Cycling after Prostatectomy or brachytherapy

[Cowsham]

https://www.itv.com/news/utv/2021-11-10 ... -sufferers

[Divefrosty]

Morning Gents
I just wanted to thank you all for the details of your journeys.
I found out in May I have PC and took ages to decide which path to take.
I eventually decided on surgery for mainly the same reasons you did @Saudidave.
I’m waiting for my op date which could be any time in the next 3-4 weeks.
I’m 58 at the end of the year and took up cycling on a more regular basis during lockdown so I was keen to understand, can I continue after surgery. It seems they don’t really keep stats on this which I’m sort of amazed about.
At the time of trying to decide on brachytherapy or Surgery I tried to also find out about the impact on other sports I do like sking and scuba diving, but again there were no stats.
I’m glad I eventually found this post at least, you’ve given me hope, concerns and insight so that’s over all great.
So a big thanks from me.
Hope you’re all keeping well and staying as active as you are able to.

[Jdsk]

Good to hear that you have a plan. Hope it all goes well.

I’m 58 at the end of the year and took up cycling on a more regular basis during lockdown so I was keen to understand, can I continue after surgery. It seems they don’t really keep stats on this which I’m sort of amazed about.
At the time of trying to decide on brachytherapy or Surgery I tried to also find out about the impact on other sports I do like sking and scuba diving, but again there were no stats.

Did you get advice on sports and exercise after the operation? I recommend asking them directly as soon as possible, and doing it now by email might be appropriate.

I also suggest writing to Prostate Cancer UK about this: there's no reason why a project shouldn't be started by a patient.
https://prostatecanceruk.org/get-involved/campaigning

Jonathan

[djnotts]

What Jonathan says above.
It's not easy getting "advice" so well done for persevering. The only bit I couldn't cycle through (but on ERT not surgery) was the biopsy -- too much blood when I tried!
One of my medic team said yes exercise good. The senior dude said if it makes you feel better mentally.
Nothing activity-specific. I don't think they had encountered someone of my age doing such a thing as continuing to cycle.
Whatever, very best of luck with your treatment. My view is that "do what you can" is the best line to follow.

[Stuart Kirkham]

I'm new to this forum and only found this post today. I'm 75 years old and still race in Time Trials. In March 2017 I was diagnosed with Prostate Cancer, the Cancer hadn't advanced beyond the Prostate, the Surgeon offered me an operation or radiotherapy. My wife had radiotherapy and an operation for Bowel Cancer in 2016 and she has made an excellent recovery. I decided on the operation, it was keyhole surgery and I didn't experience any pain, the only painful part was using a catheter for a week afterwards! I have to wear Tena pads now and I'm infertile, however I resumed Time Trialling in Spring 2018 and I'm very fit otherwise. If Prostate Cancer is caught in its early stages there is a very good chance of recovery.
Stuart Kirkham.
VTTA Cheshire Roads Club.

[Jdsk]

Welcome, Stuart.

Keep on cycling! : - )

Jonathan

[saudidave]

O.P. here! It's been 17 months now since my radical prostatectomy and the journey has been slow and arduous.

I got back on a bike around week 7 or 8 after the op and I'm now cycling around 100-125 miles a week.

Erectile dysfunction has been total!

My hopes of continence returning quickly were ill founded. Despite diligent pelvic floor exercises, several sets daily, it was over a year before I managed to get dry enough to stop using incontinence pads. I'm now OK on that front if no alcohol is involved but do have the occasional minor leak. If I drink alcohol, I stick to wine as it obviously doesn't have the volume of beer or lager, but I still start to leak after the second large glass, as the alcohol takes hold. I don't always leak but often do. I also tend to leak whilst doing manual work such as gardening, so put on a pad as a matter of course. I'm fine riding a bike because I'm sitting down. Overall I'd say the process is still ongoing and I get better as time goes by.

The NHS have been a disaster post op. I had my 3rd telephone review in December 2021 and my consultant asked me to get a PSA test in June 2022 prior to a final review. I did that and emailed the Urology department in mid June 22 to request a review but I had no response. I left a phone message with the urology secretaries and sent a second email two weeks later. No response. I sent another email and left another message two weeks ago and still no response. It's an utter disgrace and I feel I've been abandoned.

Would I go down the surgery route if I had the choice over? It's not been what I expected for sure and I've despaired on many occasions. I have some sense of normality now and being an eternal optimist I've learnt to live with & manage the problems that persist. I remain positive & I'm not dead! If I had known then what I know now though, I would have chosen Brachytherapy.

