update

[Guest guest]

In a message dated 11/4/01 10:27:21 PM Eastern Standard Time,

Grantridge@... writes:

> Please add my name to the card and tell I wish her well.

Hi and others,

is going to really be surprised to receive the card from all of us. It

may be Wed before I can get one in mail. I'm going into town Tues and will

get the card then.

Eunice

[Guest guest]

Glad to hear that she is doing as good as she is. Many people lead long

productive lives with pacemakers. Wish her a speedy recovery.

Take Care

Tim

ERWachter@... wrote: Hi Everyone,

I just talked to . When I called, she answered the telephone. Her

voice sounded strong. However, even with the new valve, her heart is not

working the way the doctors want it to, so tomorrow (Mon) they are going to

put in a pacemaker. She is hoping to come home Wed, depending on how the

pacemaker does.

She wanted to know how the list was going. I told her we had no problems,

that a lot of you were appreciative of the update last week.

I will be calling her again later this week and will give another update at

that time.

Eunice

[Guest guest]

Nice to hear your doing fine..... DEspite the minor

problems.... the greatest gift... 'living and

breathing' is the best gift one can receive.

HAve a wonderful holiday

Phil

two weeks post robotic surgery

--- " Reverend J. McVay, D.D. "

wrote:

> I am 68. It has been one year since my traditional

> RRP. PSA remains

> undetectable, a great Christmas present. Functional

> erections occurred

> three weeks post surgery and continue despite losing

> both nerve bundles,

> though any of the PDE5 inhibitors do improved them,

> I prefer tadalafil from

> India as the most cost effective. Minor

> incontinence was a problem on and

> off, but I haven't needed to wear a pad for the last

> few months.

>

> Bladder neck strictures were a problem and may yet

> be one, but recently this

> seems to have found a workable balance. so I was

> able to cancel my last

> cystoscopic surgery.

>

> The down side is my libido remains low and I have

> yet to experience an

> orgasm. But I am alive and sucking air, so my

> complaints are minor.

>

> Have a great holiday, and at least for a couple of

> weeks forget about

> disease and enjoy life.

>

> Peace,

>

> K'sitew

>

>

__________________________________________________

[Guest guest]

My update:

I'm 65 and first heard the PCa diagnosis on October 24th this year (one of

those days one doesn't forget, like the day of giving up smoking). Gleason

3+3, stage T1, PSA maximum 7.6. Since I am testosterone deficient one of the

first ready to hand options was to stop the testosterone supplements, and

there's been a lively discussion among the experts about whether this was a

good thing; the first urologist said it was a good idea, the second regarded

it as an unnecessary step in the case of a hardly developed carcinoma. I

spoke today to the endocrinologist who regards it as not particularly his

department but says I need the testosterone so he goes along with the second

uro. This latter thinks I should have radical prostatectomy partly because

this would also solve the problems I have with urine retention (I have a

super pubic catheter) whereas radiation etc. would not.

A further problem is that I'm leaving the country (Netherlands) at the end

of February so if anything is to be done it should happen before then.

So there seem to be several options:

- continue watchfully waiting, with annual PSA checks etc for which i would

return to Holland

- try to organize something like HIFU (for which I would have to go to

Belgium) which need only deal with the part of the prostate where the

carcinoma was detected, and handle the retention as a separate issue (TURP?)

- etc.

Any views on this? I speak to the urologist again in 6 weeks time but might

take other initiatives before then. I'm quite happy with or without the

testo supplement - everything is functioning except for the retention - and

wouldn't want to risk sacrificing my present QOL by radical surgery.

Happy holidays all! Piers

[Guest guest]

Hi Piers...

Im 2 weeks post my DaVinci surgery.... My final

analysis was a Gleason 7, PSA 12, 2/12 samples were

cancerous (from the biopsy)..

THe one thing that help my decision was understanding

that any hi energy treatments though effective, there

may be a chance of reoccurance (as with anythy

treament). THe big thing is you cant go in later to

have radical surgery (or robotic) after some of these

treatments. You cant do surgery on cauterized or dead

tissue. (too many complications). Lots of info may be

needed in deciding on partial treatments.

Hence it was my choice for total removal. As child

rearing isnt an issue. The choice wasnt hard for me.

have a wonderful holiday and enjoy Europe!

