I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

12>

Could they have done more?

Email this conversation Print this conversation
User
Posted 10 Jun 2018 at 18:54

Steve ( steve_shawshank on here) was diagnosed with advanced prostate cancer in Dec 2016 and sadly passed away Oct 2017.  8 months on I am still struggling to come to terms with this.  I know it is not healthy and some say wasted energy but I cant shift the thoughts that more could have been done for him.  A brief overview:

Diagnosed Dec 2016 aged 43- advanced PC with bone mets everywhere including skull, which also caused a sub-dural haemotoma, never had a biopsy but would have been classed as 9- 10.  PSA on diagnosis 537. He passed away 2nd Oct 17 (just 9 months later). I am still struggling to come to terms with this and I am questioning whether I could have done more and questioning his treatment. He had upfront docetaxel combined with monthly Zoladex injections. His PSA only got down to 18 it as its lowest and this started to rise again even before last chemo was finished it went to 23 and I was told you can see fluctuations with chemo, so noting more was done and would see Steve again in 3 months.

I still wasn't happy and got him to have a PSA done a month later it had gone up to 50, then the oncologist started to take note and he was put on BICALUTAMIDE. He didn't get on very well wit this,  5-6 weeks later I still wasn't happy and he had started to struggle with his legs and walking. I got another PSA test done and this had jumped to 444. He died a week a later. He was put on prednisolone in the last week for more upcoming chemo but never made it to that. Why did they not try something else like abiraterone ? or changed the hormone therapy.

I see on a lot of other sites lots of people are giving Lupron or flutamide and seem to do better.  Others the new drugs like abiraterone and enzalutamide.  Ithink they could have taken his rise in PSA more seriously and tried something else, maybe he would still be here ?

User
Posted 10 Jun 2018 at 21:30
I’m simply ripped by your loss over such a short period. I’m so sorry for you and my heart goes out to you. Some on here are very knowledgeable and may help explain. There are many types of PCa but most are the normal adenocarcinoma type and controllable for some time , but some are very rapid and progressive and ultimately rapid. I nursed a man in my job recently who went from walking to death in 3 months from PCa which was really hard to deal with given I am G9 myself. It may simply seem you were more unlucky than most but I guess you were there and your consultants tried with what they knew. Sending love and strength and hoping time heals xx

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2018 at 23:56
Emma, it may be that not all of the information is available to you - Steve was a member here for such a short time so there were certain things we never asked him. I hope some of these points will help clarify your thinking:-

- very young men diagnosed with PCa often seem to have a particularly aggressive form which does not respond to any treatment

- spread to the skull seems to have a particularly swift outcome

- he never had a biopsy so there is no way of knowing what type of prostate cancer he had - it has behaved though like one of the rarer types which are so hard to treat

- at the point that Steve was given 'early' chemo, that was still a newish approach and only just out of the trial stage so the onco was apparently on the ball and willing to try things

- it may seem a bit weird that he sent Steve away for 3 months with a rising PSA but PSA rises after chemo are quite common as the cancer cells are objecting to the attack

- Steve had already been told at that point that he was terminally ill so perhaps they had a discussion about introducing abiraterone or enzalutimide that you are not aware of, or perhaps by the time the onco realised this wasn't a normal PSA chemo thing, it was too late

- if it was one of the rare types that do not respond to HT, abiraterone and enza would perhaps have been ineffective

- why was he struggling to walk towards the end? Was that because of lymphodema, spinal cord compression, balance issues (brain mets?) or because he was so weakened / loss of appetite or similar?

I suspect that he was diagnosed so late and with such an aggressive strain, that nothing would have kept him here for more than a few weeks. Data on enza and abiraterone is not great for men diagnosed very late - an estimate of an extra 6 weeks I think. But you need peace of mind and so if the onco is willing to see you, that is probably a very sensible thing to do. If you get the opportunity, you could ask:

- in hindsight, why does he think it was so swift

- does he think that Steve may have had a rare type since it behaved so atypically, and did that influence his treatment decisions

- what was the actual cause of death - you don't usually die from PCa but from either the side effects of treatment, infection or the failure of major organs

I hope that you do find a way to get some of these answers. I tried to see my father-in-law's oncologist after he died because he did not follow a normal pattern at all. However, the onco consistently refused to meet with me and in the end, i had to be satisfied with my husband's onco looking at the stats for me simply in relation to 'was there anything unusual or significant that could impact on his son's outcomes' ... a bit of a round-the-houses way of doing things, and didn't get me all the answers I wanted, but enough to be able to accept I wasn't going to get anything else out of them and needed to move on.

