Future treatments or not

On my last thread, about my latest PSA reading, An was the last poster, and I was simply asked:

"David, what are your thoughts on chemo and HT as treatment options for you at this point?"

I decided that it's a very good question, one that is on my mind, and that it warrants a new thread.  I am open to any opinions and view, unless your only intention is  to call me names or ridicule any decision.  If that is the case, please don't respond, as it won't be helpful, to either me, or the board.

Such decisions are very personal, and very subjective, and we each may have to face such a decision one day, if you are dealing with advanced PC.  Like all things PC, there is no exact course, there is no all right or all wrong in one's choices.  So with that in mind....

A quick review to those not as versed in my situation.  Was dx. in 8/2008.  My PSA had tripled in the year before I was dx.  Had open surgery in 11/2008, with some difficulties.  Surgery failed fast, BCR confirmed.  Also, had endless chronic stricture problems, spent total of 1 1/2 years on catheters.  Then had Salvage Radiation, 72gys worth spread over 39 sessions.  Was administered incorrectly with an empty bladder each time, thus burning my bladder and bladder neck.  After spending 1 year with a Suprapubic catheter, underwent Ileal Conduit Surgery, and had my bladder by-passed resulting in an Urostomy/Stoma.  And top of it all, the radiation failed to stop or slow the cancer, and in 4 years, my PSA has risen to 80+.

The radiation damage did so much harm to my body.  It left me with severe chronic pain, in just about every part of my body below the waist.  I have not had a single day without bad pain in nearly 3 1/2 years.  I am on heavy amounts of fentanyl and opiate drugs, but even then, the pain can be unbearable.

Final factor, my oncologist only deals with advanced PC and advanced BC patients.  He does not believe in the early use of HT.  This worked well, because neither do I.   So for over 2 years, he has been seeing and treating my pain and other symptoms.  He said that I have an unusual amount of cancer related pain, for someone that is not in end stage condition.  He works closely with me on pain management, and other medical quirks that have arisen over time.  Lots of severe neurological pains, plus endless bladder spasms, even though my bladder is not connected.

The game plan, due to my severely diminished quality of life, is to not go on to advanced PC treatments until there is any evidence of mets.  Doctor does not want to add any more to what I am already dealing with.  He feels there is a time and place for either HT and/or Chemo in my future.  With a PSA now of 80 plus, we are starting to push that window.  He has said, that he has had a handful of patients like me, with no evidence of mets even with a PSA of 100.  So yes, its a gamble, but its not being done foolishly or without reason.

My doctor strongly feels I am in a difficult place, because he feels that a PC dx based on rapid PSA rise before dx. can make it all but possible to stop or slow.  There are studies that support this view, some doctors believe it, others do not.  Based on my rapid treatment failures, and continued fast PSA rises, it seems to give credence to this view point.

He said, we could do HT now, and of course it would drive the PSA to zero almost instantly, but he believes in my case, it would be more of a masking effect.  He believes that HT would not last long under my circumstances, so it may or may not prove anything to go that route.  Plus, he doesn't want to add  the burden of all the HT side effects on top of what I am already suffering from, especially if its not going to prove anything in the long run.

He still talks about doing several heavy rounds of chemo instead of HT, to shock the cancer, to buy me some time.  Of course there are serious side effects with chemo, but as he said, they are generally shortly lived.

Any future radiation is off the table for me, he would not order it, nor would he approve it, not even if it were for spot radiations for mets.  He said based on prior radiation damage, there would just be too much risk involved, and little gain.  I already have so much severe radiation damage in my body, and still is spreading now, this far out.

I take all this in stride.  It is what it is.  For starters, no male in my family has ever made it past 65, regardless of cause of death.  That's not to say I could live longer, but it is a historic factor.  I believe that my cancer is incurable, and its only a short time, perhaps a year at best, before mets show their ugly head.

Right now, I am more of the mindset, to pass on any future treatments for the cancer, HT or Chemo, unless a really convincing argument could be made by my doctor that it would really prove anything.  Not saying I won't or can't change my mind, that's my decision to make.  My quality of life is still in a downward spiral, and shows no sign of improvement.  The pain is spreading further in my body, and is becoming harder to control.  So what incentive do I have to want to live lots of years, if it were possible?  I am already suffering enough in my body, sure don't want to do anything that would make it worse.  I have my mind, my dignity, and still feel that I am in control of my destiny as much as I can.

