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BEGINNING OF THE END?

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User
Posted 19 Feb 2015 at 09:02
Hello

My husband was diagnose T1 GL3 PSA 6.1 in April 2006 aged 65. He was put on Watch and Wait

He is now approaching 76 and his latest PSA is 19.5. He is being referred to the oncologist for treatment - what kind I have no idea.

I would be really pleased to find out a bit about possible treatments. Had head in sand for last few years, dealing with failed replacement knee surgery and recently diagnosed diabetes.

User
Posted 19 Feb 2015 at 09:37

Hello Peggyx,

Most importantly it is NOT necessarily the beginning of the end. Medicine, treatments and research have all moved on a lot since he was first diagnosed all this years ago.

Sorry that you find yourselves here and in need of information, but glad that you found this site as the people are very helpful.

Have you looked at the "toolkit" available on this site? Always a good place to start if you are seeking clarification on what you are dealing with and what options may be open to you.

What other PSA readings do you have? Any other health issues apart from the ones that you have mentioned? Are you going to see any other specialists?

Someone more knowledgeable will be along to help you shortly. But please do remember it is not necessarily the beginning of the end.

dave

User
Posted 19 Feb 2015 at 10:26

Hi Peggy I am sure there is some treatment available. Take heart from the many stories on this site. I am amazed at the resilience and positive attitude of many here.. Georgina

User
Posted 19 Feb 2015 at 11:10

Hello Peggy,


I'm no expert, but like most others on this site have done quite a bit of reading and research on the subject of PCa since my own diagnosis.

There will most certainly be treatments available to your husband that are appropriate for his stage of the disease ( whatever that staging currently is ) 


Make sure you consider all treatment options and they are explained to you in full....

Being referred to an oncologist suggests that you may be guided towards either HT or RT  or a combination of both...

I would imagine that an MRI scan of the pelvic area to establish clinical staging would be carried out before any recommendations / options were put to you.


Your husbands present health, age and any current conditions will also be taken in to account when deciding on a treatment path.


Please take strength  from the many stories that you can read on this forum of people who have been on similar paths and are doing well. 


Best Wishes


Luther

User
Posted 19 Feb 2015 at 12:53
Hi Peggy
I can imagine that you are feeling quite bewildered so finding this forum and posting is a great start in continuing to support your Husband however you can.
First of all being diagnosed with diabetes at nearly 76 is not unusual at all many of us succumb to one form of diabetes or another as we get older, at 75 it may just be an intolerance to his own nsulin rather than eating the wrong things, not having enough exercise or carrying too much weight which are all the major contributors to late onset type 2 diabetes which tends to manifest at a younger age.There are qute a few men on this forum who manage to control their diabetes really well alongside any treatment for PCa so take heart from that.
Having any joint replacement that does not go too well is also a difficult and traumatic experience so to be told that hs prostate cancer has started to progress must make it all seem unfair.

Only the specialist can tell you what is happening with his cancer right now, they may need to run a few tests and scans to establish a revised staging and Gleason score. The staging tells you if the cancer is still local and contained or local but starting to push through the prostate wall or surrounding vessels, or if it is advanced and has spread to the lymph nodes, other soft tissue or bones or any combination of these. The Gleason score is derived from analysing samples taken in the biopsy samples are taken from either side of the prostate and the severity/aggressiveness of the cancer is reflected in this figure. So the lowest score these days is usually 3/3 being the least aggressive and the highest is 5/5 being the most aggressive.The combination of these two things along with your Husbands general health and well being and the rate at which his PSA increases will guide the consultants in their recommendations for treatment.
What I would say is with a T1 staging almost 10 years ago and no treatment in that time it sounds as though your husband has one of the very slow developing strains or types of PCa so I really hope that this is the case.
Read the toolkit and soak in as much information from people here but do not get too carried away looking at the internet in general as it can lead you down all the wrong paths and just scare you unnecessarily.

In the 10 years your husband has had this disease enormous steps have been taken to improve the treatments with large numbers of new drugs, types of Radio therapy, chemotherapy and with consultants working as one team across urology, oncology and radiotherapy to come up with the best options.

