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Dad's hospital appointment after biopsy

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User
Posted 28 Feb 2016 at 20:12
Hi everyone,

We found out at the end of January that my dad has advanced prostate cancer. It has spread to his bones and is in his neck, shoulders, spine and hips. He has started some hormone treatment already.

He had his biopsy 2 weeks ago and now has his appointment through to discuss the results on Wednesday. I was just wondering whether anyone knows what we should expect from this appointment and is there anything important we should be asking? He's having a bit of Odin in his hips and back, so we will be asking about that.

Myself and my sister will be going with mum and dad to every appointment dad has, for support and an extra set of ears to listen out for things. I think my sister is on this site as well, so you may all have double questions coming up but we'll try not to pester you all too much. Thanks everyone.

Penny

X

"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 10 Mar 2016 at 11:38

Hi Penny

My husband's most obvious SEs were that he was very emotional - partly because of the diagnosis of course but it is also a well recognised SE of hormone treatment. He also found that he tired more easily.

Re susceptibility to infections he continued working in his part time job amongst large numbers of the general public and didn't ever seem to pick anything up. I can't actually remember him even getting a cold in the nearly 2 years since diagnosis. We are obviously sensible about it and turn down visitors who actually have colds etc but he has even gone through chemo without picking anything up.

I would say just be sensible but don't overdo it!

Best wishes

Rosy 

User
Posted 29 Feb 2016 at 06:13

hi penny

I know its a difficult time and its hard to think straight but it will hep us guide you and give answers if we can, but could you post abit about dad as we have to make assumptions on what treatment he has had already, his age and gleason score plus anything else you care to add

on our avatars you can click on them and read about our journeys, some of the rules are never post the names of your Drs, but its ok to post the hospital as you may come across others going to the same one

going by what you have posted I assume dads had MRI, Bone and CT scans, before you get to the hospital a team will have gotten together to discuss the best treatment for dad, when you visit don't forget a notepad and pen and you do tend to forget things.

It may be an idea to have a talk with dad before you go on what he would like to know, not all men want a lot of info, if he wants you can ask to see the xrays from his scans

the HT will either be Prostasp or Zoladex he will have them weekly for a while then go on to a 3monthly injection, this will stop the build up of testosterone as this feeds the cancer,  their are side effects with HT one of which may make dad emotional, it should bring down the PSA readings

I was diagnosed a year ago with a PSA of 20 it is now 0.002   

your dad is in the same camp as a few of us on here who can not have any operations, on this site you will find references to all kinds of info you can either download or talk to one of the specialist nurses they are brilliant at helping, when I first called them it was one of the hardest things I have done in my life, think their where more tears than talk

I am also assuming it is an oncologist you are seeing

re questions ask about the benefit of early chemo it is a treatment I have had, and ask what else can you expect in the future

don't be frightened to ask questions on here or you can PM anyone of us

regards

nidge

 

 

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 29 Feb 2016 at 08:56

Hello Penny1984 and welcome to the site.

You'll already know a lot of the answers from your sister but never be afraid to "bother" us.

If there's something you want to know then ask.

I have no experience of metastatic PC so will leave it to the experts on here

We can't control the winds - but we can adjust our sails
User
Posted 29 Feb 2016 at 09:55

I would ask what type of prostate cancer it is - there are at least 27 types, the most common being adenocarcinoma. Most types need the same treatment plan but there are some rare kinds that need to be treated very differently because they don't respond to the hormone treatment.

Wednesday will be here before you have blinked!

It is great that you are going to go to all the appointments but do bear in mind that there are some things (like side effects of the treatment) that mum & dad might not feel able to discuss in front of you so perhaps offer to go out of the room before your parents to give them time for any 'personal' stuff they want to ask.

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

User
Posted 29 Feb 2016 at 11:06

Bicalutamide? It works by disguising the testosterone so the cancer cells think they are being starved. Probably after the appointment on Wednesday the doctors will give him a different kind of hormone that actually stops the testosterone from being produced in his body.

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

User
Posted 02 Mar 2016 at 20:21
Oh Dawn

That's not a very nice thing for the urologist to say, how can he have a clue until he sees your dad's response to HT. My hubby had a PSA of 25 and spread to lymph, hip, head of femur and spine, OK not as extensive as your dad but a Gleason 10. We got the usual, 18 months to 2 years on HT then..... But five years on here we are, no further spread and things are ok.