Also, I have a completely normal sex life, its as if nothing ever happened, other than the "dry" part during orgasms.  It's been the one shining light in a very gloomy journey.  Don't in particular to want to mess that part up with other treatments, rather enjoy what I have, for as long as I can.

If any of you suffered with as much pain as I do, I feel you would understand why I am not interested in extending my life by all medical means.  Something is going to get me regardless.  Most men are afraid of death by PC because of pain.  Well, I have already been living the pain part for over 3 years, most men only suffer for a few months at the end of a PC battle that is lost, not years.  And if I could live 10 more years, but have to live in the pain that I do now, I simply say, it's not worth it to me.

My financial affairs are now in order, my wife has no money worries, we have no debt.  In the bigger picture of things on the side of faith and spiritual matters, I am ok with it.  I have no fear or worries about death when the time comes.  No, this doesn't mean I am giving up.  I am choosing, not giving up.  Choosing quality of life over possible length of life.  I don't want to suffer any longer than I have to, so I am living all that I can, while I can.

I may or may not change my mind, again, that's for me to decide.  Perhaps a better treatment will come soon, less invasive to my quality of life.  Certainly possible.  I will keep an open mind.  And of course, medical miracles do happen, its possible my PSA will peak out, no mets appear, and I will be able to live a few more years without severe suffering.

My wife is 100% on board with this line of thought.  Of course she doesn't want me to die now, or even 20 years from now, who does?  My doctor is on board, he will work with me in any of the possible scenarios ahead, and he realizes, its my life, my choice, my decision.

I hope some here, will understand my stance, and how I came to feel this way.  If not, I wish you well.  I will continue to stay here at HW, and its my intent to continue to help as many people as I can along the way.

We each have to make our own decisions about our health, and I respect yours.

David in SC

 

Post Edited (Purgatory) : 11/30/2013 6:39:47 PM (GMT-7)

I thought I would mention that Zufus got years of cancer control taking a small dose of estrogen instead of typical hormone therapy. He reported minimal side effects. That might be something worth considering.
Good luck with the decision.

It's helpful to hear your thought processes. These are things any of us may someday need to consider.

Our decisions have to be personal, made with our best information and weighting factors. Your decision is well-informed, and that seems to be all one could hope for. Will we make a wrong choice sometimes? Of course, later events may prove that we missed something, or didn't give proper consideration to some factor or interaction of factors. But still, the decisions have to be made with what we know at the time.

It saddens me a bit that the tenor of your comments is somewhat defensive. I should think that of anyplace, this would be the place for support not challenge. Perhaps people are a little too strongly worded in their "advice"?

I know I've appreciated perspectives shared sometimes that I hadn't considered. There were a couple times on this board where people stated things rather strongly that my doctor team did not agree with. That left me quite conflicted at the time, but I did have some good discussions with the doctors anyway.

All the best for you! You've been dealt a difficult hand to say the least.

Purg,

Interesting decision point. One that I can't let myself get to, for a financial reason buried in the fine print of the policy. If I fail to follow the advice of my physicians on any particular subject, the insurance company is no longer liable to cover particular issues related (even remotely) to that subject. So if the majority opinion of the docs and the ins company is "Do A", then I do A or lose coverage for the future.

One comment on Lupron. It MAY mask your situation by driving down the PSA. But it might not, if your PCa is already castrate resistant. That was one of the reasons I did HT earlier. The docs wanted to see what the reaction to the Lupron would be, in order to decide what the medium term options would be.

Not a suggestion, just something to ask about if/when it comes to the table again.

I'm not sure if your post is an update of your position on treatment only or if it is acceptable to reply with my thoughts?

If acceptable to reply with my thoughts, I'm thinking along the same lines as Squirm. A "trial" of HT. It would only be for three months (or even one monthly shot) and negative QOL issues were not realized by my husband in those first three months.

We were told that chemo was not that effective for Pca, because chemo attacks rapidly dividing cells and generally the only rapidly dividing cells in Pca would be if bone mets were involved. Mr. WW had to do chemo because back then, it had to be done before he could be given Zytiga.

Can micro mets cause pain? I really don't know.

If you feel this reply is off sync for the intention of your post, please feel free to have it deleted.

Wishing you all of the best!

Sqirms suggestion is a good one. The scientific method. what do you have to lose but some pain. personally I think you will live past 65 and do not think 80 psa is that high for 3-4 years post treatment., with no additional treatment. And as you advise us to be thoughtful in our replies, I will ask the same of you. I say this only be because, frankly I have seen some terse replies to posters who have tried to present hope to your case.

