number at top of this website - that will help you to understand the different results, scores, stages and treatment options, and give you ideas of what questions to ask at the next appointment.

Are you sure that treatment hasn't already started? Sometimes when a man is diagnosed and it is believed that the cancer is already past the curable stage, the man is given hormones immediately. For many men, the hormone therapy (HT) can last for years.

There must be a reason for them thinking it might be metastatic, although sometimes the doctors think this and are then surprised to find it hadn't spread at all. Can you tell us what his PSA was at diagnosis? Has he had a biopsy and if so, what was the Gleason score (usually looks like G7(3+4) or G9(4+5) or something like that)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Aug 2016 at 10:44

Just to give you a bit more reassurance, research indicates that 70% of men in their 70s have prostate cancer so your dad will probably have friends that he can talk to who have already been where he is and are having, or have had, treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Aug 2016 at 12:45

Hello Stormy and welcome

It is quite normal to panic when that first diagnosis is given. The worst case scenarios run through your mind, but as Lyn says, it's perhaps time to take a step back, take a deep breath and stop looking on the black side.

Many treatments are available now and many trials are taking place, some of which our members take part in.

Give us dad's scores if he'll let you have them. It's very difficult when somebody is a private person and doesn't like to share but you'll just have to try.

I do not know whether you are a son or a daughter, or how old you are. Perhaps (if you are a son) you could approach it along the lines of you've read that prostate cancer can be familial and you will need to be checked so any info he can give you would help when you go to your own GP and ask for a PSA test. (That depends on your age, of course. You might only be in your 20s in which case a GP would be very reluctant.)

Get hold of The Toolkit which will help you both.

The nurses on here are also apparently very good with information. Their number is at the top of the page.

Please don't panic at this stage.

Best Wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
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User
Posted 31 Aug 2016 at 10:42

Gosh, at 76 there is every reason to hope that rather than a nightmare this is something dad will just learn to live with for the rest of his life. Even if it has spread, there are many treatments that can control it and we have members still here 5 or 6 or 10 or more years after diagnosis. Time to take a deep breath I think? Order the toolkit from the phone number at top of this website - that will help you to understand the different results, scores, stages and treatment options, and give you ideas of what questions to ask at the next appointment.

Are you sure that treatment hasn't already started? Sometimes when a man is diagnosed and it is believed that the cancer is already past the curable stage, the man is given hormones immediately. For many men, the hormone therapy (HT) can last for years.

There must be a reason for them thinking it might be metastatic, although sometimes the doctors think this and are then surprised to find it hadn't spread at all. Can you tell us what his PSA was at diagnosis? Has he had a biopsy and if so, what was the Gleason score (usually looks like G7(3+4) or G9(4+5) or something like that)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Aug 2016 at 10:44

Just to give you a bit more reassurance, research indicates that 70% of men in their 70s have prostate cancer so your dad will probably have friends that he can talk to who have already been where he is and are having, or have had, treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Aug 2016 at 12:45

Hello Stormy and welcome

It is quite normal to panic when that first diagnosis is given. The worst case scenarios run through your mind, but as Lyn says, it's perhaps time to take a step back, take a deep breath and stop looking on the black side.

Many treatments are available now and many trials are taking place, some of which our members take part in.

Give us dad's scores if he'll let you have them. It's very difficult when somebody is a private person and doesn't like to share but you'll just have to try.

I do not know whether you are a son or a daughter, or how old you are. Perhaps (if you are a son) you could approach it along the lines of you've read that prostate cancer can be familial and you will need to be checked so any info he can give you would help when you go to your own GP and ask for a PSA test. (That depends on your age, of course. You might only be in your 20s in which case a GP would be very reluctant.)

Get hold of The Toolkit which will help you both.

The nurses on here are also apparently very good with information. Their number is at the top of the page.

Please don't panic at this stage.

Best Wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
User
Posted 31 Aug 2016 at 23:11

Thank you both so much for responding.  Very good advice indeed, I have calmed down and read a lot of information on this site today.  It has just come as a shock.  I know 76 is not young but my Dad is very youthful for his years and I think is very scared of what the future may hold now.  With regards information he doesn't know his scores but he will ask at his next appointment. He seems to have seen a few doctors so far (but not an oncologist yet), metastasis was suggested due to other symptoms. But we won't know anything for definite until the results are back in full.  Having read through a lot of other posts I can now see that its not necessarily all doom and gloom.  I am a 40 year old daughter and very close to my parents. I hate seeing them this worried and just want to help as much as I can.  Hopefully in a few weeks we will have more information and will be thinking more clearing.  Once again, thank you for the advice.

