deciding not to treat pc
lindfield
Biopsy shows that cancer has spread to the wall of the bladder. He
doesn't want to take any treatment, figuring that nothing will cure
the cancer & that his quality of life is important. Has anyone known
anyone else who has made this decision? What happened? My father has
seen so many friends suffer terribly from cancer treatment.
Ed Friedman
There are many people here who can tell you horror stories of how
terrible untreated prostate cancer is. However, there is no reason for
your father to give up hope. Have him check out the results that Dr.
Leibowitz has obtained using intermittent androgen deprivation followed
by high testosterone plus Proscar at:
http://www.compassionateoncology.org/pdfs/TRTcase_reports_03_07.pdf
Ed Friedman
Sue Mullen
My husband is 65 yrs old, his PSA was 7.9, his biopsy showed G9 on all
12 samples. He was told his PCa was very aggressive and the cancer
extended to the neck of his bladder. He is taking hormone shots, has
just finished his 44 radiation treatments on tuesday and his doctors are
very optimistic that he will be fine.
While he was going for daily radiation treatments, he was still working
full time, just leaving an hour or so early to go for his treatments. He
did have side effects from the radiation, fatigue, bowel and urinary
issues, but the did not stop him from working. From all we have been
told, these side effects will go away in the near future.
We also have a friend who is in his late 70s, he had prostate cancer and
the cancer was also in his bladder. His checkups are now fine and cancer
free.
I hope your father will talk with his doctors and reconsider his options.
sue - wife of Kevin
Bonehead in NE
Sorry about your father's diagnosis. It's a hard thing
to hear. I suspect that many will decline treatment soon
after the diagnosis, but most will take a good look at
their options and might change their minds.
About 15 years ago, my cousin, age 67 at the time, had a
Gleason 9. I don't know his PSA at the time, but he
opted for surgery to have prostate and anything else
they could get out. I watched him go through that time
and when my diagnosis came in this year - with much
better numbers - I talked a lot to his wife, who was
with him every inch of the way. She told me that the
surgeon said to her afterwards that there was little
hope that he'd have much time after the operation.
He had a couple years, pretty miserable by the standard
of life he chose for himself. They did get to take a
nice trip to the Orient, which he enjoyed. But in the
end, the cancer came back and on the last weekend that
he could possibly get out of bed, he took his life.
At the time, I thought that there's no way I'd have the
operation if I had his prognosis. There's no telling how
much time he'd have had, but I suspect that it might
have been a little better if he'd not had the surgery.
Until the surgery, he was fine and functioning.
Without treatment, there's probably some good days ahead
but things will get bad eventually. There are some
really knowledgeable people here and no doubt you will
get some good advice and experiences from both sides.
I'm new to this horror and it's not in my nature to fret
about things. I'm 68 and I have had a wonderful,
pain-free life so far. I went through with the operation
because my prostate cancer was caught early on. AND...
treatment has come a long way since my cousin's trouble.
I've pretty much decided how much I will go through.
I've seen too much.
You should respect your father's decision whatever it
is. Just make sure he gets the best medical advice
possible from the best people to give it. Keep him away
from the crackpots and loons with their "miracle cures".
Prop him up and keep working on him to go for treatment.
But if he chooses not to, take him on a trip to the
Orient, Disney World or wherever, and give him all the
ice cream and hugs he wants. That's the advice I'd hope
someone would give my daughter and son.
Steve Kramer
news:ef153e5c-b049-48fb...@l42g2000hsc.googlegroups.com...
I'm not going to soft-soap it, Alex; a G9 with a 78 PSA is about as bad as
it gets before it starts getting really bad. That said, I've been on this
newsgroup a number of years and have since seen 850 or more cancer victims
come through it. Of these, 25 had a PSA that was higher, including one that
was 4900! I'll tell you what I know of several who had high PSAs and stayed
around to talk about it.
I don't know how high GeoffH's PSA was at diagnosis, but it was high and he
was 62. He had surgery and is on androgen deprivation therapy (ADT). Last
month he reported he reported his PSA was at 0.50.
dave481 had a 39.8 PSA and 10 Gleason (the worst) at 54 in FEB 2006. He had
surgery and when they found out how bad his cancer was, they put him on ADT.
In March, his PSA was 1.2.
Ben had a 43 PSA at 65 in FEB 2004. He had radiation and ADT and when I
last heard from him last year, his PSA was 0.7.
Dick Winters (no relation that I know of) had a 45.5 PSA and Gleason 8 at 67
in 1997. He had surgery. Eventually he went on ADT. I last heard from him
in March, his PSA was down to 0.1.
Billnjackie had a 46.5 PSA and G9 in 2002 at 55. We last heard from him
last year, but I forget what his PSA was. I know it had be down to 0.45
before that.
Bob Chady had a 55 PSA in 2000, including bladder cancer. He was still
alive a couple of years ago.
Bob C, you may have just read, is still kicking with a 0.040. He was dx'd
in 2000 with a 55 PSA at 55.
DP was 49 when he found he had a 59.2 PSA and G9 in 1999. Last I heard in
2006, he was at 0.10.
Dora Crawford's husband was 82 with a 66.5 PSA and G10! Henry lived two
more years before succumbing.
kherav's father, at 59, had a 100 PSA and three years later was finding
cancer in his bones.
Hugh Kearnley was 55 when he found he had a 140 PSA in 2006. He knocked it
down to 0.90, but sadly died of a heart attack.
Martin Howard is the only man in this group that did not get treatment. He
was 63 when dx'd with a 145 PSA and a G9. He tried alternative therapies
and died about a year later.
In May, Chris McBorner told us of his cancer since 2005, including his 176
PSA which is now down to 0.05
John Preston was dx'd at 48 in 2003 with a 635 PSA. He fought hard an long
and left us in OCT of last year.
John Nickolls was 52 with a 704 PSA in 2001 and died at the end of last
year.
Jim Quinn and Curtis Miller both lasted two years with PSAs over 700.
Robert Young was 61 and a former Marine when he was told in 1999 that he had
a PSA of 1000! He went on to found the Prostate Cancer Networking Group of
Greater Cincinnati (http://pcngcincinnati.org/) and created the
authoritative website at the time called www.Phoenix5.org. He died in 2003,
but if he were alive today, I think he'd tell your father his last four
years were worth living.
Maynard Berkowitz was 68 in 1998 when he found he had a 1614 PSA and G9. He
died in 2004.
And finally, William 243 was 50 in OCT 2000. He already had bone metastases
and his PSA was 4,900!!! "When did he die?", you ask? "Not yet" he would
answer. We communicated last in APR 2008!
Tell your father, please, that all these men except Martin were treated with
ADT. Some later had chemotherapy. I have been on ADT since 2002. I am 53
and I work fulltime in a fairly active job that takes me into the field
about 50% of my day. My office is on the second floor of a 100-year-old
building without an elevator and I walk those 21 steps 10 times a day or
more. I walk 2.5 to 3.4 miles a day, 3-5 days every week. I get down on
the ground and wrestle with my five grandchildren. I have had terminal
cancer for almost 8 years and I am loving life!
Alan Meyer
lindfield,
I think Steve's posting pretty clearly shows that men who get
treatment can sometimes last a long time.
I don't know how soon your Dad will develop symptoms. It may be
a few years, or it may be sooner. However, once symptoms appear,
quality of life will degrade pretty quickly. It eventually gets
truly nasty.
If I were him I would ask for hormone therapy. It will hold the
cancer in check for some period of time. How long depends on the
particulars of his cancer. Some cancers turn out to be highly
hormone sensitive and the patients get great remissions from
hormone therapy. Some don't. He won't know until he tries it.
As far as QOL is concerned, that too depends on the man. He will
almost certainly lose his libido, and he will find some loss of
energy though sex may not become impossible at all if he really
tries. I think (judging from my own experience) that hormone
therapy doesn't destroy the ability to have sex, only the desire.
If you care enough and try hard enough, things can happen that
you didn't expect.
He'll probably have some loss of bone density and some
"hot flushes". However both of those are treatable and can be
dealt with pretty straightforwardly.
Beyond that, what happens is up to him. If he exercises
regularly and maybe gets a little extra sleep, he'll find he can
do most anything he could do before. He'll be able to play golf
or walk or swim or do other outdoor activities that 67 year old
men can do. He'll be able to work. He'll be able to enjoy
friends, family, books, music, movies, food, vacations, travel,
and pretty much anything else he ever enjoyed.
