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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 15:20

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
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.

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 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 15:28

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 16:08

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 16:28
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 16:50
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 17:09

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 19:23

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 19:24  | Reason: Not specified

User
Posted 11 Apr 2016 at 20:09

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 19:02

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 20:05

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 21:40
Good news to have a date. Hope it goes well for you.

John

User
Posted 24 Jun 2016 at 16:18

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 16:58

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 16:59  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 24 Jun 2016 at 17:23

PSA was 7.3

User
Posted 24 Jun 2016 at 19:25

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 01 Oct 2016 at 13:54

OH has seen the consultant, PSA is slowly going up, 6.6, 7.3 and now 8.2 she has said that because he has a small prostrate (30cc) that the PSA is causing concern, is pushing him to have surgery but says that time is still on his side, next PSA test in December along with app with consultant, she has told him to think about surgery in the New Year. Confused about size and PSA can anybody explain.  Thanks

Edited by member 01 Oct 2016 at 13:55  | Reason: Not specified

User
Posted 01 Oct 2016 at 15:20

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 03 Oct 2016 at 19:59

OH has seen the consultant, PSA is slowly going up, 6.6, 7.3 and now 8.2 she has said that because he has a small prostrate (30cc) that the PSA is causing concern, is pushing him to have surgery but says that time is still on his side, next PSA test in December along with app with consultant, she has told him to think about surgery in the New Year. Confused about size and PSA can anybody explain. Thanks

User
Posted 03 Oct 2016 at 21:32

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 03 Oct 2016 at 22:35

Thanks Lyn, will see what his PSA is in December, at least it will give us some time before we decide which road to go down.

User
Posted 19 Jan 2017 at 19:40

Update OH just had his PSA results and his PSA is up again to 9.7, we see the consultant on Tuesday, look as though he will have to come off AS and decide what road we take from here

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 Jan 2017 at 09:00

Hi there,

Just checking you have seen that Prostate Xancwr UK have published info on where MpNRI machines are available in the UK?

In my humble opinion I would want the MpMRI . It appears even if they have the machine it is not always bring used for Diagnisis so you may need to be 'pushy'

Good luck

Clare

User
Posted 25 Jan 2017 at 13:47

We are very lucky that the hospital that my OH attends has a Mp MRI and that is what he is getting

User
Posted 25 Jan 2017 at 16:30

That is fab indeed

User
Posted 24 Mar 2017 at 20:45

Its been a year since my OH (55yrs) was diagnosed with Prostrate cancer and having met with his consultant he has been advised that AS is no longer a option, his PSA has risen from 9.7 last month to 10.2 and the MRI scan he had on the 15 February is showing that the cancer is being to bulge out of the prostrate gland but is still contained. My OH said that he was not ready to make the decision and that he would go home and think about. He did mention to the consultant that work wise August would be good,the consultant has left him to give her a call back to be put on the waiting list wish could mean that it could be removed in about 8 weeks or to book in for August. I know that I would like him to get it out sooner than later, we are off on holiday next week and when he goes back to work he will have a word with his boss. My OH travels a lot with his work this year alone he has been on 24 flights so far, he is very concerned about incontinence and how this will effect his travelling for work.  His Gleason score was 3+3=6, T2c, any view and advise, Thanks

User
Posted 24 Mar 2017 at 22:05

L, has he seen an oncologist for advice about alternatives to surgery? He is probably suitable for brachytherapy which would be less likely to impact on his work. He could also explore external beam radiotherapy although he wouldn't be able to travel during that period as he would need to go to the hospital for a short appointment every day (usually for 4 or 7 weeks) .

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

User
Posted 24 Mar 2017 at 22:23

My OH has only ever seen a surgeon, she has discussed both brachytherapy and external beam radiotherapy with him and her advice is with his age 55  that it would compromise future surgical options

 

User
Posted 24 Mar 2017 at 23:34

But he isn't much fancying the surgery anyway. A surgeon is bound to lean towards surgery - an oncologist will give you the best advice re alternatives.

Avoiding a treatment that is likely to be just as successful but with far fewer long term side effects just because it rules out surgery later could be flawed thinking - needing any further treatment later dramatically reduces the risk of ever getting remission so best option is to choose the treatment most likely to get the cancer first time round.

