After some months on this forum I think I have lost track of the fact that many of us are not the statistical majority.... does anyone know how many men actually achieve definitive cures with PCA?? This disease is treated as a " lightweight" cancer by so many and it is rather aggravating to me when I read so many of the posts here that would say otherwise...... Recurrence rates appear to be higher than I ever would have imagined.
What percentage of men achieve defini... - Advanced Prostate...
What percentage of men achieve definitive cure...
Written by
Tommyj2
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The definition of definitive cure in my dictionary is that if we can live until average life span of our country ,then its as good as definitive cure. We all will have to die.. cancer or no cancer. Average life span of an American male is 76 years. If one can live till 76 ..its cure IMO. Anything more than 76 is bonus life.
I would agree if you are referring to " non-recurrence "... live long enough and most cancers, I imagine, would rear their heads again..... I HOPE I don't exceed the average life span in the US... I can't afford to live any longer than that....less so if I have to go on any of the newer drugs.
Oh crap, I'm 77
2Dee
My Dad lived to 94 and my mother IS 94 ..... Dad no exercise, Dad obese, both high fat diet .... normal lifespan for me would be beyond both my Mom (still alive) and my Dad.
My Mom has multiple myeloma, and has refused chemo after three rounds. It seemed that she may die from chemo first. We go for blood transfusions regularly. The Doc says she has an indolent form. The MO said to us that life style sometimes does not seem to matter. Maybe a persons DNA over rides all.
I couldn't find cure rates on the internet, but it looks like 90-95% of prostate cancers are found early when the are considered curable, and five year survival rates are like 99% for all prostate cancers. Shocking, huh? It seems the sampling here is skewed because men without recurrence don't come here looking for information. I can name at least three men who have been "cured" of prostate cancer and they don't spend any time in online forums that I know of.
We really need to start differentiating between different flavors of prostate cancer. I've heard intraductal carcinoma is found in about 3% of biopsies but I'm going to go out on a limb and guess that it accounts for a much larger percentage of "metastatic at diagnosis" cases.
Agree. We mostly have metastatic PCA guys here on the forum. And even among the metastatic, many factors play a role in length of survival. People with adenocarcinoma are likely to live longer than those with ductal/small cell or neuroendocrine types.
People with only bone mets are likely to live longer than ones with organ mets.
People with good general health likely to live longer than ones with many diseases.
People who eat plant based diet and do a lot of physical activity are likely to live longer than ones who eat junk food and are coach potatoes.
I read that people who have a loving, supportive wife or significant other are likely to live longer than one without support system.
There is no one factor when it comes to survival....many factors decide length of life.
It makes me crazy when you read how some new therapy “extends lifespan by 3.2 months” or something like that. What is that supposed to mean?
I'm with you on that one.... why bother??? On the other hand , perhaps they mean that the 'mean' life extension is 3.2. months but that some people live substantially longer....say... a year?? Still not very impressive to me given the price of these drugs..... I STILL want a civilized way of being allowed to bow out when _ I _ have had enough of all this " treatment" don't wan't to have to wait until I am on my last legs to be 'granted' assisted suicide.... by that time your life has been absolute crap for many many months.... Think I'll lean hard on my Cat's vet to take pity : )
"We only have metastatic PCA guys here on the forum"... ummm... no. AFAIK I'm not metastatic. I have a risk of it certainly (G9) but so does anyone who has had or has PCa. I'm here because this appears to be the most knowledgeable group on PCa that I've found, and I appreciate the advanced discussions and references to papers to read.
From interactions with a number of other members of this forum, there are more than a few here in the same status I am. I'm here to educate myself on how to avoid advanced PCa, and to have some idea of what to do if I find myself with advanced PCa. There isn't any "high-risk" group that I know of.. (it could be a very exclusive group - G8's and above only..)
you are right Don... I'm not metastatic yet but follow this forum because it is the most informed that I have come across... WITH that said I also, at times, get more scared than I might otherwise be were I to participate on forums with people with milder cases... I look at the prices of the drugs many of these folks are using and can't IMAGINE how I am going to stay alive AND have any quality of life if I have to advance to one of the newer drugs in the future..... can only hope that as time goes on what is new NOW becomes cheaper then....
