Advanced Prostate Cancer
4,534 members4,380 posts

WE MUST DO MORE

Troops:

As a long time PC survivor and with the clock ticking, I want to do something to move us forward in the fight against this disease. We have huge amounts of data and information sufficient to create a guide for all to use. We are wasting, as are most docs in the game, huge amounts of time and energy in repeating the same mantra daily, as the many posts on this site demonstrate.

PC, as you are all aware, is a common disease that follows, for the most part, a pattern as it consumes our bodies. There is no magic involved in how it invades and evades capture. Once it has returned, or spread, it is a lethal enemy that we cannot defeat on our own.

What is needed is a concerted effort to build on the foundation that those who have gone before us built before their demise, and ours to follow. We will not be able to save ourselves, but surely, with our demise, we can do something for those to follow.

We spend far too much time on this site in going in circles-in my view. Venting is fine etc. but it does not lead to progress or action. Nor does false hope that some treatment modality is a magic pill, for we all know there is NO cure for PC once it has spread.

I am being blunt here because of my frustration at the waste going on as men come to terms with PC.

We need a plan of attack, to get organized to present the FACTS to men-and their families etc.

We must get focused in order to do the most good. Right now, are are shooting off in all directions and accomplishing little-my view again.

With help, we can set up what I propose easily and maintain it over time. It will help all of us as well as for medical to be able to keep up to date.

We have a huge bank of knowledge and experience in the battle, but it is being wasted as we keep going in circles in repeating the same things, often creating more confusion in the process. This delays getting prompt treatment, creates more stress and strain on both us as well as the medical system, wherein far too much of their time is spent on repeating the same scene.

I am thus proposing:

1. set up a guide that can be used for the newbies in getting started on the battle. This is easy to do, as there are not a lot of options, but someone has to take the lead on this.

2. set up a guide for end stage men, that includes the most up to date treatment modalities in a tight package so it is easy to use and follow.

3. work towards supporting those researchers who show promising results by getting more of us onto drug trials as soon as possible. it is taking far too long to fill up most trials and these delays are slowing progress in the battle.

4. set up a guide to assist men in coming to terms with dying of or with this disease, and in promoting living large with whatever time remains. We can feel sorry for ourselves or choose to live large while the battle consumes us-this is a choice we can all make.

5. set up a guide to handle the final days in the battle. This is a tough one but I feel must be done, because few seem to want to talk about their impending demise and face the fact of PC probably taking their lives earlier and/or much earlier then would otherwise occur. This refusal to face the facts, again leads to lost time and energy as some attempt to find some magic pill, when there is not one, at present.

I see no point in denial, in fact, see great harm as noted above. It is not easy facing death, but until and unless one does, one cannot focus on living and getting one's bucket list checked off.

Please chew on this post and give me your thoughts. Daryl, not sure what shape you are in, but I will whatever I can to help set this up, hopefully with you as the lead. We again, have great talent and skills within our group here that we need to organize and become an effective fighting machine, at all levels.

Thanks all.

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Malecare should have the resources--but there is a lot they do.

Nalakrats

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This is an excellent post, and all great ideas. As a stage 4 with soaring PSA and daily struggles, it would be a welcome addition to our knowledge base to share these concepts in an easy to understand presentation that can be updated and edited as we learn more.

I am a work from home professional consultant with many years of development of operational excellence models and guides. I am willing to do whatever I can to take part in this and help to get this done - please let me know what the plans are - time is not something we can waste at this point, and the concept of us all running around in circles to discuss the same situation over and over is not lost on me.

Greg

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Excellent idea. You are right, we do repeat ourselves for newbies over and over again and explaining what to expect when starting chemo, radiation, surgery, etc.

If we had a section on this that members can easily access, we can focus our comments on recommendations for specific situations that benefit from brainstorming and on offering encouragement and support. Both of which I personally get a lot of benefit from.

I’m happy to help, too.

James

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I thought it was a very interesting reflection / idea. In the end we all have the same doubts when we start the road or we have to change the route.

It would be very interesting to create this guide with the most frequent questions and doubts.

Here there are people very prepared so much in experience, scientific knowledge and capacity to transmit them.

I am simply a sick person and I do not have enough knowledge about the disease. But I can help technically in the creation of the guide. Although my native language is Spanish and my English may fail at some time.

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Some guides or even simple FAQs would certainly be helpful, especially for newly diagnosed men and their families.

I would caution against a one size fits all approach, which is a natural but not inevitable outcome of a guide.

The treatments for this disease are dreadful, and not especially effective. There are many choices facing each man, and considerations of quality of life, financial impact, time lost, individual beliefs and acceptance about death and dying, many many things that only the individual can answer.

Not everyone wants to become part of a clinical trial, regardless of their stage or condition. The delays in filling trials may be due to lack of information, which a guide might help. But it might also be due to the often extremely restrictive entrance criteria - which is the responsibility of the trial's directors. Enrollment may be diminished because of distance and travel times. Or it may be that many trials offer small chance of benefiting the patient, and men are voting with their feet. I don't claim to know, but I'm not sure I want to sign up for convincing men to enroll in trials. A frank discussion of the realities of being in a trial might be helpful.

Were I to contribute to such a guide, I would emphasize these points:

Always get a second (or third) opinion.

Take your time - prostate cancer is almost never an emergency.

All choices come with opportunities for good and bad consequences. Don't focus on just the good, or the bad, or you will probably live to regret your decision.

Every man has to choose his own path - what is right for me is probably not right for you.

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Thanks for the detailed, thoughtful post.

