Roller coaster Ride

User

Posted 25 Mar 2016 at 07:53

Hello

OH has just been confirmed as having PC, PSA 6.6, T2 3+3 been told that this good (fluffy kitten sitting on OH lap and not a roaring tiger) consultants words. Awaiting a MRI scan appointment. OH not really talking about it apart from I never go in to a meeting with all the facts, me I feel as though am on a roller coaster ride and after the initial shock am coping.

User

Posted 26 Mar 2016 at 12:58

Good to hear from you LynRob.

Don't forget to get hold of that Toolkit in readiness for the discussions. It does help.

My own husband was on Active Surveillance for a year before he had to make a decision. It gave us breathing space.

A lot depends on the individual as to whether they can live with the thought of untreated cancer in their body.

It is a really really good idea not to rush into any of the treatments unless you are sure it's the one for you.

Good luck both of you.

We can't control the winds - but we can adjust our sails

User

Posted 01 Oct 2016 at 14:20

The PSA score itself is not always the worry. Some people have low PSA and very aggressive cancer. Some have ridiculously high PSA but a slower cancer. The most important thing often is the rate of change of PSA. That is indicating concern. My prostate was about 34cc but my PSA rose from 15 to 43 in under a year. Scans were quite inconclusive. But I had a very aggressive cancer attached to my bladder and spread to my lymph nodes. I had the op but it was too late 😁😁

If life gives you lemons , then make lemonade

User

Posted 25 Mar 2016 at 08:48

Hello LynRob and welcome to the site.

3+3 is "good", it could have been a lot worse. You consultant has said your husband is nursing a pussy cat, so much better than the possible tiger so please take heart from that.

T2 3+3 means that your OH is likely to be eligible for most of the available treatments, including possible Active Surveillance which is doing nothing much at all except being closely monitored. Was that mentioned?

If you go to publications on this site, there is something called The Toolkit. You can download it or ring one of the nurses and ask for a hard copy to be sent to you.

It's full of information regarding diagnosis, treatments, possible side effects and is a good thing to have by your side.

Before the next appointment, use the Toolkit to formulate questions you might have. Write them down and take a pen with your notebook and write down the answers. You wont take it all in otherwise.

You are on a rollercoaster at the moment. We all understand what that feels like since we've all experienced it. IT will get better once a treatment plan is in place, just difficult to get your head round right now.

Anything you want to know please ask us, somebody is bound to be able to help with an answer.

No questions are taboo, as long as they are politely worded ! If something is too personal then you can click on the name under a picture and private message that person and ask for help. If they can't they may know of another member with that information. Having said all that, we are not a shy lot and have a real desire to help others who are just starting on the road that many of us have been travelling on for a long time.

All the best. One thing to take to heart is that you are no longer alone on your journey. Best not to use Google for information as it's not all relevant

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 25 Mar 2016 at 15:10

Hi lynRob and welcome from me too.

I hope that all goes from you both. It can be a scary time but you'll soon learn to adapt to what lies ahead.

As Sandra has said there is much support from each of us here. We all have different experiences and have had variety of treatments, so someone somewhere will be able to help you.

Since diagnosis I very quickly learnt to lose my inhibitions , as Sandra knows all too well !

All the best

John

User

Posted 25 Mar 2016 at 20:02

Hi Lyn and a welcome to this site from me as well, it is somewhere that we do not want to be but now that you are here I am sure all questions will be answered for you in a way that you can understand.

Someone will know how to help or what direction to point you, when your OH goes for his appointments try and go with him as two sets of ears are better than one.

Also try and remain positive rather than negative, you will cope better without stress levels hiked up from worrying unnecessarily about things that you think might happen when really it is best to find out what is happening and deal with that one thing at a time.

I also know that John has lost his inhibitions and what really happens is that we all lose ours as well, but helping others to come to terms with the diagnosis and whatever treatment plan they are on is the main priority and sometimes talking about very personal things is easier as there is no face to face embarrassing moments.

You can always call the specialist nurse on this site for a one to one chat if you are unsure or want questions answered.

Best wishes and hope the treatment goes well

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 25 Mar 2016 at 20:43

Hi.lyn
Hello from me as well
Inhibitions I am now a hugger and not a handshaker

Regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 16 May 2016 at 20:40

Good news to have a date. Hope it goes well for you.

