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User
Posted 19 Jan 2019 at 20:22

My husband had his results on Thursday (17/1/18) - PSA 90.5, Gleason 9, spread to bones - pelvis and clavicle, spread to lymph nodes. Not what we wanted to hear! Obviously we are still getting over the shock and having some very dark times but we are also managing to have moments of 'normality'. We have wonderful family and friends and we are all in this together.

I have shared some of your profiles/conversations with my husband and he is starting to get the message that life can go on, so thank you!

He is 58, a retired PE teacher and he has always kept himself fit. He played football and still coaches volleyball. He has always been a runner and he intends to keep doing this for as along as he can.

The hospital phoned on Friday (the day after his results) and he is seeing an oncologist at 9am on Monday morning. They certainly don't waste time! He has been on hormone tablets since 17th December when he was initially diagnosed. On Thursday they gave him his first hormone injection. I'm not sure if anybody can give us some idea about what may happen next? Is he likely to be given radiotherapy/chemotherapy anytime soon or just left on hormone therapy? Would you say that he is classed as advanced and t3 or t4? We couldnt take it all in the other day as much as we tried. We are under the impression that the pc wont be cured but it can be controlled. 

User
Posted 20 Jan 2019 at 11:58

I don’t know if this will help, but my husband was diagnosed in December 2010 with a G 10 (5+5) and spread to lymph and bones. He was 61 at the time and we were terrified. It is only now that things have become very difficult for us. At the time i prayed to a deity i didn't really believe in and begged for four years and we have had eight so far. Its not all been plain sailing but we have seen our daughters married and have had the incredible delight of a granddaughter, now four, with a new grandson due this coming week. If you had told me this eight years ago i would have taken this and thought it to be wonderful, and I do now. We have been so lucky, given the Gleason score. There is hope, especially as the treatment regime has improved in the eight years and new drugs are available that were not when this began for us. Someone told us the key is to survive long enough for the new drugs to come along, good advice!

I wish you well and tell you this to give you some hope, I didn't have much to begin with as i couldn't find many G10s who had survived all that long at the time but things are changing.

Good luck, let us know how you get on. We will supoort you along thw way.

love Devonmaid xxx

User
Posted 21 Jan 2019 at 06:23

Hello from the West Coast of the USA.  I was initially diagnosed at age 65 about 5 years ago as very metastatic with lots of mets to many bones and lymph nodes.  My bone scan lighted up like a Christmas Tree, and my PSA was a ridiculously high 5,006.  The systemic treatment with a simple injection to greatly lower Testosterone levels worked very well for me.  My bone pains went away and my PSA dropped to as low as 1.0 within several months.  I was also given a drug to help keep my bones stronger during treatment (in my case Zometa (zolendronic acid), but it also could have been Xgeva (denosumab)).

Were I treated today, I probably would have been prescribed the same, but perhaps with either early Chemo (docetaxel) or early Zytiga (abiraterone acetate + prednisone), per the more recent results of Clinical Trials that were reported in recent years in the USA and the UK.

The most significant change (other than the pain reduction) was the slow impact of living in a body with a greatly reduced level of Testosterone.  I got frequent hot flushes (aka flashes in some parts of the world), a loss of sex drive and desire, some weight gain, and a slow lowering of overall energy and peak strength.  Other slow changes involved less frequent erections, a slow shortening of penis size and testicle size, and slow changes to external secondary sexual characteristics of an adult male.  Hair on my knuckles and toes slowly went away, along with chest hair, most pubic and groin hair, and chest hair, and underarm hair.  My skin also stopped being so oily  (and I stopped smelling so much like an old billy goat - Ha. Ha).   

The initial treatment work very well for me, for nearly 2 years.  During the 3rd year with other consultations/treatments, my PSA eventually went back up again to as high as 95.0.   I added the androgen blocker Xtandi (enzalutamide) about 26 months ago.  PSA went back down to 1.2, and now, a little over 5 years since original diagnosis is trending upwards again, but still only at 3.1.  

