On Behalf of My Brother

[jfoesq]

I have met PC for 7+ yrs. 2 of my brothers were diagnosed a short time after my dx and both has surgery and are "cured" My 3rd brother was just recently diagnosed with low grade and localized PC and I am seeking advice on how he should proceed. His PSA has risen from 4 to 5 recently. His Gleason is 6. He had 1 "dirty" core. His urologist told him to return in 2 months. I am questioning that advice and wondering- "Why wait". Isn't it almost a certainty his PC will become a problem and shouldn't some medical intervention (i.e. radiation) be taken now?

[Tall_Allen]

No it is not "almost a certainty his PC will become a problem." In fact, for over half of men with his diagnosis, the cancer never progresses. While familial prostate cancer increases his risk of prostate cancer, the type of prostate cancerhe has may bear no relation to your or your brothers' prostate cancer. In my support group are two brothers - one with metastatic PC, the other on active surveillance goingg on 5 years now.

[jfoesq in reply to Tall_Allen]

Tall_Allen

I understand what you said, but he is an active 62 year old. Is it conceivable he could live 20 years without needing treatment. If not, wouldn’t it be better to get treatment he will ultimately require, sooner (when he is healthy and strong) rather than later on?

I may be wrong about that, but that’s why I am asking

[Tall_Allen in reply to jfoesq]

In the longest running trial of active surveillance in North America, at the University of Toronto, 55% of low risk men have stayed on active surveillance so far for over 20 years. It was also 55% at 15 years, so this group seems to be stable.

As for the argument of treating men while they are younger, the numbers do not bear out any advantage to that. In fact, low-risk men are always better off being treated later, as is shown in these analyses:

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2017/08/...

[jfoesq in reply to Tall_Allen]

Thx. That was very helpful info.

Much appreciated

[Patrick-Turner in reply to Tall_Allen]

Active surveillance is justified I guess in some circumstances but it depends on how "low risk" is defined. Men who may never have any problem with their PG may have Psa < 0.7 at 40, and < 1.0 at 60. I have a cousin like that, with Psa < 1.2 at 74.

But I had Psa creep slowly up to 5 at 62, and then ejaculation of anything suddenly stopped, and I had to pee at night maybe 2 - 3 times, and PG size was 3 times normal. Biopsy at Psa = 6.0 gave horrible result of Gleason 9 which was later found inoperable at attempted open RP.

I should have been given biopsy at Psa = 3.0, at age 58, and I bet they would have found a Gleason 5, much more treatable.

Active surveillance seems like a stupid idea unless

(1) All function of PG seems normal,

(2) PG is not swollen,

(3) All sexual function is OK,

(4) Urination is normal,

(5) Psa is < 3, and stable.

(6) Relatives' history does not include PG, Oa, Bca, Melanoma.

(7) The man loves going to a doctor and talking to anybody about his private bits and he is certain shit could happen any time.

Early detection of Pca is essential, and sure, maybe the above criteria may be met for AS even where there is a little bit of Pca, but I'd be very nervous.

I had yearly Psa tests for 10 years before diagnosis, and I expected to get Pca based on what I knew, and what I saw happen up and down my street.

Yet the medical system seemed to be careless, the Psa threshold was 5.0 before I could get a biopsy, which was too late for me, 9/9 samples were positive. One doctor told me "You are too healthy to have cancer" a year before diagnosis. What an idiot!

Patrick Turner.

[packfan in reply to Patrick-Turner]

This link gives a better description of Active Surveillance criteria:

urology.jhu.edu/prostate/ac...

Active Surveillance is performed after a biopsy, when the Gleason score is known, and is not simply based on PSA. Protocols include repeat biopsies at regular intervals.

[Patrick-Turner in reply to packfan]

But the trouble here before I was diagnosed was that my Psa was allowed to go up to 5.0 before any doctor was obliged to refer a man to a urologist who does a biopsy. The stupid term used for what happened before any biopsy was Watchful Waiting, ie, hoping that shit was not happening when it could have been.

So before I had a biopsy, doctors had no concerns anything could be wrong with my PG. They ignored the slight symptoms I was having, assuming its part of getting old.

But I was reading US based Pca groups back in 2008, and saw that men had been having maybe 3 biopsies when Psa was much lower than 5.0, and then Pca was found, and nearly all of them pleaded for an RP. Many doctors didn't want to do that because they thought it was over-treating a man, and causing him unnecessary harm and suffering. In some cases they were right, in others they were wrong, and in my case my local doctor was stupid.

But the system was stupid and remains stupid, because the threshold for getting a biopsy is 5.0 under the Medicare Rules. One man emailed me many years ago to say his local doc ordered he get a biopsy within the private system when his Psa was 2.5. this took time to arrange and by the time he had the biopsy it was 2.8, and Pca was found, and he had RP, and then had not one bit of trouble with Pca afterwards. I have had a pile of expensive trouble because the public system was plain stupid, or plain wrong, or whatever bad thing you want to say about it, before I was diagnosed. It may be better now, but I just ain't aware of any rules to arrange to make men get a biopsy when Psa reaches 2.5.

