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User
Posted 18 Jan 2018 at 18:36
Hello everyone

Firstly I apologise that I don’t have all the terminology,. My husband was diagnosed before Christmas, his PSA was 170..all the results are now available, and his Macmillan nurse has advised that the cancer has spread to the bones, and also there is a nodule on his liver. His Gleason score is 8.so all in all not great, very scary indeed.

He had a course of hormone tablets, and an injection. Due for another injection next week

We are seeing the specialist on 2 Feb. Haven’t had any positive news so far but trying to keep our chins up. I guess I’m not looking for any advice specifically, I’m just reaching out to others who have been through and/or are continuing to go through these things.

Love to you all

Elaine.

Edited by member 18 Jan 2018 at 19:23  | Reason: Not specified

User
Posted 21 Jan 2018 at 18:05
Hi all, we too have been on our journey for the last few years. Hubby had bowel cancer in 2011 and had his colon removed. We had five good years cancer free.and then he was diagnosed with advanced prostate cancer in 2016 with spread to two places on his spine plus pelvis, we were devastated! But he remained positive and is on HT plus has had chemo. Then same year diagnosed with breast cancer and then stomach cancer. He had his stomach and breast removed. It was a horrendous year, so many tears and dark days, but he has come through all that amazingly and remains as positive as ever as we continue with treatment for the pca, He just had ct and mri scans as his Psa was starting to rise a bit , it’s up from 0.25 to 4.31 in 10 months, but he’s still feeling really well and doing all the usual things , so don’t despair keep going and hopefully there will be a lot of living left to do. My advice would be to keep as physically and emotionally fit as you can and except any help that maybe offered along the way eg counselling or alternative therapies as they have definitely helped my hubby. He’s just raised £450 for cancer support from all the generous people who came to his 60th birthday party!, we’ve been so grateful for their help and support, can’t thank them enough . Good luck to everyone on their individual journeys.

Debbie x

User
Posted 18 Jan 2018 at 19:16
Hi Elaine

We are in more or less a similar situation to you and your husband, diagnosed before Christmas with PSA 127 and spread to bones and lymphnodes Gleason 9. We were particularly shocked as this was diagnosed on the back of a routine blood test, with no symptoms other than frequency of urinating mostly at night. Ronnie was so active and fit played golf 4 times a week and a regular gym goer.

Like you this diagnosis has rocked us and we are really struggling to accept what is to come.

Everyone on this forum are so encouraging and are willing to share their experience and knowledge, it has really kept me sane!

Fondest wishes to you both. xxx

User
Posted 18 Jan 2018 at 19:30

Hello,

My dad was also diagnosed (oct 2017) with advanced prostate cancer, spread to pelvis bone and a spot on the ribs. His PSA was 48 and gleasons score 8. They started him on the adt shots and he will be starting chemo shortly.

Last friday he got news his PSA had dropped to 12 but then yesterday he was told its now spread to his lymph nodes and lower lungs. I am just devastated for my dad. Its so hard to believe as he otherwise seems and looks healthy, he says he feels fine aside from some minor side effects from the ADT.

Just thought i'd drop you a line to say, hang on in there, hopefully there are lots of treatment options available your husbands and my dear dad and they have many years to live yet. 

Sending my best wishes your way x

User
Posted 20 Jan 2018 at 09:24
Hi Devonmaid

Great post, good to hear John is still with us. Similar to me G9, T3b and PSA 32 when DX 2 and a half years ago aged 55. Had RP, RT and HT so was devastated to be DX with the spread to pelvic bone.

Met with Oncologist yesterday and fearing the worst and not thinking I would see the year out. But was surprised with his positive attitude and he told me that I had many a year left.

Had thoughts of never seeing any grand kids but now I have been given a new lease. I know that I will never be free from this s*** but I am happy in the knowledge that there is plenty of support and treatments if I need them. Starting chemo in 2 weeks.

As you said Devonmaid all is not dark so keep a positive attitude.