I have been very lucky with some biological responses to treatment, so far.  My overall quality of life has also been improved by my and my spouse's attending some face-to-face prostate cancer support groups, and some general cancer support groups for advance cancer people and their spouses/caregivers.  

For me, about 1/2 of the stress and difficulties, especially during the 1st year after the "incurable Stage IV" diagnosis were mental and emotional, and about 1/2 were in the medical/technical details.  

A balanced life, lived mostly in the Present Moment, seems better for me than brooding over the past, or being overly anxious about the future.

Just some thoughts...

Charles

 

 

Edited by member 21 Jan 2019 at 06:30  | Reason: typo

User
Posted 19 Jan 2019 at 22:43
He could be T3 or 4 but sounds like he will definitely be Nx Mx. Regarding treatment they tend to throw everything at it these days as this has been found to be most effective. By everything I mean HT (already started) Chemo and possibly Radio Therapy too as attacking the mother ship with RT has proven to be beneficial even when the cancer has metatisized.

It's important you familiarise yourself with the latest cutting edge thinking once you know his full staging as PC has very varied outcomes and this isn't all down to luck or genetics..

Not a great start to new year for you, fingers crossed things start getting better now..

User
Posted 20 Jan 2019 at 01:19

You will need to ask on Monday what his staging (T number) is but it could be anything from T2 to T4. As for the rest of the results, he won’t be NxMx as they have already done the diagnostics so at the minute it seems he is

T? G9 N1 M1

It won’t make a difference to the treatment plan but when you see the results written down the G9 will either be G9(4+5) or G9(5+4)

The N1 will be if the spread is to distant lymph nodes. If only lymph nodes in the pelvis are affected, he could be N0

Just to make things really complicated, the T score is different to other ways of writing cancer results. For example, T4 means that the cancer has come out of the prostate and affected other things nearby, such as the bladder or bowel. Stage 4 cancer (for any kind of cancer) means advanced / incurable. So he could have a stage 4 cancer which is a T3 prostate cancer with bone mets.

With bone and lymph involvement, I would be very surprised if they offered RT as it is usually only given in curative cases although there has been a recent trial where they gave it to men who only had very limited spread. As for chemo, until recently it was only given to men in the very late stages to extend life a bit when other treatments had failed, because chemo doesn't actually cure prostate cancer. However, recent research has shown that it can make hormone treatment work much better for longer so it is increasingly being given soon after diagnosis in advanced cases; definitely worth you asking about it at the appointment. Sadly, it is still not available in all areas of the country but your onco should be willing to discuss it with you; there are some existing medical conditions that might make it not such a good idea for some people. 

Edited by member 20 Jan 2019 at 01:29  | Reason: Not specified

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

User
Posted 20 Jan 2019 at 05:38

Hi Deb,

Sorry to hear your unfortunate news. Did your husband ever have a PSA test prior to the one last year?

Best of luck for the future.

Cheers, John.

Edited by member 20 Jan 2019 at 05:39  | Reason: Not specified

User
Posted 20 Jan 2019 at 08:20
Hi Deb

I was diagnosed T4 in August so a few months ahead of you on this unenviable journey.

I've completed 6 chemo sessions then I'm going on holiday

When I get back I'm having 20 Radiotherapy sessions to try and keep this beast of a disease at bay.

John

User
Posted 20 Jan 2019 at 09:24
Sorry Deblc / lyn the Nx was meant to indicate it's not likely to be N0.

Key point is you need the full staging and to try and understand the options. I have only been on this forum 2 years and the the options for T3/4 have changed several times in that period.

Hope it's good news when you see the onco again.

User
Posted 20 Jan 2019 at 10:04

He has T3 or T4; he'll almost certainly be offered chemotherapy, with radiotherapy a possibility, as there's evidence that some metastases respond to treatment of the primary tumor.

Radiotherapy to bony metastases is also a possibility, depending on whether it could be of benefit (eg pain).

Good luck!