John

User

Posted 24 Jun 2016 at 18:25

My John's ended up at 6.3 and was originally classed as T3a but that changed on biopsy and scan.

If you haven't already looked then click on my avatar and you can follow his active surveillance journey followed by seed Brachytherapy (although I hope your husband's AS lasts longer than John's 1 year)

Use this time to do all the things you've planned to do, just in case. You never know what's round the corner and whatever it may be could well be many years in the future but enjoy life now.

It's all the more precious anyway, once PS has been diagnosed

We can't control the winds - but we can adjust our sails

User

Posted 03 Oct 2016 at 20:32

If he had an enlaged prostate then his PSA would be expected to be a bit higher than the average. As his PSA is rising but his prostate remains small, the urologist is assuming that the PSA rise is being generated by active cancer rather than benign causes.

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

User

Posted 19 Jan 2017 at 22:00

Hi Lyn I wish you luck with your future treatment and decisions for the next options on the journey but if like me i don't like the wait and prefer to move on.

I jumped at the Brachytherapy option to hopefully give me a way forward and get maybe the right result in my mind for a little normality,right or wrong,but at 70 i think it will give me a few more year to travel the world as i feel it's not where you finish your life but the quality even if you are firing blanks.

But i may have it totally wrong.

Regards John.

User

Posted 19 Jan 2017 at 22:16

Hi Lyn

Sorry to see you are both now facing that decision. Take the time to read the various other posts on the different treatments, and go prepared to your appointment with questions relating to the treatments.

I found that the surgeon and oncologist wouldn't have given me as much information about the treatments - the side effects- as I discovered here, and subsequently I asked the questions of them.

In my area of East Kent they run an afternoon session for those about to undergo or considering RP. Ask if they offer that, as it is worth attending as part of your decision process.

Good luck.

Chris

User

Posted 25 Jan 2017 at 07:15

OH has seen consultant yesterday, as his PSA is continuing to rise has advised him that it time to consider his options, OH has decided that he would like another MRI scan and wants to wait for the results of that before he makes a decision, consultant then asked him if there was no change from MRI last year, what next, which he said he would go for a biopsy which she is quite happy with him to do

User

Posted 25 Jan 2017 at 08:10

At least the consultant isn't pushing him. Just take your time and be sure that the final decision is one you can be happy with for the rest of your long life

We can't control the winds - but we can adjust our sails

User

Posted 25 Mar 2017 at 08:14

Thanks for your comments Lyn, my OH has been very fortunate that his PCa was picked up very early and it has given us time to think over all our options, the hospital where he attends have a weekly meeting with all the departments and discuss what would be the best options regarding treatment, from the results and scan that they have for each patient. The surgeon that we have been seeing since last year would have booked him in straight away for surgery but my OH decided that as he has no symptoms he would go on AS, he has always leaned towards surgery as being the best option for him. After seeing the scans yesterday and you can clearly see the bulge ,my husband told the consultant that he would get back to her. We are now at odds as I would like him to get the operation done sooner rather than later and he would like to wait till August as this not a very busy month at work. Am thinking why wait when you have decided that surgery is the way he wants to go. After sleeping on, he has said as we are off on holiday next week he will tell his boss when he goes back to work a week on Monday, his work calendar is booked up till the end of June, so at the moment he is free from July onwards, I just panicked when he started speaking about waiting till August or even September. My OH has never lost a night sleep since he has been diagnosed me on the other hand have had quite a few.

User

Posted 25 Mar 2017 at 11:27

That's how it has been in our house for 7 years!!!! It seems his work is very important to him and if waiting until the summer is less stressful for him then it may be better in terms of recovery. It would also mean that he could enjoy some nice weather (hopefully) while he is off work and you could perhaps get away again.

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

User

Posted 17 Apr 2017 at 09:54

Prostate aerobics is the app I used, has alarms, variety of routines and audio prompts.

Tips post op, do not get constipated, take it easy,keep mobile but no marathons.

Hope all goes to plan.

