I've been on this community for months and not seen anywhere that a lot of patients are irregular medicine takers, and some can't take a medicine due to SE's etc.
If their PCa progresses and they succumb, is that counted in national PCa morbidity statistics? Are PCa survival numbers skewed? Or conversely, what is the OS effect of patients who take their medicines on time every time?
Dead people dont answer......
‘If their PCa progresses and they succumb, is that counted in national PCa morbidity statistics?’
Of course it is. Would you suppose patients who are ‘irregular medicine takers’ would be separated from those who ‘can’t take a medicine due to side effects’? Or further, those who ‘can’t’ from those who simply don’t like side effects?
Reliable data for this is impossible, and no studies would be invested gathering it. Take the medicine or take your chances. Whether the treatment is worse than the disease is completely arbitrary.
The only true mistake is refusing treatment based on what one heard or read about side effects, which happens all the time. Often the folklore is far worse than the reality.
I agree fully on "the only true mistake is refusing treatment"!Choose living. Living with Family. Living with loved ones. Living with children. Living with grandchildren.
Focusing on side effects, physical limitations, and yes QOL simply makes them worse.
Instead Focus on living your life to its fullest.
here's the thing though.....the treatments may or may not have a great impact on the patient's lifespan, whereas a number of the treatments are almost guaranteed to negatively impact QOL. IMHO it is often a matter of " on the one hand....this, but on the other hand....that. " Leading providers in the field recognize this conundrum, and are attempting to better utilize markers to determine which men might be most helped by the various treatments.....eg not all men with a certain grade of PCa might be greatly helped by lengthy duration of ADT combined with radiation.
I don't disagree.When asked doctors and other medicals will at least admit if not fully agree that a patients attitude can make a large difference in treatment affects, side effects, and ultimately life.
I again state that focusing on the bad just intensifies it while focusing on good benefits life in general.
But we are all different and unique. With free will to choose.
I don't believe it is a matter of focusing on bad, to the exclusion of possible good....it is , for each individual, a matter of deciding if risks of bad outweigh the possible benefits of treatment. Age probably impacts how someone weighs the good and bad ?
At least in my verylimited experience, Docs have not volunteered to help this patient compare risks to benefits!!! very disheartening..... I wonder if this has been the experience for most men, or I'm just one of a few unlucky men with respect to Docs input?
Agree in principle but if we are given the negative side effects vs the benefit of possible longer life virtually everyone will think of the negatives and how they affect life. As to doc's and comparing risks, negative side effects, to benefit; unless I am missing something the only benefits are cured or longer life. Both are what all with a Cancer diagnosis want - cured the top choice - and hearing the negatives just make it harder. There is always a negative in treatments.
Comparing risks to benefit, as noted above benefits, with Cancer is life and death level unlike joint replacement, dental implants, or hand surgery.
For a doctor to use the wording you seek ignores the single important benefit of cured and turns the patients mind towards the negative, human nature.
My doctors focused on the positive; surviving and living well. Anyone that has been diagnosed with Cancer knows right up front the end result and need to hear the positive. Otherwise why bother.
For the record I have had family pass from Cancer and know the end result. dditionally I have been diagnosed twice, 40 years apart, with different Cancers. The only risk I have seen is if no treatments how many months are left with family.
sorry, I disagree....maybe I'm just weird re my perspective..totally disagree re Docs not informing patients of possible SEs, along with numbers about probability...otherwise not at all an INFORMED choice....also probabilities that treatment will prolong life compared to choosing no treatment. oterwise, there is no trust between patient and Doc IMHO. I think many/most patients ask about SEs, but often brushed off from what I have read, and experiencd..that does NOT encourage trust !!!
We seem to have some agreeing points confused with perspective. I have never stated doctors/medical should not discuss SE's. Each and everyone from PC to all involved in my Cancer treatments have noted and discussed SE's.They have included the % reported by patients. I even was given a hard copy of the SE"s for ADT and both types of radiation I received for my prostate cancer.
Probability of having those SE's is not statistically possible and given we are each different would be wrong.
As to the treatments and their probability of success? That's a similar thread. Gleason 9 pca can be 4-5 or 5+4 and overall very similar to G10.
Even in 1975 when I was diagnosed with my first Cancer the docs/medicals made sure that my 26 year old mind understood SE's of surgery and radiation. And potential life ahead.
All I am saying, in summary, in my experience, and many others, doctors do offer the SE's and expectations. But there are just as many that tell their doctors: just do it and tell me what and when.
