+ Reply
Log in or Register to participate in these discussions
Radical prostatectomy @ UHN
Azr
7 Posts

Hi all,

I am going to get surgery at Prince Margarate hospital Toronto. I got an update from my Dr.

The PET scan suggested no concerning lymphadenopathy. The noted inguinal lymph nodes appeared to be more reactive in nature. The prostate on the right as in keeping with the primary was suggestive of uptake. Given that he had no metastases on the PET scan, I have indicated that he should consider moving forward with the management of this disease with a radical prostatectomy given his age.

Would you please share your experience how was the post-surgery and the result?

Thanks

9 Replies
brittanyc
19 Posts

Hi @Azr
Thank you for updating us!
I hope that your radical prostatectomy goes very smoothly.
Here is a short webinar on the ins and outs of the radical prostatectomy by Dr. Peter Black. He shares some information about what to expect during the early recovery period. Here is the direct link: https://cancer.ca/en/cancer-information/resources/webinars/2018/the-ins-and-outs-of-radical-prostatectomy.
Allow me to tag @Bluenoser13 who had a radical prostatectomy, @PJR who had a robotic radical prostatectomy and @Bills10 who had a radical prostatectomy as well who may be able to share what it was like post-op.


Take good care, Azr!
Brittany

DSJ
20 Posts

I had an RP at UHN last December using the DaVinci robot. In and out of the hospital in less than 24 hours although the surgery was 5 hours long. To prepare for the surgery start exercising as much as possible and especially do the Kegel exercises starting now.

The information UHN provides for men's Kegel exercises is seriously out of date and is more applicable for women. Australia is a leader in male Kegel exercises and I recommend you view this video:

on an effective way to do Kegel exercises. It is based on research published in December 2019. I hope to be working with UHN on re-writing their pamphlets on Kegel exercises for men soon.

One thing they don't tell most men before surgery is that when the prostate is removed a sphincter muscle to control urine flow is also removed. Men become fully reliant on our Kegel muscles at that point , which up until then, were a backup in case the sphincter failed. So important to start Kegel exercises now!

After surgery you will have catheter inserted in your penis for 10 days, or so, to allow the urethra to heal. That means you will be connected to a bag to collect the urine during that time. This can be quite a nuisance and uncomfortable. I found out after my surgery there are devices available to hold the tube and bag in place on your leg. That would have saved me a lot of tape had I known.

Depending on the surgery you may have urinary incontinence for a short or long term or something in between. You will need to buy pads for the leakage - especially for the day they remove the catheter. I was fortunate in that I only needed the pads for a few days but others are not so fortunate.

As for pain, it does occur but is short lived. For a lot of men, gas pains are a big complaint following surgery. It does get better. As for recovery, walk as much as you are able. Not easy at first but walk - even in your house to start with.

The other issue you will deal with is erectile dysfunction. UHN has a great penile rehab program so please ask your surgeon to get you into it. I know this is not on your mind now but be aware of it. When you are getting better you will probably want to be engaged with this clinic.

The other thing to know about is the Peer Navigator program available from TrueNth. Your surgeon should be able to connect you to this program of volunteer men who can help you through this time.

Hope this helps and best wishes for the future.

Let me know if I can provide anything else.

Azr
7 Posts

Thanks, DSJ, for your detailed email. That's helped me to understand. Is ED back in few months? I am 51 years old, with no issue before surgery. How long is usually ED recovery time.

Bluenoser13
49 Posts

Hi

As @DSL said pretty much covered my experience from my RP. I had mine done in 2016 and was not the robotic as it wasn’t available in my area at that time.

I still have urinating issues and continue to wear protection. I had an ATOMS bladder sling installed in 2018 but that’s not typical of the process. We de all different and have different outcomes.

Best of luck with yours and get moving and exercise those kegels as soon as you can.

Keep us updated on how your surgery goes.

DSJ
20 Posts

Good question. As Bluenoser13 said, we are all different and have different outcomes. You are about the same age as my brother when he had his RP 20 years ago. He has been fine since then.

Regarding ED, I was like you prior to surgery and things were looking good for me until I had my post-surgery follow up PSA test which was high and climbing (4 then 5) due to "leftover cancer". That made me a candidate for radiation treatment and hormone treatment (ADT) which I am still on. ADT more or less kills libido for most men (unless one has an instinctive libido (about 5% of men)). So I don't know what is “normal”. From what I have learned it could be several months to two years to never.

