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New - Please Help - diagnosis,PSA,Gleason,Diet

User
Posted 13 Jan 2017 at 10:00

Hi,

I found out on Monday evening that my dad (my heart), has been diagnoses with PC. It's such a shock and I'm still trying to process the news. I have been in a bit of a tailspin this week, looking at information that, let's face it, I can't possibly understand and isn't going to tell me anything about what will happen to us. I'm sure everyone has been in the same position of desperately wanting to find 'the answer'. It's so surreal.

The main thing that I want to be able to do for him, my family and myself, is to somehow have the peace to accept this diagnosis, acknowledge the painful, frightening feelings it has stirred up, but not allow it to control our lives while we embark on this, inevitably life changing, journey. I am very frightened. My parents are incredible and it seems like we all agree that this is a time to love each other to the full and try not to focus on being worried about things we are unable to change and may not come to pass.

In terms of treatment he has started HT, bone scans are clear and we are waiting for the final stating and treatment plan to be shared by the MDT. Initial PSA was 200, Gleason 8 and we think locally advanced, which I understand can present some challenges moving forward. We are all focussing on making positive changes to our lives - nutrition, exercise and wellbeing.

I want to be able to support him as he has for me over the years and I think an important part of that is having support for myself, which is why I am here and hoping to take some comfort in the experiences of others.

Love,

SP

User
Posted 18 Jan 2017 at 15:40

Hi SP,

I am so sorry to hear about your dad. I too was locally advanced, with quite a high PSA. Yes it is scary, but it is treatable. I don't want to advise on treatment, cos I am not a doctor. I had Brachytherapy: hollow needles they them in, zap some radiation down and pull out .. followed by about 5 weeks of radiotherapy....sounds tough but not too bad. Then two years of Zoladex (hormone) then waiting for the testosterone to come back. I am still here. Good things to do are be with him sometimes for appointments and treatment.

The worst part, for me, was not the treatment, but the fatigue both during the hormone treatment and after. Fatigue produces depression. The key is to invent/learn coping strategies. My favourite is to say to oneself, when you feel old, tired and useless : "it is not my fault its the hormones (or the low T)". People, including me, try to fight the fatigue directly, psychologically. That's very hard. Best, I found/find is family, walking and film.

I have told you the kind of average route for locally advanced. In fact I now feel life is fine. My family are all angels. Its clear that you are one too. Be careful to look after yourself too. Talk to friends. Above all your dad and you should not be hard on yourselves. Have treats.

Good luck and cheers. We are all with you.

Otto

User
Posted 18 Jan 2017 at 19:39

Hi Katherine,

I know how hard it can be, last week you were blithely getting on with your life, looking forward to your dad being there for you, and now he has cancer.

But as you learn more, you will realise it need not be quite as terrible as you might imagine.

Most men of 64 have some sort of cancer growing in their prostates, some notice it, others don't.

Ten years ago at the tender age of 54, like your dad I was diagnosed with prostate cancer, mine was Gleason 9 and locally advanced.

I won't pretend that the last 10 years have been a barrel of laughs, I have been in and out of hospital for various treatments, but taken in the round they have been ten wonderful years.

In that time I have had wonderful holidays in Corfu, Madeira, Tenerife, Canada even Penzance.  I have been a proud dad at my step daughter's wedding, my step son is about to graduate, my daughter has provided me with two wonderful grandchildren, I get to take my grandson on train rides, because like his granddad he is a great fan of Thomas the tank engine. I had lots of fun last summer building sandcastles on the beach.  Perhaps my most emotional moment was watching my granddaughter perform as Mary in the school nativity play. 

Tomorrow I am going out to lunch with two young mums I met at the mother and toddler group.

So as you can see men with Gleason 9 can lead long and fulfilling lives, the maxim to adopt is I may have cancer, but cancer hasn't got me.