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

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 09:01

OH is now on a waiting list for Robotic Surgery (8 weeks), surgeon hopes to do nerve saving on one side and has made no promises on the other, pre-assessment tomorrow. Has started doing his pelvic floor exercises, can anyone recommend an app as he sometimes forgets, he does keep himself quite fit by doing Pilates, swimming and various things at the gym.

Looking for any advice for when OH gets out of the hospital, thanks

User
Posted 17 Apr 2017 at 10:54
L

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 17 Apr 2017 at 11:28

Hi Lynda

You seem to have things in good order and a strong relationship. Once decision made then issues actually tend to get easier.

- see my profile.    I have a great wife to 'rein' me in from doing too much, post op.    From a man's perspective and only 'guessing' how hubby might be feeling :-

Some tips :  Get him (GP ? )  to sign off / book off 6 weeks recovery ?!   Chill out and enjoy yourselves.  Obviously catheter is in for a min. of 7 days .  I was so so fortunate and dry immediately.   I caught up with gardening and DIY, as we were also moving house,  so we were both pleased. The only main problem I had , as Chris has posted, was major constipation ! I think I should have taken far more laxative, however I  think the aesthetic and pain killers had 'paralysed' the gut, and tummy was well blown up.   I should have seen GP looking back, however I didn't want any bother.  Thankfully just before catheter came out, everything started to move ...  lol ..  

I do joke, however pre op - NHS was excellent. Post op, it's very much on your own from my experience  (apart from the PSA tests). We basically read the release notes and got on with life.    

Post op , is very unpredictable and obviously different for everyone,  tiredness for some reason suddenly creaps up (mentally and physically) and disappears as quick.  No different +2 yrs on, I have learnt to ration and control energy supply.

Also - check out with consulate/GP re. flying, ie pressure changes.  :   DVT  - Although I stayed in just one night , seems standard practise to prescribe self injecting Fragmin (deltaparin), blood thinning.  I was 95% active/ mobile after about a week and actually didn't self inject the full course (naughty naughty) .  Logic being I was walking steadily 2 or 3 miles a day , not sitting around.   I wasn't bothered about self injecting, however I was on zero meds and never keen to use chemicals I don't perceive I needed.  

Just a 'heads up' in case hubby feels like jet setting ..   there maybe will be company Insurance / HR  implications anyway   (I'm assuming he's not self employed).    

All the best for 18th. 

Gordon

Edited by member 17 Apr 2017 at 11:43  | Reason: Not specified

User
Posted 17 Apr 2017 at 13:09

Hi all.

Good luck, Lynda! I hope we both can breathe after de operation.

I have a questions for Gordon.

After op, you stopped gardening or you continued to garden?

Sorry, I can't get the idea in English.

Any more advices for those who are shortly going to theatre. I would appreciate them.

Best wishes,

Lola.

User
Posted 17 Apr 2017 at 16:26
Hi.

For Lola.

I've just finished planting potatoes this morning. So love gardening.

Both vegetable and flowers. I have dug for about 2 hours and clearing weeds. Only about 10c here this morning so comfortable.

At 62. I just tend to pace myself. No problems with any leakages !!

I consider I have been very fortunate and surgeon took great care..

All the best to yourself...

Gordon

User
Posted 17 Apr 2017 at 18:11

Thanks for your reply, Gordon!!

I'm glad to know you are doing so well at the same same I become encouraged. Right now I'm going to tell my OH.

Actually, he was going to dig today in order to plant a nice glycine that I had bought yesterday at the village fair. as we were afraid he couldn't do when back from hospital in Madrid.

Continue to be ok.

Lola.

User
Posted 09 May 2017 at 08:05

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

User
Posted 09 May 2017 at 08:21

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 10 May 2017 at 17:03
Hi Lynda

Not long now. All the best.

Had 2 year psa last week. . <0.01 . time flies. So fortunate we feel.

Gordon

User
Posted 01 Jun 2017 at 19:44

OH has had his surgery and is now at home, all went well and nerves where saved, doing really well but taken it easy, he's not a fan of the catheter. Just relieved to have him home.

 
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