User
Posted 20 Jan 2019 at 11:55
Sorry you find yourself here. As others have said there are many treatments available. Read the profiles of men with similar dx and you will see that it is possible to get on with life but living your new normal

From what you have explained it shoulds like he is T4 N1 M1 as the cancer has spread to lymph nodes and other parts of the body

Take care and good luck with the treatment

Bri

User
Posted 21 Jan 2019 at 10:34

Excellent, encouraging post Charles

(from a grey, cold South Yorkshire)

Bri

User
Posted 21 Jan 2019 at 14:57

I completely understand, we have our first appointment with oncology tomorrow. At least yours are moving quickly, we haven't seen any consultant for 3 months!!

We're you encouraged by the plan at all? I guess it's a lot to take in in a short amount of time.

Some encouraging stories above

 

User
Posted 21 Jan 2019 at 16:40

Thank you

I would recommend speaking to the nurses on here, they are so kind and knowledgeable so if you have any questions or just someone to listen that could be good for you and/or your husband. They can even arrange for your husband to speak to someone in the same situation who has been there and done that themselves 

Do keep it contact asked it's important to not feel alone

Edited by member 21 Jan 2019 at 16:41  | Reason: Not specified

User
Posted 09 Feb 2019 at 22:54
Hi Deb,

It’s always good to get the first chemo session out of the way. I didn’t really know what to expect but after first session I was a lot happy. As per, chemo affects everyone in different ways. I had my first six sessions two years ago and although had some SE it was generally tiredness after session four/five. It can be tiring but you have to listen to your body. I worked throughout but rested when need be. I found exercise worked but not to over do it, ie I walked the dogs, gardened and jogged a little. Food wise just kept healthy eating but still had red meat,pastas, rice salads but didn’t really go overboard. Walking etc gave my mind a bit of exercise too and chatting about it with OH. So yes you can get through chemo relatively unscathed and by the end of it I actually missed the routine of blood tests, scans and chemo!

GL with treTment.

Steven

User
Posted 10 Feb 2019 at 00:22

Hi Deb

My oh finished his chemo in September, he came through it relatively unscathed...his worst days were 3-7 where he felt tired and had bone pain. He was never sick and didn't suffer with mouth ulcers, think this was because he used the mouth all the time. He also managed to work all the way through, fortunately he could work from home. 

He always had his blood test on a Monday saw cinsulcons on Tuesday and chemo on Wednesday. He's also on hormone injections.

 

5 months down the line everything is good but he dido still get tired.

Hope this helps and your oh comes through aswell as mine.

Regards Karen

User
Posted 20 Feb 2019 at 21:52
Thank you for your support Debbie on my post. I've just had a read through your profile. Wishing you all the best with the chemo. N was alright during it all, just one temperature and we went to a&e for intravenous antibiotics as a precaution. I didn't post anything about the chemo as life pretty much carried on as normal, with perhaps a little more snoozing on occasion. N wasn't able to continue working from quite early in his diagnosis, the fatigue was just too intense but that summer we went away as normal and the February following the end of chemo in October, we went skiing.

Lots of positive stories after docetaxel on here. Radiotherapy following chemo seems to be a new thing, N wasn't offered it as a "course".

I've pulled myself out of the pity pit now, being by myself has its downsides!xx

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User
Posted 19 Jan 2019 at 22:43
He could be T3 or 4 but sounds like he will definitely be Nx Mx. Regarding treatment they tend to throw everything at it these days as this has been found to be most effective. By everything I mean HT (already started) Chemo and possibly Radio Therapy too as attacking the mother ship with RT has proven to be beneficial even when the cancer has metatisized.

It's important you familiarise yourself with the latest cutting edge thinking once you know his full staging as PC has very varied outcomes and this isn't all down to luck or genetics..

Not a great start to new year for you, fingers crossed things start getting better now..

User
Posted 20 Jan 2019 at 01:19

You will need to ask on Monday what his staging (T number) is but it could be anything from T2 to T4. As for the rest of the results, he won’t be NxMx as they have already done the diagnostics so at the minute it seems he is

T? G9 N1 M1

It won’t make a difference to the treatment plan but when you see the results written down the G9 will either be G9(4+5) or G9(5+4)

The N1 will be if the spread is to distant lymph nodes. If only lymph nodes in the pelvis are affected, he could be N0

Just to make things really complicated, the T score is different to other ways of writing cancer results. For example, T4 means that the cancer has come out of the prostate and affected other things nearby, such as the bladder or bowel. Stage 4 cancer (for any kind of cancer) means advanced / incurable. So he could have a stage 4 cancer which is a T3 prostate cancer with bone mets.

