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User
Posted 17 Jul 2014 at 17:32

Hi three weeks ago my dad had a enlarged prostate.He went to doctors whom was cincerned and sent him to hospital.While there he thought he was just going to have a examination and chat.They did examine him and said it was very large and probableg cancer.They did as psa test and tried to do a biopsy with sedation but it hurt too much they didnt try again.Two days later he was due to go back for a reattempt of biopsy but was told your not having one today as the consultant wants to talk to you about medication.When he arrived he was giving a macmillan cancer advice pack and told hes psa was800? Hope i got that right! Hes been put on a tablet each day and injection every three weeks.The consultant said he has cancer and because of symptoms possibly advanced. I cant understand that when he hasent had any other tests.The consultant sent him away with a letter to Doctor with Advanced Prostate Caner....I cant get my head around that.Two days later he was sent an appoinyment for Bine scan last Tuesday then MR scan Wednesday.Hes been giving a date of 23 July to go back.Guess that must be for results? Yesterday he got a phone call saying he needs to go in Next Monday 21st for Biopsy. Im wondering if its because nothing has been found on bone and mr scan? Or are they just getting all tests done.Im coming here for advice simply because im worried and dont want to show my mum and dad that..As weve all agreed positive minds until test results.Thanks for reading


Nicola

User
Posted 17 Jul 2014 at 19:58
Hi Nicola

Firstly welcome to the forum, it a great place to find information and support, although non of us wish we were here, your last statement regarding being positive is a good start. The biopsy will be required to complete the picture, and will tell how aggressive it may be, this will be stated by two numbers 3+3, 4+3 etc and when added together will give the Gleason score, the higher the figure the more aggressive, the staging will be signified by a T followed by a number and letter, the spread if any will be shown as N? for lymph node involvement, and M for bone involvement and both will be followed by a number, a zero being no involvement, mine was classed as PSA 94.4 T3b N0 M0 which means locally advanced but no spread. Once you have all these you will have a better idea where your father is, and what treatments are available. It would be a good idea to get the toolkit which is free from this site and maybe call the nurses on here who will try to answer your questions, the hormones will be to bring down the PSA. and starve the cells of testosterone which do have side effects for some, but vary in degree from person to person. The time between tests and results are the worst time, but as you say stay positive and follow up all results and appointments and either take notes or as I do record what is being said as at this time it's easy to mistake what is being said at the time as emotions often can cause confusion.

All the best

Roy
User
Posted 17 Jul 2014 at 20:09
Hello Nicola. I totally agree with Roy's advice about obtaining "The Toolkit" which I available from this site.

At the top of this page there is a band and one of the tabs says INFORMATION. Click on that and on the left hand side at the bottom it says "Publications"

The Toolkit is a set of pamphlets which describe signs and symptoms and possible treatments.

When your dad goes for his visit, it is important that somebody goes with him. There is so much to take in. Take a notebook (it is quite normal - you will not look odd in any way) and write down answers.

Also it's a good idea to write out a list of questions.

Good luck.

Best Wishes Sandra
We can't control the winds - but we can adjust our sails
User
Posted 18 Jul 2014 at 07:58
Hi Nicola,

This stage is very difficult as there is so much uncertainty as tests are done and results analysed. Make sure, as others have said, careful notes are taken so that where they are not clearly understood, they can be interpreted here. There is a lot of knowledge on this site. Whilst the PSA is high if it is 800 the medics appear to have reacted quickly starting tablets to avoid what is called tumour flare and injections for hormone therapy. You should see the PSA come down in due course. The first issue to resolve is the gleeson score and staging. If there is no spread to either lymph nodes or bones then it is curable hopefully. If there is spread,then though incurable there are lots of treatments to slow down progression. I am in the incurable camp with bone met spread but still here on hormone therapy two and a half years on! So there is always some hope no matter where your Dad is. Keep coming back for support and help. Good luck.
User
Posted 18 Jul 2014 at 11:37

Hi Nicola,


Without doubt the first initial few weeks waiting for results etc are very tough, we have all been there so understand the worry and mix of emotions that you and your family are going through.