Onwards and upwards

Sandy

User
Posted 18 Jan 2018 at 18:36
Hello everyone

Firstly I apologise that I don’t have all the terminology,. My husband was diagnosed before Christmas, his PSA was 170..all the results are now available, and his Macmillan nurse has advised that the cancer has spread to the bones, and also there is a nodule on his liver. His Gleason score is 8.so all in all not great, very scary indeed.

He had a course of hormone tablets, and an injection. Due for another injection next week

We are seeing the specialist on 2 Feb. Haven’t had any positive news so far but trying to keep our chins up. I guess I’m not looking for any advice specifically, I’m just reaching out to others who have been through and/or are continuing to go through these things.

Love to you all

Elaine.

Edited by member 18 Jan 2018 at 19:23  | Reason: Not specified

User
Posted 18 Jan 2018 at 19:45

Hi Elaine
I’ve been thinking about you lately. My husbands diagnosis is very similar. PSA 210, Gleason 8 T3+ N1 M1b. So spread to bones and lymph, which is affecting his left kidney draining. He too had no symptoms.
We are going to Oncology on the 30th. It’s scary, confusing and very upsetting. I hope that you get lots of support on here whilst you wait for the next steps. Meanwhile I’m here if you want to chat. Fingers crossed for us all in this situation.
SusieW. X

User
Posted 19 Jan 2018 at 07:39
Thank you JT, and for the pm, I wasn’t being rude, I was unable to reply as I hadn’t posted enough in the forums. It’s nice to be in this forum with so many going through a similar journey. We too are at castle hill, so yes it would be lovely to keep in touch, especially as we are close geographically.

I wish all the best to you and your husband. Sean has just read the whole toolkit, I have done lots of research, although there er no real answers as all our journeys are slightly different I guess.

Thank you and to everyone on here xxx

User
Posted 19 Jan 2018 at 22:31
Hi guys

Hopefully our story will help a bit. Of course everyone is an individual but my hubby John was diagnosed seven years ago, aged 61, PSA 25 Gleason 10 spread to bones in pelvis, spine and top of the leg and lymph. He still hasn’t had chemo, he has just finished Radium 223 and current PSA is 78. Maybe starting chemo soon, who knows. Seven years! Who knew. I can assure you we never thought we’d still be chugging along but we are. I can’t pretend it’s all been plain sailing, he has lost the use of his bladder along the way and we nearly lost him to kidney failure but hey! We’ve seen our girls married, and have a three year old granddaughter, we never thought those things would happen and John would live to see them. Gleason 10, and still here. Yes it can be done. No idea how, must be some sort of magic I think. Or his wonderful wife (haha). Chin up, you never know, life can go on.

Lots of love

Devonmaid xxxx

User
Posted 18 Jan 2018 at 20:36
Oh susie, I thought of you too as it all happened for us both at a similar time.

It s such a hard thing to deal with, and I feel a guilt that I can’t do more apart from be supportive, without being too suffocating.

I wish you and your husband all the love in the world xxx

User
Posted 18 Jan 2018 at 21:13

Hi Elaine,
It feels like a roller coaster ride. Some days I’m on the verge of tears for hours. Other days I’m more together. My hubby Mike has been a bit more emotional too. Might be the HT or maybe it’s all sinking in. I will be thinking of you on the 2nd. Is that oncology? Hope all goes well. We are going on the 30th. We are so wanting the day to come and yet so scared! If it is oncology let me know, I’ve been having thoughts about a survival pack.
Take care both of you, you are not alone!
Susie x

User
Posted 18 Jan 2018 at 21:25
I was diagnosed last May, PSA 127, Gleason 9 aged 60 and no symptoms. Widespread through the bones and incurable. All I can say is that we fell apart for 3-4 months. Then we realised that life may be a lot shorter than we thought and we should enjoy each day to the full. It’s not easy even now but it does get much easier.
User
Posted 19 Jan 2018 at 07:59