One last thought - there are different kinds of moving on. It is important that you find a way to move on from 'if this happened he might still be here' 'if that happened he might have had longer' because in all honesty, I think they will tell you that Steve did well to be around for 9 months. That is not the same as moving on as in 'forget him and get better and start acting like it never happened and you are really, really happy.' Anyone who expects you to do #2 is an insensitive fool but everyone who cares for you would probably wish for you to get to #1 soon, since that is where peace is to be found.

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

User
Posted 10 Jun 2018 at 21:31
I am so so sad to read of your loss, and of your Steve's death.

As hiker says above, I too firmly believe that any Health Professional involved in your case would have done all that they could and all that was possible to treat Steve's condition and prolong his life.

The issue now, "Your" issue now, is how to come to terms with your loss?

Have you considered counselling, proper counselling? Not via a random forum?

Each and every death as a result of PCa hurts us all.

If you feel strong enough, are angry enough could you ask his Medical Professionals why they did what they did, when they diid it, and were all possible options considered?

Sadly, nothing will bring Steve back. Maybe, the answers will give you comfort to learn that all that could be done was done?

I am saddened for your loss.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Jun 2018 at 08:50
What a beautiful post Janet x

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2018 at 23:06

Emma

i can remember your original post when you shared with us Steve's death.  It was as shocking as it was sad.  There are at least two things we commonly hear about PCa - it's an old man's disease and it kills you slowly.  Sadly, this isn't always correct.  I just can't help but think that Steve was unlucky on both fronts, but lucky to have had you.  

Ulsterman

User
Posted 12 Jun 2018 at 19:52
Hi Emma,

I registered on this site early December '17 and wasn't officially diagnosed until 9th Jan this year.

I read the posts of Steve and yourself and I have to say it is the most heart wrenching story I have read. For this site to have credibility it has to be true to life and reflect the true cross section of PCa sufferers. Therefore your continued contributions are invaluable and I wish the very best for your future!!!

Richard

User
Posted 13 Jun 2018 at 15:59

Originally Posted by: Online Community Member
Hi Emma,

I registered on this site early December '17 and wasn't officially diagnosed until 9th Jan this year.

I read the posts of Steve and yourself and I have to say it is the most heart wrenching story I have read. For this site to have credibility it has to be true to life and reflect the true cross section of PCa sufferers. Therefore your continued contributions are invaluable and I wish the very best for your future!!!
Richard

 

Hi Richard, 

I am sorry to hear of your diagnosis,  I hope that treatment is being kind to you and working ?.   This really is a good site and I know my posts are unfortunately have not on the positive side but as you say a true reflection on everyday life, I do hope that by being on here, I may be able to help and support others in the future.

Take care  Emma x

User
Posted 10 Jun 2018 at 21:12
Hi Emma,

Sorry to read about your loss, from my experience I am sure they would have done everything they could to save a life,

It just may be that nothing could have been done to save your mans life as everything had gone past the point of any chance of helping him.

You must let go now because there are no answers to your questions and you did all you could to try and help prolong his life.

If you do not move on you will drive yourself mad trying to find answers to the questions that have none.

From my experience the Forums can help sometimes but they can also be negative as the writers are ordinary people and not doctors.

I have regrets about my choices of treatment and have searched high and low looking for the best advice and treatments for my problem, possibly I should have gone for the other treatment option just wears me down and so I have to come to terms with it and get on with my life, although it is difficult at times.

Al the best for your future

Rich

User
Posted 10 Jun 2018 at 22:20

Hi Emma,

Steve was doublely unfortunate in not only having PCa but it having it young and found at such a late stage. When the disease reaches that point I think a man is relying much more on what an oncologist feels may be best for the individual but sometimes even an oncologist can be unsure of whether with the benefit of hindsight a different regime and or treatment change/timing might have extended life a little.

You did what you could and you have to accept this. You most probably have many years and it is important that whilst sometimes remembering the happy times you had with Steve you try to avoid his treatment being so much to the front  of your mind and that you make the most of these years ahead of you. I wonder whether you have had professional councelling on this whch could help?.