:)

Dave 

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User
Posted 18 Jan 2017 at 15:40

Hi SP,

I am so sorry to hear about your dad. I too was locally advanced, with quite a high PSA. Yes it is scary, but it is treatable. I don't want to advise on treatment, cos I am not a doctor. I had Brachytherapy: hollow needles they them in, zap some radiation down and pull out .. followed by about 5 weeks of radiotherapy....sounds tough but not too bad. Then two years of Zoladex (hormone) then waiting for the testosterone to come back. I am still here. Good things to do are be with him sometimes for appointments and treatment.

The worst part, for me, was not the treatment, but the fatigue both during the hormone treatment and after. Fatigue produces depression. The key is to invent/learn coping strategies. My favourite is to say to oneself, when you feel old, tired and useless : "it is not my fault its the hormones (or the low T)". People, including me, try to fight the fatigue directly, psychologically. That's very hard. Best, I found/find is family, walking and film.

I have told you the kind of average route for locally advanced. In fact I now feel life is fine. My family are all angels. Its clear that you are one too. Be careful to look after yourself too. Talk to friends. Above all your dad and you should not be hard on yourselves. Have treats.

Good luck and cheers. We are all with you.

Otto

User
Posted 18 Jan 2017 at 19:39

Hi Katherine,

I know how hard it can be, last week you were blithely getting on with your life, looking forward to your dad being there for you, and now he has cancer.

But as you learn more, you will realise it need not be quite as terrible as you might imagine.

Most men of 64 have some sort of cancer growing in their prostates, some notice it, others don't.

Ten years ago at the tender age of 54, like your dad I was diagnosed with prostate cancer, mine was Gleason 9 and locally advanced.

I won't pretend that the last 10 years have been a barrel of laughs, I have been in and out of hospital for various treatments, but taken in the round they have been ten wonderful years.

In that time I have had wonderful holidays in Corfu, Madeira, Tenerife, Canada even Penzance.  I have been a proud dad at my step daughter's wedding, my step son is about to graduate, my daughter has provided me with two wonderful grandchildren, I get to take my grandson on train rides, because like his granddad he is a great fan of Thomas the tank engine. I had lots of fun last summer building sandcastles on the beach.  Perhaps my most emotional moment was watching my granddaughter perform as Mary in the school nativity play. 

Tomorrow I am going out to lunch with two young mums I met at the mother and toddler group.

So as you can see men with Gleason 9 can lead long and fulfilling lives, the maxim to adopt is I may have cancer, but cancer hasn't got me.

:)

Dave 

User
Posted 18 Jan 2017 at 20:17
Hi SP,

Welcome to this site, you'll find a lot of help and support here from people with PCa or partners of those who have it. Don't be afraid to ask any question, someone will be able to help you, bearing in mind that probably the majority of us aren't medical people but those who are experiencing PCa. You can always ring the specialist nurses here for advice.

If you go to the publications section here you can either download or order the 'toolkit' which has a lot of information that will help you.

I was diagnosed with locally advanced aggressive PCa, Gleason 8 and PSA of 408.

Click on my (and others) avatars to see their profile. As things move on add details of diagnosis and treatment to your profile so others can offer advice.

Best wishes,

Arthur

User
Posted 13 Feb 2017 at 08:01

Hi from Spain, Sp. (sorry for my English)

I know how you feel. Right now I may not be the appropiate person to give you some relief righ since a few days ago my husband, 68, had a MMR done. Last friday he was written in order to let him know that he is very likely to have a PC (He's being treated i Madrid and we live in another city)

His PSA nowadays is 4.2. I'am in panic. The word "cancer" alone is extremelly scaring.

It's not easy for us to easily understand what that terrifying paper says as technical words are strange for us. I'am scared cause I'm not sure de cancer has gone out of his prostate. In two hours we are leaving for Madrid to see his urologist tomorrow. For sure a biopsy will be neccesary, althoug he has already taken it twice, but on this ocassion it's a different one, more accurate a method.

I'm new here, but I just want to tell you that we'll find support here, but firstly, that PC is not that bad, they say. It can be treated.

You are happy with your family around and over the night all changes and life becomes a nightmare, but it's real. We have to face it.

I'll continue to be aware of how your father and you are feeling. Hope everything goes the best as possible.

Hug and best wishes.

 
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