I think he said “mostly“
Savoy - I believe "mostly" was an edit (replacing only) after I pointed out that the forum was not all metastatic sufferers. In my initial response, I cut and pasted from the original message.
Not that it really matters - but I was hoping to point out that there are other reasons for being a member of this forum besides being stage-4 and/or metastatic.
Absolutely. We have quite a selection bias on this forum( which by it's very name makes no pretense at anything else)... I asked my question more in an attempt to gain some perspective re: the " whole " of prostate cancer sufferers..
There are still quite a few people who die of the flu and were people who had severe complications due to flu to have an online forum one might begin to think that the flu claims far more people than it does...... Lady luck has not favored many of us on this forum.... don't think the general public realizes that PCA can be quite a devastating disease for a portion of sufferers
You make a great point. I have not been staying up to date with the pca world for the last ten years. Now with a rising psa and the thought of going to Lupron, has caused me to do some research. And here I am.
in reply to tom67inMA
Not called advanced for nothing. I would guess no one here has the pc contained.
You're right on Tommy. It's the recurrence fear that has me on these pages every morning and filling my stomach with whatever the Next Great Supplement is alleged to be. My year one HIFU assessment is revealed to me tomorrow. I will post the results... I call it cured when it's gone, not when the bus runs over me. Cheers
Like you, my husband had HIFU six months ago - hemi- ablation. He had Gleason 8 (left lobe). His first two PSA results at 3 and 6 months were 0.19 and 0.21. His doc in Germany is very happy with him, but I imagine we will always be looking over our shoulders to see if the cancer might be coming back. His doc was so pleased that he says Alan can go 6 months before the next PSA test. Sure hope you get a good result today! And that the PCA stays away! P.S. He is expected to still register some PSA since he still has half a prostate.
Yup, we can never turn our back on this disease. Glad you are having some success.
MRI now clear and PSA 1.2 stable. Will always be looking over my shoulder
Not to pop your bubble but my oncologist said that at this time there is no cure for stage 4 w /Mets. It is a terminal cancer. Now the guys tat are lucky enough to catch it early and have the prostate removed have a great chance of remission, a friend of mine is going on 15 years since his surgery and doing great. Fighting the monster 😡😡😡
I'm going on 10 years. Gleason 8 PSA 10 all contained within the prostate. RP, SRT, SBRT, Lupron, and now Xtandi. PSA currently 0 .1 or less.
How old are you?? Still young enough for commercial insurance?? Xtandi averages 4,000.00 monthly on Medicare Part D…. there is NO way that I could afford that... I'm going to have a LOT of homework to do when my time comes to move to more advanced drugs....
I'm 59. Most insurance policies have an out of pocket max. Once you reach that, the cost becomes minimal. Also the makers of Xtandi have a "help" program.
Wish I had your policy. Xtandi is $ 11,000 per month now. I am lucky my policy has a $10,000 deductible, then the drug is $670. Per month. Way to much but retired and the market gains show to much income. ( if I cash out ). So I don’t qualify for discounts.
What insurance company are you with? Many policies have an out of pocket max. I am with UHC and my current cost is zero for a $12,000/month supply of Zytiga.
Emphasizing my point exactly. Stage 4, metastatic and run over a bus or expiring of a stroke,,,those publishing PCa death stats would have you in the ‘cured’ ledger...exactly the same as with intensive local therapy recurrence stats.
One can always make studies conform to their own personal agendas and desired outcomes.
Morning Tommyj2. I am 75. Had prostate removed at age 55. Came back 2 years later. Had Radiation then on different meds till about 4 years ago cancer got real aggressive. Doc said he can’t cure it, can’t stop it just trying to slow it down so maybe I’ll die from something else other than cancer. Guess it could be worse. I have already beat the odds. Thank God.
Have a great day
Lt036, how are you currently trying to slow it down?
Hello Rocketman1960. Have been on Lupron shots every three months for last four years till they stopped working now on Lupron along with Xtandi, four pills once a day. Just started Xtandi about three months ago and so far it seems to be working.
