Prostate Cancer Survivors

 

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There is no treatment for localized disease

Hello,

Let me tell you this: there is no
treatment for localized prostate cancer.
Neither RP, radiating or brachy is
working. Nor is watchful waiting
working, however the latter is the
best thing you can do.

Whatever approach you take, including
watchful waiting, in all forms it is
the same, some patients do well, some
patients less well -but still pretty
good- and other patients fare badly
and go in relentless progression. This
latter group is by far the smallest.

In my opinion it's a primitive idea
to think you *can get it out all* when
it is still local as urologists try
to make you believe. Besides they cannot
even determine clinically whether a
cancer is local or not.

The reason is that at a size of 2 cubic
millimeters, which is 0,002 ml, the
little bastard has already a completely
developed vessel system connected
with the general circulation. It sheds
cells, waste and exotic products aka
growth factors in the system which
are already infected when the surgeon
comes in.

This micrometastatic disease luckily
is just as the primary tumor indolent
in the case of prostate cancer. Again,
as a rule.

Cutting, burning and icing are barbaric
procedures based on primitive thinking.
They are the cause of unnecessary misery
for hundreds of thousands of men in the
form of incontinence, impotence, rectal
bleeding and other ailments.

As there is no treatment for local
disaease, WW is the best you can do.
WW until the appearance of symptoms,
which the majority of you will never
experience.

When symptoms are local and obstructing
urine flow, a TURP may suffice. When
there are general symptoms caused by
pressure of metastatic lesions, hormonal
therapy is in order. When this fails to
work just as in other cancers chemotherapy
can stretch life.

This is my short and simple message. My
name is Henk Scholten and I am a Dutchman.
My age is 56 and I never had a PSA.
I am a MD and I was from 1997 until 2007
the personal physician of a Dutch VIP with
prostate cancer, presenting with painful
metastasis. He died in august last year.

At the moment, I have 3 patients on WW
and I care for a few elderly people
living around the corner in the city
(Haarlem) I live in.

Best regards,

Henk Scholten

Re: There is no treatment for localized disease

Hi there Henke!

I was diagnosed 3yrs ago.
T4 Grade with spread to right seminal vesicle and pelvic wall.
PSA 182
Gleason: Never clear after cystoscopy but probably 4+3 at least.

Very, very luckily, no spread to bones or lymph nodes.

The prognosis was bleak...a few years to live.


I am CONVINCED that a combination of these four factors has seen me come through it all, so far, incredibly well:

1) Hormone Treatment
2) Accurate Radiotherapy
3) Radical change of diet (totally dairy-free, among other things)
4) Careful choice of supplements taken daily.

BUT, by far the most important factor of all was knowledge.
I knew NOTHING about PCa and didn't even know what PSA was.

And that knowledge came from one basic source:
THE INTERNET, and all the amazing groups of people there who have set up PCa forums.

This site was the first PCa patient-devoted site that I found, within days of diagnosis, and I thank my lucky stars for that, because I was able to decide and eventually dictate my treatment becuase of all the invaluable up-to-date info and advice I received from fellow sufferers the world over/



NEVER EVER GIVE UP HOPE,

...and let's thank God for selfless guys like Terry Herbert who founded this site.

Very Best Wishes,

George

England

Re: There is no treatment for localized disease

Henk,
I have to side with George - Never give up hope. I disagree with the statement that a more aggressive treatment never works for a more aggressive cancer. WW is great if you can show that the doubling time is insignificant but if not RT and RP can definitely not only prolong life but sometimes knock the cancer out of your system.
In my case EBRT and Brachy were completed a year ago and other than about another year on ADT my QOL is better than facing what would have happened without treatment as my PSA went from 3 to 29 in two short years.
For anyone to suggest that I'm cured right now would be a misstatement as only time will tell (I'd say at least 7 more years).
What confuses me though is how many doctors can tell their patients that you're cured, I got it out, right after a procedure. That many of these patients go on to rising PSA's. A more accurate statement from these physicians might be, I feel confident that I got it all but to be sure you'll have to be closely monitored for x years.
It will be at least 2 more years before I establish a "nadir". In the meantime, I'm keeping my fingers crossed and not giving up hope. (Alaska, USA)

Re: There is no treatment for localized disease

Hi Pat,

The "C-word"...terrifies me!