Thanks Chris

User

Posted 09 May 2017 at 07:05

Surgery date confirmed in on 30th May, operation on the 31st and hopefully out on the 1st June,

User

Posted 09 May 2017 at 07:21

Good luck to your other half for the 31st. Hope all goes well for him.

We can't control the winds - but we can adjust our sails

User

Posted 01 Jun 2017 at 19:23

Great news , so pleased for you both. Can't stress enough to make him recover. Not much pain but major op internally. Don't even let him put the bags out !! Best wishes and well done

If life gives you lemons , then make lemonade

User

Posted 01 Jun 2017 at 19:35

Glad that's done and dusted for him .

Now it's "just" the recovery time.

As Chris says please tell your husband to be careful. Healing inside will take a long time and it's easy to over exert yourself after the op partly due to relief that it's all over and partly to prove to yourself that you are strong enough to recover quickly.

It's not a race, he'll do better in the long run if he takes it slow and steady, gradually increasing his activities without exhausting himself.

Best wishes for a speedy recovery

******

We can't control the winds - but we can adjust our sails

User

Posted 01 Jun 2017 at 19:53

Best wishes on OH recovery
Debby

Show Most Thanked Posts

User

Posted 25 Mar 2016 at 08:48

Hello LynRob and welcome to the site.

3+3 is "good", it could have been a lot worse. You consultant has said your husband is nursing a pussy cat, so much better than the possible tiger so please take heart from that.

If you go to publications on this site, there is something called The Toolkit. You can download it or ring one of the nurses and ask for a hard copy to be sent to you.

It's full of information regarding diagnosis, treatments, possible side effects and is a good thing to have by your side.

Before the next appointment, use the Toolkit to formulate questions you might have. Write them down and take a pen with your notebook and write down the answers. You wont take it all in otherwise.

Anything you want to know please ask us, somebody is bound to be able to help with an answer.

All the best. One thing to take to heart is that you are no longer alone on your journey. Best not to use Google for information as it's not all relevant

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 25 Mar 2016 at 15:10

Hi lynRob and welcome from me too.

I hope that all goes from you both. It can be a scary time but you'll soon learn to adapt to what lies ahead.

As Sandra has said there is much support from each of us here. We all have different experiences and have had variety of treatments, so someone somewhere will be able to help you.

Since diagnosis I very quickly learnt to lose my inhibitions , as Sandra knows all too well !

All the best

John

User

Posted 25 Mar 2016 at 20:02

Someone will know how to help or what direction to point you, when your OH goes for his appointments try and go with him as two sets of ears are better than one.

You can always call the specialist nurse on this site for a one to one chat if you are unsure or want questions answered.

Best wishes and hope the treatment goes well

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 25 Mar 2016 at 20:43

Hi.lyn
Hello from me as well
Inhibitions I am now a hugger and not a handshaker

Regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 26 Mar 2016 at 11:23

When OH received a call back from the hospital after his biopsy we did not realise that our meeting would be with the surgeon who did say that we might consider surgery, my OH did discuss Active Surveillance with her, we where told that its his choice what he wants to do.

My OH who is 54 ended up in hospital in Germany last May with what we thought was a bad urine infection where they took a blood test and is PSA turned out to be 44, since then after around 3 blood test his PSA was sitting at 6.6 and was advised to go for a biopsy which he reluctancy did which confirmed he had PC. He is otherwise fit and healthy and no other problems. Will wait and see what the MRI scan says and will take it from there, have really appreciated all the posting on this site and feel when we sit down to discuss our plan of action we will have a better understanding what is being said

User

Posted 26 Mar 2016 at 12:58

Good to hear from you LynRob.

Don't forget to get hold of that Toolkit in readiness for the discussions. It does help.

My own husband was on Active Surveillance for a year before he had to make a decision. It gave us breathing space.

A lot depends on the individual as to whether they can live with the thought of untreated cancer in their body.

It is a really really good idea not to rush into any of the treatments unless you are sure it's the one for you.

Good luck both of you.

We can't control the winds - but we can adjust our sails

User

Posted 11 Apr 2016 at 14:28

4 weeks today since my OH was told he had PC, still waiting for an appointment for MRI scan should we chase them up?

