What Percentage of Men Have Recurrence??

[Tommyj2]

In recent months I have encountered any number of people who either had or know someone who has Pca and they speak of it as something rather casual... like quick in and out and no further problems... I think the public in general sees this disease as rather benign, easily cured and not apt to kill one. Anyone aware of how frequently there is recurrence after primary curative treatment and of these... the percentage of men who actually die of complications of the disease.... I'm talking very generally as I KNOW that it will be keyed to a lot of variables.. but in the most general terms. Participating in this forum one might get to thinking that NO one does not have recurrence.... but we are the exception.... I'm wondering by how much??

[Tall_Allen]

For recurrences after RP, you can use this nomogram or Han tables:

mskcc.org/nomograms/prostat...

urology.jhu.edu/prostate/re...

For SBRT, the freedom from recurrence at 7 years for low and intermediate risk patients (n=6,116) was 94%

For GS 9 or 10 high risk patients receiving brachy boost therapy, the 10-year BCR-free survival was 70%

Here are other statistics:

mskcc.org/nomograms/prostat...

[Longterm101 in reply to Tall_Allen]

Hi TA

Do these stats assume cancer is contained within the gland ?

What if local lymph node involvement is found?

Thoughts ?

[Tall_Allen in reply to Longterm101]

They assume nothing. They give the probability that cancer will be contained by future treatment. They do not include known LN involvement.

[NPfisherman]

Some info from WebMD:

webmd.com/prostate-cancer/g...

About 29,000 men die annually of prostate cancer....

more info from ZERO....

webmd.com/prostate-cancer/g...

It is the second leading cause of cancer death for men...

Fish

[JamesAtlanta]

I agree with your observation that many view prostate cancer as highly curable and not a big deal. I suspect that the reason is that only 10% of prostate cancer patients are diagnosed as advanced metastatic. (Per the WebMD link Fish just sent you in response to your post).

The recurrence rate varies significantly from localized PCA to advanced metastatic. But, as noted in my post earlier this week, with the new medications available, life expectancies and time of recurrence has increased a lot in the last several years. And, of course, every patient responds differently.

So when I have someone tell me “they know so and so and they were cured” or “it was no big deal”, I always ask if the cancer they are referring to had spread from the prostate. In every case, they are citing a localized case. So I use the discussion as an opportunity to educate them and to encourage them to get a PSA test. Most are highly unaware about PCa and don’t know the importance of getting a PSA test - or that it can metastasize and become life threatening (as I’m sure was the case for most of the folks in our group).

Anyway, just a perspective to consider. Hope this is helpful!

Have a great weekend!

James

[Sxrxrnr1]

I had composed a fairly long response. This editor again for reasons unknown again mysteriously and with no warning cut or erased all that I had entered just before I was to hit reply. Any thoughts on how to protect against this. I am on an IPad Pro. I do occasionally now do a select all and a copy to somewhat protect my self,,,,but being a bit careless at 2:30 in the morning and just having received my very first infusion of Cabazitaxal 14 hours I was a bit lazy and did not do as often as I should have, therefore lost 2/3rds of my post. I am tired and will deal with this tomorrow.

Did I misjudge my finger and hit cancel by mistake? The buttons are close to each other. Human ergonomics has never been in the vernacular of software programmers.

On an iPad you do not even have to touch the screen to get a hit. Just moving you finger above the screen can trigger an undesirable response. If I did cause an errant cancel response,,,a reasonable system designer would ask,,,do you really want to do this. As I said human ergonomics not in the vernacular.

[MarkBC in reply to Sxrxrnr1]

I've had that happen a couple of times. Very frustrating. If I gave a long response type, I try to write it first on a memo or in a word document and then I copy/paste to the online forum.

[j-o-h-n in reply to Sxrxrnr1]

We used to call that the 3Fs....... Fat Finger Fuckup......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/11/2019 8:17 PM DST

[FCoffey]

The reason people believe prostate cancer is easily cured is that most prostate cancers that are excised or burnt were never going to progress to the point of being dangerous or deadly.

The industry loves these cases. Cut the man up, take tens or even hundreds of thousands from his insurance company, and tell him he was cured.

The truth is that neither RP or RT are very effective.

The results are from the PROTECT trial, whose results are consistent with previous trials over the past 20 years, and so more likely to be correct. PROTECT showed no difference in overall survival, no difference in cancer-specific mortality, for surveillance vs RP vs RT after 10 years. The odds of those treatments preventing metastases after 10 years are between 3% and 4%. The odds of life changing negative effects are close to 100% - its more a question of how bad than if.

Those are dreadful odds. If I developed a supplement that performed like that, I would expect to be put in prison, and I would accept that punishment as just. But RP is the gold standard, because the urologist keeps the gold, patient benefit be damned.

nejm.org/doi/full/10.1056/N...

