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Positives please x

User
Posted 29 Mar 2016 at 16:12

Hi!

Hopefully i am on the right page!

Husband 61 non smoker fit and healthy no symptoms but psa on well man check (I made him have!) was 5.8 free ratio was a poor 8 MRI scan came back as "sad to say MRI is suspicious and that there may well be prostate cancer present"  Got told in a letter….. hmmmmmmmmm…...

Both in shock, mind in overdrive (husband managing to sleep - Im not)

Seeing Doctor tomorrow to see what the MRI showed exactly then will get biopsy booked in as well.

Nervous and feel sick and keeping it from our son and everyone for now until we know what we are up against. I also feel so sad as my Husband had bowel cancer 11 years ago and survived that…...

 

All mixed up in my head and juggling works well.

if its okay I will let you know what happens and if anyone has stories of hope and positive stuff I would be grateful!!

Thank you

 

Jen

User
Posted 29 Mar 2016 at 17:29

Hi Jen,

I know how worrying a time diagnosis can be, we all go through it, cancer is a terrible word, with thoughts of why me? what have I done to deserve this?

Most of us go through our lives not thinking about it, not wanting to think about it, merely hoping it will never happen.

However once you have got it, and get over the fact that you have got it, and start studying the facts, then life isn't so bad.

Firstly almost all men, as long as they live long enough, will get PCa (Prostate cancer).

66% of men aged in their 60's have PCa, and it becomes 80% of men in their 70's, the thing is most men don't even know it, most men with PCa live long and fulfilling lives, and die of something entirely different without even knowing that they had PCa.

Your husband had no symptoms, which is good, PSA of 5.8 which is good, he will have to have tests and quite likely a biopsy before you know what you are dealing with, but you have come to the right place, you can learn a lot from the 'Toolkit' part of this website and the people on here will happily answer your questions.

To put things in perspective my PSA was 30.8, my biopsy showed I had the most aggresive form of cancer, that was 9 years ago, I am still here, enjoying looking after my grandchildren, with no worries of meeting St Peter any time soon. 

:)

Dave

Edited by member 29 Mar 2016 at 17:30  | Reason: Not specified

User
Posted 29 Mar 2016 at 17:51

Jenny I have answered you in your other post as has Paul.

You appear to have a duplicate running. It does sometimes happen because when a new member does a first post it doesn't appear straight away as it is monitored by the site and then people think it hasn't gone on and do it again.

Don't worry about it but it might be best to just stick to one

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Mar 2016 at 19:04

Have a good cry if you need one Jen. I've learnt that now. Daves post is brilliant and good advice indeed. It is true that things get easier. They have to or you'd implode -- the whole PCa thing is endless waiting , appointments , biopsies and scans etc. You might be fine yet and I hope things are ok. Keep in touch. Everyone is here for you

User
Posted 29 Mar 2016 at 19:14

Hi Jen,

My OH was told that he has PC, waiting for a MRI scan as OH had the biopsy first and then we will sit down for our options, it been 2 weeks since we where told and it has been a roller coaster ride with my emotions can't quite believe it PSA 6.6. Trying to keep positive some days better than other. Have done quite a bit of reading so that when we sit down I will understand what is being said and be able to ask questions.

Best wishes

User
Posted 29 Mar 2016 at 19:20
Hi Jenny,

First thing I would say is don't despair , I know that being given the C card is enough to make you shake in your boots and secondly we have all been there. Trust me I was running around like a headless chicken (we are know 3 years on from diagnosis).

I would say don't google ( but come on we all do) listen to the People on here , we have lived it with real stories. We are all real with real outcomes if you click on individual avatars you can read our stories so I would suggest for starters.

George Hardy

Si-ness

This should keep you going for a while

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Mar 2016 at 21:02

Hi Guys,

The most disturbing aspect of diagnosis is that according to the Royal Australian College of General Practitioners in the week following diagnosis of prostate cancer men are 8 times more likely than normal to commit suicide, and 11 times more likely to suffer a cardiovascular event.