User
Posted 31 Aug 2016 at 23:58

Does he not know what his PSA was - it was presumably high or the GP wouldn't have referred him to urology? Or was he diagnosed through some other route, like urine retention & the A&E department?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Sep 2016 at 09:59
Yes, he was diagnosed through GP with a high PSA. He doesn't know what it is or Gleason score. When he went back to urology for the biopsy result all they said was that it was positive for prostate cancer and they would probably treat it with radiotherapy. He has been suffering with a few aches and pains over the past year that were thought were due to arthritis but could be connected to this. We are just waiting for the results now. This waiting now is awful but my Dad seems to be in good spirits again. Coping better than the rest of us!
User
Posted 02 Sep 2016 at 12:30
Hi

My dad, my world, my rock, has just been diagnosed with stage 3. He's 73 and never had a day off in his life, fit and active with no symptoms. He went to the dtrs to have a routine psa check... Starting the hormone treatment then 4 weeks of radiotherapy... I can't believe he has it, tears are flowing but when I'm alone as have two small boys to look after and being a single parent no one to fall back on.. I'm glad I've found this site. . I don't want to talk about it with everyone I know but it's good to know you guys are here that will understand how I'm feeling and vice versa.

Thanks for listening.
User
Posted 02 Sep 2016 at 14:07
Hi Ladyluna and welcome,

It might be better if you start your own thread on this site and others can answer any questions you may have.

It's worth updating your profile such as dad's PSA reading and Gleason score if you know them, other contributors can see this and advise a bit better. Some may have the same diagnosis as your dad and help regarding how they dealt with their own situation.

I would suggest when dad has any appointments you go with him if possible as you don't always hear clearly what's being said.

We're not experts on here but we are people who are on this PCa journey together and share our experiences and offer (non medical) advice. Some people here are very knowledgeable combined with a lot of wisdom.

You can always ring the specialist nurses on the 0800 no. for advice and also order the Toolkit from the publications section.

Best wishes,

Arthur
User
Posted 02 Sep 2016 at 20:04

Hello Ladyluna and welcome from me too.

I echo what Arthur said. It would be much better for you to start again with a thread of your own. Some threads peter out after a while and you might get missed on this one if that happens.

You could look at the Publications section and get hold of The Toolkit which you might find helpful. As advised by Arthur, try and go with your dad, if he'll let you, to the appointments or at least encourage him to take a make friend because there is so much to take in at first. He might be more comfortable with a man than with his daughter due to personal issues arising during consultations.

Write down any questions and get dad (or friend) to write down the gist of the answers. It all helps to keep it co-hesive.

You are bound to be distressed and upset, especially looking after young children and coping on your own. We do all understand that horrible feeling on diagnosis.

We do have a few daughters who have posted recently and they may be along to give you their ideas on how they cope.

Ask us anything you like, but it would be easier if we had the scores on which to base advice.

Don't despair just yet. Dad is fit and healthy at the moment, although he may become tired (and tearful due to the HT) due to the RT.

Look forward to seeing your own thread later.

All the best

Sandra


*****

We can't control the winds - but we can adjust our sails
User
Posted 03 Sep 2016 at 01:27

Stormy, best to wait for the full results as something doesn't quite make sense at the minute - you said in your first post that they think dad's cancer is metastatic but then you mention that they may treat with RT. They would not be suggesting RT if there are mets so fingers crossed that it isn't as bad as first feared x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Nov 2016 at 21:15

Hi.  I realised I have only every replied to the private messages I received on this forum and never updated this post.  Unfortunately I had some health concerns of my own over the past two months also so my family has had its moneys worth out of the NHS recently!  Cant fault the care at all.  


So my Dad's diagnosis was not as bad as we feared.  There was no spread to bones seen on scans, the worrying bone symptoms were very bad arthritis.  Other than knowing its not metastatic I've been struggling to get any more information as I think my Dad doesn't really want any and is doing what the docs say.  He is on hormone pills just now and starts the long course (~8 weeks) of radiotherapy in the new year.  At his consultation he was told it was treatable but was in both sides of prostate. I guess its probably locally advanced stage 3 or 4 as he wasn't offered surgery.  As a family we are in a much better place now, we've got over the shock and are looking to the future, and it is so true that the waiting for the scan results and full diagnosis was the worst part in all of this.


I have spoken to various people about my Dad's diagnosis and I've been shocked by how many people I know whose fathers and husbands also have or have had prostate cancer.  For such a prevalent disease there is very little awareness amongst the general public.  This is an issue that needs addressed and I will be definitely be supporting this charity for the work that is going on and raising awareness in future.  Also PSA tests are clearly not being done as regularly as they should and its important that men understand they can have this test.  My Dad had never had one until a few months ago when he presented with symptoms.  The GP never suggested it and my Dad never asked because he didn't know to.  I'm now urging my husband (and anyone else that will listen) to educate themselves and discuss this with their GP's.


Thank you for your advice and also for this forum just existing, I got a lot of comfort from reading all the personal stories on here.  Will keep updating.


x


 


 

User
Posted 23 Nov 2016 at 06:55
It's good to hear that your dad is in the cure camp. The RT will hopefully be tolerable but information about the possible side effects can be found in the publications advised by Lyn above.

I find it a real pity that forum members start engaging in private messages rather than communicationing on the forum as the information discussed can be helpful to others. That's not a dig at you Stormy as no doubt you have just replied when others have messaged you

Take care

Bri
User
Posted 23 Nov 2016 at 17:10

Glad the news wasn't as bad as you feared Stormy. Hope you are feeling better too?

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