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Does this mean advanced PC?

fortheloveofhim
Posts: 5
Joined: Apr 2015

My husband had RP in April 2012 at 57 yrs old.  PSA 6. Primary tumor pT3a with perineural invasion present.  No positive lymph nodes.  Gleason 3+4.  May 2012 PSA .104/ Aug. 2012 PSA .112/ Feb. 2013 PSA.197/ May 2013 PSA .284

From May-Aug 2013 Salvage Radiation  End of Aug. 2013 PSA .186/ Nov. 2013 PSA .119/ Feb. 2014 PSA .108 / Dec. 2014 PSA .2

PSA remained at .2 until this month rose to .3

What are the best next steps?  We're making an appt. with the oncologist, but will they automatically put him on hormonal therapy?   We've read that if this is going to be considered advanced PC, that starting hormones too early can make them invaluable later to help with pain if the cancer spreads.  Is this true?  Any input is appreciated. 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Forthelove,

By tradition, hormonal therapy (ADT) and chemo are used in advanced cases when other means of treatment are no more feasible. However, before deciding on anything one needs to confirm his present status. The increased PSA and previous data (since 2013 in your case) are not sufficient to judge precisely any advanced case. Surely that in sequential treatment after Surgery and Radiation, ADT is common and recommended by most doctors. but if the case relates to a single area or localized then other ways of treatment (dissecting or radiating) can still be applied.

Accordingly, one needs firstly to find out where the cancer exists. I would recommend you to discuss with his doctor in getting additional exams like a PET scan (68Ga-PSMA) to try locating where the bandit hides. These exams require the patient to be clean from hormonal drugs for avoiding false negatives. In fact, ADT works the same whenever it is started earlier or later, so that your husband's next treatment can wait till the PSA reaches a due threshold. The present PSA of 0.3 ng/ml is still low to consider his case advanced. Apart from that this low level would not assure a reliable result from an image exam. Witout prostate gland in place (RP patients), CT, Bone scan and MRI require a much higher level of PSA and only close to 5.0 ng/ml it manages to provide a credible result. PET scan is nowadays well advanced in prostate cancer diagnosis and it has becomed the best choice in intermediate and high risk types of PCa. It is more specific as it checks at cellular level against the CT or MRI that check volumetric and deformations. Small tumours are hard to find and a Gleason score of 3+4 in a PSA=0.3 could be though to be small in size.

I was also a pT3a pN0 patient back in 2000 and similarly to your husband my PSA never reached remission levels (less than 0.05 ng/ml) after surgery. I had later a salvage RT that took the PSA to remission levels (lower than 0.05) but failed again, leading me to ADT which I started four years later when the PSA reached 1.0. This was my doctor's threshold to trigger hormonal treatment in guys with my status of Gleason 6 and micrometastases.

Hormonal treatments are palliative and are used for prolonging control over the bandit which can be done quite successful during many years. It manages to turn the bandit indolent until that drug becomes refractory. The use of hormonal drugs to eliminate pain is not true. It manages to slow down the activity of the cancer which leads to improvement in bone metastases reflecting an improvement of the pain from affected bone. In any case, I doubt that your husband is at such advance status from the info you share above.

I assume that the increase of the PSA made you both worry so now you are rushing to get something which is proper. But you should do firstly your researches, coordinately and timely. Get second opinions and avoid stress.

 Best wishes.

VGama

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi there,

The likeliest thing is wait and see, really you could do another PSA test in six months and it could be .2 or it could stay at .3 for a very long time.
At this level it is not really possible to do any scans or much else.
I would stop worrying for the moment.

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

GC,

"Stop worrying for the moment."   Not a statement in the cancer patient lexicon.

But a resonable bit of advice, as you and Vasco have both noted, all indications are of very, very minor involvement presently. There is no indication of need for rapid response.

fortheloveofhim
Posts: 5
Joined: Apr 2015

I really appreciate all your good advice!  We will wait to meet with his oncologist and take one step at a time.  We'll keep you posted.

 

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi Max,

I am almost certainly going to end up having to take my own advice, aka eat my own dogfood, sooner or later on the above matter.
I had a post operative PSA of 2.07 and this is almost always associated with eventual biochemical recurrence, in the case of my Gleason Score of 7b it is almost invariably local at least initially.
You can see this in the for me grim results in the ARO96-02 and SWOG8794 trials, link to the SWOG8794 trial below.
http://ascopubs.org/doi/full/10.1200/JCO.2006.09.6495?url_ver=Z39.88-200...
As I am only 56 it has a long time to try and kill me so the odds are very high that I will die of prostate cancer.
Changing the subject it is sunny but cold here today so we are off for a walk this afternoon.
Irish stew tonight to celebrate St Paddy's Day, wine for the woman and Guinness for me, with a nip of Irish whisky afterwards.
Irishness is big in this bit of Brittany!