Keep strong ,my OH Gary was diagnosed 2 years ago aged 55 .PSA23 Gleason 9 and lymph node spread .
After the initial shock and once treatment started everything calmed down a bit . Gary wasn't a candidate for surgery or RT so was started on hormones and then 6 sessions of chemo ,which thankfully he carried on working through, he had minimal side effects and only loss of some body hair .
For the last 18 months he has been on the stampede trial arm j (now closed) ,the main side effects are fatigue but we still enjoy holidays and everyday life just at a slower pace .
As I said once the treatment starts to show results and the PSA lowers you should start to relax slightly.
Good luck on your journey and keep asking questions as the knowledge and compasssion on this site is fantastic.
Best wishes
Debby

User
Posted 19 Jan 2018 at 11:11
Hi Elaine.

Every sympathy with you and your husband.

I was DX in July 2015 with G9, PSA 32 and T3B. Cancer had spread to various areas outside the prostate. I have had RP, RT and 2 years HT since then. But unfortunately had some pain in my shoulders and had a bone scan in Dec last year which has come back as cancer cells in the shoulders and pelvic bone. Being told that you are no longer curable is a total depressing time, since DX I have found it difficult coming to terms with the news especially since I have been strong before hand thinking it was curable.

Anyway i meet with the consultant this afternoon to discuss what lies ahead and I've never been so scared in my life, I've always considered myself to be strong.

Good luck in your journey as we are all in this together.

Edited by member 19 Jan 2018 at 11:13  | Reason: Not specified

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User
Posted 18 Jan 2018 at 19:16
Hi Elaine

We are in more or less a similar situation to you and your husband, diagnosed before Christmas with PSA 127 and spread to bones and lymphnodes Gleason 9. We were particularly shocked as this was diagnosed on the back of a routine blood test, with no symptoms other than frequency of urinating mostly at night. Ronnie was so active and fit played golf 4 times a week and a regular gym goer.

Like you this diagnosis has rocked us and we are really struggling to accept what is to come.

Everyone on this forum are so encouraging and are willing to share their experience and knowledge, it has really kept me sane!

Fondest wishes to you both. xxx

User
Posted 18 Jan 2018 at 19:30

Hello,

My dad was also diagnosed (oct 2017) with advanced prostate cancer, spread to pelvis bone and a spot on the ribs. His PSA was 48 and gleasons score 8. They started him on the adt shots and he will be starting chemo shortly.

Last friday he got news his PSA had dropped to 12 but then yesterday he was told its now spread to his lymph nodes and lower lungs. I am just devastated for my dad. Its so hard to believe as he otherwise seems and looks healthy, he says he feels fine aside from some minor side effects from the ADT.

Just thought i'd drop you a line to say, hang on in there, hopefully there are lots of treatment options available your husbands and my dear dad and they have many years to live yet. 

Sending my best wishes your way x

User
Posted 18 Jan 2018 at 19:45

Hi Elaine
I’ve been thinking about you lately. My husbands diagnosis is very similar. PSA 210, Gleason 8 T3+ N1 M1b. So spread to bones and lymph, which is affecting his left kidney draining. He too had no symptoms.
We are going to Oncology on the 30th. It’s scary, confusing and very upsetting. I hope that you get lots of support on here whilst you wait for the next steps. Meanwhile I’m here if you want to chat. Fingers crossed for us all in this situation.
SusieW. X

User
Posted 18 Jan 2018 at 20:36
Oh susie, I thought of you too as it all happened for us both at a similar time.

It s such a hard thing to deal with, and I feel a guilt that I can’t do more apart from be supportive, without being too suffocating.