I don't quite follow the comment by Rich that "From my experience the Forums can help sometimes but hey can also be negative as the writers are ordinary people and not doctors". On the ontrary, my experience is that forums are positive and supportive and it is doctors who are sometimes more negative.and can be lacking in tact and support.

Edited by member 10 Jun 2018 at 22:23  | Reason: Not specified

Barry
User
Posted 11 Jun 2018 at 08:17

Hello Emma,

 

i am so so sorry to read of how you are feeling but have some understanding as I lost my husband, Mike, eight years ago and had many similar thoughts and experiences to you. Although Steve being diagnosed at 43 was so young and so difficult for you, probably especially so when most men are diagnosed at a much older age. 

 

Also since Mike’s diagnosis I have seen many similar diagnoses and progressions, on here and elsewhere, and I have developed my thinking to realising Mike’s cancer was always going to take him quickly no matter what route was taken. Unfortunately, it seems Steve’s was the same. There are many more treatments available now but sadly some cancers are just too fastgrowing and aggressive.

 

i suspect very much that all that could have been done for Steve was done but those niggling thoughts in your mind are so real, and mixed in with grief too. In a similar situation after a few months I spoke to my GP along similar lines. With tears in her eyes she reassured me in our situation that all that could have been done, had been done. Mike had, indeed, lived longer and fought harder than they had expected. She felt some things could have been done differently but the end result would have been the same, give or take a few weeks/months. I found honesty and compassion in her response which helped me. I allowed my mind to accept that if the medical profession couldn’t save Mike, how on earth did I think I could?

 

I was grateful that in the final final stages I had asked Mike’s oncologist about abiraterone, which was just beginning to be used. He had replied that had he thought it could have helped he would have had it. This has helped me enormously over the years and I wonder if there is anyone in Steve’s medical team who could give you similar reassurance. Of course, I realise that asking the questions may bring reassurance but that if it doesn’t you have to deal with the answer. This worried me at the time but quite simply by the time I spoke to my GP my mind couldn’t have been in a worse state so it had to be done. 

 

I hope you can find some peace and can calm your mind, although I know it takes time. I found I had to really look after my own health as the grief, the caring, the adjustment to a ‘new type of normal’ life all took their toll. For me I had regular back and neck massages, reiki, and simply chatted to an excellent compassionate complementary therapist, but we all need to find what works for us. There is help out there but sometimes it isn’t offered, I suspect because we put on a brave public face and people think we are coping.

 

Take care of you, Janet, x 

User
Posted 11 Jun 2018 at 16:44

Originally Posted by: Online Community Member
I’m simply ripped by your loss over such a short period. I’m so sorry for you and my heart goes out to you. Some on here are very knowledgeable and may help explain. There are many types of PCa but most are the normal adenocarcinoma type and controllable for some time , but some are very rapid and progressive and ultimately rapid. I nursed a man in my job recently who went from walking to death in 3 months from PCa which was really hard to deal with given I am G9 myself. It may simply seem you were more unlucky than most but I guess you were there and your consultants tried with what they knew. Sending love and strength and hoping time heals xx

 

Hi Chris, 

Thank you for your comments, I am so sorry to hear of the loss of the man your nursed, this must have been very difficult to watch someone decline and then pass away over such a short space of time, whilst dealing with your own situation.  I hope that you are coping ok and sending you love and strength in your journey.  Emma xx

User
Posted 11 Jun 2018 at 17:04

Hi Janet, 

 

Thank you so much for your post, I will reply privately but at the moment it will not let me do this as apparently I have not participated in enough public posts.  Emma x

User
Posted 12 Jun 2018 at 18:04
Good evening Emma,

Only you will know if the counselling will work for you. Every potential coping mechanism is worth a try. Doesn't work for many.

Two ways of looking at any time critical issue.

Regretting what did not come.

Or, celebrating the time that was enjoyed and lived.

A few people here will mention "acceptance" with regard to their situation. And the subsequent peace that this state can bring. Goodness only knows it can take a while to reach that state, some never achieve it sadly.

I hope you find your acceptance in due course.

Wishing you well.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Jun 2018 at 18:05

Hi Emma,

i cant offer easy answers on how to deal with grief because we are all so different in how we deal with life and death .

i don’t post very much since Trevor passed in Nov but I am know just starting to feel more like me if that makes sense .

we often as you are seeking answers to help you make sense of a terrible situation but sometimes there aren’t easy answers and that would be my advice , let your self accept because acceptance is the way forward .

hope this helps .