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

GC,

I've never been to any part of France, but have seen the coast from the English Channel, leaving out of Portsmouth, England.  Subs don't qualify to enter that many foreign ports, but American subs do occasionally go to Toulon, France. I've also never been to Ireland, but viewed the coast from the Irish Sea. A spectacular place.

No Irish in me that is known.  But my Lymphoma Hematologist was of Irish descent.  I asked him one day how much alcohol was reasoable, and he replied with what he claims is the answer given by Irish physicians:

"Drink no more than your doctor does."

 

.

Steve1961
Posts: 249
Joined: Dec 2017

just what thst  lady needs to hear thst  you are only 56 and it has a long time to kill you and most likely you will die from this ...her husband is only 57 ...I think comments like that  should be kept to yourself .....not cool ....

hewhositsoncushions
Posts: 279
Joined: Mar 2017

George

You are in a cheery mood today! More wine and walks needed.

I found the report interesting. What I find of particular interest is that adjuvant seems more effective in the long term than salvage by quite a large margin. I wonder why we do not do ART by default more often.

At least the encouraging news is that most times the failure is initially local rather than distant which still gives chances for point treatment.

H

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi H,

I fully expect to live at least ten and almost certainly a lot more years so I will be around to trouble you all for a long time.
But I know that the Ankou has a scythe with my name and prostate cancer on it!
Anyway la femme is on the Cotes du Rhone Villages and I am on the Guinness Original, the Irish stew made with Aberdeen Angus beef raised on the green pastures of Brittany is looking good, just got to get the Bintje spuds on the boil.
Lovely spuds, Bintje!

Best wishes,

Georges

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi H,

I think it comes down to cost and a desire not to overtreat.
In my opinion an iffy case like yours would have benefited from going straight to radiation.
The few probably local cancer cells would have had a good bang on the head before they could have got going!

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

That is the spirit!

My anthropomorphic personification of the Grim Reaper likes cats, TALKS LIKE THIS and doesn't mix well with people :)

https://s-media-cache-ak0.pinimg.com/564x/f7/bb/a2/f7bba222006767fee47f1f1b4174e61d.jpg

You are probably right regarding their strategy. I asked about ART and just got looked at. Plus I was not that obviusly a risky case - T2C N0 M0 with the additional pathology still marking me as G7. Guess it is the luck of the draw.

Thinking about it, their SRT stats were for high risk patients so it may be I fare better.

Although one may do better at the tables :)

H

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi Steve,

I told her not to worry in my first comments.
He had a prostatectomy followed by salvage radiation seven years ago so he is now 64 not 57
His PSA doubling time is so low that it is not worth calculating for the time being and if it continues like this it could be years before it reaches two or whatever trigger they choose to start some ADT.  It is posssible that he may never start ADT as his PSA could just bump around below one for the rest of his life. He is safe for years to come on present numbers.
My situation so far is a lot worse than his. I started off as a 7b compared with his 7a. I had extraprostatic extensions and seminal vesical invasion as well as the perineural invasion that he had. My post prostatectomy PSA was 2.07 compared with his 0.104.
You add up all those factors and you will realise that if seven years down the line I have a PSA of .3 I will consider myself blessed.
At my last meeting with Dr Eeyore he was so pessimistic as to my prospects that I felt like knocking him down and standing on his neck.
Blood tests for PSA, etc next Monday, Dr Tigger on Thursday, I will keep you all posted! :-)

Best wishes,

Georges

Steve1961
Posts: 249
Joined: Dec 2017

hate pessamiststs especially drs ...hope u r ok 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Georges,

Yes, I think the same as Steve above. What is the reason for that doctor's negativity? What did he tell you? Your treatment is still going on. One needs to think positively.

Thinking of you,

VG

hewhositsoncushions
Posts: 279
Joined: Mar 2017

I think George is referring to the fact that Eyore is hung up on numbers and nomograms and sees the cloud in the silver lining as a result.

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi there,

I have three doctors;

Dr Pooh; she is the medecin traitant, GP, community physician, call her what you will. She tends to keep out of things as she is not up to speed on GnRH, etc. Good for the irbesartan, amlodipine, metformin, cocktail that I am currently on.

Dr Tigger; he is the urologist. Optimistic at least to my face. He pushed the prostatectomy, radiation,  ADT cocktail as a cure. He has hailed the latest PSA results as evidence of this. Good surgeon by all all accounts, less good on statistics.