I do know that nearly every man experiences nerve damage during an RP and thus they will experience ED. It can take 1-2 years for the nerves to reconstruct or grow. To help with the nerve reconstruction you will likely need PDE5 inhibitors (e.g. Viagara) or other drugs (e.g. MUSE). Unlike other cancers (e.g. breast cancer), OHIP and many insurance plans will NOT cover the cost of post surgery reconstruction as the drugs are referred to as “lifestyle drugs”. (Welcome to the world of sexist and inequitable policies which are the reality of prostate cancer.)

Last night I was thinking of some other things I should have written. First being that UHN will provide you with a lot of informative brochures that you should read.

Second was that the one thing I found very helpful was keeping a log book or diary. A lot of things will happen very fast and it's a good idea to keep the information (phone numbers, doctor's names, their admins' contact info, your MRN number, your OHIP number etc.) I have five pages of that kind of information which was far more than I ever expected.

You can use the diary to record and clarify your thoughts and perspective of each day. Later you can go back and you will see how far you have come in your recovery which should be helpful. Also, you can keep one section for questions to ask your physician as you think of them and be ready for the next consultation with your doctor.

Thirdly, UHN has an app called myUHN which I highly recommend. It will track all your appointments and send reminders, provide access to all of your tests and diagnosis, and allow you to access the questionnaires they love to send.

Fourth, you will see some ads at UHN for another app called PocketHealth. This will allow you to keep all your images and test reports in one place. There is a small fee for this but well worth it.

Finally, I found it very helpful for my mental health to write down ten things I am grateful for each day. It sounds flakey but it will help you get out of deep dark place which most of us find ourselves in at the start. Brain science has shown this works - not sure why but it does.

That is a lot of writing. Whew!

You are in great hands at UHN and they will look after you extremely well. Best wishes and hope you'll reconnect after the surgery.

Roy L.
367 Posts

@Azr Sending good vibes and well wishes for your RP. Thats one part of PCa I can not comment on but I am certainly looking forward to updates on how you are doing.

Roy

#peacelovecure

Azr
7 Posts

Thanks for your detailed response. I have no words to thank you. I have fluctuations in my PSA test. the first PSA was 11 in March 2021 before the biopsy. I told to Dr. Antonio Finelli who is doing my surgery. Without any treatment, my PSA is down. Can you or someone tell me about it?

957b329de891aed5c7615cc135ec7948-origina
c6e8ca714f151468a7e189d21a526771-origina
Charles
99 Posts

Azr:

Thanks, DSJ, for your detailed email. That's helped me to understand. Is ED back in few months? I am 51 years old, with no issue before surgery. How long is usually ED recovery time.

PMFJI --

It's complicated.

There isn't a “normal” ED recovery time, because most men don't fully recover from ED, ever, after a prostatectomy.

“Erection” is easy to do if you're healthy, but complicated if your nerves and tissues have been damaged. The erectile nerves run along the surface of the prostate, and they almost always get damaged during surgery. They need to heal:

. . . if the damage is slight, recovery happens fairly quickly (months);

. . . if the damage is severe, recovery happens slowly (years), or never.

There seems to be a large element of chance, in who recovers, and who doesn't. It helps to be young, and have good erectile function before surgery, but there are no guarantees.

So a lot of effort goes toward aiding erections, after surgery:

. . . oral drugs (Viagra / Cialis / etc)

. . . . . VED's (vacuum erection devices)

. . . . . . . Injections (directly into the shaft of the penis – Trimix, bi-mix, Caverject, etc)

. . . . . . . . Implant (rods, and expanding cylinders inside the shaft of the penis).

Oral drugs have never worked for me. I've been using injections for over a decade, and they've worked pretty well.

There's a lot of literature, and many YouTube videos, on these topics. My bible has been:

. . . “Saving Your Sex Life: A Guide to Men with Prostate Cancer”, by Dr. John Mulhall.

Mulhall has several videos worth watching, on the MSKCC.org website.

If your doctors haven't discussed this with you, IMHO you are not yet an “informed patient”. Do some reading, and if you can, find a prostate-cancer support group, and ask the men about their experiences. Listen carefully:

. . . “I'm fine!” is a meaningless answer to “How's your erectile function?”.

. Charles

PS – I've been active in the “Peer Navigators" program. If you can get into it, do so.

DSJ
20 Posts

Dr. Finelli is an excellent and caring doctor. The PSA is still looks to be high so I recommend you follow the good doctor's advice. I wish you all the best on this scary crazy journey.

+ Reply