Prostate Cancer Treatment - help needed

User

Posted 05 Dec 2020 at 13:47

Hi All

My Father was recently diagnosed with prostate cancer and a Gleason score of 7. It is a localized cancer and the two options that have been provided for treatment are

1) Surgery

2) Hormone and Radiation Therapy

It has been extremely difficult trying to decide between the two. On a personal note my Father is very concerned about incontinence issues if he has the surgery.

Can anyone who has had the surgery to remove their prostate please provide your experience in terms of side effects and specifically around incontinence. I would be extremely grateful for any help and also open to having a Skype/zoom conversation with anyone who has been through this as I would be truly inspired and humbled to learn about your experience.

thank you

User

Posted 05 Dec 2020 at 21:51

The long-term success.rates of the two treatments are very similar, so basically it boils down to which set of side-effects you find less objectionable. I went down the HT/RT route and have no regrets about that.

Best wishes,

Chris

User

Posted 05 Dec 2020 at 22:30

My husband turned 60 at diagnosis at Easter this year. He is extremely fit and healthy. Diagnostics identified a Gleason 8 cancer, T2b, PNI but not EPE identified. He opted for RALP which he had at the end of July.

He was discharged home the next evening following surgery. He was walking “lengths” of the living room and garden once home.

Following catheter removal on day 8 post op he leaked urine, it was like tap. He had practiced his PFE’s pre-op and resumed them post catheter. He noticed it was worse when he stood up or was active. He was, however, continent overnight from day one.

Within 2-3 weeks he noticed a huge improvement and used less pads. By week 6 he wore a pad purely for confidence and “just incase”. From week 8 he was confident enough to go without.

Obviously everyone is different but this is his account.

Unfortunately he has needed adjuvant RT but he has retained continence.

Best wishes.

Edited by member 05 Dec 2020 at 22:31 | Reason: Not specified

User

Posted 05 Dec 2020 at 23:53

I agree entirely with cheshirechris. Both treatments are about equally effective, just different side effects.

I think the chances of incontinence from RT are minimal, but the HT is not very pleasant if you are on it for a long time.

Incontinence post surgery seems more common, but it seems most people regain control after a short time.

Dave

User

Posted 05 Dec 2020 at 23:58

The NHS data says that 90% of men are using one pad per day or less at 12 months post op. There is no way of predicting which men will be continent or incontinent; finding an experienced surgeon who does at least 100 RPs per year reduces the risk, but even with the best surgeon there is no guarantee.

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

User

Posted 06 Dec 2020 at 01:30

I had a prostatectomy via a very experienced surgeon, and once the supra-pubic catheter (look it up) was removed on day ten, I bought a box of 14 Tena Lite pads, and I still have four or five pads left, two and a half years later.

The downside is that the very experienced surgeon lost about 2” off my penis, which is now incapable of erection.

Am I bovvered? Nah.

Best of luck.

Cheers, John.

User

Posted 06 Dec 2020 at 07:16

I was 68 when I had my surgery in March. On the incontinence side I've been dry at night all through and I haven't suffered at all from stress incontinence. However, I was hoping that after years of living with an enlarged prostate, that it's removal would reduce the urge to pee. That hasn't really been the case.

User

Posted 06 Dec 2020 at 07:58

Thank you all for your replies it’s extremely helpful and reassuring! Can’t imagine the catheter is very comfortable at all but if it’s in for a week or so can just take each day at a time!

User

Posted 06 Dec 2020 at 08:46

Hi KH,

I had surgery just over a year ago at 56. I was discharged from hospital on day 2 with a catheter and six cuts in my abdomen stapled. The catheter and staples were pretty uncomfortable but removed on day ten which was a huge relief. Recovery wise, it was slow steady progress and I don't have any incontinence issues apart from the occasional drip. (PFE exercises are important and I do them religiously.)

I would add that your father may need help from a partner or family member in the first few days following surgery, especially with the catheter night bag etc. Also, some fetching and carrying as he will have to avoid lifting for a while.

Hope this helps, and best wishes in whichever treatment he chooses.

Kev.

User

Posted 06 Dec 2020 at 09:38

Thank you Kev for sharing your experience. Yeah I am going to get my Father to do lots of PFE pre and post surgery, if he goes down that route!

User

Posted 06 Dec 2020 at 13:13

Hi KH,

How old is your father ? Good fitness, and BMI? Please see my profile.. includes me and brother.

I was completely dry <48 hrs, very fortunate. Brother took RT option, both of us have no ongoing leakage.

Regards Gordon

User

Posted 06 Dec 2020 at 21:40

I had the same surgeon as Bollinge and same outcome in terms of continence.

Recommend checking out Retzius sparing Robotic Assisted Radical Prostatectomy. It’s a fairly new approach that’s been actively used by a number of leading surgeons for ~5yrs. Main benefits are the nerves associated with the bladder aren’t disturbed as much and thus the continence figures have been dramatically improved. This technique was used during my surgery and I was dry quickly after surgery. A year down the line I am pretty much normal and no pads needed.

PFE are good. I don’t do them anywhere nearly as much as I should.

Edited by member 06 Dec 2020 at 22:25 | Reason: Not specified

User

Posted 07 Dec 2020 at 08:14

Hi Gordon,

He is 61, generally decent fitness and maybe slightly overweight. He has type 1 diabetes too.

Thanks for sharing your experience I read your profile and it’s very informative and inspirational. I think my Father is now leaning towards surgery as the option to go with.