I wish you and your husband all the love in the world xxx

User
Posted 18 Jan 2018 at 21:13

Hi Elaine,
It feels like a roller coaster ride. Some days I’m on the verge of tears for hours. Other days I’m more together. My hubby Mike has been a bit more emotional too. Might be the HT or maybe it’s all sinking in. I will be thinking of you on the 2nd. Is that oncology? Hope all goes well. We are going on the 30th. We are so wanting the day to come and yet so scared! If it is oncology let me know, I’ve been having thoughts about a survival pack.
Take care both of you, you are not alone!
Susie x

User
Posted 18 Jan 2018 at 21:25
I was diagnosed last May, PSA 127, Gleason 9 aged 60 and no symptoms. Widespread through the bones and incurable. All I can say is that we fell apart for 3-4 months. Then we realised that life may be a lot shorter than we thought and we should enjoy each day to the full. It’s not easy even now but it does get much easier.
User
Posted 18 Jan 2018 at 23:06
Hi elaine im sorry your both in this situation its a horrible place to be such a rollercoaster of emotions to deal with my heart goes out to you? i felt at first like i was in some kind of nightmare my heart felt like it was going to break, just felt such sadness and felt so scared of what our future would hold especially when first diagnosed, i felt so sad but didnt want to show my OH just wanted to try and be strong and positive for him,i just felt lost and needed to feel like i was suporting him in some way, hes the other half of me and im not complete without him, so told him its not his fight its ours and were in it together whatever the outcomes or side effects we,l sort it between us, its important to talk? ive found my oh wont start a conversation about it but once its open he.l talk or ask questions, i made it my mission to find out as much as possible, i ordered the toolkit left each relevant one for him to read highlighted the parts relevant and made bullett points, think it might have been there a month before i noticed he,d read any, im quite new to this awful journey myself but members on here have been such a support..were also from the same area elaine.. treatment at queens centre castle hill, feel free to message anytime..take care thinking of you.jo.x
User
Posted 19 Jan 2018 at 07:39
Thank you JT, and for the pm, I wasn’t being rude, I was unable to reply as I hadn’t posted enough in the forums. It’s nice to be in this forum with so many going through a similar journey. We too are at castle hill, so yes it would be lovely to keep in touch, especially as we are close geographically.

I wish all the best to you and your husband. Sean has just read the whole toolkit, I have done lots of research, although there er no real answers as all our journeys are slightly different I guess.

Thank you and to everyone on here xxx

User
Posted 19 Jan 2018 at 07:59

Keep strong ,my OH Gary was diagnosed 2 years ago aged 55 .PSA23 Gleason 9 and lymph node spread .
After the initial shock and once treatment started everything calmed down a bit . Gary wasn't a candidate for surgery or RT so was started on hormones and then 6 sessions of chemo ,which thankfully he carried on working through, he had minimal side effects and only loss of some body hair .
For the last 18 months he has been on the stampede trial arm j (now closed) ,the main side effects are fatigue but we still enjoy holidays and everyday life just at a slower pace .
As I said once the treatment starts to show results and the PSA lowers you should start to relax slightly.
Good luck on your journey and keep asking questions as the knowledge and compasssion on this site is fantastic.
Best wishes
Debby

User
Posted 19 Jan 2018 at 11:11
Hi Elaine.

Every sympathy with you and your husband.

I was DX in July 2015 with G9, PSA 32 and T3B. Cancer had spread to various areas outside the prostate. I have had RP, RT and 2 years HT since then. But unfortunately had some pain in my shoulders and had a bone scan in Dec last year which has come back as cancer cells in the shoulders and pelvic bone. Being told that you are no longer curable is a total depressing time, since DX I have found it difficult coming to terms with the news especially since I have been strong before hand thinking it was curable.

Anyway i meet with the consultant this afternoon to discuss what lies ahead and I've never been so scared in my life, I've always considered myself to be strong.

Good luck in your journey as we are all in this together.

Edited by member 19 Jan 2018 at 11:13  | Reason: Not specified

User
Posted 19 Jan 2018 at 22:31
Hi guys

Hopefully our story will help a bit. Of course everyone is an individual but my hubby John was diagnosed seven years ago, aged 61, PSA 25 Gleason 10 spread to bones in pelvis, spine and top of the leg and lymph. He still hasn’t had chemo, he has just finished Radium 223 and current PSA is 78. Maybe starting chemo soon, who knows. Seven years! Who knew. I can assure you we never thought we’d still be chugging along but we are. I can’t pretend it’s all been plain sailing, he has lost the use of his bladder along the way and we nearly lost him to kidney failure but hey! We’ve seen our girls married, and have a three year old granddaughter, we never thought those things would happen and John would live to see them. Gleason 10, and still here. Yes it can be done. No idea how, must be some sort of magic I think. Or his wonderful wife (haha). Chin up, you never know, life can go on.