Most of can relate to that heartache when we were first diagnosed, yet years later after living with PCa most of us have brushed it aside and are getting on with our lives, following the saying that 'I've got cancer, but cancer hasn't got me'

God knows how we can persuade the newly diagnosed that having PCa isn't that bad, because after all we wouldn't wish it on anyone, but it is a shame that so many have to go through the pain and heartache which follows diagnosis.

:)

Dave 

 

 

 

User
Posted 29 Mar 2016 at 22:21

I suppose the idea of writing it in a letter rather depends on what happened at that previous appointment. If the patient has been told his PSA is higher than it should be, and the free ratio is low (I assume you meant it was 8%?) so an MRI is needed to identify where to aim the biopsy needles, the medics may have felt they had already communicated that there is a problem. They wouldn't therefore see anything wrong with confirming again in a letter that there does indeed seem to be a need for the biopsy that the MRI was intended to inform.

If he hadn't understood the purpose of the MRI, then I can see why it would be a shock. Having said that, he is right bang in the range where 50% of men go on to be diagnosed (5.8 is a mid-range and at less than 10% free ratio around half of men have positive biopsies) there is no certainty that he does have cancer. Sometimes the grey areas seen on the scan are areas of inflammation / infection which could also cause the slightly raised PSA. Best not to run ahead and start imagining the worst, try to wait for whatever news the biopsies bring.

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

User
Posted 01 Apr 2016 at 13:04

I think one of the hardest things to grasp about prostate cancer is that the word 'aggressive' doesn't necessarily mean what we think it means. In terms of how distorted the cells are, they are given a Gleason score which can be anything from 1 - 5, the two most common patterns are then added together. Below a 3 isn't really considered to be cancer so the lowest Gleason would be G6 (3+3). 'Aggressive' is used to describe anything from G7 (4+3) to G10 (5+5). 'Aggressive' is also used to describe a prostate cancer that is generating PSA of more than 10, or one that is staged as in both sides of the gland and has already started to move outside the gland.

Aggressive should not be confused with 'advanced'. There are plenty of men who had a not 'aggressive' cancer but are already terminally ill at diagnosis, and men with 'aggressive' PCa who go on to achieve a full remission.

The consultant may believe this is an aggressive cancer (although he must be using instinct rather than fact at this stage) but he apparently does not believe it to be particularly advanced otherwise the biopsies would be done immediately. The few weeks wait makes no sense at all; perhaps as already advised, you should ask them to clarify the delay.

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

User
Posted 04 Apr 2016 at 15:34
J

It might be worth chasing the biopsy date, I was due to have a CT scan done at our sister hospital, they had rejected the request due to lack of info, but did not tell anyone. That was not the only time things had got lost.

Easy to say but stay positive.

Thanks Chris

User
Posted 04 Apr 2016 at 15:42

Good advice thanks Chris - Its Easter 2 weeks up here just now so that might be causing at least some delay - however if we haven't heard by Wednesday I will chase definitely.
thank you
J

User
Posted 05 Apr 2016 at 14:20
Hi Jen,

I had the results of my biopsy 3 weeks later at my follow up appointment in the urology department at the hospital.

Hope this helps.

Best wishes ,

John

User
Posted 05 Apr 2016 at 15:49

Thanks as ever John

Jen

User
Posted 05 Apr 2016 at 21:48

There can be cock ups along the way. After 4 weeks I had heard nothing about the results of my biopsy so I rang the secretary of my urologist. Much scrambling and I was offered an appointment to see him within a few days. At that appointment I was given the bad news. The urologist was suitably angry at the delay and muttered about heads rolling. It turned out my case had been discussed by the multi disciplinary team on target and the delay in notification was an administrative issue. As things turned out there was no harm done and my treatment has been started well within NICE guidelines but the moral of the story is chase things up if you haven't heard by about 3 weeks.

User
Posted 06 Apr 2016 at 19:43

Hi Jenny

I know it is a shock when the big c is mentioned but don't despair.

I like Dave had a high PSA which was 32, Gleason of 9. had surgery last December and returned to full time work at start of March so just getting on with life before I go for RT in June.

I know it is hard but once you get all the facts about the disease then you will be able to handle it a lot better, still worrying though but at least you know what you are fighting.