Dr Eeyore; Dr Eeyore is the downer. He was convinced that I would relapse even while I am on Firmagon. I have tried telling him that this is very unlikely as I have at worst micometastases of Gleason grade 7 and they are going to have to do some work before they become castration resistant. But there you are, imagine a vaguely middle eastern looking version of Scotty from Star Trek and you have him to a T. He is not much of a doctor as he has been doing medical physics since qualification, **** hot on alpha / beta ratios, knows next to nowt on ingrowing toenails, unlike Dr Pooh!

My argument and belief is that my cancer is like a curate's egg.
The good things are;
1) My low Gleason grade this tends to show that the cancer is local, maybe it is or was on the urethra at the apex of the prostate, maybe it is in the prostatic fossa, certainly I doubt it is much further than the close pelvic lymph nodes for the moment.
2 ) My PSA, this fell from at least 130 -140 before the operation to 2.07 after the operation to 0.27 after 12 days of Firmagon. This indicates a strong presence in the prostate  with very little outside and a high susceptibility to ADT, all good things.
3) I did not have any cribiform or nervous invasion, both of these tend to be indicators that the cancer can metastase further outfield.

Now for the bad things.

1) As detailed above, I had extra prostatic extensions, seminal vesical invasion, etc, these are not good and harbingers of a cancer that has spread to at least the prostatic fossa and maybe the guard lymph nodes.
2) Trials with men that have undergone radical prostatectomy with radiation and ADT that I referred to above show close to 100% biological recurrence within ten years with local and sometimes distant metastases. However most of these men had less radiation than me, more like 60 rather than 66 Gys and less ADT, maybe that is enough to tip the odds more in my favour. A lot of them were higher GS eg a good sprinkling of 9 and 10's.
The big thing in my view is what happens when I stop the ADT, if my PSA jumps back quick and fast then I am in the ****. It will be back on the ADt and waiting for the castration resistance to kick in or worse.
I reckon I am 100 % certain to be here in 5 years from diagnosis, end of second year coming up in September. I have a very good chance of doing ten, my stats are not good but they are not bad either. Biological recurrence can be controlled with ADT for quite a while, maybe a bit of spot treatment if a nasty something appears in my pelvic region. Fifteen, I will put that on hold for a bit!
On verra!

Best wishes,

Georges

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi there,

Interestingly I am on Irbesartan which has shown the ability to block the progress of PCa in a Finnish study.
Maybe the cocktail of radiation, degarelix, tomato juice, metformin and irbesartan will finish the little bandits off.
Fingers crossed and take them up the tail coming out of the sun!
Roger Number One!
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ijc.31802

Best wishes,

Georges

Josephg
Posts: 165
Joined: Jan 2013

I love the references to the Winnie-the-Pooh characters, Georges, as they paint a very, very clear picture to me of your impressions of the traits of your PCa healthcare providers.  Perhaps, this is because I was immersed in Winnie-the-Pooh books and videos, ad nauseam, when my two childern were young.  I have the impression that you are not fully comfortable with all of your healthcare providers, in their care and treatment of your PCa, or at least in their communications with you.  Maybe, I'm wrong.

For me, I need to be as comfortable as possible with all of my healthcare providers.  As such, upon the initial consultation, I lay out the ground rules on how I expect us to engage in our patient/provider relationship, and they either accept or decline my ground rules.  If they decline, I then search for and obtain another healthcare provider, who will accept and interact with me by my ground rules.  I recognize that this type of healthcare provider selection process, and the resulting patient flexibility to choose, is not available to all patients in all parts of the world, so I do feel blessed that I have that flexibility to choose.

One of my ground rules with my healthcare providers is that I be given all of the facts, as soon as they are known, and that I will not accept any discretionary filtering or hiding of any details on the part of the healthcare provider, no matter how unpleasant they may be to me.  I also require that my healthcare providers give me their experience-based impressions and predictions regarding any potential future outcomes, good and bad, that may be associated with my particular ailment, if it is short-term, long-term, or chronic.  I recognize that this specific patient/provider relationship, where there is absolute candor and transparency, with no punches being pulled, is not one that all patients would prefer.

In my own case with PCa, my Oncologist gave me candid predictions on the outcomes associated with the various treatments available to me and my specific PCa, prior to me making any decisions on my specific treatment plan.  I was advised that the probability of success for recommended prostatectomy was in the neighborhood of 65%.  I was also advised at the time, that if the prostatectomy failed, the probability of success for the subsequent recommended concurrent radiation and ADT treatment was in the neighborhood of 60%.  Thus, if I consider these two treatments as statistically independent (may not be totally correct), my overall probability of success for a cure, was in the neighborhood of 40%.  So, I knew going into the treatments that my overall probability of success for a cure was less than 50%.

