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Post One - Diagnosis (Dx),PSA,Gleason

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User
Posted 13 Jan 2017 at 10:42

Hello,

I've not used a forum before, but I have read your stories recently and I am so moved by the support that's offered here and hope to be welcomed into your community.

I have just found out that my dad has been diagnosed with prostate cancer - PSA 200, Gleason 8, clear bones and lymph nodes, locally advanced (we think, but MDT feedback is still to come). He's started HT and seems well, blood tests to follow next month. I understand that this is a mixed back of good news and challenges to overcome.

I am very frightened and have been in a bit of a tailspin this week. I have been frantically searching for information that will tell me the 'the answer' to the question 'what does the future hold?', even though I know there's no way that I can make sense of the information and it's also not going to tell me anything about our actual circumstances. I am sure that this is something that a lot of people experience, but goodness it is overwhelming.

My dad is my heart and I am completely overwhelmed with my love for him at this time, which is a comfort amongst all of the disbelief, fear and worry. My deepest wish at this time is to be able to support him as he has done for me. We are obviously at the beginning of an entirely new road and my hope is that we can accept that we are here and not spend too much time looking to the path we thought we would be on.

I would greatly appreciate people to talk to and learn how best to negotiate this from your experience.

Much love...

User
Posted 14 Jan 2017 at 08:01
I am so sorry to read about your Dad, he is very lucky to have a daughter like you who clearly loves him very much.

I was diagnosed over 2 years ago, age 49, PSA 342 Gleson 9 spread to lymphs. I want to give you hope that with treatment your dad should have many great years to come. Since diagnosis and chemo, radiotherapy and a few different drugs I am still here, still working, running etc etc. In fact I run more now than I did pre cancer. Last year I ran a 257 kilometre desert race and will do it again this year.

I can remember how hard it was when I was first diagnosed but this forum was so helpful. When I saw the docs I wrote everything he said down, I also had lots of questions from info on this site. The mental battle is harder than the physical one right now.

My PSA is now 0.17 so even when it all kicks off again it will take a while to slow me down.

We are all rooting for you, ask specific questions here if you can but most importantly give your dad hugs often and make him feel loved as that is what he needs from you right now.

Take care, keep posting, believe

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 10 Feb 2017 at 22:09

I don't want to sound harsh and it may be there are other issues affecting how you cope with this news but generally speaking, the sooner you get back to normal the better PenP - your dad has reasonable stats and will probably be around for quite a few years. Life has to go on as normally as possible and it will be more stressful for your dad if he is having to worry about you on top of everything else.

Edited by member 11 Feb 2017 at 15:15  | Reason: Not specified

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

User
Posted 14 Jan 2017 at 10:38

Hi Sp

I think your dad is lucky to have someone like you looking out for him with his diagnosis and you are doing all the right things in coming to this community and talking to people in the same boat that can help you to understand and help you through the journey.

I am coming up to my first PSA results post brachytherapy at four months(and am starting to panic about the results and did i have the right procedure last September) but I find it difficult to talk to my family about it and put on the brave face and tell them it's all going to be ok,but it's when you wake up in the early hours of the morning and the brain starts to work overtime on it.

Good luck and keep in touch with us all.

regards John.

User
Posted 14 Jan 2017 at 10:44

Sweetpea,
If you would like to have someone to talk to on the telephone I would be happy to do so. Just go to your Inbox, send me a private message and I'll send you my telephone number.
David

User
Posted 11 Feb 2017 at 20:19
Yes you are absolutely right of course. Don't worry I have been very brave in front of Dad and am being helpful by finding out as much information as I can. The initial shock was tough for everyone but we are in week two now and trying to be cautiously optimistic. I just felt so sad for him! He's amazing xxx
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User
Posted 14 Jan 2017 at 08:01
I am so sorry to read about your Dad, he is very lucky to have a daughter like you who clearly loves him very much.

I was diagnosed over 2 years ago, age 49, PSA 342 Gleson 9 spread to lymphs. I want to give you hope that with treatment your dad should have many great years to come. Since diagnosis and chemo, radiotherapy and a few different drugs I am still here, still working, running etc etc. In fact I run more now than I did pre cancer. Last year I ran a 257 kilometre desert race and will do it again this year.

I can remember how hard it was when I was first diagnosed but this forum was so helpful. When I saw the docs I wrote everything he said down, I also had lots of questions from info on this site. The mental battle is harder than the physical one right now.