I hope that is not too much general information in one go, if you think of anything specific or just want some moral support and a virtual hug we are all here for you. You can also talk with the nurses on the number on the home age of this website, they are really understanding and helpful.

Very best wishes
xx
Mo
User
Posted 19 Feb 2015 at 13:57

Hello Peggy and welcome.

Sorry that your other half has had problems in addition to PC.

Ten + years on watch and wait meant the cancer was a slow grower. My own husband 72/3 at the time was put on active surveillance but after a year or so had to make a decision regarding treatment.

Please do not despair or think this is the beginning of the end.
You are both a long way from that.

To obtain "The Toolkit" go back to the home page. Go to INFORMATION then OUR PUBLICATIONS.

If you then click on "Publication" there will be another box where you can choose that which is most relevant to you.
All free of charge.

They are very informative booklets/info sheets relating to PC and its treatment.

Chin up. We're all here, in much the same boat, sailing the same journey as yourselves.
Some of us hit stormy weather, for others it's fairly plain sailing
(What a lot of nautical terms in one message - not even a sailor!)

Anyway, you've found us now so ask away anything you want to know. Somebody is bound to know the answer, or know somebody who does.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 19 Feb 2015 at 09:37

Hello Peggyx,

Most importantly it is NOT necessarily the beginning of the end. Medicine, treatments and research have all moved on a lot since he was first diagnosed all this years ago.

Sorry that you find yourselves here and in need of information, but glad that you found this site as the people are very helpful.

Have you looked at the "toolkit" available on this site? Always a good place to start if you are seeking clarification on what you are dealing with and what options may be open to you.

What other PSA readings do you have? Any other health issues apart from the ones that you have mentioned? Are you going to see any other specialists?

Someone more knowledgeable will be along to help you shortly. But please do remember it is not necessarily the beginning of the end.

dave

User
Posted 19 Feb 2015 at 10:26

Hi Peggy I am sure there is some treatment available. Take heart from the many stories on this site. I am amazed at the resilience and positive attitude of many here.. Georgina

User
Posted 19 Feb 2015 at 11:10

Hello Peggy,


I'm no expert, but like most others on this site have done quite a bit of reading and research on the subject of PCa since my own diagnosis.

There will most certainly be treatments available to your husband that are appropriate for his stage of the disease ( whatever that staging currently is ) 


Make sure you consider all treatment options and they are explained to you in full....

Being referred to an oncologist suggests that you may be guided towards either HT or RT  or a combination of both...

I would imagine that an MRI scan of the pelvic area to establish clinical staging would be carried out before any recommendations / options were put to you.


Your husbands present health, age and any current conditions will also be taken in to account when deciding on a treatment path.


Please take strength  from the many stories that you can read on this forum of people who have been on similar paths and are doing well. 


Best Wishes


Luther

User
Posted 19 Feb 2015 at 12:53
Hi Peggy
I can imagine that you are feeling quite bewildered so finding this forum and posting is a great start in continuing to support your Husband however you can.
First of all being diagnosed with diabetes at nearly 76 is not unusual at all many of us succumb to one form of diabetes or another as we get older, at 75 it may just be an intolerance to his own nsulin rather than eating the wrong things, not having enough exercise or carrying too much weight which are all the major contributors to late onset type 2 diabetes which tends to manifest at a younger age.There are qute a few men on this forum who manage to control their diabetes really well alongside any treatment for PCa so take heart from that.
Having any joint replacement that does not go too well is also a difficult and traumatic experience so to be told that hs prostate cancer has started to progress must make it all seem unfair.

Only the specialist can tell you what is happening with his cancer right now, they may need to run a few tests and scans to establish a revised staging and Gleason score. The staging tells you if the cancer is still local and contained or local but starting to push through the prostate wall or surrounding vessels, or if it is advanced and has spread to the lymph nodes, other soft tissue or bones or any combination of these. The Gleason score is derived from analysing samples taken in the biopsy samples are taken from either side of the prostate and the severity/aggressiveness of the cancer is reflected in this figure. So the lowest score these days is usually 3/3 being the least aggressive and the highest is 5/5 being the most aggressive.The combination of these two things along with your Husbands general health and well being and the rate at which his PSA increases will guide the consultants in their recommendations for treatment.
What I would say is with a T1 staging almost 10 years ago and no treatment in that time it sounds as though your husband has one of the very slow developing strains or types of PCa so I really hope that this is the case.
Read the toolkit and soak in as much information from people here but do not get too carried away looking at the internet in general as it can lead you down all the wrong paths and just scare you unnecessarily.