Yesterday I read a message on the UK Prostate Cancer Charity, actually naming ME as an example of someone now cured.

Oh boy...I had to respond immediately, making it crystal clear to all that I am certainly NOT cured. I am only 6 months into 'no treatment', and like everyone else who has this illness, I walk a tightrope.

Each month I have a PSA test and my fear and anxiety are still there, same as every month since day one.
I dread to see a sudden surge in the numbers.
I dread having to return to hormone therapy injections, possibly for life, if my cancer flares up.

My message was, though, I AM optimistic that this period of remission may continue for a lot longer yet.
I never stray from my chosen diet or my everyday way of living life now. I dare not change direction.

I consider myself lucky, and I don't fully understand why I have responded so well to treatment. Only today I heard that a dear friend in England here seems to have run out of option as regards treatment, everything tried so far has failed. I am trying my utmost to have him believe that there must be another option to try.

I think all of us MUST encourage eachother, always push for new options, new ideas. Cultivate and nurture hope.
We really are in this war together.

Very Best Wishes,

George

Re: There is no treatment for localized disease

Both George and Pat have emphasised the importance of not losing hope – and I’m sure Henk wouldn’t argue with that, because what he is saying is that for the majority of men diagnosed with what is termed “prostate cancer” at present, there is never any need to lose hope because for the substantial majority of those men, the disease will never threaten them and will not result in any loss of life expectancy. Of course there are some men whose version of the disease will be very aggressive – it may not be possible to ‘cure’ those men, but it may be possible to manage the disease and curb it’s fatal advance for many years.

The issue is really how to define “cancer” and this was summed up by another doctor - Christopher Logothetis when he was talking to an US-TOO meeting in Texas. He had been commenting on the relative inaccuracy of the diagnostic process. The question put to him was:

"Does this mean that a lot of people who are diagnosed as having cancer really don't?”

His answer was:

"Yes, if one accepts the diagnosis that the cancer is a disease that is potentially lethal…….

One of the problems with prostate cancer is definition. They label it as a cancer, and they force us all to behave in a way that introduces us to a cascade of events that sends us to very morbid therapy. It's sort of like once that cancer label is put on there we are obligated to behave in a certain way, and its driven by physician beliefs and patient beliefs and frequently they don't have anything to do with reality.

And they are only worrisome because the pathologist has decided to call it a cancer.”


Another well known prostate cancer specialist was the late Dr Willet Whitmore (he is one of the personas after whom the current staging process is named) . Although he was very open minded about looking at better ways to treat the disease, he was among a number of his colleagues who disputed the value of the prostate-specific antigen, or PSA, screening test for men over 65. He recommended "watchful waiting" rather then rushing into surgery with older men with elevated PSA levels or even confirmed prostate cancers. In his view, survival had less to do with treatment than with the biology of individual tumors The paradox of prostate cancer was summed by him, succinctly as:

“Is cure necessary in those in whom it may be possible, and is cure possible in those in whom it is necessary?”

Apart from the issue of just how “cancer” should be defined, there is also the question of how “cure” should be defined. Currently, according to a recent study there are more than 200 definitions of cure, most of which refer to changes in PSA levels after treatment. But what most men are interested in is how long they will live – not necessarily their PSA levels, unless it can be shown that this is an accurate pointer to their potential survival. And of course there are simply no studies that demonstrate this with any degree of certainty.

There is a very large and long overdue study being undertaken in Europe to try and ascertain the value of current conventional treatments. It has not been running very long, but the initial reports after the first five years are coming out now. One of the interesting bits of information in one of the reports that in the initial reporting period 126 of the 1,014 men in this arm of the study died (12.4%), of these deaths 20 were prostate cancer related (2.0%), which is in line with national statistics that show prostate cancer related deaths to be about 3% of all male deaths.

Prostate cancer death occurred

• In four patients after surgery (two of perioperative complications),
• in ten after Radiation Therapy, and
• in six after ADT (Androgen Deprivation Therapy).

No patient initially managed with a Watchful Waiting policy died of prostate cancer.

