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User
Posted 31 Dec 2016 at 11:11
My husband was told on 19/12/16 that with a Psa of 138 it is highly likely that he has prostate cancer. Since then he has had biopsies and a full body bone scan. We see the consultant for the results on Tuesday. I have read some of these conversations and haven't seen a Psa as high as 138!! No Gleason score until Tuesday. Don't know where to turn
User
Posted 05 Jan 2017 at 21:12

Hi Lynda,

If your husband has just been put on Casodex, might I suggest that he also asks his specialist for Tamoxafin, these will help him preventing producing manboobs. For which Casodex is famous for. This may seem a small side issue at the moment, but I can assure you in a couple of years time they will become a major embrassment.

Stu

User
Posted 31 Dec 2016 at 12:49
Hello and welcome Lyndyloobooth,

When you see the consultant on Tuesday take notes as you might not remember everything that's said. It may be worth writing out some questions beforehand.

Your husband's PSA is quite high but there on some on here who had PSA in the 1000s, mine was 408. Click on my (and others) avatars to see their respective journeys with PCa.

Download the Toolkit from the publications section on this website, you'll find the info there very helpful. You can also speak to the specialist nurses here.

When you get the results post them on here and update your profile and others will be able to help you with advice etc. We're not generally medical people but are people who have PCa or the partner of someone who has it.

Feel free to ask any questions however stupid they may seem, someone will have experience in what you're asking and they will be able to help you.

Try not to Google regarding this as it isn't always helpful.

Best wishes

Arthur

User
Posted 31 Dec 2016 at 12:55

Just to say welcome from me too Lyndy.

All good advice from Arthur so won't repeat it.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 31 Dec 2016 at 17:50
Hi Lynda

The main issue is to understand Gleason and grading. At this stage cancer has not been confirmed at all.

This initial meeting can be quite a blur for both parties.

If you haven't seen this. Have a read

http://prostatecanceruk.org/prostate-information/just-diagnosed/what-do-my-test-results-mean

Ie take things a stage at a time and don't rush. I realise even aggressive grades don't appear to be like other cancer types and everyone responds differently. After the meeting you will believe me be in a much better place. Everyone on here takes a different journey. .

All the very best on 3rd..

Gordon

User
Posted 31 Dec 2016 at 19:04

Hi Lynda

Sorry you find yourself here. All good advice above - read the toolkit and understand what the terms are, and scores mean. The good news is that your husband is being fast-tracked and that means you don't wait around for long, even though this initial stage waiting for the actual diagnosis can seem excruciatingly slow.

I had a PSA of 72, which was in fact a blip due to another infection, and it has returned to a more normal 3.4. So even though a high PSA is a strong indicator for PCa, it is only an indicator and other things could be at play.

The best advice above was to take your mind off it and enjoy a few drinks to celebrate the new year. Stay positive, get informed about the terms, scores and options in preparation for your consultation, and don't be afraid to ask any questions. You won't be expected to make a decision on Tuesday, so you will have time to digest the diagnosis and plan accordingly. This forum is a great resource with men and partners who have gone through it and come out the other side.

Good luck on Tuesday.

Chris

User
Posted 31 Dec 2016 at 20:12

Under publications more specifically http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Barry
User
Posted 04 Jan 2017 at 20:56
Hi there, not the best news but equally not the worst. A negative bone scan is very good and possibly indicates that the cancer is still just located within the prostate area as in localiy advanced prostate cancer you mention. The oncologist will probably discuss radiotherapy with you. This usually follows 3-6 months of the HT he has started.

Hopefully he is still in the cure camp so try to remain positive. Once you know what is happening things will be clearer and things really won't feel as bad as they do now

Bri

Edited by member 04 Jan 2017 at 20:57  | Reason: Not specified

Show Most Thanked Posts
User
Posted 31 Dec 2016 at 12:49
Hello and welcome Lyndyloobooth,

When you see the consultant on Tuesday take notes as you might not remember everything that's said. It may be worth writing out some questions beforehand.

Your husband's PSA is quite high but there on some on here who had PSA in the 1000s, mine was 408. Click on my (and others) avatars to see their respective journeys with PCa.

Download the Toolkit from the publications section on this website, you'll find the info there very helpful. You can also speak to the specialist nurses here.

When you get the results post them on here and update your profile and others will be able to help you with advice etc. We're not generally medical people but are people who have PCa or the partner of someone who has it.