David,

You've been through a lot and I can't even imagine the pain you are dealing with. I hope you find some pain relief real soon.

Let's ask the question this way....if pain wasn't an issue, would you do the HT thing?

I realize that is a hypothetical question given your pain, but perhaps that will make the decision easier.

Willl be supporting you and your your decisions regardless.

Jerry

David, chemo is not a simple, straightforward treatment. Often, especially with prostate cancer, it requires "cocktails" of cytotoxic agents, often with prednisone. I have a friend who has been on chemo for one year...fortunately, she's tolerating it pretty well but there are all sorts of other treatments she has to have to offset the effects of the chemo such as drugs to stimulate her bone marrow to produce white blood cells and drugs to prevent her bones from becoming brittle, etc. No chemotherapy protocol uses just one drug and there's usually a trial and error period to determine what the patient can tolerate. Dosages are adjusted, and the mix of chemo agents are often changed around.

It would seem that the first order of business would be to try to get a definitive answer on what is causing your pain. While the radiation is highly suspect, there are other conditions that could be causing it or, at the least, contributing to its severity. Without a clear diagnosis, any attempt at treating the pain may just be whistling in the wind.

The issue of QOL is a huge one, and one that is not easily addressed. With the addition of your hip and leg giving out on you and the need to use a walker, it would seem that there is some urgency to find out exactly what is going on before initiating any treatment (just my opinion, of course).

If, as you and your onc believe, the pain is related to the PCa, then it seems logical that the next step would be HT to see what effect it has on both your PSA and pain levels. If it doesn't work, it doesn't work; you can then scratch that off your list and starting looking at chemo as a next course of action.

Whatever you decide to do is what's right for you. It seems that you are at a critical juncture in your journey, and hopefully you and your medical team will come up with answers.

Thanks for the replies thus far, been interesting reading each of your perspective on my exact situation.
"What-if's" are always an interesting game to play, if contemplating them for someone other than yourself.

What makes this difficult, is that like others here, I do have other medical concerns that are not PC or any other cancer related, which add to the mix with my greatly diminished quality of life.

My pain is officially diagnosed as cancer pain. Cancer pain does not have to be directly related to the cancer itself, let's say, from a tumor, or even a met, it can be related to treatments (successful or not), and can be caused by complex interactions in other parts of the body not even being effected by cancer.

I have had a long list of really weird neuro related problems most of my adult life, I don't talk much about them. I have driven my share of neurologists nuts over the years trying to figure them out, without much luck. The general opinion, is if you think of the nervous systems as being one's electrical and wiring system for the body, I have all kinds of "burn outs" and "shorts", just like you would in an electrical problem. Body gets a lot of confused signals, and have for years. MS was suspected for a long time, but ruled out, because of some inconsistencies with test results. The new oncologist that is helping out my doctor brought up the subject, and has her own suspicions.

One remark that still stands out from the big doctor as MUSC, was when he said, in all his experience, he had never seen anyone with so much severe radiation damage in my lower areas, hips, bladder, etc. His words, and I remember them clearly, "Who ever did this to you, you should sue them for every nickel they have." Very interesting coming from the mouth of a top specialist.

I do not feel hopeless, so please don't interpret what I wrote. I believe in hope, and realize that who knows what could ultimately happen out there, or what might be developed, or what could still be tried.

And to those that speak of the horrors of chemo, I know this is true, and never for a moment think that it would be a walk in the park, but its shorter term than any of the HT programs. My doctor has first hand experience and success with a handful of advanced PC & BC cases - with a shock and awe approach with chemo, with difficult cases. Said it wouldn't work for many that way, but said it has worked, and still feels it might be more appropriate when the time comes, then going the HT route. It will be interesting to see what the new members of my "Gibbs" team will think of this plan, or if they will introduce some new thinking.

Jerry, I will answer you directly, as you said, and I paraphrase, if it weren't for the pain issue, would you consider HT? Or along those lines. Good question. Answer, I don't really know, but unfortunately, the severe chronic pain as been diagnosed as permanent by every doctor I have seen so far, and none of them feel there is any chance of improvement, only a further spreading of the pain throughout my nervous system. So back to your question, don't think I will be in a position to try it based on your proposed criteria.

My doctor strongly feels that HT in any form, for any length, would definitely compound my pain and other troubles, he never waives from that.

If I were already dealing with full or partial ED, and not dealing with such severe pain, then I think I could answer yes, to your question. Under those circumstances, I would have little to loose in trying a round or two. But that is not my circumstances.

