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Never thought we would be here.....

User
Posted 22 Jun 2016 at 19:46
Hi all. It's taken me a few weeks of reading other people's posts to pluck up the courage to become a member myself.

My dad was recently diagnosed with stage 4 prostate cancer. His Psa was at 82.5 with a Gleason score of 9. Bone scan showed 3 areas of spread, his spine and pelvis. He started hormone therapy straight away but unfortunately due to his age and other health issues he is not a candidate for chemo or radiotherapy.

He's has his first blood test which has shown a drop in his psa to 80. Not much of a drop but it's a move in the right direction. We are also waiting for the results of a bladder scan which came completely out of the blue. I have a feeling the doctors have seen something and they don't want to tell us until it's confirmed. I hope I'm wrong!

I suppose I really wanted to post, not only to tell dad's story but to thank you all. Reading your posts has given me new hope. When i first heard the diagnosis, all I could hear was the C word and automatically feared the worst. Especially hearing that it's incurable. But reading about you all and your loved ones I now see that dad may have many, many more years ahead of him. I hope and pray that this is the case. So, from the bottom of my heart, thank you xx

User
Posted 22 Jun 2016 at 19:46
Hi all. It's taken me a few weeks of reading other people's posts to pluck up the courage to become a member myself.

My dad was recently diagnosed with stage 4 prostate cancer. His Psa was at 82.5 with a Gleason score of 9. Bone scan showed 3 areas of spread, his spine and pelvis. He started hormone therapy straight away but unfortunately due to his age and other health issues he is not a candidate for chemo or radiotherapy.

He's has his first blood test which has shown a drop in his psa to 80. Not much of a drop but it's a move in the right direction. We are also waiting for the results of a bladder scan which came completely out of the blue. I have a feeling the doctors have seen something and they don't want to tell us until it's confirmed. I hope I'm wrong!

I suppose I really wanted to post, not only to tell dad's story but to thank you all. Reading your posts has given me new hope. When i first heard the diagnosis, all I could hear was the C word and automatically feared the worst. Especially hearing that it's incurable. But reading about you all and your loved ones I now see that dad may have many, many more years ahead of him. I hope and pray that this is the case. So, from the bottom of my heart, thank you xx

User
Posted 23 Jun 2016 at 20:25
Hi Jen

Welcome to the site from me too, Im a newbie on here too, my dad has recently been diagnosed, I don't feel I'm in the position to offer any advice regarding treatment plans etc I just don't have the experience yet but im a great listener if you fancy letting off steam, Infact everyone on here are so helpful and friendly, I get Great comfort from these lovely strangers we all have that one thing in common,

Take care

Viv x

The only time you should look back is to see how far you have come
User
Posted 22 Jun 2016 at 21:24

Jen, welcome to the site and sorry that you have to be here for your dad but it is the best site to be on for help from all the patients, other halves(OH's) and relatives that have been there or somewhere near to be able to assist with any questions that you may have or just give support.

I am in the curable camp(hopefully) but sincerely wish your dad and all your family all the best with whatever treatment plan that they decide your dad needs.

There will be many on here that are in the same situation as your dad and will answer.

Stay positive it is better than negative and stay strong for yourself and your dad.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 Jun 2016 at 21:56

Hello Jen and Welcome

You will know from your reading of the site that there are a number of men on here in the incurable camp but they live their lives to the full.

Don't give up hope.

We are here if you need us.

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2016 at 22:09
Hi Jen and welcome from me too.

It's a scary time for you but there'll be a lot of support for you here. Joining this site was one the best things I've done. Staying positive is really important and I wish you well during this time.

John

User
Posted 22 Jun 2016 at 23:25
Hi Jen,

That C word is a shocker isn't it even though we hear that 1 person in 3 will personally know someone with cancer it still strikes fear when it is close to home been there and done that one so I fully understand how you feel. Those early days and not knowing all of the results is so scary again been there and done that.

Trevor is also stage 4 he is my OH and dad to 7 our youngest is 11 .

If you click on people's avatars you will be able to read there stories and journeys I would say stay away from googling even though I have done it myself. Here on the forum you will get real people who are going through real journeys.

