Refusal of Treatment: Has anyone... - Prostate Cancer A...

Prostate Cancer And Gay Men
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Refusal of Treatment

Has anyone refused treatment and is allowing this disease to run its course? I have been fighting this POS disease for 13 years. I am NOT improving. I will only be 59 next month.

There is longevity in my family. I really cannot see dealing with this for another 30 years. No partner, no kids, no siblings. If someone can provide a REALISTIC reason, possibly I will reconsider. I'm not a moron, I have analysed my situation and see no redeeming quality to continue treatment. Treatment that only prolongs the inevitable.

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Death is inevitable for everyone and life prolongs the inevitable. Do you have quality of life, and if not, why not? I recommend psychotherapy (I found it very helpful) and whatever drugs you need to maintain QOL. The "problem" with waiving all therapy is that most palliative therapy for prostate cancer also prolongs life.

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Thanks. I am on 2 meds already. I see someone weekly.

I had gastric bypass 3 years ago. Lost 215 pounds. And I STILL cannot get a date. Maybe it's because I am now a thin bag of skin that can't get it up.

Last year a hemorrhagic stroke and this year I was hospitalized 5 days in isolation with erythema multiforme.

My right hip was replaced; it took 3 surgeries. I have had both knees replaced.

I AM a smart man. I am just tired of doctors, hospitals, tests and pharmaceuticals. I AM DONE.

Question to you Allen - do YOU have prostate cancer and also an advocate? Or are you solely an advocate?

Thanks for the reply. Happy New Year.

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That's a LOT of time spent in hospitals - I can see why you're tired of it. You can stop all treatment but i think when you start experiencing painful mets and fractures that may immobilize you, you will regret that. It sucks either way. I've had prostate cancer. I participate in support groups as well. I hope your new year is happier.

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Yes, just cannot envision doing this for another 30 years. I have an extremely high pain tolerance. Hell, I thought I just had bad arthritis in my hip. Finally, after walking on it for 6 months it was x-rayed. I had sheared the top off my femur. Hence, the replacement. I have just had enough.

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To anyone who lives in a state which supports Compassionate Choice if one's life prognosis is less 6 months, I think you are very fortunate. If anyone lives in NJ are you aware that end of life legislation is before the legislature and could be passed as early as the end of January this year? Please contact your legislatures and Gov. Murphy if you support this legislation and ask them to vote in favor of it and the governor to sign it. In other states, contact your representatives and ask them to introduce legislation. I am not advocating suicide or giving up if there is a reasonable expectation that continuing treatment will prolong quality of life. But if I ever get to a point where all I see ahead is suffering, being a burden on my caregivers and depletion of my assets, I want to have a choice. I am not there yet, but it would give me great comfort to know that I have an option should my circumstances change. MJCA, God bless you and take comfort that many people will pray for you to make the choice that is right for you.

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But you are living with no anti-hormone treatment and you still have your prostate and testosterone yes?

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How have you been treating the POS? Youre not improving but are you stable? Do you have QOF at present other than concern for possible progression of the disease?

You are fortunate being in the Bay Area as there is a gay mens PC group @ UCSF that meets I believe weekly. Wish I had such a group in Denver. I can get you the contact info if you wish.

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Having seen other men suffer the effects of NOT trying to treat this disease is enough reason for me to continue chasing treatments. I have had RP, 9 weeks of radiation, SBRT to the spine, and now ADT for the last year. None of it is pleasant, and, yes, the sex is gone, but there can be other pleasures in life and I am still reasonably comfortable. I lost my partner a year ago and for me that is worse than any part of this disease so far. Support groups can be halpful I guess, but I also know of nothing in Denver, and introverts like me don't search for those options anyway.

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May I suggest that you post your thoughts in the advanced prostate cancer community too healthunlocked.com/advanced... there are many guys there who have endured one or two decades of treatment. You may get a perspective you may not yet have envisioned.

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Thanks Darryl, I may do that. I am not a stubborn individual, but once I have made my mind up it is difficult to dissuade me. Pulling on my emtions won't work, if there is data that would change my analysis; great.

