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My dad has just been diagnosed with PC... need support 😔

User
Posted 29 May 2017 19:05:01(UTC)
Hi all,

My dad has just told me and my brother that he has been diagnosed with Early (Localised) PC and that he has opted to have a Radical Prostatectomy in 4 weeks time. Alternative options given were Active Survellaine or Radiotherapty.

His PSA levels were borderline during his annual screening in Feb 2017 and since then has had Ultrasound, MRI and Biopsies. He's had no symptoms of PC and is otherwise fit and well so the confirmed diagnosis has been a real shock.
Just incase my Bio or Signature doesn't show up (first post so I'm a newbie still learning how to navigate the site), I've included what I hope is all the helpful info I know in this post...

TNM Staging: T1
N0 (no cancer in Lymph Nodes)
M0 (cancer not spread to any other parts of the body)
Gleason Score: 6
Age: 59 years

My dad has reassured us that his PC is curable and the primary reason he has opted for a Radical Prostatectomy at this stage is because he's going to become a granddad for the first time in November and doesn't want to risk decreasing his life span by going for active surveillance or attempting radiotherapy. There is no plan for any further treatment after the op and this has been conveyed as the "cure".

We've talked to his 3 specialist nurses/surgeons who reassured us that he's predicated to be in hospital for 2-5 days after his operation and will then have a catheter in place for 1-2 weeks with a community nurse visiting the home for support to manage this. In terms of his recovery we've been told no heavy lifting or driving for 6 weeks and no return to work for 12 weeks because he'll be lacking in energy.

I felt reassured after reading all the leaflets about his "curable PC" and the operation and after talking to his specialist cancer nurse, however since then I've read on various places online that even with "curable PC" 25% of men relapse within 5 years of a Radical Prostatectomy. So for me there is now a lot of confusion around the word "curable" and I'm admittedly absolutely terrified. My dad is adamant the operation will cure the PC and said this is indicated by his Gleason score (6) and has been discussed in detail with his 3 specialists.

I think I just need some support from people who understand PC to help me to make sense of all this information. At the moment my dad has made it clear that he wants all our lives to continue as planned (he himself is still working and doing all his 'normal' activities), his main concern is being recovered enough to go down the footy once the season starts in August! and he has no concern that he won't be around as normal for me, my brother and his grandchildren.

He's aware that he may have urgency and incontinence following his radical prostatectomy and that this may be a permanent side effect of the procedure, which he admits will be an annoyance and require some lifestyle changes/adaptions... but other than that he says we have nothing to worry about.

Is he right?... Should I be terrified or should I be relieved that they caught it so early in an Annual Screening test which means it is "curable"?
At the moment I don't know how I'm meant to feel or what I'm supposed to do. Please help,

Little Blue 💙

Early Localised PC
TNM Staging: T1 / N0 / M0
Gleason Score: 6
Age: 59
User
Posted 29 May 2017 20:39:50(UTC)

Hi Little Blue

T2 T3 guys are more likely to have recurrence as cells can escape the prostate gland more easily - some of those will have radiotherapy to mop up any stray cells in the prostate bed so hence still curable. So whilst there can never be a guarantee T1 at G6 with borderline PSA reads quite curable

Relax

Ray

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User
Posted 29 May 2017 23:16:53(UTC)

Little blue, very few cancer specialists really talk about cure; the correct terminology (and what your dad is aiming for) is full remission. It is true that a significant proportion of men find their cancer comes back within 5 or 10 years of having radical treatment (that means treatment that is aiming for 'cure' or 'remission') but as Ray says, they will tend to be T2 or T3 instead of your dad's T1.

There are no guarantees - my dad and my husband both had surgery and then the cancer came back - so I hope your dad has not been misled into believing that it is certain he will be cured. But all in all, he has had good advice, has been sensible and seen 3 different specialists and has chosen the treatment that they believe gives him the best chance of getting rid of the cancer. As Ray says, you need to try to relax - no point worrying about what-ifs that may never happen.

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


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Posted 30 May 2017 08:21:44(UTC)

Hi Little Blue

My dad's journey of PC sounds similar to yours but is a little further along.