Of course it is early days yet but there is a good deal of evidence around that Henk’s views are worth being considered by newly diagnosed men – or even with those who are told that their treatment has ‘failed’ merely because of a change in PSA levels.

All the best

Terry in Australia

Re: There is no treatment for localized disease

Thanks for such a detailed post Terry.

I wouldn't dispute Henke's views on WW in the majority of men diagnosed with PSA. In my opinion, wherever it's possible, WW is the way to go.

Of course, in cases like mine and others where PSA is obviously soaring way beyond the norm and into the 100s or 1000s, we have no option other than deciding which treatment will be best for us.

I dearly wish all UK urolgists and oncologists would study the ideas of the doctors quoted above.

Day after day I see cases of men, many of them very young, having radical, sometimes damaging surgery purely because of a somewhat elavated PSA.

Just one point about PSA numbers. I for one am not too worried my levels if, and when, a rise occurs, they'll stay in double figures...(OK, I may be asking for trouble!) and I would most definitely take my time in decideing my next step...if I'm lucky enough to see just a gradual ascent.

Sudden surges over short periods of time, however, would definitely see me back on treatment.

Whichever way this wind blows me, I do WANT to live and will do all I can to survive.

Best Wishes,
and yes...
Try always to keep HOPE,

George.

Re: Re: There is no treatment for localized disease

Frankly, when I asked my doctor about watchful waiting he said and I quote, "You'd have to be out of your f'n mind". It all comes down to choices. No one sold me down the river. If the word Cancer does anything it starts you reading and learning your options. We're all adults and we all have made our beds. Mine was Robotic Prostatectomy especially since my father died of PC. Yours might be to wait but for how long?

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Replying to:

Thanks for such a detailed post Terry.

I wouldn't dispute Henke's views on WW in the majority of men diagnosed with PSA. In my opinion, wherever it's possible, WW is the way to go.

Of course, in cases like mine and others where PSA is obviously soaring way beyond the norm and into the 100s or 1000s, we have no option other than deciding which treatment will be best for us.

I dearly wish all UK urolgists and oncologists would study the ideas of the doctors quoted above.

Day after day I see cases of men, many of them very young, having radical, sometimes damaging surgery purely because of a somewhat elavated PSA.

Just one point about PSA numbers. I for one am not too worried my levels if, and when, a rise occurs, they'll stay in double figures...(OK, I may be asking for trouble!) and I would most definitely take my time in decideing my next step...if I'm lucky enough to see just a gradual ascent.

Sudden surges over short periods of time, however, would definitely see me back on treatment.

Whichever way this wind blows me, I do WANT to live and will do all I can to survive.

Best Wishes,
and yes...
Try always to keep HOPE,

George.

Re: There is no treatment for localized disease

Henk
Do you think there is any value in giving high risk patients(grade 3) chemotherapy taxotere immediately after prostate removal, appartently there are several trials taken place at the moment to see if this cuts the risk of cancer returning.

Re: Re: There is no treatment for localized disease

Hello,

(site name for those who can read dutch)

I don't know the history, but it might help in high Gleason cases. However Taxotere is a pretty heavy deal when you are at the beginning of the road.

This can also work (see below). I have experience with one patient who became hormone refractory. He had nearly side effects on this regime and it postponed Taxotere for 2 years.

You could discuss this with your doctor

Best reagards,

Henk Scholten



Metronomic therapy with cyclophosphamide and dexamethasone for prostate
carcinoma.Glode LM, Barqawi A, Crighton F, Crawford ED, Kerbel R.
Oncology Urology Department, University of Colorado Health Sciences Center,
Denver, Colorado 80262, USA. mike.glode@uchsc.edu