Phil

--- Piers Clement wrote:

> My update:

>

> I'm 65 and first heard the PCa diagnosis on October

> 24th this year (one of

> those days one doesn't forget, like the day of

> giving up smoking). Gleason

> 3+3, stage T1, PSA maximum 7.6. Since I am

> testosterone deficient one of the

> first ready to hand options was to stop the

> testosterone supplements, and

> there's been a lively discussion among the experts

> about whether this was a

> good thing; the first urologist said it was a good

> idea, the second regarded

> it as an unnecessary step in the case of a hardly

> developed carcinoma. I

> spoke today to the endocrinologist who regards it as

> not particularly his

> department but says I need the testosterone so he

> goes along with the second

> uro. This latter thinks I should have radical

> prostatectomy partly because

> this would also solve the problems I have with urine

> retention (I have a

> super pubic catheter) whereas radiation etc. would

> not.

>

> A further problem is that I'm leaving the country

> (Netherlands) at the end

> of February so if anything is to be done it should

> happen before then.

>

> So there seem to be several options:

>

> - continue watchfully waiting, with annual PSA

> checks etc for which i would

> return to Holland

> - try to organize something like HIFU (for which I

> would have to go to

> Belgium) which need only deal with the part of the

> prostate where the

> carcinoma was detected, and handle the retention as

> a separate issue (TURP?)

> - etc.

>

> Any views on this? I speak to the urologist again in

> 6 weeks time but might

> take other initiatives before then. I'm quite happy

> with or without the

> testo supplement - everything is functioning except

> for the retention - and

> wouldn't want to risk sacrificing my present QOL by

> radical surgery.

>

> Happy holidays all! Piers

>

>

>

__________________________________________________

[Guest guest]

Thanks Phil for your reply! I follow your argument (as the endocrinologist

said to me, why don't you get it done and then it's over and you don't have

to worry any more) but the scepter of being left in a worse state with

regard to QOL (impotence and/or incontinence) is what haunts me. You don't

mention how you stand with regard to these aspects. If I decided on Da Vinci

surgery there would be a 4 month waiting list anyway, so it looks like I'll

just have to sit and wait a bit longer.

Been trying some diet and life style changes in the hope that it might go

away on its own or become stable - green tea, olive oil, turmeric, cooked

tomatoes, pomegranate juice are regularly consumed here, plus some other

hints a poster was kind enough to send me off-list. Maybe it works, maybe

not, but believing in it is an important part - otherwise why does the

placebo effect work so often? And I echo the words of a recent mail on this

list, " Remember that your mind is the most powerful healer that you have and

it can do the most amazing things if you give it the opportunity. "

To clarify, Europe is my domicile and I'm planning emigration to a part of

Europe with a more congenial climate - this also may help the cure! (though

plans were hatched long before the diagnosis).

Best, Piers

Phil wrote:

> Im 2 weeks post my DaVinci surgery.... My final

> analysis was a Gleason 7, PSA 12, 2/12 samples were

> cancerous (from the biopsy)..

>

> THe one thing that help my decision was understanding

> that any hi energy treatments though effective, there

> may be a chance of reoccurance (as with anythy

> treament). THe big thing is you cant go in later to

> have radical surgery (or robotic) after some of these

> treatments. You cant do surgery on cauterized or dead

> tissue. (too many complications). Lots of info may be

> needed in deciding on partial treatments.

>

> Hence it was my choice for total removal. As child

> rearing isnt an issue. The choice wasnt hard for me.

>

> have a wonderful holiday and enjoy Europe!

[Guest guest]

G’day Piers,

In my mail to Abe I mentioned a file on

this site which you might find it useful to read, since it reviews the current

state of affairs for Active Surveillance, the current, more accurate term for

Watchful Waiting (to find the file, click on the Files link below this message

and open the file labeled Insights AS article.)

You might also find it of interest to read

the views of Donna Pogliano a very determined prostate cancer advocate here http://www.prostatecancerwatchfulwaiting.co.za/oo.html

and here http://www.yananow.net/newbyadvice.htm.

She is the co-author of " A Primer on Prostate Cancer, The Empowered

Patient's Guide " , probably the best book on prostate cancer – you can

get a copy through Amazon.

