I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

My dad has just been told he has Prostate cancer

Email this conversation Print this conversation

User

Posted 20 Jun 2019 at 17:36

Had my RALP last September. My consultants strongly advised doing daily kegal exercises and strengthen the core region. I did this for six weeks right upto the evening before surgery. 9 months on I have no incontinence issues. I think the exercise regime helped me physically and mentally. Obviously the skill of the surgeon plays a significant role but I am very sure a focused exercise regime was of huge benefit on many fronts.

I am the sort of guy that needs facts so I researched the surgical procedure and what to expect at various stages of recovery. This forum was totally invaluable in this regards. When things happen I felt ‘in control’ because I was expecting it.

When your recovering make sure you follow doctors orders and no lifting, only very light duties. When you get to week 4 you’ll be busting to do stuff but remember it’s complex surgery - treat it with respect. At week six I took myself (and wife) to a sunny beach to stop me doing stupid stuff around the house.

Finally keep the water wife/partner engaged in the process. My wife was fantastic. A happy wife is a happy recovery. What this process has taught me is real obvious - life is too short to waste arguing and being unhappy.

Enjoy your recovery- nothing to fear!!!

User

Posted 21 Jun 2019 at 05:44

Hi Userbc,

That's great news! Such a huge relief isn't it.

My dad in the end also decided on surgery. We do not have a date yet though. He is meeting the surgeon mid July so guessing we'll get a date then.

We were also told its important to do the pelvic floor exercises as they will help post opp.

I'm guessing whilst in hospital they will provide everything you need but has anyone for a 'shopping list' for those initial days/weeks at home eg waterproof cover for the mattress etc?

Thank you

User

Posted 21 Jun 2019 at 06:36

https://community.prostatecanceruk.org/posts/t21287-Pre-surgery-shopping-list

The thread above has good advice on shopping list.

I don't know how to turn the pasted address into a link so you will need to paste it. Or just search "shopping list"

Cheers
Bill

User

Posted 21 Jun 2019 at 07:56

Yes such a relief!! Everything has been quite efficient for us so far. The same day my dad had his appointment with the consultant for the bone scan results and treatment options he had his pre surgery assessment and a date. We were a little bit taken aback as thought we’d have more time but now my dad is eager to get it done and dusted. That list is so helpful thank you!! Think my dad is apprehensive about being out of action. He’s normally very hands on and likes to be busy, knowing he won’t be able to drive is sending him crazy!! Does anyone have any experience of the recovery in how it all works. We’re not sure how long he will be ‘bed bound’ or whether he will be up and about in the house able to potter on by the weekend. So many questions!

User

Posted 21 Jun 2019 at 08:52

Hi, Glad your Dad has chosen the right pathway for himself and good luck to him for a successful surgery and recovery.

Today I am 9 weeks post op and have been given the 'all clear' from the surgeon with a <0.1 PSA result, almost fully continent and almost back to full strength. Suspect that within the next two weeks the only negative I will be left with is the ED which is still a work in progress. The recovery has been okay in most parts. Worst issue for me personally was the catheter for 2 weeks......just hated the experience. My stomach wounds have healed well and you can hardly see the scars. I have put on a few pounds with the low levels of physical activity but I am just beginning to deal with that now by watching what I eat and upping the daily exercise.

I don't think I would change much looking back and overall I am in a great place now following my shock diagnosis on Jan 2nd this year.

This site is amazing for information and the contributors are so knowledgable and many have wicked sense of humours. If your Dad doesn't already, get him an iPad and get him using the site daily. I used to wake up in the middle of the night whilst recovering and spend hours reading personal stories on this site.

Good of luck to your Dad and keep us updated as his journey continues.

king regards

Steven

User

Posted 21 Jun 2019 at 09:29

Hi Userbc, that is a quick turnaround which is fantastic.

If he is having a robotic laparoscopic prostatectomy he will be out of hospital by the 3rd July and mobile. He will have to take things easy, the wounds are painful when moving for the first few days. He will have a catheter fitted during the operation which will remain in place for around 10 days. It’s weird when you first take a shower with a catheter tube hanging but you get used to it! I had a night bag on a self assembled stand for overnight. You’ve got to be careful not to move too much during sleep. The bag is pretty full by morning. About 9 days after my operation I awake to the night bag looking like red wine. I got checked out but apparently this happens when clots break away.

I had disposable night bags so just emptied it down the loo and put the bag in the bin.

It’s also odd to be told that you will leak when the catheter is removed. My logical (or illogical) brain thought how can I leak when I was fine before surgery but continence recovers. The pelvic floor exercises are essential homework!

It is normal to spare nerves if there is cancer on one side or it is well contained and away from the nerve bundles. I had nerve sparing on one side only as the cancer was at the edge on the other side.

All the above can change slightly if there are minor complications but here’s hoping the surgery goes really well and he can start getting on with his life again.

Best wishes,

Ido4

User

Posted 21 Jun 2019 at 17:41

Originally Posted by: Online Community Member

https://community.prostatecanceruk.org/posts/t21287-Pre-surgery-shopping-list

The thread above has good advice on shopping list.

I don't know how to turn the pasted address into a link so you will need to paste it. Or just search "shopping list"

Cheers
Bill

Just click on the edit button at the right hand side of your post, then move the cursor (or your finger if using touch screen) to the end of the pasted link, press enter and save.