In the 10 years your husband has had this disease enormous steps have been taken to improve the treatments with large numbers of new drugs, types of Radio therapy, chemotherapy and with consultants working as one team across urology, oncology and radiotherapy to come up with the best options.

I hope that is not too much general information in one go, if you think of anything specific or just want some moral support and a virtual hug we are all here for you. You can also talk with the nurses on the number on the home age of this website, they are really understanding and helpful.

Very best wishes
xx
Mo
User
Posted 19 Feb 2015 at 13:57

Hello Peggy and welcome.

Sorry that your other half has had problems in addition to PC.

Ten + years on watch and wait meant the cancer was a slow grower. My own husband 72/3 at the time was put on active surveillance but after a year or so had to make a decision regarding treatment.

Please do not despair or think this is the beginning of the end.
You are both a long way from that.

To obtain "The Toolkit" go back to the home page. Go to INFORMATION then OUR PUBLICATIONS.

If you then click on "Publication" there will be another box where you can choose that which is most relevant to you.
All free of charge.

They are very informative booklets/info sheets relating to PC and its treatment.

Chin up. We're all here, in much the same boat, sailing the same journey as yourselves.
Some of us hit stormy weather, for others it's fairly plain sailing
(What a lot of nautical terms in one message - not even a sailor!)

Anyway, you've found us now so ask away anything you want to know. Somebody is bound to know the answer, or know somebody who does.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 19 Feb 2015 at 18:30
How kind of you all to take the time to answer. Danny's only just coming to terms with the technical age so I know he won't contribute to this forum himself but I shall certainly keep him updated on any relevant info.

When he was first diagnosed 9 years ago I spent hours on line researching stuff about prostrate cancer. Danny took part in a HIFU trial in London but because they discovered tumours in both sides (it was a study for just one side) he was excluded. Since then he's had 6 monthly PSA tests and each time there has been a rise. In fact the last one was just 3 months ago and was 15.73 so 19,5 is quite a jump.

In the 3 months since his diabetes diagnosis I have spent hours on the Internet and forums researching that. It looks like I'll be playing with you guys for a while! We have changed the way we eat quite significantly to low carb, high fat and his sugar intake has reduced considerably. He is not at all overweight and he's lost weight he didn't need to.

Exercise is painful for him because of unsucceful knee surgery.

Despite all his problems he bears it all with considerable cheerfulness. Who was it said "Old age isn't for wimps?"
User
Posted 20 Feb 2015 at 10:12

Hi Peggy

The beginning of the end starts from birth :) Health downturns in-between both ends age takes its toll. As regards PCa as suggested by going down the oncologist route and possibly age it looks like HT and maybe RT will be the way forward. Both have served me well for 10 years.

As regards diet: a balanced diet doesn’t seem to have done me any harm thus far; but we each make our own mind up on that. Just go with what you feel comfortable with and enjoy..

As regards exercise it could well help lessen the side effects of HT.
.
Good Luck

Ray

User
Posted 21 Mar 2015 at 20:12

Dear Peggy,

I would say definitely not the beginning of the end, but the start of some good effective treatment.

Much love to you ad your OH. A journey none of us wish we were on. Keep strong xx

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 31 Mar 2015 at 15:35
I've just looked back over these lovely comments and take heart that we are not alone. We saw the oncologist today and he has prescribed a combination of hormone therapy (3 months initially) BICALUTAMIDE 150g followed by a four week course of daily radiotherapy. I am a bit concerned that further tests were not done to confirm the condition of his prostate before starting the therapy. Is this something we should ask for? Anyway it looks like quite a difficult few months ahead.
User
Posted 31 Mar 2015 at 16:23
Hi Peggy
Take heart from the posts you see on this website, everyone is so supportive. There's a lot that can be done for your OH. Click on my name to look a my profile, I hope this will encourage you.
Best wishes, Arthur
 
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