Sephie, my doctor just wrote a long technical letter that is being forwarded to the VA doctors, bringing them up to speed on some of the peculiar nature of my PC case. And in it, he talks about severe neurological damage, and spreading damage, as the direct results of radiation damage. He puts most of the blame on that factor alone, and added, that he sees little if any chance of improvement, and that its more likely that it will continue to worsen over time.

And Sephie, both my doctor and the new one, are hoping these special ordered MRI's next week will shed some new light on what's going on with all this falling down and hip failure. It only started less than 3 months ago, and its quickly worsening. While shopping today at a grocery store, I all but fell to the floor at least 5-6 times in just a few minutes. Hoping to have this walker nonsense settle by mid week.

Thanks again, for all your replies, care, and concern, I appreciate all of it.

David

Post Edited (Purgatory) : 11/30/2013 8:19:21 PM (GMT-7)

some times it helps to sort of step outside of the process.
if you did not have cancer and a friend came to you with a history similar to yours and asked you for advice, what would you say to him? sometimes doing smething like this can help you clarify your issues and come to a decision.
best to you.

I'm worried about being on HT in the future but will be on it in a second if I need it to live longer.

I've seen a few people on HT, and I've read about a whole lot of you on it. I know it's not fun, but it seems to do what it's meant to do.

Logo, I have no idea on earth what you just said or meant. Second sentence? Did you mean in my initial reply to the earlier posts, or to my initial post? If in the my response, I meant nothing wrong, nor was it my intent. If it lit you up the wrong way, I apologize. I only meant, that it's difficult either giving advice, arm chair quarterbacking, or in the case of my exact words, "What ifs' - what I meant, its hard to do accurately, without know all the persons medical history and other factors that would have to be known to be accurate in advice. There was nothing on my end to indicate the "negative" you are trying to make out of my words. So let's not go there.

And there isn't an ounce of martyrdom in my stance, if anything, the opposite. If you understood my general thought process, I simply apply my brand of logic (right or wrong, its just how I think) to a given situation. I examine something, size it up, figure out my odds, and then draw a conclusion. I may fool everyone and live to be 100, no one knows with certainty, except that we all have to die one day, that's the only certain part to the equation.

However, based on what I know, what I have learned, what my doctors have told me over the course of the past 5 plus years, I draw the conclusions that I have in this discourse. And they are, my opinion of my own situation. None of it is written in stone, and that is why I plainly state, I may change my mind at any point. This how I feel now based on what I know now. Why is that hard to understand? And I am talking only about me, not drawing conclusions based on partial information about another person. I know "me" pretty well, how I think, and I know exactly what my doctors have told me, and I have done a pretty good job of always sharing these medical opinions with the folks here, whether they believe, agree or not.
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mauiviv, that is a very good and fair question. I have helped a number of people in "real life" that were newly introduced to having a PC diagnosis. How I answer them, really depends on what info they share with me, and what their particular diagnosis happens to be. For the sake of this discussion, if someone came to me with my criteria, and as you suggest, I didn't have cancer, not sure I would feel remotely qualified to tell them anything, other than a general message of hope. Or at the least, I would research on-line, and try to bring myself up to speed.

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DavidG, with you extreme young age and family, I too would be more gung ho on the quantity of life issues, even over the quality of life arguments. I know with your mother's situation (and basing it only on what you have posted), she's been recently in a position of dealing with a lot of serious pain. Knowing how and what she suffers, if she could live another 10-15 years, but with intense suffering, would you want her to? As a nurse among the elderly, my wife deals with family members every single day, that have to contemplate such decisions. She said what is typical, the families tend to want their family member to live at all costs, but after months of prolonged suffering without hope of improvement, many quickly change their minds, and will only find peace in their heart when the family member passes on and is no longer suffering. Again, a very personal and subjective thing, that would be hard for any of us to answer, unless facing such a decision first hand with a dear loved one. BtW, I hope your mother is at least doing better, and that her doctor's are keeping the worse of her pain in check.

David

Taxotere is usually given every three weeks for however many rounds the oncologist thinks is proper. My husband had 3 rounds over 9 weeks.

The effects of chemo can be much longer lasting than the effects of 1-3 months of HT.

Mr. WW still has a CBC that is way out of whack on so many things. Actually, his blood levels are the closest thing they (doctors) can come up with insofar as an explanation for his blackout, in which he broke his jaw in several places. His chemo was almost two years ago.

I'd be happy to share his last CBC with you via email if you would like.