Try not to despair, things may not be as bleak as the urologist implied.

Lots of love

Allison

Show Most Thanked Posts
User
Posted 29 Feb 2016 at 06:13

hi penny

I know its a difficult time and its hard to think straight but it will hep us guide you and give answers if we can, but could you post abit about dad as we have to make assumptions on what treatment he has had already, his age and gleason score plus anything else you care to add

on our avatars you can click on them and read about our journeys, some of the rules are never post the names of your Drs, but its ok to post the hospital as you may come across others going to the same one

going by what you have posted I assume dads had MRI, Bone and CT scans, before you get to the hospital a team will have gotten together to discuss the best treatment for dad, when you visit don't forget a notepad and pen and you do tend to forget things.

It may be an idea to have a talk with dad before you go on what he would like to know, not all men want a lot of info, if he wants you can ask to see the xrays from his scans

the HT will either be Prostasp or Zoladex he will have them weekly for a while then go on to a 3monthly injection, this will stop the build up of testosterone as this feeds the cancer,  their are side effects with HT one of which may make dad emotional, it should bring down the PSA readings

I was diagnosed a year ago with a PSA of 20 it is now 0.002   

your dad is in the same camp as a few of us on here who can not have any operations, on this site you will find references to all kinds of info you can either download or talk to one of the specialist nurses they are brilliant at helping, when I first called them it was one of the hardest things I have done in my life, think their where more tears than talk

I am also assuming it is an oncologist you are seeing

re questions ask about the benefit of early chemo it is a treatment I have had, and ask what else can you expect in the future

don't be frightened to ask questions on here or you can PM anyone of us

regards

nidge

 

 

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 29 Feb 2016 at 08:56

Hello Penny1984 and welcome to the site.

You'll already know a lot of the answers from your sister but never be afraid to "bother" us.

If there's something you want to know then ask.

I have no experience of metastatic PC so will leave it to the experts on here

We can't control the winds - but we can adjust our sails
User
Posted 29 Feb 2016 at 09:55

I would ask what type of prostate cancer it is - there are at least 27 types, the most common being adenocarcinoma. Most types need the same treatment plan but there are some rare kinds that need to be treated very differently because they don't respond to the hormone treatment.

Wednesday will be here before you have blinked!

It is great that you are going to go to all the appointments but do bear in mind that there are some things (like side effects of the treatment) that mum & dad might not feel able to discuss in front of you so perhaps offer to go out of the room before your parents to give them time for any 'personal' stuff they want to ask.

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

User
Posted 29 Feb 2016 at 10:05
Hi,

Thanks for your replies. My dad is 67 years old. I'm not sure what HT tablets he is on, but I'm sure it begins with a B if that's of any use. I'm really not sure how much dad wants to know and I suppose I will have to leave it with him and follow his lead. At the moment, my dad is very positive. I do wonder if he fully understands how serious this is. He hasn't been on to this site and as far as I am aware hasn't looked into anything to do with advanced prostate cancer. He has been getting a little confused with everything as well, but as I said, that's what my sister and I are there for.

From his last blood test, we know his PSA level was 33 but I believe that's not a very high score? I'm assuming we will find out his Gleason score when we go to the appointment on Wednesday.

Dad has, as far as we know, no symptoms of prostate cancer. The only reason he went to the doctors in January was because he was feeling more tired than usual. He was then sent for a blood test which showed a high level of ALP in his blood and then he was referred for a bone scan. This then showed up that there was cancer in his neck, shoulders, spine and hips. The first appointment we had with the urologist included a flow test, another prostate examination (where he said that his prostate did not feel that abnormal) and a tummy scan. This is the meeting that they started him on the HT.

Thanks for all your help.

Penny

X

"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 29 Feb 2016 at 11:06

Bicalutamide? It works by disguising the testosterone so the cancer cells think they are being starved. Probably after the appointment on Wednesday the doctors will give him a different kind of hormone that actually stops the testosterone from being produced in his body.

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

User
Posted 02 Mar 2016 at 19:24

Sorry if I am hijacking your post little sister but I've read that it's good to keep everything on the same thread?