That is not good in anyway.
obviously, I have had a different experience with the 2 Docs involved.....glad to hear your experience re discussing probabilities of SEs was better!!!
Thanks.One thing I have said, in writings, is you have to trust your doctors. This also means you have to like them.
Maybe you need to doctor shop.
I wish you well and a long happy life. Keep in touch please, updates.
I'm not sure Doc shopping at Kaiser will help much....I tend to like folks, at least in person, look for the good !! I don't dislike these Docs...just my concern about minimizing SE discussion.....especially their personal experiences and probabilities..and then of course at last minute provide patient with disclosure to sign. Maybe i need to ask them to send me the treatment disclosure in advance???
In fact, the RO, is on a list of top RO Docs in Portland...supposedly chosen by peers. The urologist has been supportive of my at-the -time non-SOC diagnostic request.....signing on to a referral outside for a targeted fusion biopsy...Kaiser didn't have that specialty equipment.software. Wisely or not, have decided against surgery....but admit that radiation plus ADT is probably the scarier in terms of possible/probable SEs !!! Seems for RP, 10-20% long-term incontinence , mild or severe, might be lesser evil compared to long list of SEs for RT + ADT?????
where is the professional to help decide on such a conundrum???? I suffer analysis paralysis !!
Everyone is different, EVERYONE can have side effects to any prescribed or other medication, it happened to me so many times! That is half the challenge of medicine, NOBODY knows all the possible reactions. That is why I am such a pain in the posterior, I HAVE to know side effects of any medication! I was treated for PC from June last year "early diagnosed" biopsy PSA 10, [just before radiotherapy sessions 2.19] but the jury is still out, did I have cancer in the first place? Ironically the radiotherapy sessions reacted with my diabetes 2 'diets' causing trouble with my liver, my hormone injections Decapeptyl SR reacted violently with my osteoporosis/rib cage structure [pigeon chest] dramatic collapse of my weakened rib cage! [epilepsy since 14, age 66, every rib in my body broken at least once, 400+ seizures] Health Centre "there is nothing more we can do for you!" Near six months after last injection, beginning to feel better🤞 Ironic during Covid 19 isolation, did not get a reaction, but from Feb. 2021 I proceeded to get a "colourful" reaction to AZ vaccine, 90% temporary loss of use of left arm [where I had the things injected] although not even a sniff of Covid since then🙄!
Good points. It would be interesting to see death stats on treated vs untreated just to see how the ball bounces.
You can Google PREDICT prostate cancer nomogram.....also Google Memorial Sloan prostate cancer nomograms...they have one that shows results with treatment, and another for men with similar PCa who do not have treatment. When I use my numbers for Gleason 4+5, the 15 yr results show 11 of 100 treated men died from the PCa. For untreated simlar Pca men, 23 died. Why do folks continue to believe that Gleason 9 is a death sentence.....even without treatment, at 15 yr 23% have died from PCa. For untreated group, at 10 years 18% have died from PCa. The nomogram doesn't show 10 yr results for treated men.
Perhaps some of the untreated men used for this nomogram did have some sort of treatment in later stages, but not initially...have not studied details of the nomogram development. I believe the PREDICT nomogram show even a lesser benefit for treatment compared to no treatment. Neither of my Docs volunteered to discuss such numbers, how they might/might not apply in my case, and comparing the possibility of living longer to the probabilities of immediate lessening of QOL? At 74, perspective may be much different when compared to someone diagnosed at 60?
For me, even treated men have 70% progression at 10 years!!!
Note.....had unfavorable MRI now 4 years ago, but favorable PSMA PET scan 15 months ago.....my grade based on <10% of one core with 4+5...of 6 targeted cores(all benign) and 12 random cores. Not enuf tissue to have a biomarker test done.
Got it. Thanks for the detail. Puzzling!
why puzzling??
Just that patients without treatment would do so well, comparatively. Or that those treated don't do any better. Did I read it correctly?
Some have reasons to survive no matter what... some don't.
It is a personal choice, doesn't matter what you choose yourself without being pushed or forced by anyone and then own this choice without blaming anyone - will be the right choice. If you forced by anyone to accept their choice, then it will be wrong choice for you...
Wish you are good health and best of luck and courage to make your own choices!
don't think anyone can be forced to accept any treatment...at the point of gun?????
family members can act sometimes worst then a gun because of they afraid to lose you and withstand pressure of the family regarding their view of best treatments can be more difficult that deal with the gun 😉 so person may accommodate them and go against his best judgment and choice with the family pressure. Some doctors can be very pushy too, especially when serious money are involved …
My point, person always make his own choice on what feels right to him regarding his health.
no matter what...the patient ALWAYS decides...how else can it be? You can choose to follow someone else's wishes, but that is stilll YOUR decision, isn't it?