My dad was diagnosed in January, aged 58, Gleason 7, contained within prostate. My dad opted for open prostatectomy so a tad different to your dad. He had this op at the end of Feb. Whilst the surgery was major and it has been an emotional roller coaster, he is well on the road to recovery. He had a catheter for a couple of weeks. Once this was taken out he had a couple of weeks of mild incontinence but since then he has been fully continent.

My dad has had his post op follow up and PSA test and he is over the moon at 0.004. He doesn't have to be seen for another 6 months and he is getting on with life.

He is a fit man, loves walking but does still struggle with fatigue. Dad says he can cope with this. He's just relieved that the surgery was a success.

The oddest thing for me was that my dad was asymptomatic when diagnosed. He was active and seemingly super healthy and it was odd knowing that dad was going to put himself through something that would be traumatic and make him poorly in order to get rid of a cancer that wasn't even affecting him, at least visibly.

I wish you and your dad well on this journey. Sending you the very best wishes.

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User
Posted 29 May 2017 20:39:50(UTC)

Hi Little Blue

T2 T3 guys are more likely to have recurrence as cells can escape the prostate gland more easily - some of those will have radiotherapy to mop up any stray cells in the prostate bed so hence still curable. So whilst there can never be a guarantee T1 at G6 with borderline PSA reads quite curable

Relax

Ray

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User
Posted 29 May 2017 23:16:53(UTC)

Little blue, very few cancer specialists really talk about cure; the correct terminology (and what your dad is aiming for) is full remission. It is true that a significant proportion of men find their cancer comes back within 5 or 10 years of having radical treatment (that means treatment that is aiming for 'cure' or 'remission') but as Ray says, they will tend to be T2 or T3 instead of your dad's T1.

There are no guarantees - my dad and my husband both had surgery and then the cancer came back - so I hope your dad has not been misled into believing that it is certain he will be cured. But all in all, he has had good advice, has been sensible and seen 3 different specialists and has chosen the treatment that they believe gives him the best chance of getting rid of the cancer. As Ray says, you need to try to relax - no point worrying about what-ifs that may never happen.

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


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Posted 30 May 2017 08:21:44(UTC)

Hi Little Blue

My dad's journey of PC sounds similar to yours but is a little further along.

My dad was diagnosed in January, aged 58, Gleason 7, contained within prostate. My dad opted for open prostatectomy so a tad different to your dad. He had this op at the end of Feb. Whilst the surgery was major and it has been an emotional roller coaster, he is well on the road to recovery. He had a catheter for a couple of weeks. Once this was taken out he had a couple of weeks of mild incontinence but since then he has been fully continent.

My dad has had his post op follow up and PSA test and he is over the moon at 0.004. He doesn't have to be seen for another 6 months and he is getting on with life.

He is a fit man, loves walking but does still struggle with fatigue. Dad says he can cope with this. He's just relieved that the surgery was a success.

The oddest thing for me was that my dad was asymptomatic when diagnosed. He was active and seemingly super healthy and it was odd knowing that dad was going to put himself through something that would be traumatic and make him poorly in order to get rid of a cancer that wasn't even affecting him, at least visibly.

I wish you and your dad well on this journey. Sending you the very best wishes.

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Posted 30 May 2017 13:28:49(UTC)

Little Blue, I don't think you have to worry too much.

My husband, 68, has had robotic prostatectomy one month ago. Gleason 7, PSA 4'2, stage T2a. The doctor and we are quite happy. He'll be having first control after surgery in two weeks time. He is almost fully continent although he had been feeling poorly because of pain and tireness during these weeks.

Just think your dad is T1.

You can never say it is cured, as Lynn wrote above, but please, don't panic. There is no reason why.

The best to your dad and family,

Lola

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Posted 30 May 2017 13:29:16(UTC)
Thank you all for your reassuring words and for making it all feel a bit clearer in my mind.

Bluebell, our dad's journeys do sound very similar, it's very reassuring to hear that your dad is making a good recovery from his op and I'm really happy to know that his surgery was a success, that's fantastic news for you and your family.