Direct quote:

"On the basis of our results, we estimated that 27 men would need to be treated with prostatectomy rather than receive active monitoring to avoid 1 patient having metastatic disease, and 33 men would need to be treated with radiotherapy rather than receive active monitoring to avoid 1 patient having metastatic disease. "

I'll do the math: if 27 are needed to be cut in order to prevent one man from having metastatic disease, that means, in terms of preventing metastases, that 26 men suffered all the horrible, life changing effects of the surgery without any benefit. If one in 27 men benefits, that means just under 4% odds any particular man gets that benefit.

If 33 have to get RP for the same benefit, 32 get no benefit, and the odds of any one man benefiting are 3%.

One of the reasons those numbers are so dreadful is that most of the men who were harmed without benefit were never going to have their cancer progress anyway.

The primary defense of current practice is that there is no sure way to tell a benign tumor from a dangerous one. That's true, and although a lot of people are working on that problem, the cancer industry needs patients, benefits be damned.

This doesn't directly answer your question, but it shows why there are so many who believe that prostate cancer is no big deal. In the vast majority of cases, that is true, and men are grossly overtreated and told to call that a cure.

Another way to look at it is that most but not all of the men who die of prostate cancer in the US have had recurrence. While there are men, several on this forum, who get a rude shock when diagnosed with Stage IV disease and distant mets, roughly 90% of cases are discovered earlier.

Moffit cancer center offers the most direct answer I have seen:

Approximately 20 to 30 percent of patients with prostate cancer will show signs of recurrence at some point in their lives.

moffitt.org/cancers/prostat...

[JimVanHorn in reply to FCoffey]

Thank you, I did not have RP and at this time I show no cancer. I am currently off therapy but on active surveillance. Well I had am able to have orgasms. It was eleven years without sex, but it does make me feel whole again. I had 72 radiations and 6 12 years of Lupron (Eligard - generic). Next month I will fine out is my PSA is still 0.006. I probably had gone up but has been 1 year since I stopped all therapy.

[Tommyj2 in reply to JimVanHorn]

I'm a little confused JimVH... are you saying that your primary Tx was RT followed by continuous ADT for 11 years??... was the RT ineffective?? Any time elapsed between the RT and the initiation of ADT?? Sounds like you had a pretty fair number of Radiation Tx's

[JimVanHorn in reply to Tommyj2]

My therapy was 42 radiations in 2007 when I was first diagnosed with PCa. Then I had a bone scan in 2011, because my PSA was going up again. They found bone metastases on my hip bones and I had 30 more radiations. I started Lupron injections every 3 months ) and later I changed to Eligard. Yes, I stayed on that therapy continuously for 6 1/2 years. I stopped all treatment one year ago and on Christmas Eve my Oncologist called and told me I no longer have cancer. I will be checked again in June. Thanks for asking and I wish you well, but above everything else just keep truckin'.

[Tommyj2 in reply to JimVanHorn]

What great news for Christmas Eve!!!.... I imagine that he said that you have no detectable signs of cancer?... This damnable disease has a nasty way of sneaking back... but what the hell... if it's non detectable why not live as though it is completely gone.... I am , personally, dismayed at how many men have recurrence.... I did 8 weeks of Radiation myself but "so far" I don't have detectable metastases on Nuclear Bone Scan.... we'll have to see what happens with more sensitive testing... I am DESPERATE to avoid ADT for as long as I possibly can.... potential side effects will end my ability to do just about everything that I love.... effectively ending my QOL to gain more years.... So Glad to hear your great news.... you paid your dues....

[Hidden in reply to FCoffey]

This is spot on. Thank you.

[Tommyj2 in reply to FCoffey]

You make some excellent points.... I am thinking that these results are the motivating force behind the controversy over PSA testing...... Early testing does sometimes save lives but more often results in treatment that would have left a man intact many years had he NOT been treated.... Few of us, however, would question the importance of PSA testing after recurrence.... though, for all I know I am wrong about this as well : ) Men hear the word "cancer" and many simply rush to get it out of themselves irrespective of how long they could wait before it would be a major threat.... After all who wants to be the guy the the odds DIDN'T favor.

[RonnyBaby]

There's something I'd like to point out to JimVanHorn.

IF you have been on ADT for 6 1/2 years, in all likelyhood, you have crossed a key timeline.

My understanding is that after 2 years of ADT (Lupron refers), some side effects are likely 2 B permanent.

One of them, your testicles may be 'fried' and your T levels might never recover. The body undergoes significant changes that are not reversible.

For some men, that might not be a big deal - just wanted to point it out.

Age is another factor.

Hope you keep doing well !

[Hidden in reply to RonnyBaby]

Willing to bet that Jim like me understood the effects of a well known drug that increases and actually works to restore damaged blood vessels necessary for erections after a traumatic event like prostectomy or radiation. Viagra.