With bone and lymph involvement, I would be very surprised if they offered RT as it is usually only given in curative cases although there has been a recent trial where they gave it to men who only had very limited spread. As for chemo, until recently it was only given to men in the very late stages to extend life a bit when other treatments had failed, because chemo doesn't actually cure prostate cancer. However, recent research has shown that it can make hormone treatment work much better for longer so it is increasingly being given soon after diagnosis in advanced cases; definitely worth you asking about it at the appointment. Sadly, it is still not available in all areas of the country but your onco should be willing to discuss it with you; there are some existing medical conditions that might make it not such a good idea for some people. 

Edited by member 20 Jan 2019 at 01:29  | Reason: Not specified

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

User
Posted 20 Jan 2019 at 05:38

Hi Deb,

Sorry to hear your unfortunate news. Did your husband ever have a PSA test prior to the one last year?

Best of luck for the future.

Cheers, John.

Edited by member 20 Jan 2019 at 05:39  | Reason: Not specified

User
Posted 20 Jan 2019 at 08:20
Hi Deb

I was diagnosed T4 in August so a few months ahead of you on this unenviable journey.

I've completed 6 chemo sessions then I'm going on holiday

When I get back I'm having 20 Radiotherapy sessions to try and keep this beast of a disease at bay.

John

User
Posted 20 Jan 2019 at 09:24
Sorry Deblc / lyn the Nx was meant to indicate it's not likely to be N0.

Key point is you need the full staging and to try and understand the options. I have only been on this forum 2 years and the the options for T3/4 have changed several times in that period.

Hope it's good news when you see the onco again.

User
Posted 20 Jan 2019 at 09:34

Thank you all for your replies and help.

John - He had his first PSA test done at the GP surgery on Friday 30th Nov and the doctor phoned that afternoon for him to go back and see him on Monday 3rd Dec. His PSA was 88. When he saw the urologist two weeks later his PSA was 90.5. He had never had a test before and only had one because I had noticed that he was going to the loo a bit more during the night. No other symptons. Although looking back on it now he had complained a little of hip pain on occasions after running.

His Gleason score is 9 (4+5) . I did ask the consultant what T stage he was but she didnt give a number as such and I really can't remember her reply as obviously we were still in shock. My husband didn't really take anything in as he was so upset. I think that she said that the lymph nodes spread is in the stomach area and she did show me the scans of the bone spread (my husband didn't want to look). There were a number of dark spots on both sides of the pelvis and some in the right clavicle. She didn't mention any spread to other organs.

Thank you for your good wishes. I still can't believe I am writing this as it has all happened so quickly and my husband seems ok (physically). We are trying to stay positive and we are going to do our best to not let this bugger beat us! 

User
Posted 20 Jan 2019 at 10:04

He has T3 or T4; he'll almost certainly be offered chemotherapy, with radiotherapy a possibility, as there's evidence that some metastases respond to treatment of the primary tumor.

Radiotherapy to bony metastases is also a possibility, depending on whether it could be of benefit (eg pain).

Good luck!

User
Posted 20 Jan 2019 at 11:55
Sorry you find yourself here. As others have said there are many treatments available. Read the profiles of men with similar dx and you will see that it is possible to get on with life but living your new normal

From what you have explained it shoulds like he is T4 N1 M1 as the cancer has spread to lymph nodes and other parts of the body

Take care and good luck with the treatment

Bri

User
Posted 20 Jan 2019 at 11:58

I don’t know if this will help, but my husband was diagnosed in December 2010 with a G 10 (5+5) and spread to lymph and bones. He was 61 at the time and we were terrified. It is only now that things have become very difficult for us. At the time i prayed to a deity i didn't really believe in and begged for four years and we have had eight so far. Its not all been plain sailing but we have seen our daughters married and have had the incredible delight of a granddaughter, now four, with a new grandson due this coming week. If you had told me this eight years ago i would have taken this and thought it to be wonderful, and I do now. We have been so lucky, given the Gleason score. There is hope, especially as the treatment regime has improved in the eight years and new drugs are available that were not when this began for us. Someone told us the key is to survive long enough for the new drugs to come along, good advice!