User

Posted 07 Dec 2020 at 08:16

Hey TechGuy,

I will check out the procedure you mentioned and ask the surgeon if it’s possible. We are speaking to him/her on Friday.

thanks for your recommendation.

User

Posted 07 Dec 2020 at 08:34

Hi I'm a about the same age as your father and also with prostate contained cancer. My consultant is a surgeon so he has recomended removal however I have also had a good appointment with an oncologist who has worked on a trial/ research "Stereotactic Radiotherapy" he has said that I'm a perfect canditate for this which would consist of 5 doses of therapy every other day for a ten day period , no HT needed. I'm waiting for a rectal spacer to be fit (sounds bad but doesn't look any more invasive than the biopsies that I have had) this creates a space from the prostate and the bowel to help protect the bowel during the treatment.

In my case this sounds a better route and seems to have equal success rates V surgery.

We are all different and I have looked at all sorts of routes including HIFU but this seems to be a good option and one that I personally are comfortable to try. I spent almost an hour with the consultant and left with certainly plenty of faith and confidence in him which I think is really important.

All the best, I'm sure what ever route your father takes he will be in good hands

User

Posted 07 Dec 2020 at 09:52

Thank you Audiman and I wish you all the best in your treatment too!

User

Posted 07 Dec 2020 at 10:27

"Can anyone who has had the surgery to remove their prostate please provide your experience in terms of side effects and specifically incontinence. I would be extremely grateful for any help and also open to having a Skype/zoom conversation with anyone who has been through this as I would be truly inspired and humbled to learn about your experience."

It is not very wise to be arranging Zoom or Skype calls with total strangers via this forum - you could be a scammer which puts any members who send you their email address at risk PLUS you could be speaking to people who present themselves as experts on a treatment when all they know is how it affected them.

If you want to talk to people who have had the different treatments, contact PCUK who have trained advocates / peer mentors.

Edited by member 07 Dec 2020 at 10:28 | Reason: Not specified

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

User

Posted 08 Dec 2020 at 14:13

Hi there. I am 65 and was diagnosed oct 2019. Gleason 7 Psa 5.4.

I had robotic surgery in july this year, first surgery and hospital visit in my life do very anxious. Surgery went well home after 48 hours. Catheter in for 10 days. After surgery no pain, catheter was an inconvenience but I was walking around albeit slowly. Catheter removal no pain. Some leakage to start with but I'm now back at work doing short 3km runs and circuit training.

I wear a light pad for confidence with very little leakage. I feel good in myself and my recent psa is 0.03.

I was fit and healthy in advance of surgery. Ger yourself fit ,if helps. I did my pelvic floor exercises 3 times a day before surgery and continue to do so. They really do work.

I would recommend surgery, it worked for me.

All the best. Stay positive

Tony

User

Posted 08 Dec 2020 at 15:12

Thank you Sammo!

your story puts us back into a positive frame of mind and I’m glad you are doing very well! Keep up the running :-)

User

Posted 10 Dec 2020 at 10:49

I think it boils down to :
1. Removal, some short term pain & recovery time - over a couple of months - more risks, EG a general anesthetic involved - Type one diabetic, is a consideration, too. Some also need follow on RT around the Prostate area, which means you are really treated twice if you go down the Surgery route.

2. RT & HT it takes a lot longer, up to 2 years, when all said & done - the Hormone therapy stays in your system for a long time. You will have to visit the RT dept of a hospital, for 20 + visits - this may be a factor, depending where you live.
There will be some No 1 & No 2 toilet problems with most folks - I believe, being overweight, is a minus factor if that is the case.
The good, is no scalpels involved.

I went the RT & HT route, & so far it has worked fine for me. I did consider the Space Oar thing, but it is not as tried & tested as conventional RT & pretty expensive, too. So I did not go down that road. A year after HT, PSA is 0.05 - at diagnose in 2018, it was 27.

Addenbrooks in Cambridge are wonderful, not sure if others are as good! Whilst I was there, people from all over the UK (Not just locals) were being treated there.
Do actions, speak louder than words?
Good luck.

Edited by member 10 Dec 2020 at 11:03 | Reason: Not specified

User

Posted 10 Dec 2020 at 10:56

Thank you Bob! We are speaking to the surgeon on Friday to find out a bit more and then will have to literally list out adv and disadv of both and help my Father decide!

User

Posted 10 Dec 2020 at 21:26

Hello

I was diagnosed beginning Sept 2020 - G 3+4, and G3+3 other side. I’m 66, fit and active, and a respectable weight of 11st 3 at 5’7. PSA3.8

I was given all options, but decided against AS, decided against RT & HT as really wanted to get on with things, so RALP surgery at Pinderfields 23/10/20.

Now three weeks post surgery:-

- No pain since day after surgery

- Feel 95%, just walked 9miles today

- Dry at night no incontinence

- Using 1 maybe 2 pads per day... but improving

- Today, 7 weeks after surgery usually 1 pad per day max, was told earlier today that this weeks post surgery PSA is < 0.005.... undetectable.

Joined the ED clinic today so all good going forward and happy with my surgery decision.

good luck.

Edited by member 10 Dec 2020 at 21:50 | Reason: Too many line spaces

User

Posted 10 Dec 2020 at 22:37

Wombat

Great result all round and excellent PSA.

Simon

User

Posted 11 Dec 2020 at 07:42

bobsuffolk pooints out that you could be treated twice if you go down the surgery route - and PCa reoccurs. That's usually seen as an advantage, because if you go down the RT route and it reoccurs, surgery is very difficult.

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Prostate Cancer Treatment - help needed

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