This is a great site for practical and emotional support, it sounds as if your Dad has a good Dr behind him getting him onto a treatment path straight away. 


Yes his PSA is high but until you get the results of the bone and MRI scan you won't know the full picture. My OH had a starting PSA of 13000 with spread to bones and lymph nodes, he is still here 14mths on and PSA has dropped to 15.2. For us there is no cure but as you can see from Yorkhull's post he is now 2 and half years on and still working and enjoying life.


Try and stay as strong as you can, we are all here to offer support when you need it. Getting the tool kit from this site is very helpful . (It will be posted to you after you apply for it).


Also for some one to be with your Dad and take notes when he has his results is such good advice it is amazing how blank your mind goes under stressful situations as Yorkhull says anything that you did not understand on the day then someone on here will be able to tell you.


Good luck for results 


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jul 2014 at 21:37
Hi Nicola

As you say the reduction in PSA is good news as it shows the hormones are having an effect, but the spread to the bones and lymph glands do suggest its aggressive, but many on here have had higher PSA and more spread and gone for many years so don't despair, the hormones are to put the cancer to sleep, hopefully for many years. You don't say how old your father is, but it sounds as if he is one of the old school, and does not question things, so it may be good if he will allow you to ask questions on his behalf and attend meetings with him,. so you can relay what is being said.

Roy
User
Posted 23 Jul 2014 at 22:50

Hi Nicola,


So, not so good news with spread to bones and lymph nodes but and this is a big BUT your Dad has responded very well with the Hormone treatment so far his PSA has nearly halved and that is very positive. He is not in the cure camp but and again a big BUT many men have lived for many years with spread to bones . The Hormone injections he will be having can also help to shrink tumours in the bones. There are many new drugs being developed all the time. 


You say that your Mum and Dad don't have alarm bells ringing this can be for several reasons, they may be trying to protect you or could just be there way of dealing with the situation. Also sometimes the medical jargon can just be very confusing.  Some people my OH included do not like to know too much information, he finds it too hard to deal with.


When and if your Dad has his biopsy , I say if because my OH did not have a biopsy, the biopsy will give a gleason score, have you sent for the tool kit yet because this will explain everything for you and help you understand staging and treatments plus lots of  helpful advice.


If you feel it helps you Nicola then keep posting , we are a friendly bunch.


BFN


Julie X


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jul 2014 at 08:34
Hi. Nicola
As others have said this is not the best news, but with a starting PSA so high it was probably inevitable that spread had occurred. My own husband had similar spread, including the spine, with a PSA of 25. That was well over 3.5 years ago and he has a Gleason score of 10' which makes his current progress seem almost miraculous. The important thing to remember is that the HT can and does generally work to bring down the PSA and stop the cancer from growing for a period of time! even when that changes! the medics can add other drugs to keep it at bay. We have had Zoladex (the 12 weekly implant), Casodex and Stillbestrill and we still have chemo and Abiraterone or enzalutimide to go, amongst others. I'm saying this to let you know that good times can still be had.

One matter that might be helpful is to ask if you dad got a specialist nurse appointed? We didn't understand our urologist, well he just said more or less what was said to your dad. But we had a later appointment with the nurse who showed us the scans and explained the scores on the doors, she was very helpful in those first weeks and she was much more approachable than the doctor.

The other thing is to ask your dad to get referred to MacMillan (the GP can do this). This will be helpful to him and your mum if they need any support or need to apply for PIP or AA. These are the benefits payable to those who have a diagnosis of cancer that is incurable, as long as you qualify. In our case our doctor gave us a DS1500 form which autiamatically qualifies you. This scary form says that in the doctor's opinion you may have six months or less to live. Don't be alarmed at this because what it really means is that you have a cancer diagnosis which is incurable and if you did pass away from that in the next six months, it would not be classed as an unexpected death. I can say categorically that this form is very hard to ask for but it very helpful when it comes to these non means tested benefits and it helps you get a blue badge. In our case we have had two DS1500s now as they last for three years. The blue badge is enormously helpful as my hubby needs space to get in and out of the car due to his back and hip mets. Anyway, this is some of the stuff that MacMillan can help with. I'm sorry if this seems bleak, it's meant to be helpful and give you an insight into how you can be helped to live with this disease and reduce the money worries it may bring.

