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Advice for a newbe

User
Posted 28 Mar 2016 at 14:49

Gone from thinking I was fit and healthy to partially diagnosed with advanced prostate cancer after biopsy and now in limbo waiting for MRI and Bone scans. Help and advice on how to get this thing into perspective would be greatly appreciated

 

Thanks

 

Dave T

User
Posted 28 Mar 2016 at 15:35

Hi Dave
I was exactly where you were 15 months ago and it's s*** isn't it.
What I can say is it definitely gets better.
It took me about 4/5 months to stop thinking about it every hour of every day.
You will go through the result and then you will worry about which treatment to take.
I'm in the non curable camp which meant no RT, no surgery because my cancer had spread to my pelvic bones.
Having said that I started on the HT and then onto a Stampede Trial where new drugs were offered. These new drugs are now available after diagnosis and before anything else. You would still need HT. (the new drugs are abiraterone and enzalutamide)
15 months on I'm still here alive and kicking and still running. My psa fell from 235 to under 0.1 where it has been for the last 13 or so months.
I get hot flushes and I'm more fatigued (I can't run the hills like I could and usually snooze if I sit and read or watch TV)
Read up about your options and be sure when you see your onco to take someone with you.
keep fit and try not to worry and have faith.

Hope this helps a it

Paul

User
Posted 28 Mar 2016 at 15:59

Hi Dave T - I'm a relative newbie to all of this too as a partner of someone with advanced cancer and so know some of what you're going through. It's just horrible - the shock of it all, scary thoughts, disbelief and also the fact that time takes on a whole new meaning (where a week can feel like a month!). It's awful that you're having to go through this. Here's what I have found useful (sorry that it's from a female perspective - I'm sure that others will offer their advice too who you can perhaps identify with more):

Go easy on yourself right now. My fiance felt he should be doing this and should be doing that but it just made him feel more stressed. Cancer has a way of changing your priorities.

Have someone go with you for consultations etc. - you can't possibly remember everything that's said as it is a lot to take in. A second set of ears and a bit of support will be of some help.

Figure out what you would like to ask - it's your cancer so you need to be proactive and find out what is relevant to you. If you don't feel strong enough at the moment have someone that can help you with this. Write questions down as you think of them. I did this for my fiance and found that most of the questions were covered during the course of the consultation but I was left with a couple at the end that helped to clarify a few points. Take a paper and pen with you (or better still delegate this to your second pair of ears!) to jot things down you might forget later on.

If you don't understand something - ask! My fiance didn't know what a PSA test was so got confused when they were talking about it and this meant that he was missing out on some of the other info. When they explained it to him, it meant that other things fell into place better. 

From my perspective it has helped me when my fiance has been upfront with me - as an example saying that he was tired instead of soldiering on, saying that he was feeling low etc. If you're upfront then those that are close to you can ultimately help you more - giving you more space, helping you a bit more with something. I think that this has helped both of us because it means that I don't have to be constantly checking if he's alright and I have been able to be more helpful!

Keep using this site - I have found some of the posts and others discussion of experiences invaluable. If you post more on your profile ie. PSA result, Gleason score, I am sure it will help others in their reply to you.

Arm yourself with credible info. You can't go wrong with the information prostate cancer uk provide and they will send out their publications free including their toolkit. I found them most helpful as, of course, they are prostate cancer specific! Some info won't be relevant to you but other things will and I have found it has helped me during consultations to know what the professionals have been talking about. Again if you don't feel up to this (my fiance hasn't) your second pair of ears might.

I remember how excruciating it was waiting for the bone scan and mri scan and then the results. Wanted them to be as quick as possible and yet dreaded knowing the day before! Unfortunately for us the news was not great (my fiance has bone and lymph node metastases) but I am hoping that you will get better news than we did. Regardless, there will be treatments out there for you even if there is no cure so try to keep as positive as you can even though it must feel impossible right now. Once you get your treatment plan you'll be able to get more advice on here (how to cope with side effects etc.)

Paul ("Healey") is right - the amount of time you spend thinking about the cancer does go down as in the beginning it seems to take over every thought you have. We are still at the thinking about it most of the time stage - but it is early days!

 

 

 

 

 

Show Most Thanked Posts
User
Posted 28 Mar 2016 at 15:22
Hi Dave and welcome, you will find a lot of help and support from the people on this site, I certainly have.

It will help others if you can add some of your results to your profile - PSA number, Gleason results etc.

You can either download the Toolkit from the publications section or order a hard-copy by phone or online. This will be very helpful for you.

When you see your consultant it's a good idea to take notes and have someone with you, my wife came with me when I was diagnosed and she picked up on things I didn't myself.

By clicking on people's avatars you can see their progress etc.

Don't be afraid to ask any question however stupid it may seem at the time, someone will always come along with an answer.

I would recommend that you don't look for answers on Google. You can always speak to the nurses on this website for advice.

Keep us informed of your progress, best wishes

Arthur

Edited by member 28 Mar 2016 at 15:25  | Reason: Not specified

User
Posted 28 Mar 2016 at 15:35

Hi Dave
I was exactly where you were 15 months ago and it's s*** isn't it.
What I can say is it definitely gets better.
It took me about 4/5 months to stop thinking about it every hour of every day.
You will go through the result and then you will worry about which treatment to take.
I'm in the non curable camp which meant no RT, no surgery because my cancer had spread to my pelvic bones.
Having said that I started on the HT and then onto a Stampede Trial where new drugs were offered. These new drugs are now available after diagnosis and before anything else. You would still need HT. (the new drugs are abiraterone and enzalutamide)
15 months on I'm still here alive and kicking and still running. My psa fell from 235 to under 0.1 where it has been for the last 13 or so months.
I get hot flushes and I'm more fatigued (I can't run the hills like I could and usually snooze if I sit and read or watch TV)
Read up about your options and be sure when you see your onco to take someone with you.
keep fit and try not to worry and have faith.

