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User
Posted 15 Dec 2017 at 21:46

I have been advised in an earlier post to list where my husband is up to in his treatment so here goes.

After going to the doctors in October because he was going to the toilet 4 or 5 times a night he had a blood test and his PSA was 17.2.  Our doctor immediately referred him to hospital and he was sent for an MRI scan and a biopsy.  The doctor called us back and told us it was bad news that he had prostrate cancer and it was serious.

The oncologist was more forthcoming and said that his gleason score was just under 9 which when I look it up seems awful.

He has started hormone therapy which they have said he will be on for three years.  After three months he will have 4 - 6 weeks radiotherapy.  Next week he has a radio isotope scan to see if the cancer has spread.  Given all the bad news we have had over the past month or so I'm dreading the results.

Is anyone else in this position and or has been in this position and can give me something positive to hang on to

Many thanks

 

 

 

User
Posted 16 Dec 2017 at 10:22

Hi there

It's all very worrying for you both at this stage as there seems to be so much happening so quickly as you are suddenly on this rollercoaster ride where not a lot seems to make any sense.

I am not qualified to offer opinions on medical matters but having been through this I can tell you that once you have the outstanding results you will be in a much better situation as you will then be able to work with your medical team to decide how to move forward.

I would suggest that if you haven't done so, either download the Toolkit from this site or phone and ask for the printed version to be sent to you. If you can, take a deep breath, make a cup of tea and sit and read this information you will begin to realise that there are so many treatments out there for this disease that life can continue almost as normal. I am a Gleason 9 and was diagnosed in 2015 but I am still carrying on more or less as before with a couple of adjustments due to side effects of treatment but they don't stop us getting on with our lives.

There are so many men on this site who have had much higher PSA readings than me (some in the thousands) and they are still battling on.

There are challenges to meet along the way whatever treatment you have, but I found that by reading about them beforehand I was mentally and physically prepared to meet them head on as they occurred. I am still out walking, riding my motorbike, driving school buses and having holidays as well as the usual household stuff along with the garden and doing jobs for neighbours.

The easy thing to say is 'try not to worry' but do try not to. You will get used to waiting for test results with prostate cancer and it becomes a part of your life but that's a small price to pay. There is nothing to be achieved by worrying but you can help yourselves by going through the toolkit and is all starts to make sense you will hopefully realise that between you and your medical team you can take some control back.

All the best and keep us posted. If you click on the avatars of members you can read through their stories.

Kevan

 

User
Posted 16 Dec 2017 at 16:48

Aggresive doesn't mean it's going to spread rapidly.

Gleason 8 (aggressive) .In total 47 months of HT - 1 month 3DRT (fewer but greater daily dose). No further cancer treatment since Aug 2008 so thats survived 13 years. Some hope?

Good luck with the bone scan

Ray

User
Posted 16 Dec 2017 at 18:08

If they are talking about the possibility of radiotherapy and time-limiting the hormones to 3 years it is because they are hopeful that the scans will show no spread. If they believed it was advanced they would be talking about being on hormones for life. Hold on to that thought until you have all the results.

Edited by member 16 Dec 2017 at 18:10  | Reason: Not specified

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

User
Posted 16 Dec 2017 at 18:13

Hi

My husband was diagnosed in 2006. can still remember the shock and wondering how long he had left, he was diagnosed gleason 9 T3B and told he had a very aggressive cancer we thought well that's it, not long left so went on lots of holidays to make the most of the time he had left, roll forward 11 and a half years, still enjoying holidays and he is still here and there has been so many advances in treatments since that scary day, hope all goes well for you both,

regards barbara.

 

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User
Posted 16 Dec 2017 at 10:22

Hi there

It's all very worrying for you both at this stage as there seems to be so much happening so quickly as you are suddenly on this rollercoaster ride where not a lot seems to make any sense.

I am not qualified to offer opinions on medical matters but having been through this I can tell you that once you have the outstanding results you will be in a much better situation as you will then be able to work with your medical team to decide how to move forward.

I would suggest that if you haven't done so, either download the Toolkit from this site or phone and ask for the printed version to be sent to you. If you can, take a deep breath, make a cup of tea and sit and read this information you will begin to realise that there are so many treatments out there for this disease that life can continue almost as normal. I am a Gleason 9 and was diagnosed in 2015 but I am still carrying on more or less as before with a couple of adjustments due to side effects of treatment but they don't stop us getting on with our lives.

There are so many men on this site who have had much higher PSA readings than me (some in the thousands) and they are still battling on.

There are challenges to meet along the way whatever treatment you have, but I found that by reading about them beforehand I was mentally and physically prepared to meet them head on as they occurred. I am still out walking, riding my motorbike, driving school buses and having holidays as well as the usual household stuff along with the garden and doing jobs for neighbours.

The easy thing to say is 'try not to worry' but do try not to. You will get used to waiting for test results with prostate cancer and it becomes a part of your life but that's a small price to pay. There is nothing to be achieved by worrying but you can help yourselves by going through the toolkit and is all starts to make sense you will hopefully realise that between you and your medical team you can take some control back.

All the best and keep us posted. If you click on the avatars of members you can read through their stories.

Kevan

 

User
Posted 16 Dec 2017 at 16:48

Aggresive doesn't mean it's going to spread rapidly.

Gleason 8 (aggressive) .In total 47 months of HT - 1 month 3DRT (fewer but greater daily dose). No further cancer treatment since Aug 2008 so thats survived 13 years. Some hope?

Good luck with the bone scan

Ray

User
Posted 16 Dec 2017 at 18:08

If they are talking about the possibility of radiotherapy and time-limiting the hormones to 3 years it is because they are hopeful that the scans will show no spread. If they believed it was advanced they would be talking about being on hormones for life. Hold on to that thought until you have all the results.

Edited by member 16 Dec 2017 at 18:10  | Reason: Not specified

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

User
Posted 16 Dec 2017 at 18:13

Hi

My husband was diagnosed in 2006. can still remember the shock and wondering how long he had left, he was diagnosed gleason 9 T3B and told he had a very aggressive cancer we thought well that's it, not long left so went on lots of holidays to make the most of the time he had left, roll forward 11 and a half years, still enjoying holidays and he is still here and there has been so many advances in treatments since that scary day, hope all goes well for you both,

regards barbara.

 

User
Posted 16 Dec 2017 at 19:45

Thank you all. I cannot tell you how much better your supportive comments make me. As you all know it feels a bit like wandering in the wilderness but you have made me see that there is hope. Thank you all

 
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