User

Posted 11 Apr 2016 at 15:08

They tend to leave a gap between biopsy and scan because the bruising/bleeding of the biopsy makes the scan results less reliable. But if that is what they are waiting for, they could have explained that to you and reduced your anxiety so yes, a call to your allocated nurse is probably a good idea

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

User

Posted 11 Apr 2016 at 15:28

I had my MRI before biopsy. Not sure why so many others on here appear to have had a biopsy first?.

User

Posted 11 Apr 2016 at 15:50

Lynrob

I had my MRI scan within a week of my biopsy, a bone scan was done within about two weeks and a CT scan should have been done within a couple of weeks but was done after 4 months due to two sister hospitals not talking to each other.

On the MRI scan there was a comment about too much haemorrhage to get a true picture of the prostate, but they do scan some of the surrounding organs presumably for signs of spread.

I was waiting for a new robot to be built at our local hospital. My stats were PSA 7.7 and Gleason 4+3 and my second opinion consultant was happy with a 4 month delay.

Definitely chase up the appointments even if it is just to make sure you have not been overlooked, with the current strikes etc and hospitals changing over to computerised records things can get lost. If they are waiting for the prostate to settle down at least you will know what is happening.

Thanks Chris

User

Posted 11 Apr 2016 at 16:09

Originally Posted by: Online Community Member

I had my MRI before biopsy. Not sure why so many others on here appear to have had a biopsy first?.

Because although MRI then biopsy is increasingly seen as a more sensible order to do things, not all hospitals / urologists do it yet. There are potential problems either way round - if MRI is used to determine whether a biopsy is needed then there is a risk because the cancer doesn't always show on a scan. If biopsy is used first, it is the equivalent of sticking a pin in a fruit cake and hoping to spear a cherry. So false 'all clear' is possible whichever order you do it :-(

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

User

Posted 11 Apr 2016 at 18:23

I would say chase the MRI date as you should get treatment within 18 weeks of being referred.

I had a MRI and then biopsy, but my Urologist warned me that I would be having a biopsy (due to high PSA count) and the MRI was to see if it would be a trus or template biopsy. In my case the MRI was normal, but my Urologist still wanted me to have a template biopsy.

For peace of mind as a patient this appears to be best way round as you know what is going to happen. The only issue that I had was trying to get a clear date for my biopsy, but as you can see from my profile everything happened pretty quickly.

Edited by member 11 Apr 2016 at 18:24 | Reason: Not specified

User

Posted 11 Apr 2016 at 19:09

Hi,

Its actually been 7 weeks since the biopsy so think for piece of mind we will chase them up.

Thanks

User

Posted 04 May 2016 at 18:02

After chasing up the consultants secretary almost 2 weeks ago regarding an MRI scan to be told by her that she has a note to book my OH for an MRI scan but it had not been done, last Wednesday my OH decided to see his doctor to see if he could do anything, his doctor wrote to the consultant asking for a date for a MRI scan and today OH got a call from the doctors surgery to come up and get a blood test, turns out the consultant wants to check his kidney function, while he was there he asked if he could also get a PSA blood test done as its been almost 6 months since his last one, should know the results by Monday at the latest, fingers crossed we will get a date for an MRI scan soon

User

Posted 16 May 2016 at 19:05

Update, after getting the runaround with the hospital today, have now finally got a date of the MRI scan which is the 31st May, will be 14 weeks since biopsy, bloods done last week and PSA has risen to 7.3 from 6.6 in November. Just glad that we have a date

User

Posted 16 May 2016 at 20:40

Good news to have a date. Hope it goes well for you.

John

User

Posted 24 Jun 2016 at 15:18

Just back from getting the results of OH MRI scan, PC contained now T2c (was T2a after biopsy) as MRI scan has picked up something on the other side. OH has decided to do active surveillance and will be monitored closely next PSA test in September with a talk with the consultant. I feel that a huge weight has been lifted from my shoulders

User

Posted 24 Jun 2016 at 15:58

Glad you feel better about it now LynRob.

With active surveillance you get a bit of breathing space at least.

Just out of nosiness Lyn, what was the latest PSA?

___________________________________________________________

Edited by member 24 Jun 2016 at 15:59 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 24 Jun 2016 at 16:23

PSA was 7.3

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