As a starting point for any man diagnosed with PC or metastatic PC, I suggest downloading the free Prostate Cancer Patient Guide from pcf.org

This guide is updated every December. I found it to be very helpful when I went from just ADT (after surgery and radiation) to the choice between abiraterone (Zytiga) and chemotherapy when I had a reoccurrence.

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I will be at the aua conference through Monday. Let’s chat by phone late next week. Email me. Darrylm@malecare.org

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Indeed 😉

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Those of you who are willing to help, please email me. I’ll reply next Tuesday I can set up a conference late next week call to get whatever ball ⚽️ should start rolling. darrylm@malecare.org

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ok Darryl.

I am free anytime to work on getting things rolling. When we started our prostate group in Vancouver many years ago, a few of us did in fact set a simple plan up, which of course had limited options as compared to today. That said, we had a small group, took turns going thru the med journals and updating the action plans we set out. It is much easier to do this today, although in the last stages, many more options if one includes all the drug trials etc.

Once we get the plan in place, we can then spend more time on getting the various research projects noted and assist in getting as many men onto trials as we can.

I recognize that there are many bumps in the road, but suggest that for now, we limit ourselves to treatments that are specific to PC and the direct side effects etc. For those who have other health ailments that might affect PC treatment, we have to be more careful.

Ok troops, lets rock and roll!!!!

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Great. I’ll call you when I return, next week

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I want to thank you all in advance for this guide that is so desperately needed. And for all of the time spent devoted to research, suggestions and support on this site. If I could add anything, it would be #6. Caregiver helps, do’s and dont’s. I can say I was flying blind on this journey, being female, not knowing the extent of the side effects, struggles, and insider view of this battle. This site has given me direction and knowledge, and hope. I’d love to help if there’s a need.

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Burnett1948.billyboy3, I agree with your suggestions. I have recurring PC and I have been told that my cancer is slow. The point I'm trying to make is that we are all probably different in our journey.

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well, lots to sort out, and yes more items to add to our list. I left out when the end is near, as I though it well covered by several books on death and dying etc. but it is sure worth putting a package together on this as well. Although I concur some differences, the fact is that most of us are gong to die of PC or the side effects therein, and my focus is on this reality. The more health concerns in addition to battling PC, the more of course, other medical issues come into play.

If we get the basics done this round, then others can take the torch and add other modules to our package.

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I think this is a great idea. Sounds like a lot of work but worth it it.

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Prosthetic ! Thanks...

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good eye 🦌

Good Luck and Good Health.

j-o-h-n Thursday 05/17/2018 4:50 PM EDT

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I agree with all here,this is an excellent idea & if i can help when i come out of brain fog days i will. It was so confusing for me first diagnosed to 7 years later only just understanding the treatments thanks to this forum.

So many things to learn the hard way on this trip & any short cuts would be greatly appreciated by all im sure

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and that is a major problem that for some reason, the med guys have not addressed. The start of treatments for PC is pretty basic, and easy to chart out for newbies, and we can get this part done easily.

The more difficult task will be to chart options once IHT starts to go bad, and where we must put our energies, by getting some control over all of the research work and trials now ongoing and more coming, for nobody is doing that.

we also do need to address the last stage wherein treatments are not working and we must deal with this as a part of the war we face.

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I think the battle starts with effective and comprehensive annual screening -- best chance at winning the battle is to nip it in the bud. IMO most men aren't thoroughly screened, starting in their 40's. Then we have the high falutin' USPSTF making idiotic, jackass recommendations to lighten up on annual screening, calling it "an individual choice" also saying "Screening offers a small potential benefit of reducing the chance of death from prostate cancer in some men..." Where do they find these people? They want to spare men the inconvenience of a worrisome screening result but apparently are OK with men showing up symptomatic and stage 4. Idiots.

uspreventiveservicestaskfor...

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Do you think they would say the same thing about screening for breast cancer?

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the stats are huge in regards to the early testing. Although I question the results, all I would put into place is for men to start getting a psa test at age 40, establish a base line and go from there, sort of like having your blood type taped to your wrist. There is no downside and once we get men to understand that testing is NOT some major terror-in fact I quite enjoyed my biopsy!!!!, then it will go a long ways to men actually getting on with staying alive!!!

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And don't skip on the DRE either. My PSA was a benign 2.7. DRE turned up an abnormality which got me sent for a biopsy and a Gleason 8 diagnosis. Without that particular screening test the cancer would still be growing.

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good point.

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This is an excellent idea. As a recent 'patient' I have found the medical professional highly variable in sharing information, helping deal with shock, etc. It was advice from a lymphoma cancer patient that got me started on my learning journey. Would some kind of 'decision tree' model work, that would take you down different branches depending on what you learn as you go?

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You bring out a good point. The fact is that most medical practisoners in this field, are so swamped that they cannot keep up with the best plan of attack in terms of various drug combos, research drug trials etc. -shocking when you think about it, but given that the researchers are ALL competing with each other for the BIG BUCK, it should not be surprising to see happen-sad to say the least that we are all guinia pigs in this but such is life, unless we force things to change.

I repeat my mantra, that each man has to taken responsibility to get up to speed on his own illness, stage etc. and then go about making informed decisions and NOT leave this to the docs. I also defend most docs in this war, as it is, at this moment a losing one wherein, no matter what they do, most of us are or will be lost.

My plan would be to start on the best options at each stage of PC, in chart form, so one can check off and get rolling, then, as his disease progresses, to go down the list and keep at it as long as one can or wants to. I recognize that there are many variables to fighting PC, especially when other ailments come into play and affect how and what can be done-and for these, leave this out at this time.

I welcome input on getting this going asap, as with each passing day, more men enter into the PC stream and many more are going from the rookie phase into no man's land.

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