Is prostate cancer, "all night, forever" ...?

[Darryl]

During Malecare's urology conference today (17 urologists meeting at our office, all day....their generosity of time and intellect is endlessly appreciated), a doctor described prostate cancer using a quote from the Ken Burn Civil War documentary. He said, "My patients experience prostate cancer as "all night, forever."

What do you think? Is that how you experience prostate cancer? Please comment below.

[greatjohn]

stage 4...because of Lupron or what ever other agent is used to chemically castrate one...does seem like a long, HARD night.

Me, personally, I would love to wake up from this and realize it's was just a bad nightmare....The actual prostate cancer and following radiation were a piece of cake. Finding out it hadn't fixed anything...and THEN Lupron changes EVERYTHING. And since it's "forever"....

~~John

[Dayatatime]

I'd have to agree with that statement. No matter how well we do or how bad it's aggressive treatment with this disease that in almost all cases will leave us with some sort of scarring. Be it physical and emotional. I gave up sexual function for life because of my children and I feel like I have a lot yet to live for. The effects of HT are exhausting and mentally it's tough to deal with. We take so much for granted when we are healthy. I feel thankful and sometimes not worthy of sharing this board compared to guys on here that are literally fighting every day for positive news and their future. I will use another quote I once read after my fight started that struck me and as a part of this group live it here every day......

"Your scars are someone else's signs of hope"

Ron

[tallguy2]

Darryl,

I'm not there yet, primarily because my QOL continues to be decent, and I have no pain from the mets. My wife has been totally supportive and we knew what a RP and ADT could do to continence and sexuality (it did). Nothing is stopping us from traveling, and I swim laps 4 days a week. I try to focus on what I can still do.

Yet it's the in-between treatment regimens that cause me the most angst. Today I spent 4 hours filling out forms to see if I can be enrolled in a clinical trial. Hurry up and wait...

[FCoffey]

It's not how I experience prostate cancer, but "all night, forever" is a pretty good description of my experience while on ADT. Deep depression, severe cognitive impairment, unending hot flashes, chronic insomnia, the list goes on and on.

The phrase that I coined when on ADT is

"This isn't a treatment so much as a step towards death."

I realize that prostate cancer causes many severe problems. In asymptomatic men, the treatment is quite literally worse than the disease in nearly all cases.

[Shooter1 in reply to FCoffey]

Didn't want the forever part at ADT side effects..elected for Orchiectomy..Jelly beans in a shriveled sack were no good anyhow...now no ADT drugs with their own side effects.

[Victorq1 in reply to FCoffey]

Hi FCoffey

Victorq1 here.

Diagnosed with PC,in 2007,

PSA 6, (T2A), Gleason 7.

treated with EBRT , in Canada,

after 3 years PC returned

and on Hormonal therapy since than,

LUPRON + Bicalutamide.

First 7 years Intermittent

now on Continuous Hormonal Therapy.

This year 2018 my Oncologist / Radiation Specialist wants me on

LUPRON injection ,once every 4 months and daily dose 3 pills 50 mg each

of NILUTAMIDE (Anandron - made by Sanofi pharma ...),instead of one 50 mg pill of Bicalutamide.

Still alive after 10 years from diagnosis.

Warning:

Nilutamide has caused me recently "Chemical Pneumonia"

I was on numerous Antibiotics and Oxygen for more than a month and almost died.

The problem was ,that out of eight physicians who were treating me not one was able do diagnose, what was going on.

I am chemist and have access to the oncology institute library in Canada and was able to finally diagnose myself.

The diagnosis was confirmed by my urologist.

This kind of chemical pneumonia is fortunately reversible

and the only treatment necessary would have been to remove

Nilandron (Nilutamide) and or Bicalutamide and introduce anti- inflammatory

eg: Prednisone .

This finally happened and I am still alive happy to report my experience.

(If interested ask me for links to the medical literature on the subject)

Cheers Victorq1

[chascri]

I would agree the treatments and the side effects are worse than the disease until the metastasis starts causing severe pain. Then the treatments of the metastasis and pain with even greater side effects have taken quality of life to a new low. Throw in the limitation of activities from spinal and rib fractures from a couple of falls and the pre-metastasis and fractures period seems like a cake walk. Enjoy it while you can, it’s a slow agonizing ride down hill. All you can do is make the most of the of the moments. The past is history and the future a mystery filled with unlimited possibilities.

[j-o-h-n]

to me it's "death before dying" but I shove it in the back of my brain where I also store the 10 miserable years I spent with my ex-wife. Then I substitute the torment with humor.

Good Luck and Good Health.

j-o-h-n Wednesday 09/26/2018 5:32 PM EDT

[joancarles]

7/27/17, one month after turning 51 years old. The day all my dreams were buried. Everything changed. I can not continue with my job, professional basketball coach. A few months ago, after a time of my separation, I began to have a new relationship. But it has vanished, normal.

Each month pending the PSA, which did not know or that existed.

Sex = 0

Walk every day to try to keep the body in a certain harmony.

See that the world continues and you are looking at it without being able to participate in many things.

The great storm that ninca ends.