😅 it should be this way, because we always have freedom of choice - that is absolutely correct.
But how often you here even in this forum: “I had no choice”? Not everyone is capable to decide under the stress or of the diagnosis or under duress of many treatments what is best for him and some time doctors take advantage of the situation, and sometime family members put pressure on the patient that might be not in patient best interests.
I think in a difficult situation about persons health, person need some free space without pressure and rush and decide what is feels best for him after listening to different opinions. There are no right or wrong opinions- they are just opinions.
Our choices also does not need to be always explainable by logic, people may act on their feelings (if someone thinking that that is illogical and wrong / that is just their opinions)🤷♂️ I prefer to make decisions and choices on my feelings and they are not always logical… but that is my choices and I don’t care what others think about them 🤷♂️
That is my opinion, you may have different to mine, we both expressed it, I’m not here to debate 😉 Good like with your choices👍
I am not on any medical therapy (or any other kind for that matter) due to severe SE from ADT, which is the FDA approved SOC before any other meds are allowed (except may be in a trial I have not found for which I would be qualified). I would very much like to find data and expected mortality for someone like me but all studies and reports I have seen do not separate those categories. My PSA is rising medium fast and doubling about 6 months now and a PSMA-PET/CT shows metastatic lymph nodes. My MO says that metastatic lymph nodes are not a good predictor, or at least a reliable predictor, of worse outcomes. I will be on regular, frequent, CT and bone scans to see if progression can be seen with those. So it is only "active surveillance" but not the "classic" kind.
I have read your bio and was wondering whether you could tolerate a lutamide monotherapy. Test start with one tablet per week of Bicalutamide and if tolerated increase dosage by one month by month. If this first line lutamide proves tolerated you could upgrade to one of the second line ones by gradual substitution. Even the lowest tolerable dosage, certainly won't "cure" you, yet will engage a sort of progression handbrake.
The mechanism of anti androgens (of any flavor) which leads to depression (in my case severe to the point of danger to life) is completely unknown. The fact that it does cause it is indisputable in my case. I refuse to try to titrate up to any level of the med. The effects can be long term after cessation of the meds of this type. I am absolutely unwilling to try it as an experiment. It's a case of cons versus pros. My Onco will not prescribe any meds which affect hormone levels as well. And, FDA will not allow going to any other meds until castration resistance is proven. Since no trials have been done to prove or disprove whether those meds can even work without ADT it is not likely to be approved in the near or medium term. Medical ethics require giving, or not allowing, a known, proven, med which can directly benefit life benefits. I.e. no trial will be approved to start unless ADT is a precursor. It may not be fair but it is the way it is.
And, unless you have been through what I have been through, I won't even consider advice on this issue. Any one on here can say that I am being unreasonable is welcome to that opinion. I considered suicide every day and I still am amazed that I didn't do it. And, I was a worthless vegetable the entire 11 months after my "3-month" ADT injection.
Thanks for your comments though.
Interesting re your MO's comments about lymph nodes.....
i read your bio, and applaud your clarity of thinking re your situation.....that severe depression obviously decimated QOL..... who among us would not reasonably abandon ADT in that scenario!!! My sympathies for you !!! and a hug!!!!
check Lu-177 in Europe or India or Azerbaijan in hormone sensitive settings that might very well clear your lymph nodes , it cleared mine and some others in this forum. It is out of pocket. Otherwise look maybe some Pluvicto trials exist in the US that can fit your scenario
This is one of the most diverse and occasionally contentious threads.
The way we individually make choices is influenced by doctors, medical staffing, what we read and hear. Plus our own internal struggles and insecurities.
It literally comes down to asking for information, details, and support.
The choices can be hard or not based on who you are but never look back and regret.
I met an older married couple in 2021 and of course the top-of-mind topic was Covid vaccination. They were adamant they did not trust it, etc. A month or so later both were in the hospital with Covid and she left in a box. I have no idea what he now thinks about vaccination --we no longer cross paths.
So too some men regard their PCa diagnosis and SoC. Some get away with denial and no treatment, and some end up dying agonizing deaths. My PCa fight is grounded on needing and wanting to be around for my wife and family, and I don't want the path to whatever gets me in the end to be needlessly agonizing (and thereby painful to my wife and family to witness) due to refusal of SoC.
My wife and I have seen an older relative decide to refuse care and die a painful slow death. Go through that before you decide to make your loved ones see you do it.
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