[djnotts]

Your remaining positive is of great credit to you. My admiration.
In comparison my radiotherapy was pretty straightforward. As somewhere above, the 20 sessions over 28 days, ending c. 13 months ago, was OK. The 3 mthly decapeptyl injections continue, main side effects the hot flushes and yes ED.
The long term effects of the radiation mainly erratic bowel behaviour.
Incontinence pretty much as it was -- but apparently was not related to the prostate anyway! I occasionally use pads if travelling and can't rely on finding a toilet or even a hedge! More than 2 hours unbroken sleep a rarity.
Cycling limited by copd - usually manage 100 - 140 miles a week except when on holiday.
I have had no follow-ups since 1st psa check at 4 mths. Indeed the consultant said "I won't be speaking to you again"!
2nd psa was fine, next at 1/4ly injection in 10 weeks time.
My only alternative to ert and the decapeptyl was.... nothing. I seriously considered the latter but on balance I made the right decision. I am still alive and no obvious signs of spreading .... yet. I may have bought the optimal 5 years.
You have had a bad time and bad luck. That you have fought so hard for yourself makes the lack of any communication now even more unacceptable. Chase them, threaten them, beat them.
Well done and good luck.
Dave J.

[saudidave]

Thanks Dave

Great to hear that you are doing well and your treatment is having the desired effect. I can recall that you were at a very low ebb when you first joined this thead.

My daughter who is an NHS doctor (Gynaelogical Registrar), had dinner with us tonight and is going to chase up my case with the relevant departments at my local hospital via her NHS email, which I should think will produce some results. It shouldn't need to be the case though and how does Joe public without contacts such as mine get something done? If it wasn't for her I'd have died after my prostatectomy due to blood loss. She had to suggest to the consultant managing my care that my symptoms of Tachycardia, hiccups and anxiety weren't me panicking but had a physical cause - internal bleeding. It was only then that he sent me for a scan which led to an emergency laparotomy, two days in a medical coma and five days in intensive care.

Dave

[djnotts]

Good that you have "contacts", but as you say no one should have to rely on that. Nor should "expert patients" gain better outcomes than the less knowledgeable and articulate, which much research proves to be the case.
Something is very wrong with NHS resources and, in some instances, practices.
Keep on keeping on.
Dave J.

[saudidave]

My daughter contacted urology for me this morning via her NHS email. She subsequently spoke to the secretaries and apparently I had been put on the non urgent review list as my PSA reading was so low in December (less than 0.01) that they considered me cancer free. It would have been nice of them to tell me that instead of leaving me in silence with no responses at all.

My PSA in June 2022 was 0.02, so doubled, but the numbers are so tiny that it could be a testing anomaly or the fact that I've been exercising vigorously that drove the change. They have now given me the earliest possible urgent review which is November 3rd, so I'm getting somewhere.

[djnotts]

Good numbers! Long may it continue. But not telling you is shabby.
DJ

[saudidave]

3 months after my initial email to the urology department of my local hospital and following the intervention by my daughter, an NHS employee, via her NHS email, I've finally had a response from a consultant. My P.S.A. level had fallen from 10.7 on the day of my prostatectomy in March 2021 to less than 0.01 in December 2021 but had risen back up to 0.02, 6 months later, causing concern on my part that the cancer may be returning. The response was that very minor fluctuations in P.S.A. like I've had are quite common and are of no concern. Concern and potential further treatment would only arise if the level rose back up to between 0.1 & 0.2. Note that's 10 times higher, it's easy to misread 0.01 & 0.1! Since I had no knowledge about the parameters of all that I was obviously a little unsettled by the rise, albeit a tiny one and whist I appreciate the pressures the NHS is under I think it's scandalous that it should take 2 emails, 3 phone messages and intervention by another party before I got a review date and a letter to clarify my prognosis.

[thirdcrank]

I speak as a dyed-in-the-wool inveterate worrier, usually about the most trivial things. The issue which seems to go unrecognised is that even if somebody is physically 100% OK, that's little help if they are "worried sick."

All the best with this

[saudidave]

I speak as a dyed-in-the-wool inveterate worrier, usually about the most trivial things. The issue which seems to go unrecognised is that even if somebody is physically 100% OK, that's little help if they are "worried sick."

All the best with this

Thanks for the reply. Whilst I am far from being a worrier, the tiny rise in my previously virtually undetectble psa did make me focus on my mortality here and there, although I literally didn't lose any sleep over it or become particularly anxious. It was more akin to a slightly pecked head on occasions. Now I have a point of reference provided by a consultant and suggesting all is still well, I've reverted to type; totally chilled out. The letter of reassurance was a huge comfort to me. I'm not frightened of dying, other than how I get there, but I'm terrified of not living!