The recovery you describe sounds similar to what we have been told to expect (2 weeks catheter followed by a brief period of incontinence and somewhat lacking in energy for some time afterwards), given that both our dad's are fit and active and both asymptomatic prior to PC diagnosis I am now feeling hopeful that his recovery and operation will be free of complications and a success.

May I ask what is the difference between an Open Prostatectomy and a Radical Prostatectomy?

Any advice anyone can give me on how best to support my dad will be greatly appreciated.

I think the 2 weeks after the operation will be the biggest emotional hurdle for him as he is very independent and as I've mentioned before very active normally. I myself have had my bladder removed amongst various other major ops, so I'm aware of the potential impact the catheter and no driving/rest up rules may have on his wellbeing. He has always been there for us and has minimised the impact of my diagnosis on me so I would really like to be able to do the same for him now that he is facing something terrifying.

I will 100% be the designated driver to the footy which is the only thing he's asked of me since sharing the news! and I've already arranged to take 2 weeks off work following his op to be available to support him during his recovery. I won't space invade as from my own experience I know this can be highly irritating but at least if I'm at home rather than at work I'm close enough to be there if he needs me (we live in the same street).

Thank you all again for taking the time to offer support & reassurance. I will try to relax now I promise and just focus on supporting my dad through his *fingers crossed* successful op and recovery.

Little Blue 💙
Early Localised PC
TNM Staging: T1 / N0 / M0
Gleason Score: 6
Age: 59
User
Posted 30 May 2017 15:42:40(UTC)

There is no difference between radical prostatectomy and open prostatectomy. Radical just means that it is the primary treatment option rather than being salvage (treatment done if/when a first treatment fails) or adjuvant (treatment given at the same time or straight after radical option to make it more successful)

The different radical prostatectomies (RP) are:-
- open (retropubic) RP - a large cut is made in the lower belly just above the pubic bone, needs more stitches and rather longer time in hospital and off work
- laparoscopic RP - keyhole surgery, usually only a day or 2 in hospital - some men get back to work quicker than with open
- Da Vinci or robotic RP - keyhole surgery and the surgeon uses robotic arms rather than his hands - benefits as for keyhole
- perineal RP - open surgery with the cut made between the scrotum and anus (not so common but necessary for some men that have had major abdominal surgery in the past, or have had complex mesh repair for hernias), pain / discomfort can be worse than for other RPs for a while due to it being the bit you sit on.

Interestingly, there is no difference in terms of outcomes between open RP, keyhole and robotic (the NHS determines outcomes as a) no recurrence 5 years post op b) 10 year survival c) % of men that are still incontinent 12 months post-op and d) % of men that are still impotent 12 months post op. There is also no difference (for men with T1 diagnosis) in 10 year survival between men that have the surgery, men who have radiotherapy and men that choose to have no treatment and just have careful monitoring.

Since there is virtually no difference in outcomes (but see below), the choice between open and keyhole RP becomes one of convenience and individual circumstances:-
- keyhole needs less time in hospital but a longer operation so more general anaesthetic
- keyhole requires the man to be tipped head down which means some men with heart problems can't have that option
- keyhole has much smaller scars and less blood loss so usually quicker recovery time
- some hospitals cannot remove lymph nodes in keyhole so if the lymph nodes are suspect, open RP becomes a safer choice
- previous ops like appendectomy can leave scar tissue where the keyhole holes need to be
- if the tumour is at the very edge of the gland some surgeons prefer to be able to get their hand in and feel rather than rely on camera images
- recent Europe-wide research suggests that permanent incontinence and permanent ED is slightly more likely with robotic than with open

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


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Posted 30 May 2017 15:45:37(UTC)

Hi Little Blue,

Although at 67 I'm a bit older than your Dad, I was in a similar position last year. Gleason 7(3+4), PSA 4.5, T2a, no symptoms, and I opted for Da Vinci robotic prostatectomy, which I had last August. I was in hospital for 2 nights, had the catheter out after 7 days, suffered with incontinence, although steadily improving, for 6 months or so, and 9 months on from the op, am 99% there. I've had 3 PSA tests since, all showing a reading of 0.0.