Julie 

BFN x

NEVER LAUGH AT A LIVE DRAGON
Show Most Thanked Posts
User
Posted 10 Jun 2018 at 21:12
Hi Emma,

Sorry to read about your loss, from my experience I am sure they would have done everything they could to save a life,

It just may be that nothing could have been done to save your mans life as everything had gone past the point of any chance of helping him.

You must let go now because there are no answers to your questions and you did all you could to try and help prolong his life.

If you do not move on you will drive yourself mad trying to find answers to the questions that have none.

From my experience the Forums can help sometimes but they can also be negative as the writers are ordinary people and not doctors.

I have regrets about my choices of treatment and have searched high and low looking for the best advice and treatments for my problem, possibly I should have gone for the other treatment option just wears me down and so I have to come to terms with it and get on with my life, although it is difficult at times.

Al the best for your future

Rich

User
Posted 10 Jun 2018 at 21:30
I’m simply ripped by your loss over such a short period. I’m so sorry for you and my heart goes out to you. Some on here are very knowledgeable and may help explain. There are many types of PCa but most are the normal adenocarcinoma type and controllable for some time , but some are very rapid and progressive and ultimately rapid. I nursed a man in my job recently who went from walking to death in 3 months from PCa which was really hard to deal with given I am G9 myself. It may simply seem you were more unlucky than most but I guess you were there and your consultants tried with what they knew. Sending love and strength and hoping time heals xx

If life gives you lemons , then make lemonade

User
Posted 10 Jun 2018 at 21:31
I am so so sad to read of your loss, and of your Steve's death.

As hiker says above, I too firmly believe that any Health Professional involved in your case would have done all that they could and all that was possible to treat Steve's condition and prolong his life.

The issue now, "Your" issue now, is how to come to terms with your loss?

Have you considered counselling, proper counselling? Not via a random forum?

Each and every death as a result of PCa hurts us all.

If you feel strong enough, are angry enough could you ask his Medical Professionals why they did what they did, when they diid it, and were all possible options considered?

Sadly, nothing will bring Steve back. Maybe, the answers will give you comfort to learn that all that could be done was done?

I am saddened for your loss.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 10 Jun 2018 at 22:20

Hi Emma,

Steve was doublely unfortunate in not only having PCa but it having it young and found at such a late stage. When the disease reaches that point I think a man is relying much more on what an oncologist feels may be best for the individual but sometimes even an oncologist can be unsure of whether with the benefit of hindsight a different regime and or treatment change/timing might have extended life a little.

You did what you could and you have to accept this. You most probably have many years and it is important that whilst sometimes remembering the happy times you had with Steve you try to avoid his treatment being so much to the front  of your mind and that you make the most of these years ahead of you. I wonder whether you have had professional councelling on this whch could help?.

I don't quite follow the comment by Rich that "From my experience the Forums can help sometimes but hey can also be negative as the writers are ordinary people and not doctors". On the ontrary, my experience is that forums are positive and supportive and it is doctors who are sometimes more negative.and can be lacking in tact and support.

Edited by member 10 Jun 2018 at 22:23  | Reason: Not specified

Barry
User
Posted 11 Jun 2018 at 08:17

Hello Emma,

 

i am so so sorry to read of how you are feeling but have some understanding as I lost my husband, Mike, eight years ago and had many similar thoughts and experiences to you. Although Steve being diagnosed at 43 was so young and so difficult for you, probably especially so when most men are diagnosed at a much older age. 

 

Also since Mike’s diagnosis I have seen many similar diagnoses and progressions, on here and elsewhere, and I have developed my thinking to realising Mike’s cancer was always going to take him quickly no matter what route was taken. Unfortunately, it seems Steve’s was the same. There are many more treatments available now but sadly some cancers are just too fastgrowing and aggressive.

 

i suspect very much that all that could have been done for Steve was done but those niggling thoughts in your mind are so real, and mixed in with grief too. In a similar situation after a few months I spoke to my GP along similar lines. With tears in her eyes she reassured me in our situation that all that could have been done, had been done. Mike had, indeed, lived longer and fought harder than they had expected. She felt some things could have been done differently but the end result would have been the same, give or take a few weeks/months. I found honesty and compassion in her response which helped me. I allowed my mind to accept that if the medical profession couldn’t save Mike, how on earth did I think I could?