Don't get me wrong I have had my moments and my wife took it really bad and still asks the question why us. there is still a life to be had even with PCa as Dave has already stated he was diagnosed 9 years ago and still enjoying life with his grandkids.

This web site will give you all the information that you will need and the nurses are superb, they have supported me a few times especially at the beginning.

Stay strong.

Sandy

Show Most Thanked Posts
User
Posted 29 Mar 2016 at 17:29

Hi Jen,

I know how worrying a time diagnosis can be, we all go through it, cancer is a terrible word, with thoughts of why me? what have I done to deserve this?

Most of us go through our lives not thinking about it, not wanting to think about it, merely hoping it will never happen.

However once you have got it, and get over the fact that you have got it, and start studying the facts, then life isn't so bad.

Firstly almost all men, as long as they live long enough, will get PCa (Prostate cancer).

66% of men aged in their 60's have PCa, and it becomes 80% of men in their 70's, the thing is most men don't even know it, most men with PCa live long and fulfilling lives, and die of something entirely different without even knowing that they had PCa.

Your husband had no symptoms, which is good, PSA of 5.8 which is good, he will have to have tests and quite likely a biopsy before you know what you are dealing with, but you have come to the right place, you can learn a lot from the 'Toolkit' part of this website and the people on here will happily answer your questions.

To put things in perspective my PSA was 30.8, my biopsy showed I had the most aggresive form of cancer, that was 9 years ago, I am still here, enjoying looking after my grandchildren, with no worries of meeting St Peter any time soon. 

:)

Dave

Edited by member 29 Mar 2016 at 17:30  | Reason: Not specified

User
Posted 29 Mar 2016 at 17:51

Jenny I have answered you in your other post as has Paul.

You appear to have a duplicate running. It does sometimes happen because when a new member does a first post it doesn't appear straight away as it is monitored by the site and then people think it hasn't gone on and do it again.

Don't worry about it but it might be best to just stick to one

Best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Mar 2016 at 18:10

thanks so much! - apologies for both threads Sandra I wasn't sure how it worked... I will stick to this one
Thanks both of you

Dave - what you said really helped.....

Jen

User
Posted 29 Mar 2016 at 18:58

I'm feeling a bit useless to be honest……. and feel like crying

don't know which thread to reply to sandra. (but thank you anyway)

Dave - thanks again much appreciated

User
Posted 29 Mar 2016 at 19:04

Have a good cry if you need one Jen. I've learnt that now. Daves post is brilliant and good advice indeed. It is true that things get easier. They have to or you'd implode -- the whole PCa thing is endless waiting , appointments , biopsies and scans etc. You might be fine yet and I hope things are ok. Keep in touch. Everyone is here for you

User
Posted 29 Mar 2016 at 19:10

Thanks Chris….
I am learning ….. its a steep curve.

User
Posted 29 Mar 2016 at 19:14

Hi Jen,

My OH was told that he has PC, waiting for a MRI scan as OH had the biopsy first and then we will sit down for our options, it been 2 weeks since we where told and it has been a roller coaster ride with my emotions can't quite believe it PSA 6.6. Trying to keep positive some days better than other. Have done quite a bit of reading so that when we sit down I will understand what is being said and be able to ask questions.

Best wishes

User
Posted 29 Mar 2016 at 19:20
Hi Jenny,

First thing I would say is don't despair , I know that being given the C card is enough to make you shake in your boots and secondly we have all been there. Trust me I was running around like a headless chicken (we are know 3 years on from diagnosis).

I would say don't google ( but come on we all do) listen to the People on here , we have lived it with real stories. We are all real with real outcomes if you click on individual avatars you can read our stories so I would suggest for starters.

George Hardy

Si-ness

This should keep you going for a while

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Mar 2016 at 21:02

Hi Guys,

The most disturbing aspect of diagnosis is that according to the Royal Australian College of General Practitioners in the week following diagnosis of prostate cancer men are 8 times more likely than normal to commit suicide, and 11 times more likely to suffer a cardiovascular event.