Once my prostatectomy and subsequent concurrent radiation and ADT treatments failed, and my PSA started rising again, I asked my Oncologist to give me her best prediction of my life expectancy, based upon her own experience with palliative treatments, along with the accumulated data on known outcomes for millions of documented PCa patients.  She told me that she predicted my life expectancy to be 10-15 years, with a median of 12 years.  She also made it very clear that every patient's case is unique, but the vast abundance of data for known PCa outcomes, in aggregate, suggested these life expectancy values for me, if new technologies or treatments were not forthcoming during this period of time.  Of course, also she stressed that 10+ years is a long time in the medical field from a technology, innovation, and treatment perspective, during which it is fully expected that there will be new technologies and treatments emerging for PCa.

This conversation with my Oncologist took place 1 1/2 years ago, so my current median life expectancy is now 10 1/2 years.  At the 2 year mark, I will ask her to update her prediction, regarding my life expectancy, based upon 2 more years of my accumulated PCa data.  While the initial concept of being given a finite amount of life expectancy time may be a bit discomforting, once I got over the initial shock and accepted the predicted outcome, I have been able to adjust my life plans accordingly.  I am not feeling like a victim, but rather, this has given me some real structure toward planning my remaining years.

I recently retired at age 66, something I would not have even considererd, if I did not have this PCa diagnosis.  My wife will be retiring at the end of the month to be with me fulltime, something she would not have considered either, if I did not have this PCa diagnosis.  I am making a bucket list of activities that I really want to do in my time remaining, something that was simply a concept, or even a topic of joking conversation, prior to my PCa diagnosis and failed treatments.  I live each day, one at a time, doing what gives me gratification on that particular day.  Starting next month, my wife and I will live each day, one at a time, doing what gives us gratification on that particular day.

Last, I am a Darwinian philosophically and at heart.  My wife and I raised two children, who are now out on their own in the world, successful, and living their own lives and dreams.  I recently became a grandfather, thus being able to observe the next generation of mine and my wife's bloodlines coming into this world, after my children.  I have done my part in this world, and as such, I am truly at peace.

Time and time again in this and other forums, we read recommendations from our fellow members to focus on the present and future, and not on the past.  I consider this to be really sage advice.

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi Josephg,

I was a restless and iconoclastic young man coming of age with punk rock and the economic and social turmoil of the late seventies and early eighties. I guess that has never left me, in my early fifties I left the UK which is a constitutional monarchy to live in France, a laïc republic.
My wife says that I am not yet French like her but I sing the Marseillaise like I mean it.
There is a tradition in English literature of mocking people by using literary parody, one of the best known and most effective examples of this is The Westminster Alice by Saki.
https://en.wikipedia.org/wiki/The_Westminster_Alice
I am doing it here to try and express the personalities of my doctors. They are pretty good but they have their strengths and weaknesses like us all, I could change but I am not unhappy with them.
I have copies of all my test results, scans, biopsy, etc and I have discussed them with Tigger and Eeyore at length.
As I have discussed before it is possible to make different narratives depending on how you interpret the evidence and the weights you give to different pieces.
I had a talk with Tigger about statistics at the beginning and we agreed that they only apply to groups, they do not say anything about the individual. If a procedure has a 90% success rate that is no comfort to the 10% that fail. Not all patients are the same and you only get one shot, it is not like poker where you can play the odds hand after hand and build up a margin.
As I have said before I have a fairly clear idea of my own likely life span and the fact that it really depends on future events that are unknowable.
As we learn more about the genetic basis of prostate cancer we are beginning to move away from the crude measures of Gleason Score, etc and more into which patients have the genes that code for metastasis or androgen resistance. When we can do detailed genetic testing on all cases we will be able to pick out the cancers that are not going anywhere, the at risk cases and the real hard core that have a good chance of dying.
I would say that I tend more to Dawkin's view, our genes are not unique to us so propagating them is pointless from a biological point of view although it might give us individual satisfaction.
Anyway as Keynes said we are all dead in the long run, he would probably have said we are all dead in the short run if he could see the unholy mess we are making of things today but that is another argument!

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Georges,

My professor friends explain modern French society by claiming that all the viril, Alpha Males were killed by the Nazis, leaving an effete, constantly moaning residiuum.  There opinion, too, is of course Darwinian.  France is about as efficient and satisfying as a Renault.  The French are not slimmer than Americans due to diet, but due to the fact that they have to fit into a Renault. 