I wish you well and tell you this to give you some hope, I didn't have much to begin with as i couldn't find many G10s who had survived all that long at the time but things are changing.

Good luck, let us know how you get on. We will supoort you along thw way.

love Devonmaid xxx

User
Posted 21 Jan 2019 at 06:23

Hello from the West Coast of the USA.  I was initially diagnosed at age 65 about 5 years ago as very metastatic with lots of mets to many bones and lymph nodes.  My bone scan lighted up like a Christmas Tree, and my PSA was a ridiculously high 5,006.  The systemic treatment with a simple injection to greatly lower Testosterone levels worked very well for me.  My bone pains went away and my PSA dropped to as low as 1.0 within several months.  I was also given a drug to help keep my bones stronger during treatment (in my case Zometa (zolendronic acid), but it also could have been Xgeva (denosumab)).

Were I treated today, I probably would have been prescribed the same, but perhaps with either early Chemo (docetaxel) or early Zytiga (abiraterone acetate + prednisone), per the more recent results of Clinical Trials that were reported in recent years in the USA and the UK.

The most significant change (other than the pain reduction) was the slow impact of living in a body with a greatly reduced level of Testosterone.  I got frequent hot flushes (aka flashes in some parts of the world), a loss of sex drive and desire, some weight gain, and a slow lowering of overall energy and peak strength.  Other slow changes involved less frequent erections, a slow shortening of penis size and testicle size, and slow changes to external secondary sexual characteristics of an adult male.  Hair on my knuckles and toes slowly went away, along with chest hair, most pubic and groin hair, and chest hair, and underarm hair.  My skin also stopped being so oily  (and I stopped smelling so much like an old billy goat - Ha. Ha).   

The initial treatment work very well for me, for nearly 2 years.  During the 3rd year with other consultations/treatments, my PSA eventually went back up again to as high as 95.0.   I added the androgen blocker Xtandi (enzalutamide) about 26 months ago.  PSA went back down to 1.2, and now, a little over 5 years since original diagnosis is trending upwards again, but still only at 3.1.  

I have been very lucky with some biological responses to treatment, so far.  My overall quality of life has also been improved by my and my spouse's attending some face-to-face prostate cancer support groups, and some general cancer support groups for advance cancer people and their spouses/caregivers.  

For me, about 1/2 of the stress and difficulties, especially during the 1st year after the "incurable Stage IV" diagnosis were mental and emotional, and about 1/2 were in the medical/technical details.  

A balanced life, lived mostly in the Present Moment, seems better for me than brooding over the past, or being overly anxious about the future.

Just some thoughts...

Charles

 

 

Edited by member 21 Jan 2019 at 06:30  | Reason: typo

User
Posted 21 Jan 2019 at 10:34

Excellent, encouraging post Charles

(from a grey, cold South Yorkshire)

Bri

User
Posted 21 Jan 2019 at 14:08

My husband had his appointment with the oncologist this morning. Chemotherapy in next couple of weeks alongside hormone treatment. To be followed by a course of radiotherapy. They did a blood test on Thursday checking for possible sarcoidosis as enlarged lymph nodes in chest area. That came back as negative which means it is the cancer that is there. 

He had a bit of an emotional breakdown last night and we obviously found our first encounter with the cancer centre very difficult this morning.Not a great day! 😞

 

User
Posted 21 Jan 2019 at 14:57

I completely understand, we have our first appointment with oncology tomorrow. At least yours are moving quickly, we haven't seen any consultant for 3 months!!

We're you encouraged by the plan at all? I guess it's a lot to take in in a short amount of time.

Some encouraging stories above

 

User
Posted 21 Jan 2019 at 16:15

My thoughts are with you Gemma.

