one or more things that surprised you about prostate cancer

[Darryl]

For a list I will post here, please reply with one or more things that surprised you about prostate cancer after you were diagnosed and up until today. Things about the disease, treatments, journey, your home, family, friends, and work-life....anything at all that you can characterize as a surprise or unexpected aspect about prostate cancer. Thanks.

[Hidden]

I did not know it going in but I had my radiation done at a teaching center. If you are modest at all, that is not the place to go. The ladies loved to expose me any chance they got. The tattoo markers were low enough on my body that the underwear had to be pulled down some. Well some became a lot on occasion. The young ladies that were in training got an eyeful.

[V10fanatic]

The existence of Treatment Emergent Neuroendocrine prostate cancer subtype..

[Stellabell]

I was surprised at how much I could retain my normal activity level (especially work) while undergoing IMRT and ADT. The Lupron (2 years) was miserable, but bearable considering the intended result. The radiation treatments were inconvenient but caused no extreme side effects.. Energy level was low, libido non existent. Perhaps I was just lucky, but you can overcome all this with a real effort and positive attitude.

[Hidden in reply to Stellabell]

I'm glad my Urologist was reasonable and required only 4 months of Lupron ADT. I guess some doctors want to be really sure and don't want to get sued so they kill your sex drive for years.

[Iupiter]

I knew there was a risk of becoming incontinent after a RALP but I didn’t give it much importance. I was terribly surprised to find myself incontinent after my RALP. I did everything I could over 3 years to overcome it but finally ended getting an AUS. I am now happily surprised to see how well the AUS works, something I had no idea existed at the outset.

[CarverD]

Quite surprised when a 30 year friend of mine, who underwent RALP that ended with both incontinence and ED, disappeared from my life after I had HDR-BT with all side effects gone in 3 months or less. PCa does very strange things to the way people think and act.

[j-o-h-n]

That j-o-h-n is funny...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/29/2023 4:14 PM DST

[Shorehousejam]

Here’s a few thoughts…

Why after decades of research there is no cure, treating symptoms but not curing….Strange

Realizing Big Pharma is Not Cure Oriented.

Why the use of antivirals are not part of SOC, plenty of Studies on it…not fenben

That most physicians are Not preemptively screening for Small Cell or Neuroendocrine prostate cancer subtype,, when it obviously is not as “rare” as many had hoped for.

[StuartS]

Apart from all the usual SEs listed, I was surprised to discover that the treatment affected my teeth. I have always looked after my knashers and two years onto my Lupron treatment one of my molars just split in two, followed a few weeks later by another on the other side. My Dentist advised me that a third tooth was in danger of breaking and fixed the lot in one long appointment. He told me he had seen similar issues with other patients going through prostate cancer treatment! No one on my cancer team had knowledge of any link, but were going to do some investigation..., never found out the outcome!

[Inspjones]

I was surprised at how antiquated all the treatment options seemed. I thought that after all the billions of dollars spent on research, that we would have much more advanced treatment options, but we are still largely using the same treatment methods from 30 years ago. After my RALP treatment, I was surprised that I had zero incontinence from the day the catheter came out--choosing a skilled surgeon paid off. I was also surprised that my surgeon did not track my progress after surgery. Finally, I was surprised that my penis shrunk 1.25 inches in length and .25 inches in girth one year after surgery, and I developed peyronies disease. It's still a mystery why this happens.