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I completely understand. The side effects...the depression the loneliness...its horrible. Nothing to look forward to that makes any difference anymore.

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You can explore the right to take your own life as I have. You would need to be in a state where suicide is legal. I am currently attempting to get residency in vermont.

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I am not taking my own life by any measure. Hell, I have A LOT of living left to do. For me it boils down to two things: 1. What is the efficacy of the treatment? and 2. What is the quality of life on treatment vs no treatment?

It's pretty simple. If a treatment makes sense, hell yeah I'm first in line!

Thanks. Best wishes.

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I feel that treatment only makes sense if its going to save my life. Hot flashes, nausea, fatigue, listlessness, erectile dysfunction, not being able to cum anymore, lack of sexuality, a complete breakdown in musculature and massive depression are not the way I want to live. It's not living just existing.

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Hi,

I felt that way the other day. After hearing from others, I don’t just want to curl up and die. Life IS precious and not to be wasted! I’m going to keep fighting this mother f*cker of a disease and one day laugh in its face!

All the best.

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I hear you and admire your determination and will to live. I just feel like I've lost too much and that I'll never get it back. My only alternative now is chemo and I DON'T want to go through that again. So I am faced with a tough decision. Do I just let it advance or do I do fng chemo? No good alternatives and nothing to look forward to. The only thing I have that I enjoy is my cup of coffee each day. It gives me the pick me up that I need, but other than that there is nothing. I wish I could take oxycodone all the time. At least I would feel good, but it constipates you and creates other problems. The depression is the worst of it. So difficult to get past and mostly caused by lupron.

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My heart goes out to you. These are decisions only you can make. Personally, I believe where this is life, there is hope. At the same time, we should be able to make our own choices.

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You concern is valid, but might still be misplaced.

It is an irrevocable decision that needs to be made with a clear mind. If you are taking medications and going to weekly counseling, that would be evidence maybe your mind is not currently so clear. You really need to discuss this with whoever is doing your counseling.

I wouldn't take any drastic action without some long and serious conversations with that person and at least a several month delay between making the decision and acting on it.

A side effect of a number of popular psychoactive medications is suicidal ideation and action. If you are taking two of them, I would get a medical professional to rule out this side effect before taking any action on your thoughts.

You don't mention any of the effects of the disease. I find that a bit alarming. You sound more like you are sort of tired of life.

Without knowing more, if I were a betting man, I would say it is your medications that are talking.

Your first point of order I would think would be to share your thinking with the physician who has prescribed your current medications. Ask him or her if they think it might be your medications talking and whether or not you should change medications before making any irretrievable decisions.

And after all that, you appear to be uninformed about the natural progression of prostate cancer when you suspend treatment. As you discuss this with your supporting healthcare professionals, you may want to discuss with them what the end state of prostate cancer looks like. When you discuss your thinking with them, armed with this information, you will likely find the better decision is to continue with treatment.

PS: The pace of progress with new treatments is advancing so quickly in the last few years, the treatments are no longer so bad. And next years treatments even more so. Now is not a good time to be in a hurry to forgo these new treatments.

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Hi

I understand what you are saying. Yes, I am on meds BECAUSE due to medical issues aside from cancer. Lupron screws with me a lot as well - should I discontinue that?

Your posts sound more like those of an advocate than a patient???Which are you?

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Lol, look around this forum. I don't sound like an advocate. And I am not one.

Check out some of the posts here on lu177. That might hold you off a few years until some of the better stuff becomes available.

In the meantime you can get a psma scan to confirm that it will work for you.

It sounds more and more like the meds talking coupled with bad side effects of ADT therapy. Both are probably fixable.

Are you using estrogen patches. If not, ask your doctor why not. And go get a few second opinions while you are at it.

In the meantime switch to monthly shots, so you are able to dump the lupron on short notice.

So, are you using estrogen patches or not?

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Dude I have been fighting this for 13 years already. Just had a PET, CT and Bone Scan in the past 1.5 months. I have so many radioactive isotopes in my system, I glow at night. 😉I will be 59 next month. I do not want to be a cancer patient for the next 30 years. I know metastasis is quite bad, but I know it’s going to happen - there are just too many years left.