Apologies for the long response, please contact me by email if you want to know more.

With kindest regards
Allison
User
Posted 08 Aug 2014 at 23:37
Hi Nicola,
is your dad in a trade union? If so it is important that he involves them now before he makes any decisions or has any more meetings with his bosses or occupational health service. If he isn't in a union, now is the time to join. He needs some very good & reliable legal and financial advice before he decides about early retirement etc - if he is working for the local authority there is a possibility that he would get more money by persuading them to give him ill-health retirement (rather than early retirement) or even voluntary redundancy if it is available (which it is in most councils). The other thing to consider - and I am sorry to be blunt - is that if his diagnosis becomes terminal, he may be better staying employed if at all possible, because most councils pay 5 x annual salary as a 'death in service' benefit which would perhaps mean the difference between your mum being financially secure or being on the breadline with a widow's pension.

Lots of things for him to think about and far too complicated to try to work through on his own; in my experience, this is something the unions tend to be fantastic at dealing with.

PS it was only in the old days that a cancer diagnosis led to benefits - these days it is rather complicated and depends on things like whether your mum is his full time carer. People can claim some benefits if their oncologist says they have less than 6 months to live.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2014 at 16:20

If he works for local authority he needs to speak to human resources and take union rep-thats what he pays union for!!!!   The local authority has a duty of care and saying there are no light duties is NOT acceptable.  This applies to other employers as well so he needs support from union.  Good luck with it all and let us know what happens. 

User
Posted 01 Sep 2014 at 17:09
Hi Nicola. I completely understand where you are coming from. My Dad was diagnosed with Advanced PCa in Jan 2013. His has spread to his bones in a number of places throughout his abdomen. I feel that my parents also do not ask questions but I also understand that in the early days since diagnosis it is a lot to take in. My dad was put onto Zoladex by way of a 3 monthly injection which got his PSA level down. It has since started to rise and last week he was also put on to Casodex, so fingers crossed that PSA will go down again. When you read up on all of the treatments, there are the possibilities of many side effects, some not so nice, however, he has had a few hot flushes but in general has been very lucky so hopefully your Dad will be too. It's hard isn't it when you want to be brave and positive for your parents and not let them see how you are feeling yourself. Keep us informed as to how he gets on (and you). I am certainly no medical expert and don't understand a lot of the jargon but I do know how you feel from a daughter's perspective. Take care. Rachel
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User
Posted 17 Jul 2014 at 19:58
Hi Nicola

Firstly welcome to the forum, it a great place to find information and support, although non of us wish we were here, your last statement regarding being positive is a good start. The biopsy will be required to complete the picture, and will tell how aggressive it may be, this will be stated by two numbers 3+3, 4+3 etc and when added together will give the Gleason score, the higher the figure the more aggressive, the staging will be signified by a T followed by a number and letter, the spread if any will be shown as N? for lymph node involvement, and M for bone involvement and both will be followed by a number, a zero being no involvement, mine was classed as PSA 94.4 T3b N0 M0 which means locally advanced but no spread. Once you have all these you will have a better idea where your father is, and what treatments are available. It would be a good idea to get the toolkit which is free from this site and maybe call the nurses on here who will try to answer your questions, the hormones will be to bring down the PSA. and starve the cells of testosterone which do have side effects for some, but vary in degree from person to person. The time between tests and results are the worst time, but as you say stay positive and follow up all results and appointments and either take notes or as I do record what is being said as at this time it's easy to mistake what is being said at the time as emotions often can cause confusion.

All the best

Roy
User
Posted 17 Jul 2014 at 20:09
Hello Nicola. I totally agree with Roy's advice about obtaining "The Toolkit" which I available from this site.

At the top of this page there is a band and one of the tabs says INFORMATION. Click on that and on the left hand side at the bottom it says "Publications"

The Toolkit is a set of pamphlets which describe signs and symptoms and possible treatments.