BACKGROUND: The current study was designed to evaluate the efficacy and
toxicity of the continuous oral administration of a combination of
cyclophosphamide (50 mg/day given in the morning) and dexamethasone (1
mg/day given in the evening) in patients with prostate specific antigen
(PSA) progression despite single or multiagent hormone therapy and
antiandrogen withdrawal. METHODS: The authors retrospectively evaluated the
medical records of all patients with prostate carcinoma who were treated
with dexamethasone and cyclophosphamide and who were unable to participate
in Phase II drug trials or had failed previous chemotherapy regimens.
RESULTS: Using clinical response guidelines set forth by the Prostate
Specific Antigen Working Group, 29% of patients were found to have a > or =
80% reduction in PSA, 39% were found to have a 50-79% reduction in PSA, 6%
were found to have a < 50% decrease in PSA, and 26% experienced disease
progression while receiving treatment. The duration of response was 8 months
(95% confidence interval [95% CI], 4-10 months). The duration of treatment
was 9 months (95% CI, 6-14 months). The treatment was reported to be well
tolerated with side effects being primarily bruising, Cushingoid facies, and
gastrointestinal distress. CONCLUSIONS: In the current study, low-dose
dexamethasone and cyclophosphamide demonstrated efficacy as salvage therapy
in the treatment of patients with hormone-refractory prostate carcinoma.
Copyright 2003 American Cancer Society.

PMID: 14534880 [PubMed - indexed for MEDLINE]

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Replying to:

Henk
Do you think there is any value in giving high risk patients(grade 3) chemotherapy taxotere immediately after prostate removal, appartently there are several trials taken place at the moment to see if this cuts the risk of cancer returning.

Re: There is no treatment for localized disease

The only caveate I would raise re: WW is to pay attention to the slope...the rate of increase...of PSA readings. My was pretty significant (3.4 to 8.8 in just over a year) so I opted to take action. My first reading after PBRT is 0.77.

But that is not the reason I am posting today. The following is from the electronic edition of the Gainesville (FL) Sun:

New hope for fighting cancer

By Diane Chun Sun staff writer

You might describe Dr. Jorge Galante as the ultimate educated medical consumer.

The 73-year-old orthopedic surgeon has been dealing with prostate cancer for a decade. After two years of conventional treatment, including surgery and radiation, his cancer recurred.

The Chicago resident went searching for an alternative to undergoing more of the same treatment.
His search brought him to a clinical trial involving immunotherapy now under way at Shands at the University of Florida, under the direction of Dr. Johannes Vieweg, professor and chairman of the department of urology.

Galante flies to Florida once a week to receive an injection of an experimental vaccine that enlists his body's own cells in the battle against cancer.

Every year, 230,000 men are diagnosed with prostate cancer. The American Cancer Society estimates that Florida will rank behind only California and Texas in the number of new cases diagnosed this year.

Vieweg brought his studies of the potential prostate cancer vaccine with him from Duke University when he joined the UF College of Medicine faculty in 2006.
He says the customized therapy overcomes many of the obstacles and side effects of other forms of cancer treatment because it uses the patient's own cells.
Blood is drawn from the patient and the dendritic cells are isolated from the white blood cells. They are then genetically manipulated to detect the antigens that mark tumor cells before being reinjected into the patient.

Antigens are protein fragments produced by invaders such as viruses or bacteria that trigger an attack by the immune system. Vieweg characterizes them as "a red flag" at the surface of tumor cells.

The antigen telomerase is overexpressed in prostate cancer and other human cancers, Vieweg explained.
Dendritic cells activate the immune system by capturing the antigen - in this case, telomerase - and presenting it to the body's killer cells, called T cells.

The custom-made vaccine is prepared in a $4 million "clean room" in the UF Cancer and Genetics Research Building. It's not a vaccine in the traditional sense. A patient can't get a shot or two and prevent cancer. But it does enlist the body's immune system to battle against cancerous cells.
"We have something unique here," Vieweg said.

Because the dendritic cells can be programmed to seek out tumor cells with pinpoint accuracy, they can combat cancer without causing further harm to the body, unlike radiation or chemotherapy.

The strategy being tested in the current clinical trial is not limited to prostate or kidney cancer, but is potentially applicable to all cancers, in Vieweg's view.

"We just haven't done the studies to determine which forms of cancer respond best to this therapy," the researcher said. "I'd have to say we're almost there."
"Almost there" is close enough for Galante.

As part of the clinical trial, Galante is helping to prove that the vaccine is safe and effective for use by others.

But for him, the immediate benefit is that he is able to lead a normal life.

"I have a wife, children and four grandchildren whom I want to see grow up," Galante said. "I have been waiting for this vaccine to come on line."

Diane Chun can be reached at 352-374-5041 or chund@gvillesun

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