Most of can relate to that heartache when we were first diagnosed, yet years later after living with PCa most of us have brushed it aside and are getting on with our lives, following the saying that 'I've got cancer, but cancer hasn't got me'

God knows how we can persuade the newly diagnosed that having PCa isn't that bad, because after all we wouldn't wish it on anyone, but it is a shame that so many have to go through the pain and heartache which follows diagnosis.

:)

Dave 

 

 

 

User
Posted 29 Mar 2016 at 22:21

I suppose the idea of writing it in a letter rather depends on what happened at that previous appointment. If the patient has been told his PSA is higher than it should be, and the free ratio is low (I assume you meant it was 8%?) so an MRI is needed to identify where to aim the biopsy needles, the medics may have felt they had already communicated that there is a problem. They wouldn't therefore see anything wrong with confirming again in a letter that there does indeed seem to be a need for the biopsy that the MRI was intended to inform.

If he hadn't understood the purpose of the MRI, then I can see why it would be a shock. Having said that, he is right bang in the range where 50% of men go on to be diagnosed (5.8 is a mid-range and at less than 10% free ratio around half of men have positive biopsies) there is no certainty that he does have cancer. Sometimes the grey areas seen on the scan are areas of inflammation / infection which could also cause the slightly raised PSA. Best not to run ahead and start imagining the worst, try to wait for whatever news the biopsies bring.

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

User
Posted 29 Mar 2016 at 22:39
Very Jenny

Prostate cancer can be dealt with, I won't say cured because I do not think that is the right word. I know of men who had surgery 16 years ago had no other treatment and life is almost normal again, yes there are side effects.

I also worked with a guy with an elevated PSA who had several mri scans and three biopsies and no cancer. So wait for the meetings etc and stay positive.

Thanks Chris

User
Posted 01 Apr 2016 at 12:03

thanks everyone - MRI showed up positive for Cancer on right hand edge of prostate - the disturbing thing was there is confusion with a spot on his pelvis (they have said the cancer is in his prostate but they aren't sure about a "spot "they have picked up.
Going for Biopsy in a few weeks - waiting on date.
Prostate 21cc i think so it is small but Consultant says its likely to be aggressive cancer (not sure how we knows but am guessing he is pre-warning us)
He is going back to speak to Radiologist about the "spot" as it is a game changer.

I will keep you updated!


Jen

User
Posted 01 Apr 2016 at 13:04

I think one of the hardest things to grasp about prostate cancer is that the word 'aggressive' doesn't necessarily mean what we think it means. In terms of how distorted the cells are, they are given a Gleason score which can be anything from 1 - 5, the two most common patterns are then added together. Below a 3 isn't really considered to be cancer so the lowest Gleason would be G6 (3+3). 'Aggressive' is used to describe anything from G7 (4+3) to G10 (5+5). 'Aggressive' is also used to describe a prostate cancer that is generating PSA of more than 10, or one that is staged as in both sides of the gland and has already started to move outside the gland.

Aggressive should not be confused with 'advanced'. There are plenty of men who had a not 'aggressive' cancer but are already terminally ill at diagnosis, and men with 'aggressive' PCa who go on to achieve a full remission.

The consultant may believe this is an aggressive cancer (although he must be using instinct rather than fact at this stage) but he apparently does not believe it to be particularly advanced otherwise the biopsies would be done immediately. The few weeks wait makes no sense at all; perhaps as already advised, you should ask them to clarify the delay.

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

User
Posted 01 Apr 2016 at 15:53

Thanks Lyn - I totally agree with you and will let you know how I get on.
Thanks as ever!

Jen

User
Posted 03 Apr 2016 at 10:05
Hi Jenny welcome to this community it really does offer support to you and your OH, no question or concern is out of bounds as we have found these past months. It is so scary when you first hear the word cancer and the waiting for test results seems to take forever but it does get easier when you have all the facts. If you feel like you are struggling give the call the pc nurse team they are great at helping you through. Keep in touch. Jx
User
Posted 04 Apr 2016 at 15:20

Thanks for the replies (Lyn your explanation was really helpful as was Dave's in fact everyone's)- Its been 10 days now since we got the letter and saw the Consultant 5 days ago - if anything we feel slightly worse with waves of panic coming and going. We are trying to be positive and carry on as normal (???!!!) OH played Golf at the weekend but its beginning to get to both of us. Still no news about the Biopsy date although as I mentioned its only been 5 days since we saw the Consultant.
The words "aggressive" and Pelvis "spot" still haunt me at night however Lyn - thank you for your explanation of the word "aggressive" that really helped. As for the "spot" we have no idea yet if it is cancer (its on the pubis) and we are really worried about that as it is a game changer.
PSA 5.8 Age 61 no symptoms.