In 2004, the year before my sister was diagnosed with ovarian cancer, doctors completely missed out on diagnosing her correctly, and said she had indigestion, or some other ailment, other than Oa. Then they finally admitted she had Oa and performed hysterectomy, and removed a bunch of lymph nodes. They told her "We got 80% of your cancer and chemo will get the other 20%". I looked up the Internet about Oa and found she had 99% chance of dying within 9 months.

She had 4 lots of chemo which failed and died within 9 months.

The doctors don't train to become stupid, but some do appear to be stupid, and I make no apology for using the word stupid.

Patrick Turner.

[dadzone43 in reply to Patrick-Turner]

I hear you, but "stupid" is hardly what it is. The implementation of AS is based on very solid research both here and in Europe. It is not "doing nothing" and -- like everything else -- it sometimes does not work. "Prostate cancer is not a cornfield, it is a meadow." It behaves differently in every host.

[Patrick-Turner in reply to dadzone43]

Prostate Cancer is not a meadow, but is like a grenade that grows and slowly explodes if allowed to.

Patrick Turner.

[Tall_Allen in reply to Patrick-Turner]

Low risk is defined by NCCN as Gleason score=6 and PSA<10 and T1/2a.There are over 20 years of follow-up on the longest AS trial. Similar long-running trials at MSK and UCSF agree. They all found that any man with low risk characteristics is a good candidate. JH uses more stringent criteria but have been relaxing them as they collect more data. It is important to look at actual data rather than conjecture.

[jfoesq in reply to Tall_Allen]

Thank you, TallAllen.

I will forward my brother this info as I did with your previous response.

[Patrick-Turner in reply to Tall_Allen]

Before I was diagnosed in 2009, there seemed to be a cavalier attitude to mens' health bothers, and many men and their doctors took no notice of the 7 points I raised in previous post. So whether you reached old age was down to luck, and good luck meant the doctor carefully checked the 7 points I made, and the man was honest when questioned and didn't resist the order to have a biopsy well before Psa reached 5.0.

The main thing about Psa, doctors said, was the rate of Psa rise, and if Pas was 5 and had been for a year, they still did nothing, no order for biopsy. My Psa slowly rose to 5, but in year before, I could see slight change of rate of rise, but was ignored by a stupid doctor. It was my very bad luck to have found myself in the care of this doctor when there were better ones I didn't know about, mainly because I sure had been very healthy previously, so I had little need to ever see a doctor, but the other bad luck I had was that I never met anyone to tell me I should have had a better doctor who may well have ordered a biopsy in 2004, not 2009.

I didn't know that I needed a non stupid doctor who had much better idea of preventative medicine for men.

Right now, my oncologist is the opposite of stupid. My Psa has risen from 0.32 to 1.3 and in 2 months, and after Lu177 last year, so he's given me orders to get scans to see just what's happening with my Pca status, and find where the increase in Psa is being generated. It may be like trying to find a needle in a haystack, but I shall arrange to have these scans done, and none of my team at the hospital could ever assume anything about my Pca without the evidence that a good scan can provide. Its too early for another PsMa scan, but maybe in a month it won't be, and that will be added to scan list because Psa is rapidly rising. Nobody is dithering around and bullshitting, we are on to it.

Patrick Turner.

[2dee]

Genetic Counseling is strongly recommended. Likely will result in Genetic testing for mutated genes, such as BRCA1, BRCA2, etc.

Defining these mutations creates additional treatment options and knowledge for your blood line.

I found after my APCa Dx that I am BRCA2 positive, which resulted in much higher risk for a number of cancers, (I developed 4 of them). I notified my blood line so they can be tested and treated more aggressively.

2Dee

[HopingForTheBest1 in reply to 2dee]

Am also BRCA2+. Zytiga/Prednisone failed after 6 mos. Went on Olaparib, PARP inhibitor, and PSA has been undetectable so far for the past year. Also on quarterly Eligard and Xgeva.

What other cancers have you developed?

[2dee in reply to HopingForTheBest1]

Melinoma, Basil Cell, Squamous, Prostate Cancer (PSA 1300+ Dx).

Started 2018.

Over a year past my use by date and generally feeling good just now.

CT and Body Scan last week look much better than Jun 2018s.

2Dee

[HopingForTheBest1 in reply to 2dee]

Wishing you all the best.

[jfoesq]

Thank you. I forwarded your message to my brother.

[j-o-h-n]

He ain't heavy.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/30/2019 12:58 PM EST

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

Cute!

Thx and best to you.

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

Love the harmonica part in that song.

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

Just for you:

youtube.com/watch?v=Jl5vi9i...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/31/2019 12:54 PM EST

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

Thx, John

[Hidden]

You may want to research HIFU. It is an alternative to radiation or RP surgery for non-metatstatic prostate cancer. I chose that rather than do the radiation they wanted me to have. Your brother is certainly in no rush to decide on treatment.