 

I was grateful that in the final final stages I had asked Mike’s oncologist about abiraterone, which was just beginning to be used. He had replied that had he thought it could have helped he would have had it. This has helped me enormously over the years and I wonder if there is anyone in Steve’s medical team who could give you similar reassurance. Of course, I realise that asking the questions may bring reassurance but that if it doesn’t you have to deal with the answer. This worried me at the time but quite simply by the time I spoke to my GP my mind couldn’t have been in a worse state so it had to be done. 

 

I hope you can find some peace and can calm your mind, although I know it takes time. I found I had to really look after my own health as the grief, the caring, the adjustment to a ‘new type of normal’ life all took their toll. For me I had regular back and neck massages, reiki, and simply chatted to an excellent compassionate complementary therapist, but we all need to find what works for us. There is help out there but sometimes it isn’t offered, I suspect because we put on a brave public face and people think we are coping.

 

Take care of you, Janet, x 

User
Posted 11 Jun 2018 at 08:50
What a beautiful post Janet x

If life gives you lemons , then make lemonade

User
Posted 11 Jun 2018 at 14:33

Originally Posted by: Online Community Member
Hi Emma,
Sorry to read about your loss, from my experience I am sure they would have done everything they could to save a life,
It just may be that nothing could have been done to save your mans life as everything had gone past the point of any chance of helping him.
You must let go now because there are no answers to your questions and you did all you could to try and help prolong his life.
If you do not move on you will drive yourself mad trying to find answers to the questions that have none.

From my experience the Forums can help sometimes but they can also be negative as the writers are ordinary people and not doctors.
I have regrets about my choices of treatment and have searched high and low looking for the best advice and treatments for my problem, possibly I should have gone for the other treatment option just wears me down and so I have to come to terms with it and get on with my life, although it is difficult at times.

Al the best for your future
Rich

 

 

Thank you Rich, I just can't shift this niggling doubts, its probably because I am trying to hold on, not wanting to let go.  You are probably right, there is no answers to my questions because even if treatment had been changed or tried something else, we would never know if that would have worked anyway.  I do believe there is some negativity too in the sense of "pull yourself together, nothing can be changed, move on".  If only it was that simple.  Steve and I were together nearly 15 years, from a young woman to a woman, and I feel like my whole world has been ripped away from me, he was my life.  

I am sorry to hear that you feel regret with some of the decisions that you have made and that must be difficult to cope with, but I am glad to hear that you have in some ways come to terms with that, you have such strength to not let it eat you up and I have no doubt there are difficult days, I do hope you have a good support network around you. You can only take each day as it comes and there is nothing wrong in having difficult or down days.  I almost feel selfish for my post, when there is so many men on here actually having to deal with prostate cancer.

I wish you all the best.  Emma x

User
Posted 11 Jun 2018 at 16:44

Originally Posted by: Online Community Member
I’m simply ripped by your loss over such a short period. I’m so sorry for you and my heart goes out to you. Some on here are very knowledgeable and may help explain. There are many types of PCa but most are the normal adenocarcinoma type and controllable for some time , but some are very rapid and progressive and ultimately rapid. I nursed a man in my job recently who went from walking to death in 3 months from PCa which was really hard to deal with given I am G9 myself. It may simply seem you were more unlucky than most but I guess you were there and your consultants tried with what they knew. Sending love and strength and hoping time heals xx

 

Hi Chris, 

Thank you for your comments, I am so sorry to hear of the loss of the man your nursed, this must have been very difficult to watch someone decline and then pass away over such a short space of time, whilst dealing with your own situation.  I hope that you are coping ok and sending you love and strength in your journey.  Emma xx

User
Posted 11 Jun 2018 at 16:50

Originally Posted by: Online Community Member
I am so so sad to read of your loss, and of your Steve's death.

As hiker says above, I too firmly believe that any Health Professional involved in your case would have done all that they could and all that was possible to treat Steve's condition and prolong his life.

The issue now, "Your" issue now, is how to come to terms with your loss?

Have you considered counselling, proper counselling? Not via a random forum?

Each and every death as a result of PCa hurts us all.

If you feel strong enough, are angry enough could you ask his Medical Professionals why they did what they did, when they diid it, and were all possible options considered?

Sadly, nothing will bring Steve back. Maybe, the answers will give you comfort to learn that all that could be done was done?