I think they are moving quickly because of the spread to lymph nodes and bones. The consultant said that early intervention with chemo can help at this stage. We will take anything at the moment that will weaken this monster!

Obviously we are really upset about the whole situation and scared about what the coming months will bring in the way of side effects. Saying that, we are determined that it is not going to define our lives and we are going to not let it break us down.

 

User
Posted 21 Jan 2019 at 16:40

Thank you

I would recommend speaking to the nurses on here, they are so kind and knowledgeable so if you have any questions or just someone to listen that could be good for you and/or your husband. They can even arrange for your husband to speak to someone in the same situation who has been there and done that themselves 

Do keep it contact asked it's important to not feel alone

Edited by member 21 Jan 2019 at 16:41  | Reason: Not specified

User
Posted 09 Feb 2019 at 18:55

My husband had his first chemotherapy session on Tuesday. Unfortunately there was a two hour delay so he felt quite anxious whilst waiting and then at the beginning of the process. The nurse was excellent at helping him to relax and he soon settled into it. It helped that I could be with him. He has always been such a strong, rational person but this monster really seems to have got into his head. He has been fine since the treatment on Tuesday, both mentally and physically, and has even managed a four mile run on day 3 (albeit on the treadmill in the garage). 

However, today (day 5) he has felt a little more tired and is aching around the stomach and hip area. He rested this morning, although he is not very good at sitting still, and we took the dog for a short walk this afternoon. He said that moving around actually helps to minimise the aches. Has anybody else found this? Is there anybody on here who has come out of their six sessions of chemotherapy relatively unscathed or are we being 'too positive'? He is also on 2 steroid tablets a day as well as hormone therapy injections. 

The oncologist said that he will probably have a course of radiotherapy just after the chemo finishes. How long are they likely to wait before doing that? He is seeing the oncologist on the 22nd before session 2 on 26th when I presume they may do a PSA and just talk to him about how session 1 went.

I hope you are all getting on ok.

Deb

User
Posted 09 Feb 2019 at 22:54
Hi Deb,

It’s always good to get the first chemo session out of the way. I didn’t really know what to expect but after first session I was a lot happy. As per, chemo affects everyone in different ways. I had my first six sessions two years ago and although had some SE it was generally tiredness after session four/five. It can be tiring but you have to listen to your body. I worked throughout but rested when need be. I found exercise worked but not to over do it, ie I walked the dogs, gardened and jogged a little. Food wise just kept healthy eating but still had red meat,pastas, rice salads but didn’t really go overboard. Walking etc gave my mind a bit of exercise too and chatting about it with OH. So yes you can get through chemo relatively unscathed and by the end of it I actually missed the routine of blood tests, scans and chemo!

GL with treTment.

Steven

User
Posted 10 Feb 2019 at 00:22

Hi Deb

My oh finished his chemo in September, he came through it relatively unscathed...his worst days were 3-7 where he felt tired and had bone pain. He was never sick and didn't suffer with mouth ulcers, think this was because he used the mouth all the time. He also managed to work all the way through, fortunately he could work from home. 

He always had his blood test on a Monday saw cinsulcons on Tuesday and chemo on Wednesday. He's also on hormone injections.

 

5 months down the line everything is good but he dido still get tired.

Hope this helps and your oh comes through aswell as mine.

Regards Karen

User
Posted 20 Feb 2019 at 21:52
Thank you for your support Debbie on my post. I've just had a read through your profile. Wishing you all the best with the chemo. N was alright during it all, just one temperature and we went to a&e for intravenous antibiotics as a precaution. I didn't post anything about the chemo as life pretty much carried on as normal, with perhaps a little more snoozing on occasion. N wasn't able to continue working from quite early in his diagnosis, the fatigue was just too intense but that summer we went away as normal and the February following the end of chemo in October, we went skiing.

Lots of positive stories after docetaxel on here. Radiotherapy following chemo seems to be a new thing, N wasn't offered it as a "course".

I've pulled myself out of the pity pit now, being by myself has its downsides!xx

 
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