Over the years I have had 5 rounds of Lupron for a total of 6 out 13 years.

My Uncle passed from metastasized prostate cancer. It went to his bones. I understand.

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"Dude"?

Oops, I forgot to use internet enabled mind meld. LOL

It would seem to me you have some anger issues. You really shouldn't be making these kinds of irrevocable decisions while you have anger issues or on medications that have suicide listed as a side effect.

You need to have a good talk about this with whomever is prescribing your meds.

Even if you cured you pca tommorow, your age would indicate the natural cumulation of ills.

At this point you should at least give lu177 a try before making any final decisions. And maybe experiment with a new oncologist if you are unhappy with with you current treatment strategy.

And you never answered my question about estrogen patches. Should I take that as a no?

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You do not need to be so condescending, "Oops I forgot"...Have YOU ever heard of humor OR levity?? And I AM a native Californian; it's part of the vernacular.

I'm not some moron from the backwoods. You, sir, know nothing about ME. How DARE you insinuate ANYTHING about me based on two posts?

Yes I am angry; I have a right to be right now. And thanks so much for pointing that out. If I can find empirical (yes, I do know big words too, DUDE) data that will dissuade me...of course I will change my mind.

I plan on speaking to my GP. The oncologist is new. I like him. His CV is incredible and I am going to Stanford (that's a big school called a University out West).

A friend told me of the Burzynski Clinic in Texas. Sounds interesting.

And, NO never have been on estrogen patches. I was on a 150mg Casodex daily until I received Lupron 2 weeks ago.

I had seeds and 36 sessions of radiation. I have been told I am not a good candidate for additional radiation.

I realize you ARE trying to help and I appreciate that, you just need to work on your delivery.

I'm a nice guy but don't be condescending, rude and impolite, because you will receive it back tenfold.

Happy New Year.

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Sure

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Let's start over please.

Hi, my name is Mark and I have been a total A-hole (yep with a capital A). Another member put things in better perspective.

Please accept my apology. Like my late Mother, when provoked, I can go 0-60 really fast. I know it was not your intent to provoke but to help; that can be the bane of the written word as compared to the spoken word.

I just received this news Thursday. I've been freaking out, I think you figured that one out. I was basing my decisions with the idea I have plenty of time left. I was provided a better perspective on what time may be left and that changes everything.

I seriously do not think I am a candidate for any type of beam therapy - but it does not hurt to ask.

Again, my apologies. I DO wish you and yours a Happy and Healthy New Year.

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MJCA

1. All the more reason to talk to your therapist and your prescribing Doc about your plans to commit suicide the most painful way that can be imagined. And you indicated that you are aware of this. That means you are not thinking clearly... definitely not a good time to make such a decision. Reason to explore if it is your medications doing the thinking for you.

2. LU177 is not beam therapy. It may even scrub the prostate cancer out of your system. Check out the info on this board about it. You will likely need to go to Germany to get it... but maybe there are some trials now in the US. I think there are... maybe at UCLA?

3. Are you saying you were on monotherapy Casodex until recently? There is a fair chance your doc is from the "backwoods" then. If you are taking Lupron, ask your doc for Vivelle estrogen patches. If he doesn't understand your request or has no experience using it, you need to really quickly change docs again.

4. PCRI is located in LA. They do two conferences there every year. Go signup and attend one, so you can get up to speed on what all the most current treatment options are:

pcri.org/2019-mid-year-upda...

5. And go talk to your prescribing therapist about whether you are on the right meds. Really.

PS: If anyone has any corrections to what I am saying, please make them.

PPS: Yes I do have a tendency to talk down to people if I think that I am in fact talking down. I do talk up to people as well, but not without good reason. LOL

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Hi.

I don’t know where suicide came from - but hell no. That’s not on my mind unless you are including refusing therapy as a form of suicide.

After reading replies from others, I do realize there are a number of treatment options out there. I’m not a quitter, far from it.

I have a wee bit of reading and I need to make inquiries with my doctors.