Only thing is both together I have extreme fatigue, hot flashes, which I can put up with, and vertigo. The first 20 years was no problem but now that the PC has gotten more aggressive the treatment is more aggressive and makes me feel like crap. Doing better than a lot of people on this blog so I am thankful for that.
Have a good day. Played golf today or should say tried to. Was not a good day. Hope your day will be better.
Hey, we take what the Good Lord gives us and be thankful. I've been on Xtandi and Lupron together for a year so far. Hopefully we can stay on it for a while more. I agree the side affects suck but it's not like we didn't know they were coming and the alternative isn't very good! Have a great Golf Match!
Rocketman1960, golf was terrible. Felt like you know what, weak and no balance at all. Had to give up after 10 and just ride. Thinking about going to senior center and playing checkers. Oh well guess I will try again Thursday. Take care
Lt036. I think the trick is to pace yourself. Find a nice 9 hole pitch and put. Rest often. Take what it will give you. I'm thrilled when can enjoy the whole match like an accomplishment rather than saying I could only do half. Hang in there.
Side effects of both made me an invalid. Cut Xtandi dosage and ended up at 80 mg. daily. Life much better. Was recovering slowly until sever burn. Now starting strength recovery all over again. G9 PSA now 0.120
Many wind up cutting dosage. In the end, it's quality of life over quantity. At least for me it is.
Consider Darolutamide(Nubeqa) for lessened fatigue verses Xtandi. If you really wish to go out on a limb, as you have suggested that Lupron has failed, truly go against 50 year SOC and abolish it to the bit bucket too.
Not a recommendation, only my personal opinion....All ADT has very severe and debilitating SE’s, often to zero benefit to OS and often a negative benefit from well documented increases of cardiovascular events, diabetes, osteoporosis etc....not to mention one’s QOL.
I am very well aware of theory that even hormone resistance can/may/might “could” have a PCA benefit from continued Lupron,,,,however when weighed against confounding risks,,,,,no study or trial has ever confirmed this...50 years of alleged SOC is not convincing for me.
Sorry for your bad luck.... that is ONE hell of a long time to be battling this disease.....Have you been on different flavors of ADT for the entire time... ?? You mention Lupron for 4 years. What did you use before>> Perhaps the time line is off??
Tommyj2, sorry to say but my memory has gone also. Only thing I can remember for sure is at one point my urologist was involved in a research program involving concentrated pomegranate which helped keep the psa down. The program lasted a couple of years then ended when the fda world not approve it. Psa stay low for short period of time then back up and started Lupron. Cycled on and off Lupron before staying on it then when it stopped working added Xtandi. Doc told me that no matter what they do next I won’t like it either Now in the lymph nodes and other locations. Had a good run but quality of life is not what it used to be. Better than the alternative I guess. Sorry to ramble on but I do a lot of that lately.
I would not be so sure of having nothing after Xtandi. There are several other ADT drugs out there and you also may be able to double back on ones you have been on before. Hold your head high!
If it is of any solace to those that think they are being cheated out of a full life, look at what your life expectancy when you were born. infoplease.com/life-expecta.... After you do that, I daresay you will conclude you have cheated Father Time not been robbed.
Like others, I am on here because of a G9 in the path report.
So I try to keep up with the what-ifs. Also I lead a support group and try to keep informed for those in the group who (wisely) avoid reading too much.
I agree that knowing TOO much is sometimes detrimental.... before I joined this group I believed that recurrence rates were FAR lower and that the disease was a lot milder than it actually is.... I also has no reason to look into the potential OOP costs of the disease down the road.... whew!!
how many men actually achieve definitive cures with PCA??
BUPKIS....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 11/19/2019 8:48 PM EST
Clearly there are men who live out the remainder of their lives without recurrence.... these are the ones that I am referring to..... Expect that all who have ever had this disease would have recurrence if they lived long enough... Will likely see a LOT more of this as life spans increase...no??
I agree completely...... Those little f.n, bastards have longer life spans than us....They're like ex-wives...Always there....
What happens if you miss your ex-wife?
Get better aim!
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 6:44 PM EST
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