I am saddened for your loss.

dave

 

Hi Dave, 

Yes I am having counselling, although I am not sure it is helping much but will continue with it.  I am sorry if I have caused more upset to anyone with what I have posted on the loss of Steve, I just wanted to really see what other people's treatment has been.  I understand a PCa death would hit others hard too and I do not mean to bring sadness upon others.  I hope I can be of some support to others too in anyway I can.  

I have spoken with his CNS twice, but I still have a few unanswered questions which I think I will put to the oncologist.  Unfortunately nothing will bring Steve back, I just want piece of mind on the choices they made with regards to treatment, hopefully this will bring me some closure.  

Emma x

User
Posted 11 Jun 2018 at 16:56

Originally Posted by: Online Community Member

Hi Emma,

Steve was doublely unfortunate in not only having PCa but it having it young and found at such a late stage. When the disease reaches that point I think a man is relying much more on what an oncologist feels may be best for the individual but sometimes even an oncologist can be unsure of whether with the benefit of hindsight a different regime and or treatment change/timing might have extended life a little.

You did what you could and you have to accept this. You most probably have many years and it is important that whilst sometimes remembering the happy times you had with Steve you try to avoid his treatment being so much to the front  of your mind and that you make the most of these years ahead of you. I wonder whether you have had professional councelling on this whch could help?.

I don't quite follow the comment by Rich that "From my experience the Forums can help sometimes but hey can also be negative as the writers are ordinary people and not doctors". On the ontrary, my experience is that forums are positive and supportive and it is doctors who are sometimes more negative.and can be lacking in tact and support.

 

Hi Barry, 

I know everyone is right in what they say, we will never know if another treatment had worked whether this would have been any better and this is something I am going to have to learn to accept.  I am havign counselling and although I don't feel it is helping, I will continue to see how it goes. 

I think forums can be helpful but I do agree with Rich, I have had comments on other sites that have been quite blunt, as in "nothing is going to change, move on and embrace life" and although I think people mean well, it can be a little upsetting as if it was that easy. 

Many thanks for your response an I wish you well, Emma xx 

User
Posted 11 Jun 2018 at 17:04

Hi Janet, 

 

Thank you so much for your post, I will reply privately but at the moment it will not let me do this as apparently I have not participated in enough public posts.  Emma x

User
Posted 11 Jun 2018 at 22:15

Hello Emma,

I was so saddened by your original post about Steve. This disease is dreadful to men of any age, but to be diagnosed and to succumb to it at such an early age is doubly awful.

I am not sure that I can add anything to the advice already given above, but I wanted you to know that I was deeply moved by your loss.

You have my heartfelt sympathy.

Peter

User
Posted 11 Jun 2018 at 23:06

Emma

i can remember your original post when you shared with us Steve's death.  It was as shocking as it was sad.  There are at least two things we commonly hear about PCa - it's an old man's disease and it kills you slowly.  Sadly, this isn't always correct.  I just can't help but think that Steve was unlucky on both fronts, but lucky to have had you.  

Ulsterman

User
Posted 11 Jun 2018 at 23:56
Emma, it may be that not all of the information is available to you - Steve was a member here for such a short time so there were certain things we never asked him. I hope some of these points will help clarify your thinking:-

- very young men diagnosed with PCa often seem to have a particularly aggressive form which does not respond to any treatment

- spread to the skull seems to have a particularly swift outcome

- he never had a biopsy so there is no way of knowing what type of prostate cancer he had - it has behaved though like one of the rarer types which are so hard to treat

- at the point that Steve was given 'early' chemo, that was still a newish approach and only just out of the trial stage so the onco was apparently on the ball and willing to try things

- it may seem a bit weird that he sent Steve away for 3 months with a rising PSA but PSA rises after chemo are quite common as the cancer cells are objecting to the attack

- Steve had already been told at that point that he was terminally ill so perhaps they had a discussion about introducing abiraterone or enzalutimide that you are not aware of, or perhaps by the time the onco realised this wasn't a normal PSA chemo thing, it was too late

- if it was one of the rare types that do not respond to HT, abiraterone and enza would perhaps have been ineffective

- why was he struggling to walk towards the end? Was that because of lymphodema, spinal cord compression, balance issues (brain mets?) or because he was so weakened / loss of appetite or similar?

