One Conclusion from Data and Comments Posted here

[DrWrite]

My title sums it up: The only conclusion I can draw is that our experiences don't have all that much in common. We tell others what's happening with us (or our loved one) and ask them to provide support (data, treatments, etc.), but often there's no common thread we can draw on.

It seems that some of us are looking for information we can use with our oncologist to challenege him/ her with regard to their approach. We want positive answer and their are none. Their are a multitude of approaches to our situations and THEY ALL WORK for each of us, but there is no universal 'cure'. We just have to trust the docs and for many of us, that trust is lacking.

I feel lucky that I have an Oncologist and Nurse Practitioner who will take the time to review any data I bring them and explain what they are doing and why. And at the risk of sounding arrogant, I'll add that I am probably better educated than many of their patients--a Ph.D. and more than ten years working in training medical personnel. So they don't water things down for me.

So...I encourage everyone to continue to challenge their professionals, but stay open to the fact that there is no universal conclusion that applies to each of us. We are unique.

[Dayatatime]

Unique indeed. My own conclusion with this disease is take absolutely nothing for granted. A G7 can be every bit as aggressive as a G10. There are no guarantees with anything cancer, especially a Stage IV diagnosis. It is definitely not a one size fits all treatment plan.

[Hidden]

When you’re right , you’re Drwrite..

[monte1111 in reply to Hidden]

I can't come up with clever things like that any more. The lupron effect. Maybe I should have my marbles whacked. If that doesn't help, at least I'll have something to juggle.

[Hidden in reply to monte1111]

The wonderful world of “ Loopeyron”.. They threw mine in the trash almost 3 yrs ago.. . No going back on that one. Icould not juggle..anyway.. when I see your handle; I wonder about the 1111 are you Monte the 4th ,or is one your lucky number? My dog is LULU and I’m on Tak-700 adt So thus = lulu700.. Enjoy this day ...😎

[Scorpio99]

There is a simple road map, if your PSA is 4 or above you need to get a biopsy to know for sure if you have prostate cancer. If you do diagnose positive for it then follow your oncologist's advice on the proper treatment. This is nothing to fool around with!

[baw1955 in reply to Scorpio99]

Agree on the "simple road map" through positive test for PCa from biopsy. Then the road forks -- one leads to Urologist, the other to Oncologist. Multiple forks from these two branches. If I were standing at that first fork and want knowledge -- this community is for you because of the wealth of information available to inform you in making that first critical decision. Treatment or wait? Once that decision is made and acted upon, our stories are unique -- why not share them so others can envision life with: an untreated and vulnerable prostate, no prostate, or a medically modified prostate.

[Hidden in reply to baw1955]

I’m medical modified ... what the fork? Great post . Thanks

[bobdc6]

"I feel lucky that I have an Oncologist and Nurse Practitioner who will take the time to review any data I bring them and explain what they are doing and why."

That's why some of us are here, to learn where to go, to learn about various treatments and their side effects, to learn what doesn't work, and why.

Now guys who need an oncologist can ask you, a valuable asset.

It could be too, that misery loves company.

Bob, G9

[Hidden in reply to bobdc6]

The great state of Misery ... is getting fuller by the day .. Like trump said “We are Full up “ can’t take anymore ..Not a fan of his politics except for the entertainment value . For me it’s healing to speak with others in the same boat ... we all tangle with PC and adjust to the best of our abilities.. Good luck , keep moving..

[ewhite999]

What I’ve noticed in my three years on this site is that we share many of the same standard treatments - Lupron, Xgeva, Zytiga, etc. However, Prostate removal and radiation treatment have been done by some but not all. I’ve had neither but starting to wish I had as my prostate is starting to wreak havoc down there requiring two TURP procedures. The common response to removal is it’s too late, it’s already spread. I get that but while removal may not prevent it from spreading it would have prevented the blocking of my urethra and the need for two TURPs which ain’t no fun.

[paulofaus in reply to ewhite999]

Same happened with me, I had two TURPS, 1 month apart and I still have major issues. I feel I should have had an RP early on, but I chose not to. We all have to make decisions with far reaching consequences, without being armed with full knowledge.

[Hidden in reply to ewhite999]

3 yrs is one more than i for reading HU. .. Great that we are still here.. I too have some sort of prostate but.. i did do RT... Not in terrible pain so can’t complain. Sorry for those two turps .. I don’t know what the future will bring for me .? None of us do. Everything is so clear in the rear view mirror . I’m learning to focus on the present ....... my urology and chemistry are whacked out ..also ... The flesh is weak , im working on the spirit .. Hope things improve for you .. Take care.

[pjoshea13]

While we are all unique, most of us are less unique than others. So doctors tend to use a one-size-fits-all treatment protocol.

The trick is to get one's doctors to be interested in you as an individual. Even so, there are limits to how far a doctor can stray from standard treatments. One doctor told me: "I have no problems with my patients - it's the next-of-kin that worry me."

-Patrick

[monte1111 in reply to pjoshea13]

"I have no problems with my patients - it's the next-of-kin that worry me." That is funny in so many different ways. I must be morbid this morning. Apparently in China there is a custom of whacking the doctor if the desired results are not achieved.

[j-o-h-n]

"a Ph.D. and more than ten years working in training medical personnel."

Quite impressive!!!

I too have a PHD, a Poor Harried Dumbfounded Pca patient.

Every time I challenge my doctors, they yell out OKAY NEXT!

P.S. Thanks for the advice DrRite.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/15/2019 1:45 PM DST (Uncle Sam's Birthday)

[Hidden]

Just remember one thing. The practitioner you go with is biased toward whatever he is skilled and experienced with. Typical urologist will recommend RP surgery. A radiation oncologist will recommend some form of radiation -- brachytherapy, external beam, whatever. No one I saw locally recommended HIFU since they had no experience or capability with it. I was advised to go with external beam radiation. After doing research I chose HIFU and had to go out-of-state and out-of-pocket to get it in 2016. I hear that now at least some of the cost is covered by insurance / medicare. So far so good.

[AlanLawrenson in reply to Hidden]

You are absolutely correct as far as the specialists recommending their specialty. I know of 5 specialist all saying their specific specialty was the best treatment. A friend said to the fifth guy: Four of you are wrong to a lesser or greater extent. After all they are businessmen or women as well. In all developed countries or regions (eg Europe) there are professional bodies that lay down strict guidelines, which are generally slow to adopt new protocols. I am pleased to say that the AUA and their European colleagues are moving quicker to add new drugs etc to their Guidelines.