Ok, so we went to the hospital today and saw the urologist. We found out that Dad's cancer is aggressive and his gleason score is 9. They are now putting dad onto Goserelin injections. The worst part of the appointment was the prognosis, the Dr said "I'm not talking days or weeks or possibly even months - we took this to be around a year? We will have another appointment with the oncologist in a couple of weeks time to discuss further treatment, possibly a trial.

As you can imagine we are all devastated, Dad is still working, looks healthy and is in little pain - how can he be so ill?

Just thought I'd update you all, as usual any advice welcome

Love to you all

Dawn x

User
Posted 02 Mar 2016 at 20:21
Oh Dawn

That's not a very nice thing for the urologist to say, how can he have a clue until he sees your dad's response to HT. My hubby had a PSA of 25 and spread to lymph, hip, head of femur and spine, OK not as extensive as your dad but a Gleason 10. We got the usual, 18 months to 2 years on HT then..... But five years on here we are, no further spread and things are ok.

Try not to despair, things may not be as bleak as the urologist implied.

Lots of love

Allison

User
Posted 02 Mar 2016 at 20:40

I commented on the other thread but would be best on one thread but unless their a aspects of th diagnosis on which we are unaware a year seems far too short. It can happen but the are plenty of treatment options to consider and the current first stop is chemotherapy. The oncologist will be key and discuss options with you. Though it's difficult keep the faith, I am still here with Gleason 9 and bone spread over four years on!

User
Posted 02 Mar 2016 at 20:40

Dawn,

I'm a Gleason 9 with spread to bones too. When I was first diagnosed they said treatment could extend my life by "many months or years". I'm still here 31 months later. I'm still responding to treatment (see my profile). Don't panic. Hopefully your Dad will be with you for a long long time.

User
Posted 02 Mar 2016 at 23:31

When emotions are high it is possible to hear something and misinterpret it or remember it differently. So forgive me for this but I wonder if the urologist was saying the complete opposite?

"I'm not talking days or weeks or even months" sounds to me like a doctor who had been asked 'how long' and was replying that dad could be around for years yet. Surely if he was saying dad was terminal it would have been the other way round "I'm talking only months or perhaps weeks"

Did they say anything about spread to his liver or kidneys or other soft organs? Otherwise, this is very doom-laden news from the doctor and doesn't seem to make a whole load of sense. It will perhaps be better when you get clear info from the oncologist

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

User
Posted 03 Mar 2016 at 06:52
Hi Lyn, I see what you mean and today I feel so much more positive and I think you are right it's the oncologist that will be able to give a more detailed prognosis. The other thing that worried us with the urologist is that he suggested that Dad considers giving up work and getting his affairs in order? I wish now that I'd been strong enough to ask the question outright.

Anyway, today is a new day, Dad is feeling well and working from home so I'm going to be positive and support him as much as I can whatever this cruel disease throws at us

Love Dawn x

User
Posted 03 Mar 2016 at 07:50
Hi dawn

I would say if your dad feels ok working then carry on it gives you focus and a reason to get up in a morning

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 09 Mar 2016 at 14:15
Hi everyone,

Just a quick question. My mum was asking me whether dads immune system is affected by the cancer at all? Is he more susceptible to colds and things or does this not affect his health in that way?

Also, dad has his first lot of his HT injection (Goserin??) tomorrow at the GP. Do you know if this will bring any side affects? How will dad feel after the injection? I'm assuming that the side affects will be the same as the tablet HT he is taking but just thought I'd ask seeing as I am here.

Still yet to receive the appointment date to see the oncologist. It's been a week since we saw the urologist and things have been tough but we are getting through it together.

Look forward to hearing from you.

Penny

Xxx

"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 10 Mar 2016 at 11:38

Hi Penny

My husband's most obvious SEs were that he was very emotional - partly because of the diagnosis of course but it is also a well recognised SE of hormone treatment. He also found that he tired more easily.

Re susceptibility to infections he continued working in his part time job amongst large numbers of the general public and didn't ever seem to pick anything up. I can't actually remember him even getting a cold in the nearly 2 years since diagnosis. We are obviously sensible about it and turn down visitors who actually have colds etc but he has even gone through chemo without picking anything up.

I would say just be sensible but don't overdo it!

Best wishes

Rosy 

 
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