Edited by member 21 Jun 2019 at 17:42 | Reason: Not specified

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

User

Posted 24 Jun 2019 at 08:30

Hi everyone

thanks so much for recommendations and kind words! Has anyone any experience on surgeons taking a look at the lymph nodes during the operation? Surgeon told dad he will do this to make sure for definite it hasn’t spread but he isn’t expecting to see anything. I feel like with this journey with every step of progress there is still always nervousness of awaiting some type of news. I know we’re very lucky to be in the potisitom we are with dad’s cancer but now we’re worryint about the lymph node check and then I’m sure after surgery we will be worried about the pathology report on the remove prostate, and then it’ll be the post surgery PSA. Such a rollercoaster but just trying to focus on the positives. Does anyone know how soon after surgery you can drive again or is this just surgeons recommendation?

User

Posted 24 Jun 2019 at 14:59

Some surgeons always take a couple of lymph nodes to check, others do it only where there is a suspicion.

Re driving, dad needs to check with his insurer first and then take advice from the surgeon (unless it is one of the hospitals that gives patients a leaflet specifying things like when they can drive again). My husband had a company car and the insurer would not cover him for 12 weeks but I know other companies say 6 weeks or "when you can do an emergency stop safely" Our local hospital gives out a leaflet stating 6 weeks so an insurer would probably decline to pay out if the person felt they could drive at 4 weeks but had received a leaflet saying 6 weeks.

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

User

Posted 24 Jun 2019 at 15:41

Hi User,

If you click on my profile ‘Bollinge’, you can see all the gory details of my successful prostatectomy, over a year ago. The surgeon removed twelve lymph nodes of which two were found to be cancerous.

Although ‘lymph node involvement’ doesn’t augur well for prognoses years into the future, I am completely cancer-free, completely continent, and completely impotent. Two out of three ain’t bad, eh?

Best of luck to Dad.

Cheers, John.

User

Posted 24 Jun 2019 at 17:55

Thanks everyone. Just wondering how people dealt with climbing stairs after surgery? We’re wondering whether to bring the spare bed downstairs so he’s on the same floor as the kitchen and a toilet so doesnt need to be on the stairs, or Will he be able to climb stairs? Ah roll on Monday so the surgery is done and recovery can start!!

User

Posted 24 Jun 2019 at 19:46

Thank you for the Shopping list. I'll share this with my dad.

My dad has been told that the cancer hasn't spread to the lymph nodes. When we saw the surgeon he advised that he would be taking some (5 I think) to check as a precaution. At the same time he said this can have the side effect of fluid retention in the area as there is no lymph node to drain it.

User

Posted 24 Jun 2019 at 20:14

Going up and down the stairs is an important bit of the rehabilitation. They may even get him to climb some stairs before they let him come home.

He needs to move around and keep active without overtiring.

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

User

Posted 25 Jun 2019 at 09:43

Okay thank you. I’ve noticed since we’ve been on this journey that it is like a rollercoaster. With each bit of good news we’re still worrying for the next step. I guess now our main concern is the lymph nodes, then I’m sure it’ll be the results of the removed prostate and then the post op PSA. Wishing we could fast forward to that point. The main thing at the minute is wondering what recovery will be like. Does anyone know if the surgeon will tell us about the lymph nodes after surgery or do things need to be sent away to be examined??

User

Posted 25 Jun 2019 at 11:08

My surgeon told me that lymphoedema (water retention) occurs in 3% of cases post-prostatectomy, where lymph nodes are removed.

It can occur years later, often in the lower limbs. I thought I had it the other day when my feet swelled up, but it seems that was the result of tramping round Hamburg and Brussels on foot for three days!

The removed lymph nodes will be examined at the post-operative biopsy, and yes, you will be told if the cancer had spread to any of them.

Cheers, John.

User

Posted 25 Jun 2019 at 18:25

I am just over 5 weeks post removal op. I saw the physio on Monday she was happy with my progress and said I couldn’t start driving again, but, only for short distances suggesting no more than 30 minutes. Initially I was told by the Macmillan nurse it would be about a month to make sure that I could carry out an emergency stop.

You will probably know yourself when you are ready.

On another note, my histology result appointment had been moved back three times, my op was on 18 May with the results not being given to me until 20 August. So I complained to my specialist nurse as I believe this is an unacceptable situation. She rang me today to say that my appointment is now on 2 July, Result!!

Bets wishes

Peter

User

Posted 25 Jun 2019 at 19:15

I sound like a broken record. But surely the MRI would show if the cancer had broken out and spread to nearby lymph nodes? I don’t understand how they can diagnose my dad with localised prostate cancer that hasn’t spread and recommend surgery but now indicate there’s still a small chance it could have spread to the lymph nodes?

User

Posted 25 Jun 2019 at 20:00

An MRI can only show tumours that are mm in size or larger. Spread can be in the form of small clusters of cancer cells that simply don’t show up on scans. In my own case, my PSA was anomalously high for the cancer found in my biopsy, hence the recommendation that I have “wide area” RT to kill such potential undetectable spread.

Best wishes,

Chris

User

Posted 25 Jun 2019 at 22:05

Whether or not the cancer has broken out of the prostate has nothing to do with whether there is spread to lymph, bone or other places. The tumour(s) can be fully contained within the prostate but cells can still move to ther areas through the blood & lymphatic system.

Having said that, your surgeon doesn't believe dad has lymph involvement - he wouldn't be offering the operation if he believed there was spread. However, it is absolutely right for the surgeon to take a couple to have checked just in case.

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

User

Posted 26 Jun 2019 at 10:24

Thank you, that is very reassuring!!

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.