Sixteen years ago, I ran by a low dose, 25mg, 2 or 3 a week with my Cardiologist and Research Medical Oncologist. Both said that it would not hurt and could just well help. Can’t have any co-morbidities though.

The concept was simple, use it or lose it........ or prepare for the future and help to repair damaged circulatory networks. If I lost you, one needs blood to engorge erectile tissue. The major reason old men and those with traumatic events can not get erections, is poor circulation. It is why cardiac patients receive a warning on the drug.

Case in point, my Pharmacist declared that he was happy that my Cardiologist wrote the script. When insurance initially denied, both Cardiologist and Cardiologist contacted and told them that their license to practice medicine trumps their denial of a drug needed for another purpose due to trauma.

Upshot. Even when I was on Lupron, I could have erections. Not like it was, but “stuffable”..... just needed a desire for sex in spite of why the brain initially transmitted. Lupron has the tendency of telling the brain, you don’t want to have an erection.

I don’t really care if one thinks, taking this drug under these circumstances, is antedotal as it worked for me and others..........

WTG Jim!

Gourd Dancer

[j-o-h-n in reply to Hidden]

“stuffable”. is that like shoveitable?

Roslyn to Harold: Is it in yet?

Harold to Roslyn: Yes dear.

Roslyn to Harold: Oh my god it hurts!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/11/2019 8:24 PM DST

[JimVanHorn in reply to RonnyBaby]

Thanks for the concern. I have erections and orgasms when I masturbate. My testicles have doubled in size in the last year and I will find out my T level in June. I'll let you know how it all comes out, but you need to know that nothing comes out if you know what I mean.

[Notsdr]

I agree that the public's perception of the seriousness of prostate cancer, or lack thereof, is due to fact that the vast majority of men who are diagnosed with prostate cancer will not die from prostate cancer. Please see this NCBI/NIH Article:

ncbi.nlm.nih.gov/pmc/articl...

Per the data of the 230,000 men who were diagnosed with PCa from 1999 to 2009, based on a single marker of PSA value at diagnosis, about only 10% of all men are diagnosed with a PSA of greater than 20. The PCS deaths at ten years for all those diagnosed with a PSA of between 15 and 19 is about 25% to 30%, depending upon age at diagnosis, and the PCS death rate is much lower for PSA values under 15 at diagnosis (see the charts in the Article for a breakdown of age at diagnosis and PSA values within various ranges to determine where you fit in).

So the PCS survival rate for 90% of all men diagnosed is very favorable, and for the median joe prostate cancer patient, it is very unlikely that he will die from prostate cancer, even if there is a recurrence, at least within ten years after date of diagnosis. I don't think the public cares much about the side effects of the disease, and survival statistics are the main focus of its opinion.

[j-o-h-n]

When I tell young guys that I have prostate cancer... they usually say OMG does that mean when you lie down it's difficult for you to stand up?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/11/2019 8:28 PM DST

[Tommyj2]

Likely true of all cancers....which is why, I presume, they speak of 5 and 10 yr survival rates so frequently... The average patient loves to hear that " we got it all "... but the fact is we got " The greatest majority of it"... Of COURSE cells are going to be present afterwards. With luck the immune system will keep them in check and individuals will die prior to their cancer returning.

[Hidden]

Here is my two questions. First my PSA barely dropped after RP surgery, so that goes down as persistent instead of recurrence. There is not much out there addressing persistence. Second, does recurrence only count if you are being treated ADT or not? My numbers and my DT is quite different when I take a break from Lupron compared to when I am off. So is it really recurrence or is just temporarily suppressed on Lupron?

[Tommyj2 in reply to Hidden]

That is very unfortunate Rick... I didn't even know that such things COULD happen... Were they able to locate the source of the cancer afterwards? Pelvic Bed, Bone?? Can't imagine an unchanged PSA with no prostate gland present..... As to recurrence, my understanding of recurrence( BCR.. Biochemical Recurrence) is a rising psa subsequent to initial curative treatment.... these numbers differ substantially depending upon whether one was treated with RP or RT. Your situation does not sound like recurrence, I agree.

But, again, where IS the cancer that your PSA remains nearly unchanged ( what are the numbers)

Bob

[Hidden in reply to Tommyj2]

The auximen scan showed several lymph nodes. My PSA eventually dropped after months of treatment. Since then I have had my PSA go up and double every three to four weeks when I take a Lupron break. So is that reoccurrence? Or does it matter what you call it. My oncologist said I will probably become hormone resistant soon.

[Tommyj2 in reply to Hidden]

Don't know.. and don't know if it matters. No one here that I have read has addressed whether persistence is more serious than a reoccurrence .... Just know that you have had some crap luck and am hoping that better luck is ahead....

[Hidden in reply to Tommyj2]

Thanks Tommy, I am hoping for some good luck! 👍