When your dad goes for his visit, it is important that somebody goes with him. There is so much to take in. Take a notebook (it is quite normal - you will not look odd in any way) and write down answers.

Also it's a good idea to write out a list of questions.

Good luck.

Best Wishes Sandra
We can't control the winds - but we can adjust our sails
User
Posted 18 Jul 2014 at 07:58
Hi Nicola,

This stage is very difficult as there is so much uncertainty as tests are done and results analysed. Make sure, as others have said, careful notes are taken so that where they are not clearly understood, they can be interpreted here. There is a lot of knowledge on this site. Whilst the PSA is high if it is 800 the medics appear to have reacted quickly starting tablets to avoid what is called tumour flare and injections for hormone therapy. You should see the PSA come down in due course. The first issue to resolve is the gleeson score and staging. If there is no spread to either lymph nodes or bones then it is curable hopefully. If there is spread,then though incurable there are lots of treatments to slow down progression. I am in the incurable camp with bone met spread but still here on hormone therapy two and a half years on! So there is always some hope no matter where your Dad is. Keep coming back for support and help. Good luck.
User
Posted 18 Jul 2014 at 11:37

Hi Nicola,


Without doubt the first initial few weeks waiting for results etc are very tough, we have all been there so understand the worry and mix of emotions that you and your family are going through.


This is a great site for practical and emotional support, it sounds as if your Dad has a good Dr behind him getting him onto a treatment path straight away. 


Yes his PSA is high but until you get the results of the bone and MRI scan you won't know the full picture. My OH had a starting PSA of 13000 with spread to bones and lymph nodes, he is still here 14mths on and PSA has dropped to 15.2. For us there is no cure but as you can see from Yorkhull's post he is now 2 and half years on and still working and enjoying life.


Try and stay as strong as you can, we are all here to offer support when you need it. Getting the tool kit from this site is very helpful . (It will be posted to you after you apply for it).


Also for some one to be with your Dad and take notes when he has his results is such good advice it is amazing how blank your mind goes under stressful situations as Yorkhull says anything that you did not understand on the day then someone on here will be able to tell you.


Good luck for results 


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Jul 2014 at 19:16
I would like to say a very big thankyou to all who hace replyed to my post.Suck great advice.thankyou all.Ive mentioned a few things to my mum whom has passed over to my dad.So with Biopsy Monday and possible scan results for Tuesday my fingers crossed for him.So sad to read from you all with suffering from this.It sure as hell opens yours eyes and makes you realize its a cruel world.Thankyou all.Im sure I will be back for more advice.
Keep well.
Nicola
User
Posted 23 Jul 2014 at 20:43

Hi Everyone i told you i would be back to pick your brains! Im feeling at a loss. My dad was surposed to have hes biopsy Monday 14th July but now not until 4Th August! Now before i begin i would like to say i gave my mum and dad sdvice to record the conversation or write things down...on which they didnt do. My dad went for results of the scans today.The doctor began wiyh im very sorry it has spread to hip and pelvis. Hes been told hes PSA has come down to 450 from being 800 , so thatts good. The Doctor  has said he now can come of the tablets and have injection in stomach once every three months.He has to go back in four months and will do a urine flow test and another PSA test.Now sadly my mum and dad didnt ask many questions so couldnt answer mine.alarm bells dont seem to be ringing for them too much but they are for me. At the end of the conversation my mum said and it has spread to one lymph mode. Bells really ringing now. I asked why they didnt have no more info and they said they couldnt understand the doctor.Ive adviced him to go see hes doctor,in hope he can go through any notes that the hospital may send.


Please advice


Im sorry i cant give much else


Nicola

User
Posted 23 Jul 2014 at 21:37
Hi Nicola

As you say the reduction in PSA is good news as it shows the hormones are having an effect, but the spread to the bones and lymph glands do suggest its aggressive, but many on here have had higher PSA and more spread and gone for many years so don't despair, the hormones are to put the cancer to sleep, hopefully for many years. You don't say how old your father is, but it sounds as if he is one of the old school, and does not question things, so it may be good if he will allow you to ask questions on his behalf and attend meetings with him,. so you can relay what is being said.