Trevor was diagnosed 3 years ago in May with a PSA of 13000 he has extensive spread throughout his bones and lymph nodes he has had various treatments and he is still going strong, still driving and feeling well .

My advise would be stay strong , hug your dad as often as you can and take strength from all of us on the forum for as long as you need it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jun 2016 at 23:36

Hi Jen,
How old is he and how long ago did he start HT? The drop from 82 to 80 is reasonable if all he has had is 4 weeks of bicalutimide - which HT is he on?

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

User
Posted 23 Jun 2016 at 00:35
Hi Jen

Just to say welcome and I know you must have read quite a few posts so you will know many of our stories a little bit. It's a funny old disease, a few men seem to get it and no treatment helps, that's the worst case, most of us seem to follow a slower path, so take some comfort from that,. I'm hoping your dad is in the latter category.

Do let us know how he gets on.

Love

Devonmaid

User
Posted 23 Jun 2016 at 01:38
Hi it's nice if that's the right word to read similar stories especially in the darkness of the early hours when every thought and emotion is running through your head. My dad like your has it very similar we've been told it's spread a gleeson of 9 and looking as though it's in the pelvic bone and possibly others were waiting the bone scan which is always the worst weighting.

We were told on Tuesday and it hasn't really sunk in yet, it sounds as though like my dad he's a very special man. I wish him well and you too, as daughters I guess it's our turn to do something in return for them and hold everything together and keep strong.

All good wishes Amanda

User
Posted 23 Jun 2016 at 20:19

Hi Jen,
Sorry about your dads dx but it's good you found the site. When dx I was Gleason 9 and PSA 294 with mets. After a year of treatment on HT and 6 rounds of chemo, life is relatively back to normal. Although a bit younger than your dad hopefully h is fit and 70's is the new 50's. My dad also had pca and was treated in his late 60's and is going strong after 20 years. Hopefully your dads treatment will go well. Remember to keep us updated and ask any questions you need answered.
It's a great site and helped me during my treatment.
Steven

User
Posted 23 Jun 2016 at 21:56

I could be wrong but I think he may be the first man on this forum to be offered TITAN. This is very exciting and I won't be the only one who watches your dad's progress closely :-)

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

Show Most Thanked Posts
User
Posted 22 Jun 2016 at 21:24

Jen, welcome to the site and sorry that you have to be here for your dad but it is the best site to be on for help from all the patients, other halves(OH's) and relatives that have been there or somewhere near to be able to assist with any questions that you may have or just give support.

I am in the curable camp(hopefully) but sincerely wish your dad and all your family all the best with whatever treatment plan that they decide your dad needs.

There will be many on here that are in the same situation as your dad and will answer.

Stay positive it is better than negative and stay strong for yourself and your dad.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 Jun 2016 at 21:56

Hello Jen and Welcome

You will know from your reading of the site that there are a number of men on here in the incurable camp but they live their lives to the full.

Don't give up hope.

We are here if you need us.

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2016 at 22:09
Hi Jen and welcome from me too.

It's a scary time for you but there'll be a lot of support for you here. Joining this site was one the best things I've done. Staying positive is really important and I wish you well during this time.

John

User
Posted 22 Jun 2016 at 23:25
Hi Jen,

That C word is a shocker isn't it even though we hear that 1 person in 3 will personally know someone with cancer it still strikes fear when it is close to home been there and done that one so I fully understand how you feel. Those early days and not knowing all of the results is so scary again been there and done that.

Trevor is also stage 4 he is my OH and dad to 7 our youngest is 11 .

If you click on people's avatars you will be able to read there stories and journeys I would say stay away from googling even though I have done it myself. Here on the forum you will get real people who are going through real journeys.

Trevor was diagnosed 3 years ago in May with a PSA of 13000 he has extensive spread throughout his bones and lymph nodes he has had various treatments and he is still going strong, still driving and feeling well .