All the best,

Terry Herbert in Melbourne, Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. November '06 PSA 31.4

My site is at www.yananow.net

As a

physician, I am painfully aware that most of the decisions we make with regard

to prostate cancer are made with inadequate data: Dr

“Snuffy” Myers.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Piers Clement

Sent: Friday, 22 December 2006

3:37 AM

To:

ProstateCancerSupport

Subject: Re:

Update

My update:

I'm 65 and first heard the PCa diagnosis on October 24th this year (one of

those days one doesn't forget, like the day of giving up smoking). Gleason

3+3, stage T1, PSA maximum 7.6. Since I am testosterone deficient one of the

first ready to hand options was to stop the testosterone supplements, and

there's been a lively discussion among the experts about whether this was a

good thing; the first urologist said it was a good idea, the second regarded

it as an unnecessary step in the case of a hardly developed carcinoma. I

spoke today to the endocrinologist who regards it as not particularly his

department but says I need the testosterone so he goes along with the second

uro. This latter thinks I should have radical prostatectomy partly because

this would also solve the problems I have with urine retention (I have a

super pubic catheter) whereas radiation etc. would not.

A further problem is that I'm leaving the country (Netherlands) at the end

of February so if anything is to be done it should happen before then.

So there seem to be several options:

- continue watchfully waiting, with annual PSA checks etc for which i would

return to Holland

- try to organize something like HIFU (for which I would have to go to

Belgium)

which need only deal with the part of the prostate where the

carcinoma was detected, and handle the retention as a separate issue (TURP?)

- etc.

Any views on this? I speak to the urologist again in 6 weeks time but might

take other initiatives before then. I'm quite happy with or without the

testo supplement - everything is functioning except for the retention - and

wouldn't want to risk sacrificing my present QOL by radical surgery.

Happy holidays all! Piers

[Guest guest]

Almost a yr ago I started here asking questions and getting very

helpful answers..Wanted to fill you all in on whats been going on and

if anyone has questions concerning what my husband has been thru ...ASK

Original PSA 274 in Feb/Mar 2006 Mar.. advanced aggressive PC with

Mets....started out on Lupron Depot and casedex....first injection

caused severe pain for several days..May....PsA down to 5.6 and to

stop casedex.. June..lung colapsed..

nothing to do with PC and has healed now. .July..changed to

Eligard ..very emotional

July PSA 6.8(going up)went back on casedex..daily

Oct... PSA 39..

Nov PSA 87 Planning session for radiation...10 sessions..

Put on pain patches

Getting new bone scan and other scans on the 2nd and next doc

appointment on the 9th..Previously have discussd Chemo clinical

trial...but cannot start(already signed papers) until its been 28 days

since last radiation treatment.... The radiation helped so much with

his severe pain .Just wish they would have done it months ago..So as

you all can see. its been a rough year but thankful for what we have,

and looking forward to a great new year..Happy New year to you all

[Guest guest]

e,

Thanks for the advice. I don't particularly care for the numbers game

myself, but it does help me make decisions after some research on the

subject. My first thoughts after finding I had positive margins were of

radiation as the next step (and probably with Hormone Treatments).

On my appointment last Friday, my urologist (surgeon) mentioned the

radiology as not a good option because of already having urinary

inconstinance from the surgery. He said radiation at this point may keep

me wearing pads for a long time to come, if not for the rest of my life.

As that being said, I personally have not ruled out any options. I'm

still asking questions, and researching the web. I have an appointment

Tuesday with my urologist (closer to home). And I'm considering making

an appointment with an onocoligist in my area to get their insight.

I would like to hear from anyone that has had radical prostectomy, then

had radiology afterwards, to find out how they are managing. What type

of problems they have encountered, and if they are still having

problems.

Jack

>

> Phil:

> Did your doctor mention external radiation? I believe this is a

> pretty standard protocol when they " think " they didn't get it all.

> Often used with hormone treatment before and after. From what I have

> read the opportunity for success is pretty high with this protocol.

> A minor rant: I HATE when a doctor says " chances of (whatever) are

> 50/50 " . In most cases it is just a cop out. A way of saying no slam

> dunk here, might not work, an easy way of saying no guaranty. I have

no

> problem accepting a treatment as not being 100% effective. But

> puleeeeze don't give me an arbitrary number that may or may not apply

> to my specific set of circumstances. There are lots of studies out

> there where you can cull information about groups of patients in

> situation situations to your own. And arrive at your own odds. I feel

> this is vitally important to arriving at a treatment decision. That

> said, my primary oncologist has been great. He never does the number

> thing. When I question the chance of success, he is very

> straightforward. He quantifies the odds with answers like, " With this

> course of treatment your chance of cure is very good " . When I push him

> a little further I will get something like, " In your case there is a

> much better chance of this working than not working " . I guess what I'm

> saying is, " Docs, don't give me arbitrary numbers about my chances of

> cure or survival " . Rant over.

> Cheers

> e

>