Feel free to ask any questions however stupid they may seem, someone will have experience in what you're asking and they will be able to help you.

Try not to Google regarding this as it isn't always helpful.

Best wishes

Arthur

User
Posted 31 Dec 2016 at 12:55

Just to say welcome from me too Lyndy.

All good advice from Arthur so won't repeat it.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 31 Dec 2016 at 14:37
Thank you all, your comments have brought me off the ceiling. Much appreciated. I will update after Tuesday. 😞
User
Posted 31 Dec 2016 at 14:45
Arthur, you mention a toolkit? Where will I find? Many thanks
User
Posted 31 Dec 2016 at 15:29
lyndyloo

Nothing is going to change over the next few days so please try and take it a little easier. Hard to do I know - but many men on this forum began their cancer journey with PSA numbers way in excess.

Once the New Year is over, you will have your consultation and everything should be clearer. Knowledge is power and you WILL feel more in control once you have some further numbers to work with. I would caution others' advice to Google as most entries are confusing if you are not aware of the terminology and mostly have negative outcomes.

I would read the toolkit and take the general advice from this website and also when you speak to your specialist next week.

Until then, please both try and blot out the negativity of what has just entered your lives, crack open a bottle of your favourite tipple and drink to the new year, a special love and the bond between you and your partner.

Bazza

Barry

User
Posted 31 Dec 2016 at 15:44
Originally Posted by: Online Community Member
Arthur, you mention a toolkit? Where will I find? Many thanks

This link should take you there

http://prostatecanceruk.org/prostate-information/our-publications

Arthur

User
Posted 31 Dec 2016 at 17:50
Hi Lynda

The main issue is to understand Gleason and grading. At this stage cancer has not been confirmed at all.

This initial meeting can be quite a blur for both parties.

If you haven't seen this. Have a read

http://prostatecanceruk.org/prostate-information/just-diagnosed/what-do-my-test-results-mean

Ie take things a stage at a time and don't rush. I realise even aggressive grades don't appear to be like other cancer types and everyone responds differently. After the meeting you will believe me be in a much better place. Everyone on here takes a different journey. .

All the very best on 3rd..

Gordon

User
Posted 31 Dec 2016 at 19:04

Hi Lynda

Sorry you find yourself here. All good advice above - read the toolkit and understand what the terms are, and scores mean. The good news is that your husband is being fast-tracked and that means you don't wait around for long, even though this initial stage waiting for the actual diagnosis can seem excruciatingly slow.

I had a PSA of 72, which was in fact a blip due to another infection, and it has returned to a more normal 3.4. So even though a high PSA is a strong indicator for PCa, it is only an indicator and other things could be at play.

The best advice above was to take your mind off it and enjoy a few drinks to celebrate the new year. Stay positive, get informed about the terms, scores and options in preparation for your consultation, and don't be afraid to ask any questions. You won't be expected to make a decision on Tuesday, so you will have time to digest the diagnosis and plan accordingly. This forum is a great resource with men and partners who have gone through it and come out the other side.

Good luck on Tuesday.

Chris

User
Posted 31 Dec 2016 at 20:12

Under publications more specifically http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Barry
User
Posted 04 Jan 2017 at 20:29
We saw the prostate cancer sister on Tuesday. My husbands Gleason score was 9. He has locally advanced prostate cancer. Been put on Casodex for 4 weeks (tablet form) followed by 4 weekly injections. Now awaiting appt for ct scan and to see oncologist. Bone scan came back negative. Not looking too good and not what we were hoping for. Can't remember T score. Any advice welcome. Thank you
User
Posted 04 Jan 2017 at 20:56
Hi there, not the best news but equally not the worst. A negative bone scan is very good and possibly indicates that the cancer is still just located within the prostate area as in localiy advanced prostate cancer you mention. The oncologist will probably discuss radiotherapy with you. This usually follows 3-6 months of the HT he has started.

Hopefully he is still in the cure camp so try to remain positive. Once you know what is happening things will be clearer and things really won't feel as bad as they do now

Bri

Edited by member 04 Jan 2017 at 20:57  | Reason: Not specified

User
Posted 05 Jan 2017 at 21:12

Hi Lynda,

If your husband has just been put on Casodex, might I suggest that he also asks his specialist for Tamoxafin, these will help him preventing producing manboobs. For which Casodex is famous for. This may seem a small side issue at the moment, but I can assure you in a couple of years time they will become a major embrassment.

Stu

 
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