Roy
User
Posted 23 Jul 2014 at 22:50

Hi Nicola,


So, not so good news with spread to bones and lymph nodes but and this is a big BUT your Dad has responded very well with the Hormone treatment so far his PSA has nearly halved and that is very positive. He is not in the cure camp but and again a big BUT many men have lived for many years with spread to bones . The Hormone injections he will be having can also help to shrink tumours in the bones. There are many new drugs being developed all the time. 


You say that your Mum and Dad don't have alarm bells ringing this can be for several reasons, they may be trying to protect you or could just be there way of dealing with the situation. Also sometimes the medical jargon can just be very confusing.  Some people my OH included do not like to know too much information, he finds it too hard to deal with.


When and if your Dad has his biopsy , I say if because my OH did not have a biopsy, the biopsy will give a gleason score, have you sent for the tool kit yet because this will explain everything for you and help you understand staging and treatments plus lots of  helpful advice.


If you feel it helps you Nicola then keep posting , we are a friendly bunch.


BFN


Julie X


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jul 2014 at 08:34
Hi. Nicola
As others have said this is not the best news, but with a starting PSA so high it was probably inevitable that spread had occurred. My own husband had similar spread, including the spine, with a PSA of 25. That was well over 3.5 years ago and he has a Gleason score of 10' which makes his current progress seem almost miraculous. The important thing to remember is that the HT can and does generally work to bring down the PSA and stop the cancer from growing for a period of time! even when that changes! the medics can add other drugs to keep it at bay. We have had Zoladex (the 12 weekly implant), Casodex and Stillbestrill and we still have chemo and Abiraterone or enzalutimide to go, amongst others. I'm saying this to let you know that good times can still be had.

One matter that might be helpful is to ask if you dad got a specialist nurse appointed? We didn't understand our urologist, well he just said more or less what was said to your dad. But we had a later appointment with the nurse who showed us the scans and explained the scores on the doors, she was very helpful in those first weeks and she was much more approachable than the doctor.

The other thing is to ask your dad to get referred to MacMillan (the GP can do this). This will be helpful to him and your mum if they need any support or need to apply for PIP or AA. These are the benefits payable to those who have a diagnosis of cancer that is incurable, as long as you qualify. In our case our doctor gave us a DS1500 form which autiamatically qualifies you. This scary form says that in the doctor's opinion you may have six months or less to live. Don't be alarmed at this because what it really means is that you have a cancer diagnosis which is incurable and if you did pass away from that in the next six months, it would not be classed as an unexpected death. I can say categorically that this form is very hard to ask for but it very helpful when it comes to these non means tested benefits and it helps you get a blue badge. In our case we have had two DS1500s now as they last for three years. The blue badge is enormously helpful as my hubby needs space to get in and out of the car due to his back and hip mets. Anyway, this is some of the stuff that MacMillan can help with. I'm sorry if this seems bleak, it's meant to be helpful and give you an insight into how you can be helped to live with this disease and reduce the money worries it may bring.

Apologies for the long response, please contact me by email if you want to know more.

With kindest regards
Allison
User
Posted 05 Aug 2014 at 20:06
Hi all thankyou for uour replys and sorry for delay.Spent time time reading toolkit and leaflets.I have sent these on to my dad whom has been reading and it has made him feel nervous!Roy was asking how old my dad is and he is 63...but a young 63 lol.
Thankyou for all helpful advice.My dad went for biopsy yesterday which he had general anaesthetic for this time as before was too painful for him.Hes been told he will go see a consultant in three weeks so guess that will be for results of biopsy.He visited doctors surgery today whom is worried about hes weight loss and written to the hospital suggesting to find out why? He didnt seem concerned before.My mum seems more on the ball now as to ask more questions next meeting and write things down.As for work well my dads still working at the moment but dont know how long for.Hes a dustman and been complaining for ages its now too much.Im staying postitive even though hes not in the cure camp.
User
Posted 06 Aug 2014 at 15:59

Not sure about this but it may be better to get signed off sick than quit work or he may get voluntary redundancy??  Someone more knowledgeable might help more or you could ask nurses on site for info on finances.