I suspect that he was diagnosed so late and with such an aggressive strain, that nothing would have kept him here for more than a few weeks. Data on enza and abiraterone is not great for men diagnosed very late - an estimate of an extra 6 weeks I think. But you need peace of mind and so if the onco is willing to see you, that is probably a very sensible thing to do. If you get the opportunity, you could ask:

- in hindsight, why does he think it was so swift

- does he think that Steve may have had a rare type since it behaved so atypically, and did that influence his treatment decisions

- what was the actual cause of death - you don't usually die from PCa but from either the side effects of treatment, infection or the failure of major organs

I hope that you do find a way to get some of these answers. I tried to see my father-in-law's oncologist after he died because he did not follow a normal pattern at all. However, the onco consistently refused to meet with me and in the end, i had to be satisfied with my husband's onco looking at the stats for me simply in relation to 'was there anything unusual or significant that could impact on his son's outcomes' ... a bit of a round-the-houses way of doing things, and didn't get me all the answers I wanted, but enough to be able to accept I wasn't going to get anything else out of them and needed to move on.

One last thought - there are different kinds of moving on. It is important that you find a way to move on from 'if this happened he might still be here' 'if that happened he might have had longer' because in all honesty, I think they will tell you that Steve did well to be around for 9 months. That is not the same as moving on as in 'forget him and get better and start acting like it never happened and you are really, really happy.' Anyone who expects you to do #2 is an insensitive fool but everyone who cares for you would probably wish for you to get to #1 soon, since that is where peace is to be found.

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

User
Posted 12 Jun 2018 at 18:04
Good evening Emma,

Only you will know if the counselling will work for you. Every potential coping mechanism is worth a try. Doesn't work for many.

Two ways of looking at any time critical issue.

Regretting what did not come.

Or, celebrating the time that was enjoyed and lived.

A few people here will mention "acceptance" with regard to their situation. And the subsequent peace that this state can bring. Goodness only knows it can take a while to reach that state, some never achieve it sadly.

I hope you find your acceptance in due course.

Wishing you well.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 12 Jun 2018 at 18:05

Hi Emma,

i cant offer easy answers on how to deal with grief because we are all so different in how we deal with life and death .

i don’t post very much since Trevor passed in Nov but I am know just starting to feel more like me if that makes sense .

we often as you are seeking answers to help you make sense of a terrible situation but sometimes there aren’t easy answers and that would be my advice , let your self accept because acceptance is the way forward .

hope this helps .

Julie 

BFN x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2018 at 19:52
Hi Emma,

I registered on this site early December '17 and wasn't officially diagnosed until 9th Jan this year.

I read the posts of Steve and yourself and I have to say it is the most heart wrenching story I have read. For this site to have credibility it has to be true to life and reflect the true cross section of PCa sufferers. Therefore your continued contributions are invaluable and I wish the very best for your future!!!

Richard

User
Posted 13 Jun 2018 at 15:46

Hi Julie, 

 

Thank you for your words. I am very sorry for your loss.  I have just read your history on your page, WOW, I was so taken back, the journey you and Trevor went through is horrendous, you are one strong lady.  I almost feel guilty writing what I have, when I know there are so many more people out there having suffered worse and are suffering.  I am glad to hear that you are starting to feel a little bit more like yourself again that is really nice to hear and I hope you continue on the path of recovery. 

I know I am probably looking for answers I cannot find, and I will at some point have to learn to accept what has happened, I may never get there but I sure will try. 

Take care of yourself

 

Emma xx 

User
Posted 13 Jun 2018 at 15:52

Originally Posted by: Online Community Member
Good evening Emma,

Only you will know if the counselling will work for you. Every potential coping mechanism is worth a try. Doesn't work for many.

Two ways of looking at any time critical issue.

Regretting what did not come.

Or, celebrating the time that was enjoyed and lived.

A few people here will mention "acceptance" with regard to their situation. And the subsequent peace that this state can bring. Goodness only knows it can take a while to reach that state, some never achieve it sadly.

I hope you find your acceptance in due course.

Wishing you well.

dave

 

Hi Dave, 

 

Thank you for your kind words.  Yes your right, I will always give things a try and I hope that this will in some way help.  Your right in looking at any critical situation and in time I will look back on the time I did have with Steve and celebrate but for now it is just too painful. 

Yes it is going to take me a long time I think to accept what has happened, there are still a few hurdles and ongoing stuff in regards to Steve's passing that needs to be addressed and then hopefully I can start to look forwards.  I am not keen on the saying "moving on" as I feel like that then Steve never existed, so I choose to use moving forward and one day I hopefully will get there.  

I wish you all the best, Emma x

 
Forum Jump  
12>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK