Whoa, Suzanne .....was stats, random questions

[Guest guest]

Hi Suzanne,

As

said, your latest mails came through while I slept the night away down here in Australia. I am

sorry that was the case as I may have been able to respond earlier and calm some

of your fears. And incidentally, there is never any need to apologize - you

say <snip> Sorry if that sounds like an ignorant

question. <snip> . There are no ignorant questions here (although

there may sometimes be ignorant answers <grin> ) – we all knew nothing

about the disease, the prostate, what a PSA was, who Gleason was when we were

diagnosed – we all had to learn and the best way to do that is to ask

questions.

Dealing with the question of the bone scan

– or lack of bone scan first. You say: <snip> Do you think he

should immediately get the scan done? Or do you think it would be ok to

wait until his checkup in Oct? I am thinking NOW, but maybe I'm in panic

mode. <snip>

Although a bone scan is usually done as

part of the work up on diagnosis it is in fact considered by knowledgeable

doctors as a waste of time (and money) in most cases because the chances of the

disease having metastasized to the bones is so negligible in ‘normal’

diagnoses. Here is Dr Strum, M.D. FACP, Medical Oncologist who has

specialized strictly in Prostate Cancer for the past twenty-three years, on

the subject:

" The medical literature points out

that bone scanning and CT scanning are NOT needed in presentations with a

Gleason score less than 7 and a PSA less than 10. The chance of finding a bone

scan abnormality in such a setting is negligible. The same for the CT

scans. Together, this equates with about $600 million dollars EACH YEAR in the USA

alone. That money could pay for a lot of food for starving people

or for medications for those lacking funds. Is anybody home? "

You said that your husband’s PSA was

7 and his Gleason Score was 6, so he certainly is within the parameters of what

Dr Strum has to say here, There are other studies that demonstrate that the

tumour has to achieve a critical mass – one study suggest 20 gm before it

takes off and whilst you do not have all the details you should have, it seems

unlikely from the way you tell your story that the disease has spread to the

bones. I am certainly NOT saying that you shouldn’t discuss your concerns

with your doctors, but I believe you should not feel panicked about it because

the probability seems very remote.

So….back to some of the other

issues. Taking first the questions you posed in response to my first mail to

you:

1. <snip> You say it's doubtful that

he is " ok " b/c it takes from 3-5 yrs to recover from the process of

diagnosis and treatment. How do you mean? Mentally/psychologically

or do you mean it takes that long to be considered " cancer free " ?

<snip>

There are both psychological and

physiological aspects to diagnosis and treatment of prostate cancer. What I

have to say here is based on my experiences over the past 10 years dealing with

hundreds (perhaps thousands now) of men who have visited my sites, who I have

met on Lists like these and who I have spoken to in person with my support

groups. I talk in generalities because by and large they are true, but of

course every person is an individual and so are their individual reactions.

The word “Cancer” is truly a

dreadful one. The first reaction on hearing it applied to oneself is “Oh

**** I’m going to die!” Shortly followed by “What can I

do.” It is this sudden exposure to the possibility of death –

probably painful and probably soon – that really hits home. It is bad

enough for older men, but it is even worse for younger men. I say that because

older men will often have had some warnings of mortality along the way –

a heart problem or some other health issue, but young men, in the prime of life

don’t have those concerns. This shock takes some time to recover from,

even if treatment is undertaken because there is so much

‘background’ information emphasizing cancer and death as being interlinked.

This creates an enormous emotional barrier to any facts getting through –

emotion trumps logic every time and so even when people start to learn more

about PCa and the fact that in so many cases (not all of course!!) the man will

NOT die from the disease, they still feel that this won’t apply to them

and they will be among the victims.

This emotionally based fear would be worse

in your husband’s case because the statement is often made that prostate

cancer is more aggressive in younger men. There is no scientific evidence to

back up this view, but I’ll bet he read or heard it somewhere. It

is also true that if the subject of cancer ever comes up, people are inclined

to refer to some tragic case involving the death of a relative or friend

– very rarely is there any ‘good news’ about the disease. So

there is a constant reinforcement about the probability of death even, as I

say, if there are no scientific grounds for this.

So much for the basic psychological

issues. In your husband’s case there are many more that you have

identified <snip> He is under so much stress, not even related to

his health, w/ his job and his 14 y/o daughter, that I don’t think he can

take one more thing. <snip> I’d suggest that another child at this

stage might be the one more thing he can’t take!

And on the physical side, we sometimes

tend to forget what a major procedure a prostatectomy is, even if the robotic

laparoscopic approach lessens the physical trauma considerably. But even with

these modern surgical procedures there is a tremendous amount of healing to do

– with a good deal of concern about the side effects. One of the side

effects that is rarely discussed relates to the time the patient is under

anesthesia. Major operations, where the patient is out for hours can cause

short term memory problems. These are not usually long lasting and full memory

function is restored within a year usually, but this phenomenon is rarely

mentioned to patients and can cause a good deal of concern. What is of more

concern of course to men who have prostate related treatment is the loss of

sexual function or at best the reduction in this function. No matter what

is said, there is always some reduction in functionality. Many men will recover

sufficiently to satisfy themselves and their partners, especially with the use

of drugs or devices, but it simply isn’t the same as it was – and

never will be. To most men this is an enormous problem and it will literally

take years for some to come to grips with the issue.

Another issue, which may have some

reference to your position is the question of odd pains and the concerns they

raise. Many men were foolish enough to play hard physical sports or be involved

in physically demanding activities in their youth – I am no exception,

having played rugby union until forced to stop because of injury. The damage

done is mostly forgotten but tends to raise its head as men age or when they

start focusing on themselves more than normally. In my case about three months

after diagnosis, my lower back really started aching. My first reaction was

that the disease had spread to the bone – the pelvic girdle being a favorite

target of the disease. It really worried me until the light bulb lit and I recalled

that since the age of 22, some 30 years earlier I had precisely the same pain and

had had it intermittently all my life, as it still does now. The same went for

a sudden pain in the groin some months later – was that the cancer in the

lymph nodes? No. it was the same old pain I’d first noticed 20 years ago.

In your husband’s case, with all the tension in the air I wouldn’t

be surprised if the pain in his neck was a combination of this accumulated

tension plus possibly an old injury

So taking all these aspects into account,

I and some of my PCa pals have come to the conclusion that it probably takes a

minimum of 3 years for the most well balanced man with reasonable health to

deal with all the issues and be able to get on with his life – it may

take some men a year or two longer – some never recover fully and spend

the rest of their life mourning their loss. I’m not taking a shot at Everard

when I say that I don’t agree with his approach to ocunselling, which is

so typical of the way most of us men go about dealing with emotional issues. If

you have a broken leg, you can set it yourself; if you have a rotten tooth, you

can remove it yourself – but in either case it is a good deal more comfortable,

safer and easier to get a professional who knows what they are doing to help

you out. Someone with a mind or psyche that has taken a battering has, in

my opinion, a better chance of a quick and complete recovery than someone who

battles the demons by himself.

<snip>

… can someone w/ prostate cancer ever be considered

cancer-free? When my husband refers to his " status " ( I

guess you'd call it status), does he say he HAS pc, that he HAD pc, or

what? <snip>

These are good questions. In the

interchange between patient and doctor many misunderstandings arise. Doctors

use terms that patients don’t always understand – sometimes because

they are used in a different context – and patients sometimes only hear

what they want or hope or dread to hear. So men will sometimes proclaim that

they are cured of PCa after they have had a procedure. That may be the case,

but we’d need to agree what the word ‘cured’ means. If it

means that he will not die from PCa, that is most likely the case since very

few men do die from the disease, at least in the 10 – 15 years after

diagnosis. Does ‘cured’ mean that there is no chance of progression

of the disease? No it doesn’t. Quite a high percentage of all men

who undergo treatment will show signs of progression as the years go by. The

primary measure of this possibility is the PSA test which is usually taking

quarterly in the first 12 months after treatment and then at least annually

thereafter provided there is no significant change, for the rest of the man’s

life. Probably the correct description for a man diagnosed with PCa, treated

and with no sign of progression would be to say that he was in remission, not

cancer-free or cured.

I don’t know if all this waffle

helps, Suzanne. I hope it does. But don’t hesitate to ask away with any

questions on issues that are not clear.

All the best,

Terry

Herbert in Melbourne, Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4

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 suzanne

Sent: 27 August 2006 05:03 AM

To: ProstateCancerSupport

Subject: RE: stats, random questions

He had a PSA done b/c his dad found out that he had

prostate cancer. It was

like 6.5 and a week later, when he got in w/ a urologist (his pcp did the

1st test), it was about 7. He then had biopsies, which showed cancer. 2

mo's later, he had robotic surgery. No dr suggested doing any kind of

scans.

Re:

stats, random questions

> - I find it hard to believe your doctor never did bone or

> CT scans? You need to ask how they can determine if the PC has spread

> without conducting these tests? Demand an answer and go find another

> doctor if you're not happy with what they tell you.

I don't see any to know he has prostate cancer without the tests. I was

given a CT scan because I was having pain. They were looking for stones but

found an enlarged prostate. Then I was given 2 PSA tests a month apart &

the

results were 5.4 & 7.5. Then they went for a biopsy which confirmed the PC.

---

Manley

Prostate Cancer Patient

Albuquerque, New Mexico 87121

I have advanced prostate Cancer and I am convinced that the Lord Jesus

Christ will heal me in a big way to show his love to me & all those

involved

with my medical Care.

Jim Manley's Photoshop Elements Page

http://www.geocities.com/jim_p_manley/index.html

Jim Manley's Photo Retouching Page

http://web.mac.com/jamespmanley

There are just two rules for this group

1 No Spam

2 Be kind to others

Please recognise that Prostate Cancerhas different guises and needs

different levels of treatment and in some cases no treatment at all. Some

men even with all options offered chose radical options that you would not

choose. We only ask that people be informed before choice is made, we cannot

and should not tell other members what to do, other than look at other

options.

Try to delete old material that is no longer applying when clicking reply

Try to change the title if the content requires it