Attempting to work but my brain is mush! - will also attempt to go back to the Gym at some point this week.
Fed up of crying and can't cry in front of Husband as he worries even more so I cry in a cupboard somewhere (much to the amusement of the labrador….)
Not told son yet waiting on Gleason score…. thats a whole new thread for advice I will need - we feel sick even thinking about that (so we won't for now).
I will keep you updated - thanks all.
Jen

User
Posted 04 Apr 2016 at 15:34
J

It might be worth chasing the biopsy date, I was due to have a CT scan done at our sister hospital, they had rejected the request due to lack of info, but did not tell anyone. That was not the only time things had got lost.

Easy to say but stay positive.

Thanks Chris

User
Posted 04 Apr 2016 at 15:42

Good advice thanks Chris - Its Easter 2 weeks up here just now so that might be causing at least some delay - however if we haven't heard by Wednesday I will chase definitely.
thank you
J

User
Posted 05 Apr 2016 at 14:12

Well the saga continues! - got the letter for Biopsy date only to find the letter was addressed to another man….!
Biopsy next Tuesday 12th at 1330hrs.
It says 2-4 weeks for the results?

how long did you find it took to get the results?
Husband 8 days clear of aspirin it said 10 but when we rang they said 8 days clearance was ok.

Thoughts?

Many thanks as usual!

Jen

User
Posted 05 Apr 2016 at 14:20
Hi Jen,

I had the results of my biopsy 3 weeks later at my follow up appointment in the urology department at the hospital.

Hope this helps.

Best wishes ,

John

User
Posted 05 Apr 2016 at 15:49

Thanks as ever John

Jen

User
Posted 05 Apr 2016 at 16:06
J

I had my biopsy on the Wednesday and had an appointment with my consultant the following Wednesday . In between the two dates the results were discussed by the multi disciplinary team. Following the result from the consultant. I had a meeting with the Uro/ onco specialist nurse.

I went on my own to see the consultant expecting a negative result, in hindsight not a good idea.

Hope yours is good news.

Not good about the mistake on the letter and I moan about the NHS as much as anyone, but where would we be without them.

My histology post RARP took three weeks and the consultant phoned me with the result.

Thanks Chris

Edited by member 05 Apr 2016 at 16:08  | Reason: Not specified

User
Posted 05 Apr 2016 at 21:48

There can be cock ups along the way. After 4 weeks I had heard nothing about the results of my biopsy so I rang the secretary of my urologist. Much scrambling and I was offered an appointment to see him within a few days. At that appointment I was given the bad news. The urologist was suitably angry at the delay and muttered about heads rolling. It turned out my case had been discussed by the multi disciplinary team on target and the delay in notification was an administrative issue. As things turned out there was no harm done and my treatment has been started well within NICE guidelines but the moral of the story is chase things up if you haven't heard by about 3 weeks.

User
Posted 06 Apr 2016 at 19:43

Hi Jenny

I know it is a shock when the big c is mentioned but don't despair.

I like Dave had a high PSA which was 32, Gleason of 9. had surgery last December and returned to full time work at start of March so just getting on with life before I go for RT in June.

I know it is hard but once you get all the facts about the disease then you will be able to handle it a lot better, still worrying though but at least you know what you are fighting.

Don't get me wrong I have had my moments and my wife took it really bad and still asks the question why us. there is still a life to be had even with PCa as Dave has already stated he was diagnosed 9 years ago and still enjoying life with his grandkids.

This web site will give you all the information that you will need and the nurses are superb, they have supported me a few times especially at the beginning.

Stay strong.

Sandy

 
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