My PSA is now 0.17 so even when it all kicks off again it will take a while to slow me down.

We are all rooting for you, ask specific questions here if you can but most importantly give your dad hugs often and make him feel loved as that is what he needs from you right now.

Take care, keep posting, believe

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 14 Jan 2017 at 09:38
Hi Kev,

Thank you so much for taking the time to reply. I am so encouraged by stories like yours and I'm so pleased that you are doing so well physically and emotionally.

It feels like I am drowning in so many conflicting thoughts and swing from feeling certain everything will get back to a new "normal" and we''ll continue to be happy and (relatively) healthy, to feeling broken hearted and scared. Mostly I worry for the wellbeing of my dad. He is an amazing, kind and gentle person who I am immensely proud of. He is remaining positive and we are talking about this being a pivotal opportunity to make some positive changes to health and how we make the most of our time as a family (cancer or no cancer).

I am interested if others feel the same that it is the knowing that something is "wrong" and all the frightening vocabulary associated with cancer - you immediately colour the gaps in gloomy colours. I mean anything could happen at any moment and we don't waste a moment worrying about it, but the "knowing" about it plus the huge uncdetainty is hard to bear. Do others feel the same? Can we really laugh and sleep soundly again? I want to learn to accept this and have the best time for as long a time as possible with my dad and family regardless of what happens.

I am so grateful for having someone to talk to and would be so appreciative of more experiencing of getting through this. I'll do anything I can to turn this around and make the best of it.

Much love,

SP

User
Posted 14 Jan 2017 at 10:38

Hi Sp

I think your dad is lucky to have someone like you looking out for him with his diagnosis and you are doing all the right things in coming to this community and talking to people in the same boat that can help you to understand and help you through the journey.

I am coming up to my first PSA results post brachytherapy at four months(and am starting to panic about the results and did i have the right procedure last September) but I find it difficult to talk to my family about it and put on the brave face and tell them it's all going to be ok,but it's when you wake up in the early hours of the morning and the brain starts to work overtime on it.

Good luck and keep in touch with us all.

regards John.

User
Posted 14 Jan 2017 at 10:44

Sweetpea,
If you would like to have someone to talk to on the telephone I would be happy to do so. Just go to your Inbox, send me a private message and I'll send you my telephone number.
David

User
Posted 14 Jan 2017 at 10:48

Yes you will find a new normal - it is too early to tell whether that will be simply learning to live with the constant testing and minor irritations of treatment or whether that will be about making the most of your time together. Once you know whether the MDT is recommending curative treatment or just the hormones you can start to make sense of what the future may hold.

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

User
Posted 14 Jan 2017 at 12:39

Hi Sweetpea

So good that you have found your way on to this site - it's been a lifeline to me over the past seven months. Advice, support, experiences, practical suggestions and, most of all, loving generosity and empathy. I've posted everything from 'simple' questions to howls of misery and have always been helped by the members.

Lots of people will be looking out for you, including me.

Hugs

Eleanor

x

User
Posted 10 Feb 2017 at 20:44
Hi Sweatpea I just wanted to say hello and to let you know that I am thinking of you and your Dad. My lovely Dad also means the absolute world to me and this forum has helped me understand so much and has made me feel less alone. My Dad got his diagnosis eight days ago and I've been signed off work since as I went into total meltdown. However I have called the nurses on this site multiple times and they have been enormously kind, supportive and have given me the knowledge I needed to understand what's going on with Dad. We are awaiting the dreaded bone scan next Thursday. Anyway I just wanted to let you know that you're not alone and I wish you and your Dad positive times ahead x
User
Posted 10 Feb 2017 at 22:09

I don't want to sound harsh and it may be there are other issues affecting how you cope with this news but generally speaking, the sooner you get back to normal the better PenP - your dad has reasonable stats and will probably be around for quite a few years. Life has to go on as normally as possible and it will be more stressful for your dad if he is having to worry about you on top of everything else.

Edited by member 11 Feb 2017 at 15:15  | Reason: Not specified

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

User
Posted 11 Feb 2017 at 20:19
Yes you are absolutely right of course. Don't worry I have been very brave in front of Dad and am being helpful by finding out as much information as I can. The initial shock was tough for everyone but we are in week two now and trying to be cautiously optimistic. I just felt so sad for him! He's amazing xxx
 
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