Here’s the deal with the Casodex. It appears ALL the Urologists in Silicon Valley are under one umbrella and they are all in contract negotiations with my insurer. Since the urologist was out of network, Lupron would have cost me a lot of money. That would have been fine, except for the fact that I am paying $1100/month for COBRA. In lieu of that, the urologist prescribed Casodex, I too thought it was not in my best interest. That’s when I changed over to Stanford. I was on Casodex only a couple of months.

I have learned over the years that G_d gave me a good head on my shoulders. I too, used to talk down to people. I realized that I am smarter than most around me. By talking down to others I was only showing my own insecurities by making others around me feel dumb. When someone is intelligent, he is smart enough to know he does not need to lord it over others. In the corporate world, I learned that by treating others with respect regardless of their intellect was crucial in order to garner mutual respect. One can respect you just for your title OR you can be respected as a human being not just a title. When others asked questions I considered dumb, I patiently and thoughtfully answered their questions in a manner they could comprehend. Very quickly people gravitated to me when they realized I was fair, I listened, I answered their questions and that I was a part of Senior Management. You’re a smart man, think about it. As I said, it’s all in the delivery. You can push people away and have them despise you or you can treat them fairly at their level (without being condescending) and they will recognize you as a leader and do anything you ask of them. That is my pearl of wisdom to share with you. Please think about it.

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What is the history / trajectory of your psa?

Is your complaint about the effects of the androgen deprivation therapy?

How long have you been on androgen deprivation therapy.

Did you get a 1 month, 3 month, or 6 month lupron shot?

Have you made an appointment with your prescribing doc to revaluate your pyschoactive meds?

When is your next weekly therapist visit.

Why don't you call your oncologist's nurse and inquire if you can get an over the phone prescription for some estrogen patches. It should be a no brainier.

Call up Obamacare right away and determine what your options are there. If you haven't already missed a deadline you may be hours away from doing so.

PS: I am doing this on a cell phone. All the off topic verbiage makes it sort of difficult to read and respond. For my purposes your feelings about me are off topic.

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I am using my phone as well. You intrigue me, let’s take this offline, markjca@gmail.com

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No thanks. It then becomes too personal.

But I encourage you to answer the questions anonymously.

And when you talk to your therapist, and prescribing Doc tell him/her that others thought you were having suicidal ideation, even if you don't believe you were.

That's why everyone else here is scared to help you.

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My onc strongly suggests that I dont discontinue the lupron. She states that the cancer would go into overdrive

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Truly sorry that there is no joy in your life now. You sound absolutely exhausted with all of "it." And terribly lonely. I have no idea what I would do if I were in your situation. Cannot imagine it.

No sermons, lectures, or "the sun will come out tomorrow" BS. Good luck to you with whatever you decide.

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Thank you very much. Have a Happy New Year!

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Mca...we're the same age.

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I have some of the same feelings you do. Then my case it was questionable whether or not I had cancer at all but the prostate came out. I've been disease-free, thank God if I had it all, for the last 10 years. No one told me that this disease was in be socially isolating and devastating. I have not had sex in over six years, trying to have dates is impossible once they find out I have the erectile dysfunction. Most weekends I spend alone in the house. I tried social groups. the end result is always the same. Once they find out I have erectile dysfunction, the phone calls are delayed in being returned if they are returned it all or they're all busy with work or some kind of excuse trying to worm their way out of it

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I know, sometimes G_d throws you a curve ball and you just weren't expecting it. I understand your frustrations completely! You're a cute guy with a beautiful smile. I will not say one of those patent "lines" to you, since I hear them all the time. I Will wish you a Happier and Healthier 2019!

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Are you on lupron or is dysfunction due to surgery? Did they take both nerves or was surgery nerve sparing? I thought that once testosterone was at normal levels again the horniness would return and with that, erections.

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Lupron is devastating stuff: no sex drive, shrinking genitals, no ejaculate, increase BP, bone density issues, hot flashes, emotional roller coaster, depression...lovely. I've gotten conflicting info re life after Lupron. I hope to hell that its side effects are not permanent but I suspect that the shrunken genitals, no ejaculate, and semi hard dick are here to stay. A new "normal," as it were. Good luck to you!

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Let's keep in touch

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I have no advice to offer. Just want to send you my love.

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