Aside from the “death” part, what would make Prostate Cancer suck less?

[Darryl]

Aside from the “death” part, what would make Prostate Cancer suck less?

[Fairwind]

As the cancer progresses, so does the aggressiveness of the treatment..Mainly high-dose IV chemotherapy..There comes a point (I think) where the side-effects brought on by the chemo destroy quality of life more than the cancer is doing....Suck less ?? Treatments that are more effective and less harmful to the patients..

[Dayatatime]

The side effects of treatment for this disease are a disease in itself and even beating it chances are you will never be the same again. It would suck a lot less if it wasn't hormone driven and tied into our sexual being.

Ron

[Maleko808]

Nalakrats list sums up how I feel. If the financial/social burden was less our focus on health/life could be more. Having a support group close by would do as much for the soul as having the right medication does for our physical needs.

[Dayatatime]

I get it and the whole quality of life vs treatment options never really made sense to me. My treatment path so far has been a successful one and I wouldn't change a thing. There is so much more to live for then sex. I look at it as a battle wound. Darryl asked what sucked and being on the younger end of the scale in my forties, not gonna lie, I miss the ol boy.

[pjoshea13]

An intervention to quickly get men past the anxiety stage, to the point where they accept the new normal & enjoy life again.

For most of us, the "death part" will come years after diagnosis. A pity to lose any of that time to depression.

-Patrick

[tallguy2]

Nalakrats, you nailed it, thank you.

I would add that finding ways to intercept the PCa while it is still encapsulated would definitely make it "suck less." [How many men, including me, have posted on this forum that waiting to do a biopsy when the PSA hits 4.0 was too late?]

[Hidden]

A patient manifesto and/or clinical (survey) instruments to realize what it means for having "Advanced Prostate Cancer, Stage 4".

Like the cancer, patients are uniquely different, the diagnosis needs a mental health component!

Every patient should get a standardized "Bill of Life", a baseline understanding of the disease, treatments and prognosis. Then follow up with a survey instrument that would focus on the individual patient. Administrating the instrument needs different forms of access: software survey, paper form or one-to-one interview with a real person.

Ideally this "Bill of Life" would be authored by us, the patient...

[Litlerny]

Agree with Nalakrats.

Research on PCa needs a lot more funding...more clinical trials of new and novel drugs and treatment protocols. A fast track FDA approval process that will allow for Medicare and private insurance coverage without such a long wait. Easier, less complicated rules for compassionate use when other approved treatments have failed, and mandatory Medicare and private insurance coverage for compassionate use treatments.

[RJ-MN]

I don't dwell much on the "sucks" part; it just isn't healthy and can so easily overpower the good that we are all living for. But, since you ask:

1) Naming CaP one disease and then squeezing individual patients into a PROTOCOL that says "first a, then b, then c, then d, then e .... I visit some of the "finest" physicians in the world but it often feels like I could just be sitting down at a keyboard and entering my #s.

2) Even with "nerve-sparing" surgery (done by a resident under my master surgeon's supervision), my last erection was the morning of surgery, October 2006.

3) Which really doesn't matter because of being on Lupron since 2010 ... something that not only takes away libido but also feels like it changes the chemistry of every cell in your body - even changes the way you think and interract with the world.

4) The growth in breasts which makes going shirtless not an option - even Tshirts are problematic.

5) Changes in bowel and urinary patterns and urgencies.

6) But still, at every stage, it seems like one is squeezed into the standard PROTOCOL as thought this were one disease and our bodies were all the same.

But having said that, please, life is good. Each day is a gift. There are still adventures; there is ongoing love and time with grown children and their children. My wife and I still travel and play; we laugh frequently. That is where I try to keep my feelings, my focus, my mind.

[Toad1]

Having gone backpacking in the Sierras as a young man (with rattlesnakes around), a not implausible scenario!

[monte1111]

Nalakrats is a genuine word craftsman. Now I'm not only worried about the bill collector I'm also worried about the Soul collector.

[Stegosaurus37]

The single best thing I can think of would be a better metric for detection than PSA. One that would catch it early enough for a cure.

[whatsinaname in reply to Stegosaurus37]

I agree. And, I think imaging will achieve that soon enough.

[Beermaker]

Most of us see a urologist and a medical oncologist. I feel it would be a great help if there was a med social worker or something to help with the fear, depression, anxiety, and such. The soul and mind seem to be greatly forgotten in our treatment.

[Dad1963]

I knew that I would never get an erection again if I had surgery. I made the choice to live for my wife and children. But not being able to have sex with my wife absolutely sucks.

[Dayatatime in reply to Dad1963]

I will give you 2 thumbs up for that

[ARIES29]

I agree with what NYMETS in the Bill Of Life. Everybody is different for sure but the desease is not. Also the different Countries we are in have different approaches to it,this is a world wide problem with the human race has so the response should be unified.

Dad1963,three thumbs up!!!

[j-o-h-n]

DREs

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/26/2018 9:16 PM EST

[DenDoc]

I agree with much of what is said above so will not reiterate.

Missing in the Denver area is a good PC Support Group.

Having a life partner who cares more about having you alive and having some smiles is much more important than the sex. We even can laugh about it and remember fondly our early life.

Colorado passed a "Death with dignity law" and I am so relieved that my physicians will cooperate if the time comes and I am suffering more than enjoying my time left. Everyone should be able to make this decision legally.

My kids started a Family Dinner every Sunday night. We gather at different houses for a simple meal and time together. We focus on the positive, "What is the best thing that happened to you in the last week?" It really helps and we have participation from Grandkids ranging from 7-23. My family is very in touch with my cancer care and we know that each day is now a gift. No secrets-even the kids can understand.

For those seeking a social worker, I got involved with Palliative Care when I started on chemo. They have a social worker in the infusion center who stops by often and is available on call.

Bob

[Maleko808]

Why I didnt see this before I will never know. I agree with everything here especially support groups (none in northern utah) and the need for the mental assistance. I also would love for the financial toxicity to not be present. I