A similiar theory is found in interpretations of the American South following the US Civil War.  375,000 Confederate men died; toward the end, boys hardly in there teens were sent to the slaughter.  Afterward, few healthy adult males remained. Actually, very few.  I grew up in Charleston, SC, incidentally.  For comparison, the US lost around 50,000 troops in Vietnam, which was considered a bloodbath (and rightly so).  Union and Confederate losses added together came to around 700,000.  The Civil War losses were therefore around 14 times that of Viet Nam, and in Civil War times, the population was dramatically smaller.

The English pop rock star Al Stewart has a song on one of his biggest LPs, entitled The Palace of Versailles, regarding French society.  Part of it runs:

The ghost of revolution still prowls the Paris streets/

Down all the restless centuries, it wanders incomplete/

It speaks inside the cheap red wine of cafe summer nights/

Its red and amber voices call to cars at traffic lights.

Why do you wait, to see the day begin ?

Your time is waisting in the wind. Wondering why, wondering why,

It echoes through the lonely Palace of Versailles.

 

 

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi Max,

Obviously your professor friends are having a laugh or they are not professors of genetics!
It does not really matter how many virile males are wiped out as the vast majority of women that carry the same genes will survive.
During meiosis chromosomes crossover and mix, the only exceptions to this rule are the X Y pair because the Y has next to nothing on it.
If you looked at my mother's and my father's chromosomes compared to mine, one of the first pair of mine would have areas derived from both chromosomes of my mother's first pair and the other would have areas derived from the both chromosomes of my father's first pair.
It is this continual mixing that produces genetic diversity, if it was just a swapping of chromosomes it would be very boring genetically.
Most children vaguely resemble their parents but this churn can throw some real surprises.
Their argument also ignores that fact that German men suffered terrible losses in WW1 and WW2 but they seem to have recovered and are doing better than the USA and on the whole they look a lot fitter.
The French do have their peculiarities such as raving on about Dalton and the scientific method while being a very superstitious bunch.
They also have a bad habit of saying that they understand the USA because it is a republic like France, it is not like the French  republic at all and they do not understand it that well.
Public discourse is definitely more intelligent than anything found in the USA where dumbed down god bothering seems to be the rule at all levels and you seem to have chosen the stupidest and most incompetent man in the country for President.
But these are all cultural things and can change over time, certainly faster than the genetic make up of the population!

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

I won't say whom I support politically, but our President has the US economy going gangbusters, outpacing the whole world.  Minority unemployment is the LOWEST ever recorded in the US.   Manufacturing jobs have returned by the tens of thousands.   Police and military morale has skyrocketed.  Drug price reform is not yet completely settled, but moving in the right direction.  The US is now a petroleum EXPORTER, and has excess gasoline, for among the lowest price in the world.   Natural gas is overabundant and very inexpensive.  While it wavers back-and-forth a bit, he will very likely get North Korea to denuclearaize -- something unimaginable three years ago.

His vision of national soverginty is taking firm root in Poland, Hungary, somewhat in Italy, and points elsewhere.

Enjoy Week 19 of Yellow Vest,

max

hewhositsoncushions
Posts: 279
Joined: Mar 2017

I fully expect mention of soy lattes, hyper manicured beards and man buns within five posts :)

Georges Calvez
Posts: 295
Joined: Sep 2018

Hi Cushions,

You are talking metrosexuals there, we have them in Paris just like the USA has them in New York.
Round here I fit in because I am short but broad shouldered with a beard, I look good in wellies and bleus and I know my way round a fish counter and a pig and the difference between a Merlot and a Cabernet Sauvignon.
If you went in a café round here and ordered a soy latte I think they would pretend you did not exist and ignore you until you left!
Which bit of the UK do you live in?

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

We tend to call them hipsters here. Don't get me started on the cultural shift in the 1960's that eventually let to them CoolSmile

It would appear then that the difference between you and them is that you can wear a lumberjack shirt and mean it Laughing

I am from the central regions of the UK - we have a mixture of "Oy, are you looking at me" pubs and "800 types of coffee" cafes so it is an odd mixture. I fit neither camp ;)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Hewho,

I went to Portsmouth in 1985, my first trip ever to England.  I had been to Scotland numerous times before, and thought that they would be similiar. They were not.   It was the height of the Punk movement: people with Peacock hair plummage, extending out a foot in many cases; attire from Dawn of the Dead.   But they were friendly and personable.  The 60s hippies were all about apathy, and being 'natural,' which meant unwashed, usually.    These punkers had to spend HOURS on just their hair, the OPPOSITE of apathy.  It was all a display.  Those guys are all bald by now, so styles have changed. 

Bottom line: I loved all area of England and Scotland that I've visited.

 

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