Lots of love

Devonmaid xxxx

User
Posted 20 Jan 2018 at 09:24
Hi Devonmaid

Great post, good to hear John is still with us. Similar to me G9, T3b and PSA 32 when DX 2 and a half years ago aged 55. Had RP, RT and HT so was devastated to be DX with the spread to pelvic bone.

Met with Oncologist yesterday and fearing the worst and not thinking I would see the year out. But was surprised with his positive attitude and he told me that I had many a year left.

Had thoughts of never seeing any grand kids but now I have been given a new lease. I know that I will never be free from this s*** but I am happy in the knowledge that there is plenty of support and treatments if I need them. Starting chemo in 2 weeks.

As you said Devonmaid all is not dark so keep a positive attitude.

Onwards and upwards

Sandy

User
Posted 21 Jan 2018 at 18:05
Hi all, we too have been on our journey for the last few years. Hubby had bowel cancer in 2011 and had his colon removed. We had five good years cancer free.and then he was diagnosed with advanced prostate cancer in 2016 with spread to two places on his spine plus pelvis, we were devastated! But he remained positive and is on HT plus has had chemo. Then same year diagnosed with breast cancer and then stomach cancer. He had his stomach and breast removed. It was a horrendous year, so many tears and dark days, but he has come through all that amazingly and remains as positive as ever as we continue with treatment for the pca, He just had ct and mri scans as his Psa was starting to rise a bit , it’s up from 0.25 to 4.31 in 10 months, but he’s still feeling really well and doing all the usual things , so don’t despair keep going and hopefully there will be a lot of living left to do. My advice would be to keep as physically and emotionally fit as you can and except any help that maybe offered along the way eg counselling or alternative therapies as they have definitely helped my hubby. He’s just raised £450 for cancer support from all the generous people who came to his 60th birthday party!, we’ve been so grateful for their help and support, can’t thank them enough . Good luck to everyone on their individual journeys.

Debbie x

User
Posted 22 Jan 2018 at 19:00

Hi Devonmaid 

I've just read your post and found it very interesting . I was diagnosed just over 4 years ago with  T4  Prostate Cancer , I had just turned  60 .  It was a result of a blood test to check my Cholesterol , and I wasn't even over weight !  It was very difficult to accept at first  , especially as I had always led a full and active life . I learned to live with it and carried on working albeit at a slower pace than before . Tiredness  and fatigue is something I've reluctantly got used to  . To begin with I was on Bicalutamide then onto  Enzalutamide for 18 months  which kept my PSA at  a low level but eventually it started rise gradually . An scan last September revealed two new areas of Bone Cancer , in my lower back and in my neck . I had one session of RT on my back in December . I have now  started my Radium 223 treatment with no adverse effects so far , but I have been told that you can get quite a lot of bone pain after the 4th /5th injections . After that it will be Chemo , but as you say who knows. On top of all this I also had a problem with my Kidneys last year resulting in the removal of 15 Kidney stones .

My family are absolutely wonderful . I don't think there is an appointment that I have ever attended on my own !                                       

Best wishes to you and your husband and good luck with his future treatment . 

Regards

Ron 

User
Posted 23 Jan 2018 at 08:07
Thanks Ron,

Looks like it will be chemo for us after our appointment yesterday, I need to update my post but have no idea what I called it!

Good luck everyone, try not to despair, hard to do but as my lovely friend and forum wonder Lyn reminded me recently, we are alive! Let’s be grateful and happy for that and make the most of what we have. It’s something I try to live every day and it makes my life worth living, even in the darkness (and we’ve had a lot of dark days).

Lots of love forum members

Devonmaid xxx

 
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