Like your Dad, I tried to be upbeat and lift others round me, as it's often more difficult for family members. So if you can share his optimism that would help him I'm sure. The immediate post-op period can be tough; the catheter was not great although i only had it for a week, but I was lucky in that I was pain free virtually after the op, which I put down to the fact that I got very fit in the few weeks prior to surgery on the instruction of the anaesthetist, who told me to cut out alcohol and white carbohydrates for 4 weeks prior, and to drink 3 litres of water a day and do 45 mins aerobic exercise daily. I'm convinced this was a factor in my relatively quick recovery.

 

I quite liked the break from driving from a few weeks: your Dad's  lucky to have a daughter like you to drive him to footy as I had to Uber it!

 

Good luck!

David

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Posted 30 May 2017 16:28:44(UTC)
That makes more sense thank you LynEyre. My dad is having an open RP although I'm not sure the full reasons behind this. This is his first ever operation so he has no previous scarring and he has no heart problem... so I'm thinking it's perhaps to do with the positioning of the tumour or the research about incontinence. Or maybe my dad just doesn't want to be under anaesthetic for any longer than he has to be due to something that happened to me whilst under a general. Thank you for clarifying the different procedures for me though.

Hi David, thank you for sharing your story... I won't ask you which football team you support incase we're huge rivals! 😄
Congratulations on your 3 PSA readings that is both fantastic & inspiring news.

I've taken note of what you said about sharing my dad's optimism and I'll definitely be giving off lots of positive vibes! especially after reading about everyone's positive journeys with PC.

My dad doesn't drink alcohol but he is doing his daily exercises as instructed and is drinking lots of water, I'm glad to hear that you feel this all helped you're amazing recovery.

Are there any tricks or bits of advice you can give with regard to catheter leakage, pain (from catheter), and the urge to pass urine? I think this is what my dad is most worried about as I had similar difficulties when I had my bladder removed and he's been asking me a lot about my experience of these things and medications to 'stop' the urge, but of course I have a urostomy so no catheter and I'm female so I imagine it may be a completely different kettle of fish, although I can of course emphasise massively.

His specialist nurse and surgeons have discussed all of this with him but I think he'd value suggestions/tips from someone who has actually experienced the surgery first-hand.

Thanks again for all your help!... fantastic support ☺

Little Blue 💙
Early Localised PC
TNM Staging: T1 / N0 / M0
Gleason Score: 6
Age: 59
User
Posted 31 May 2017 09:04:51(UTC)
LB

I had Robotic surgery, the wounds are so much smaller than open and my recovery was quite quick, but remember it is not a race, keep mobile but no marathons. My first tip to dad would be to avoid constipation, forcing out solid motions is a no no. Pain killers and anesthetic can cause constipation, some hospitals now prescribe laxatives pre and post op, I finished up taking a ride in a ambulance to the emergency department, four days post op with extreme abdominal pain which turned out to be constipation.

I have been catheterised numerous times, the first time is a challenge but subsequent times have been far easier, hopefully dad will only have the one.

Sometimes a catheter can be uncomfortable other times a breeze. Do not be afraid of the Catheter it would take alot of effort to pull it out by accident. I was given a gel called instilagel,it is a lubricant, anesthetic and antiseptic, it comes in a syringe and is squirted down the eye of the penis at the side of the Catheter, if you can, get the Hospital to give him some on discharge. Leakage or by passing can be uncomfortable, as small amounts of urine come out between the Catheter and urethra, this Sometimes happens as the body squeezes on the bladder for a variety of reasons, sitting on the loo, wind in the bowel, bending forward and bladder contractions. Oxybutynin can help with bladder spasms.

In my case the external end of the Catheter was attached to and Velcro fastening elasticated thigh strap, on the end of the Catheter fits the leg bag , sometimes call the "day" bag but in reality it is attached day and night. At night larger capacity bag is attached to the leg bag. I wore pyjama bottoms in bed to keep all the pipes from getting caught up. At night I would settle into bed and my OH would attach the night bag to the leg bag and remove it in the morning, remember to close the tap.Even if you get a night bag stand, it is wise to stand it in a bowl or bucket in case if accidents. Make sure he remembers to a open and close the taps in the right sequence. The leg bag is normally changed after 5-7 days done by the user or carer or OH etc,night bags are sometimes "one" off use only other times I have been given multi use bags. I now use a bag strap around the night bag pipe and wrap it around my ankle to prevent and pipes being pulled out,it only happened once.