User
Posted 08 Aug 2014 at 21:45
Hi thankyou for the thought with regards to signing of sick.for awhile now my dad has thought about taking a early retirement due to fact job has become harder for him... guess for a long while ges been taking a fair amount of time of sick for not feeling well.Hes works keep calling him in and putting him on a stage watch.basically needing to know in full detail why he hasent been in..then on third strike if they dont think the excuse is good enough then your out! Well he went in with hes diagnoses four weeks ago and yet they sent him to a meeting last week and yet they know all details. So hes currently seeking a way to get out and still get a good pension.something about if he leaves early then obviously pension wont be good? Im unsure if he woukd be entitled to any sick benefits.Because if he leaves work then my mum isnt currently working as he supports her.I think ive read that once your diagnosed with cancer then benefit department class that as disability? My mums only 57 so even if he coukd get help financially then they would expect her to work.All very complicated.sorry for long message
User
Posted 08 Aug 2014 at 23:37
Hi Nicola,
is your dad in a trade union? If so it is important that he involves them now before he makes any decisions or has any more meetings with his bosses or occupational health service. If he isn't in a union, now is the time to join. He needs some very good & reliable legal and financial advice before he decides about early retirement etc - if he is working for the local authority there is a possibility that he would get more money by persuading them to give him ill-health retirement (rather than early retirement) or even voluntary redundancy if it is available (which it is in most councils). The other thing to consider - and I am sorry to be blunt - is that if his diagnosis becomes terminal, he may be better staying employed if at all possible, because most councils pay 5 x annual salary as a 'death in service' benefit which would perhaps mean the difference between your mum being financially secure or being on the breadline with a widow's pension.

Lots of things for him to think about and far too complicated to try to work through on his own; in my experience, this is something the unions tend to be fantastic at dealing with.

PS it was only in the old days that a cancer diagnosis led to benefits - these days it is rather complicated and depends on things like whether your mum is his full time carer. People can claim some benefits if their oncologist says they have less than 6 months to live.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2014 at 15:23
Hi Lyn thanks for all the advice. Yes my dad belongs to the union at hes works and they have apparently emailed him lots of info to read which hes currently still doing.Think hes head is swimming at the moment. As for the meetings with the occupational health service they have sent a report back to the works saying he needs to be put on light duties.But problem being when he sleaks to boss he says there is none! Being a dustman its too much for him anymore and most times he comes home so tired and aches and so on.I think when he gers hes biopsy results things will start falling into place and he will have to decide what the best thing to do.He woukdnt be good to retire as he complains hes bored then arguments and depression! So guess for now he will work.He says its a young mans job and also he feels if he tried to look for another job he hasent got the skills then he says age is against him.So many things to consider
User
Posted 09 Aug 2014 at 16:20

If he works for local authority he needs to speak to human resources and take union rep-thats what he pays union for!!!!   The local authority has a duty of care and saying there are no light duties is NOT acceptable.  This applies to other employers as well so he needs support from union.  Good luck with it all and let us know what happens. 

User
Posted 09 Aug 2014 at 18:56

Hi Nicola,


When my partner was diagnosed it was impossible for him to return to work due to the seriousness and complications of the illness. He worked for the civil service, not much in the way of union support. He was signed off sick by his GP for a year, as far as we were concerned, if the GP felt this was appropriate that over-ruled any potential bully tactics from work. He was paid full wages for six months, then this drops to half pay. He told his employers he fully hoped to return to work but it would depend on the success of the treatments he was having and this could neither be rushed, nor could any medics predict what would happen. Work had to accept this though we knew increasingly he was not likely to be able to go back. Earlier this year, one of our marvellous district nurses, arranged for a specialist worker to apply for Personal Independence Payment for Neil on the grounds his life expectancy was bleak, but you can never predict what is going to happen. So this was all sorted for him and he was also sent a form to apply for a blue badge for disabled parking which he got.