Hope this helps a it

Paul

User
Posted 28 Mar 2016 at 15:55

Hello Dave and welcome from me too, wife of a prostate cancer man

Arthur and Paul have said it all really and it's all great advice.

We all know and understand just how you feel right now but the feeling will get better, especially once you know exactly where you stand and then you'll have more control,

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Mar 2016 at 15:59

Hi Dave T - I'm a relative newbie to all of this too as a partner of someone with advanced cancer and so know some of what you're going through. It's just horrible - the shock of it all, scary thoughts, disbelief and also the fact that time takes on a whole new meaning (where a week can feel like a month!). It's awful that you're having to go through this. Here's what I have found useful (sorry that it's from a female perspective - I'm sure that others will offer their advice too who you can perhaps identify with more):

Go easy on yourself right now. My fiance felt he should be doing this and should be doing that but it just made him feel more stressed. Cancer has a way of changing your priorities.

Have someone go with you for consultations etc. - you can't possibly remember everything that's said as it is a lot to take in. A second set of ears and a bit of support will be of some help.

Figure out what you would like to ask - it's your cancer so you need to be proactive and find out what is relevant to you. If you don't feel strong enough at the moment have someone that can help you with this. Write questions down as you think of them. I did this for my fiance and found that most of the questions were covered during the course of the consultation but I was left with a couple at the end that helped to clarify a few points. Take a paper and pen with you (or better still delegate this to your second pair of ears!) to jot things down you might forget later on.

If you don't understand something - ask! My fiance didn't know what a PSA test was so got confused when they were talking about it and this meant that he was missing out on some of the other info. When they explained it to him, it meant that other things fell into place better. 

From my perspective it has helped me when my fiance has been upfront with me - as an example saying that he was tired instead of soldiering on, saying that he was feeling low etc. If you're upfront then those that are close to you can ultimately help you more - giving you more space, helping you a bit more with something. I think that this has helped both of us because it means that I don't have to be constantly checking if he's alright and I have been able to be more helpful!

Keep using this site - I have found some of the posts and others discussion of experiences invaluable. If you post more on your profile ie. PSA result, Gleason score, I am sure it will help others in their reply to you.

Arm yourself with credible info. You can't go wrong with the information prostate cancer uk provide and they will send out their publications free including their toolkit. I found them most helpful as, of course, they are prostate cancer specific! Some info won't be relevant to you but other things will and I have found it has helped me during consultations to know what the professionals have been talking about. Again if you don't feel up to this (my fiance hasn't) your second pair of ears might.

I remember how excruciating it was waiting for the bone scan and mri scan and then the results. Wanted them to be as quick as possible and yet dreaded knowing the day before! Unfortunately for us the news was not great (my fiance has bone and lymph node metastases) but I am hoping that you will get better news than we did. Regardless, there will be treatments out there for you even if there is no cure so try to keep as positive as you can even though it must feel impossible right now. Once you get your treatment plan you'll be able to get more advice on here (how to cope with side effects etc.)

Paul ("Healey") is right - the amount of time you spend thinking about the cancer does go down as in the beginning it seems to take over every thought you have. We are still at the thinking about it most of the time stage - but it is early days!

 

 

 

 

 

User
Posted 28 Mar 2016 at 16:00

The above is great advice. Please find the toolkit and read it. Actually phone the nurses on the freephone number. They are fantastic and very knowledgeable and helpful. We are so lucky this site is even available to us.
It's very very difficult once on the roller coaster to get off. Only the lucky few get an all clear and continual low results. I'm 9 months into my journey and it hasn't eased up at all. But there are so many people willing to help and share your worries and fears. You might be fine yet. Good luck
Chris

User
Posted 28 Mar 2016 at 16:15

Many thanks to you all. It is hart worming to get all your support

Thanks again

Dave

User
Posted 28 Mar 2016 at 16:23

Forgot to say, that I also now keep a "cancer diary" specifically for cancer related things. This is primarily so that I can keep track of appointments and make sure that they don't conflict but also so that I can look back and see when things have happened (last bone scan etc.). I also use it to keep track of all the medicine/treatment my fiance is on so that I have it to hand for consultations. With so much to take in and remember, I have found this invaluable for making sure I keep on top of things.

Good luck!

User
Posted 28 Mar 2016 at 16:36

My partner Sue has asked me to thank jillyd particularly for her advice and support. It is great to get the partners perspective.

She didn't come to my initial feed back with the consultant and I was in shock and got thins muddled but she will be with me every time now.

Thanks again
Dave T

User
Posted 28 Mar 2016 at 16:55

You're both welcome and please tell Sue I am thinking of her, as well as you - it's a horrible time for both of you. Glad she will be going with you from now on as it will help you to keep things straight and will help her to feel useful too.

User
Posted 02 Apr 2016 at 11:36

Hi Paul

I also particularly wanted to thank you for your support.

I found your experience and advice brilliant in a very dark time

I may be in a similar position to you

I  have my MRI today.

Thanks again

Dave

 

 

User
Posted 03 Apr 2016 at 09:29
Hello Dave & Sue just catching up really sorry you have found yourselves on this website but there is so much support and we all understand that overwhelming sense of worry but as others have said it does get easier. Just remember to talk to each other that really is key. Take care Jayne
 
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