The leg bag is attached to the leg with a couple of Velcro fastening elasticated straps, I found cutting a small piece off the corner of the Velcro fastening makes them far easier to thread into the bag slits. I now use one strap at the top of the leg bag and use an elasticated leg sleeve that holds the bag, Google urisleeve.

When showering I remove the leg straps and urisleeve and tuck the bag spout under the thigh strap, I then dry myself,put a dry thigh strap on the other leg, transfer the Catheter to the dry strap remove the wet strap and put to dry for the next day. Again wounds from Robotic surgery are very small, not sure how showering etc works with a larger wound.

As regards the contents of the bags Rose is normally considered ok Red should be checked. Blood in urine often looks worse than it is but If in doubt always check with your professional team. The district nurse visited me once in the two weeks from op to Catheter removal.

Hope all goes well for Dad.

Thanks Chris
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User
Posted 31 May 2017 16:43:37(UTC)
Hi Chris,

Thank you for all of that advice! it's greatly appreciated.

I've noted down you're suggestions re: Laxatives, Oxybutynin, Instilagel and a Urisleeve 👍

I hope that your recovery continues to go well. Thank you for sharing your journey with me.

Little Blue 💙
Early Localised PC
TNM Staging: T1 / N0 / M0
Gleason Score: 6
Age: 59
User
Posted 31 May 2017 17:31:56(UTC)

Shopping list:
A bucket to stand the catheter night bag in
Waterproof sheet or disposable bed pads for when catheter is removed
Pants (not boxers) in a size larger than usual - his penis and scrotum may be very swollen post-op and boxers do not provide the necessary support
Jogging bottoms / sweat pants with an elasticated waist and in a dark colour
Books and magazines or puzzles
Incontinence pads - just a couple of packets to begin with as he may not need them. Some areas give them on the NHS but they are large, bulky and uncomfortable. Tena Men are available in most large supermarkets and are often on BOGOF deals. Make sure you get the men's ones not the ladies!

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


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User
Posted 31 May 2017 19:33:11(UTC)
thank you LynEyre for providing that fantastic well-thought out shopping list.

The dark jogging bottoms and 'one size larger' pants is not something we probably would've considered otherwise! 👍

Little Blue 💙
Early Localised PC
TNM Staging: T1 / N0 / M0
Gleason Score: 6
Age: 59
User
Posted 28 June 2017 11:29:32(UTC)

Hi Little Blue.
I was diagnosed with PC in march this year and underwent the prostate removal on 7th June. It was my first ever stay in hospital,which was a bit scary but the staff were very supportive and friendly. It did help that here were two of us who had the same op,on the same day, we both had the robotic assisted, and we were both experiencing similar things. I have to say that I di not experience anything I would call pain. As part of the operation they inflate you to give more room and the feeling of being full of wind was uncomfortable.
My top tips for the hospital stay would be earplugs and a eye mask! For me, my twice daily visits from my family was the biggest boost.
My friend K was out of hospital after two days but I had a slight problem with my red blood count which meant I had to stay for 4 nights.
Whilst I didn't enjoy the catheter it certainly didn't affect my daily life. It was removed after 8 days and again the removal, which I was dreading, was actually completely painless and done before I even realised it.
Now I am settling back into my normal routine. I will be off work for a few more weeks yet but hopefully not too long. I find that sitting or laying down I am fine with the continence but, especially early in the day but I do get tired more than before and with the tiredness the continence suffers a bit. I'm only getting through a maximum of a couple of pads a day though so count myself lucky. I find the Tena ones by far the best.
So now it's just taking one day at a time, slowly getting better. If one thing is going to get me there it is the overwhelming love and support from my family.

May I wish your Dad all the luck in the world for his operation. From where I'm sitting he sounds like he will have all your love and support to get him through and trust me, that really does help the most.

Andy
Age 54

 
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