My advise would be stay strong , hug your dad as often as you can and take strength from all of us on the forum for as long as you need it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jun 2016 at 23:36

Hi Jen,
How old is he and how long ago did he start HT? The drop from 82 to 80 is reasonable if all he has had is 4 weeks of bicalutimide - which HT is he on?

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

User
Posted 23 Jun 2016 at 00:35
Hi Jen

Just to say welcome and I know you must have read quite a few posts so you will know many of our stories a little bit. It's a funny old disease, a few men seem to get it and no treatment helps, that's the worst case, most of us seem to follow a slower path, so take some comfort from that,. I'm hoping your dad is in the latter category.

Do let us know how he gets on.

Love

Devonmaid

User
Posted 23 Jun 2016 at 01:38
Hi it's nice if that's the right word to read similar stories especially in the darkness of the early hours when every thought and emotion is running through your head. My dad like your has it very similar we've been told it's spread a gleeson of 9 and looking as though it's in the pelvic bone and possibly others were waiting the bone scan which is always the worst weighting.

We were told on Tuesday and it hasn't really sunk in yet, it sounds as though like my dad he's a very special man. I wish him well and you too, as daughters I guess it's our turn to do something in return for them and hold everything together and keep strong.

All good wishes Amanda

User
Posted 23 Jun 2016 at 19:57
Hi Lyn.

My dad is 72. He has been on the HT for around 5 weeks I think. I'm not too sure which one though. He has been invited to take part in the Titan trial. He has all the paperwork so I'll have a wee read at the weekend when I visit to see what's involved. He is delighted with the drop in psa. It really lifted his spirits. Hope it continues in the right direction!

User
Posted 23 Jun 2016 at 20:03
Hi Amanda

This site is by far the best thing I have found since this journey began. Reading the stories of real people and how they are living a reasonably normal (if that's the right word) life has been an inspiration and has given me so much hope for dad. I hope it has done the same for you too.

Best wishes to you and your family xx

User
Posted 23 Jun 2016 at 20:07
To those of you I haven't responded to individually, thank you for your kind words and support. You have made me feel so welcome. I'll keep you updated with dad's progress - hopefully things will be positive for as long as possible.

Sending my love to you all, wherever you and your loved ones are on your journey xx

User
Posted 23 Jun 2016 at 20:19

Hi Jen,
Sorry about your dads dx but it's good you found the site. When dx I was Gleason 9 and PSA 294 with mets. After a year of treatment on HT and 6 rounds of chemo, life is relatively back to normal. Although a bit younger than your dad hopefully h is fit and 70's is the new 50's. My dad also had pca and was treated in his late 60's and is going strong after 20 years. Hopefully your dads treatment will go well. Remember to keep us updated and ask any questions you need answered.
It's a great site and helped me during my treatment.
Steven

User
Posted 23 Jun 2016 at 20:25
Hi Jen

Welcome to the site from me too, Im a newbie on here too, my dad has recently been diagnosed, I don't feel I'm in the position to offer any advice regarding treatment plans etc I just don't have the experience yet but im a great listener if you fancy letting off steam, Infact everyone on here are so helpful and friendly, I get Great comfort from these lovely strangers we all have that one thing in common,

Take care

Viv x

The only time you should look back is to see how far you have come
User
Posted 23 Jun 2016 at 21:56

I could be wrong but I think he may be the first man on this forum to be offered TITAN. This is very exciting and I won't be the only one who watches your dad's progress closely :-)

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

User
Posted 03 Jul 2016 at 22:03
Hello Jen,

I am in a similar position to you also. My Dad was diagnosed a few weeks ago with prostate cancer.

He has since had an emergency admission with spinal cord compression due to mets in his spine. He is awaiting a nuclear scan next week to confirm any further mets.

He is currently receiving radiotherapy to his spine and hormone therapy for the prostate (which we be reviewed by the oncologist in a couple of weeks).

We know his PSA is 107 and stage T4.

Like you, I have found great comfort on this site. It is like a ray of light in a dark tunnel to find others going through the same situation and feeling like you do. Also hearing of those who are still leading relatively normal lives years after advanced diagnoses.

I wish you and your Dad all the best of luck on this journey and remember you're not alone.

GW

 
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