Does your council have a specialist benefits officer who could do all the running around and take the strain off Dad and your family, last thing anyone wants to do is sort forms, etc at a time like this !


Also, I believe if a becomes disabled, the employer has a responsibility to look at other work options so he should not be fobbed off ! I wish you all the best, it is such a worrying time ,


 


Regards, Fiona.

User
Posted 10 Aug 2014 at 16:39

Hi thanks for that,yes i agree he should be getting the support from union rep,as you 

User
Posted 31 Aug 2014 at 17:33
Hello following from my past posts my dads had biopsy and is booked in to see someone this coming Tuesday for results and to obviouslt disscuss things further.He received a letter from consultant a few days ago which is a copy of letter to hes Doctor.Im going to type it to you for opinion as all wording to me is like a different language.Hope you can help.But dont sound good.
Index diagnosis
METASTATIC PROSTATE CANCER
LOWER URINARY TRACT SYMPTOMS
ANDROGEN DEPRIVATION TREATMENT
ASTHMA
CERVICAL SPONDYLOSIS
HYPERTENSION

I wont type it all but enough for you to understand....
I reviewed this man with partner.Hes bine scan dated 8th July has been reported as Metastasis present in the right pubic bone. Left inferior ramus, sacrolilac joint.Hes CT scan abdomen dated 9th July has been reportedpelvic lymphadenopathy,right sided mild hydronephrosis, hydroureter upto ureterovescial junction.Hes serum creatinine dated 21 July is 95 with estimated GFR of 82.
Hes latest PSA dated 21 July is 450.9 which is lower then previous reading of 795 dated 12 th June.Hes just finished a course of Casodex for three weeks and he had first injection of Prostap on 1st July.Since starting hormone treatment his lower urinary tract symptoms have improved.He has been referred to Oncology consultant whom he will see Tuesday 2nd September.He will be seen in four months with flow rate on arrival and postvoid residue,psa,serum creatinine with pissible discharge and further followup under care of Oncology consultant after that.In meantime will continue Prostap every three months.


Well thats it alot i dont under stand and wondered if they will still do hes grading.Im sorry to write all this but thought someone may be able to help.Guess everyone has al different treatments but wonder what else could ve done fkr him.Does it mean theres not much else they can do for him but just try to help prolong life? Thanks for your help
Nicola
User
Posted 31 Aug 2014 at 19:05
Hi Nicola

The letter seems to just reaffirm what you already know, in that the cancer has spread to the pelvic bones, and the lymph nodes in the abdomen. Hormones will starve the cancer of its fuel, which can be seen in your fathers drop in PSA, and it seems the prostate has shrunk to some degree by the reference to his urination improving,also you will still get a staging possibly at the next meeting with the oncologist, and it may be an idea for you to attend if your father will allow it so you can ask questions regarding treatments available and ask if there are any trials he can go on as this will open up access to other drugs and treatments that aren't normally available.

All the best

Roy
User
Posted 31 Aug 2014 at 19:22
Hi Roy thanks for the quick reply.Thats sounds good about the shrinking of tumour.youve given a few answers that i didnt know.Yes im hoping to get down with mum and dad to go to meeting.Many thanks
Nicola
User
Posted 01 Sep 2014 at 17:09
Hi Nicola. I completely understand where you are coming from. My Dad was diagnosed with Advanced PCa in Jan 2013. His has spread to his bones in a number of places throughout his abdomen. I feel that my parents also do not ask questions but I also understand that in the early days since diagnosis it is a lot to take in. My dad was put onto Zoladex by way of a 3 monthly injection which got his PSA level down. It has since started to rise and last week he was also put on to Casodex, so fingers crossed that PSA will go down again. When you read up on all of the treatments, there are the possibilities of many side effects, some not so nice, however, he has had a few hot flushes but in general has been very lucky so hopefully your Dad will be too. It's hard isn't it when you want to be brave and positive for your parents and not let them see how you are feeling yourself. Keep us informed as to how he gets on (and you). I am certainly no medical expert and don't understand a lot of the jargon but I do know how you feel from a daughter's perspective. Take care. Rachel
 
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