He might get a few extra months out of it. Or he might get a
few, or more than a few, extra years. He might also live long
enough that he'll be able to benefit from some of the new
treatments that are in trials now and are showing promise like
immune system boosters, targeted chemotherapies that only hit the
cancer, not the rest of the body, and others.
It's always possible to give up and die, but it's not always
possible to live. Your Dad may have a chance to live. If I were
him, I'd take that chance.
Also, if I were him I wouldn't wait. The more the cancer
spreads, the more work the treatments have to do to help. He
might get more benefit from hormone therapy now than if he waits
for a year and gets it only after the pains kick in.
I suggest that you print out the replies you've gotten to your
posting and take them to your Dad. You might also look over some
of the other postings you've seen here, like KH's reports on
treatments for his advanced, metastatic, symptomatic cancer.
KH, who has taken some serious radiation and chemotherapy
treatments, much harsher than hormone therapy, wrote:
"I give the back of my hand to most side effects."
He's getting treatment in Baltimore at Johns Hopkins. He wrote:
"... Every time I go to Baltimore, I see the really sick,
it's about 1 in 3. They're pushed in, slumped in
wheelchairs."
"We're a long way from that. I walk in after driving 60
miles, short hair like boot camp, black T-shirt, standing as
straight as I can, wrap around sun glasses, giving the
power-fist to the phlebotomists."
Best of luck to your Dad and all of your family.
Alan
lindfield
Thank you all so much. This has been very helpful - and please, anyone
else who can, write. It is so hard to get information. I'm going to do
my best to get him to start hormone therapy quickly - his doctor
prescribed it. I'll keep posting on his progress in the hope that this
might help another person.
Again, I am so grateful to you all.
safire
>
> I'm going to do
> my best to get him to start hormone therapy quickly - his doctor
> prescribed it.
There is substantial overtreatment of prostate cancer in the U.S.
according to multiple studies. However, none of those studies suggest
that a patient with a Gleason score > 6 and aged 67 should not be
treated. On the other hand, the numbers produced by Herr Kramer, however
unscientific and anecdotal, strongly suggest treatment may be
beneficial. Does he show any symptoms? How has the cancer discovered?
lindfield
Thank you for these questions, which I have asked my self.
His only symptoms were getting up all night (7-8 times) for about 6
months & then, of course, being v tired from lack of sleep.
At the moment, he only gets up 3-4 times(warmer weather?) & is
sleeping better BUT since the biopsy he has been really exhausted
during the day.
That's it. Is it normal to have no other symptoms at this stage? No
blood in the urine, no pain.
Just waiting for these replies, which are fantastic.
lindfield
PS
the cancer was discovered because he went to a urologist for the
frequent urination problem - large prostate found (later measured at
46 grams - how abnormal is that? I can't find anything through
google), then scan then biopsy.
Prescription: hormone treatment (my father had already said that he
didn't want prostatectomy, radiation or chimio).
Please let me have any ideas on this.
H F
> My father, aged 67, has just been diagnosed Gleason 9, with psa 78.
> Biopsy shows that cancer has spread to the wall of the bladder. He
> doesn't want to take any treatment, figuring that nothing will cure
>
I am rather new to all this but at 67 I am cancer free at the moment
with PSA since RP of <0.007. I had a Gleason of 9 with lymph node
involvement and extra capsular penetration. I have taken the approach
that I am going to fight this thing and I am finding that part of my
quality of life is coming from the decision to fight. I know that I
will probably not ultimately win - but I want my family and my
grandchildren to see that their "papa" went after the obstacles that
life threw in his way. I am enrolled in a Clinical Trial with
treatment (ADT + Chemo) to begin when PSA reaches 0.4. By trial
design, if that doesn't happen by the end of 2010, the trial
terminates for me. So far it has been 15 months since RP.
Part of my fight is taking trips around the country with my family. We
have seen some marvelous vistas! It gives us time together and it
prooves to me that I can do it!
I know that each of us must make his own decision about our options
for handling this disease. Hopefully, each decision we make can
eventually be understood and respected and accepted by those around
us.
One of the more liberating thoughts for me is to realize that there is
a difference between being cured and being whole. I have grown to
understand that it is possible to be whole without being cured.
ron
> the cancer was discovered because he went to a urologist for the
> frequent urination problem - large prostate found (later measured at
> 46 grams - how abnormal is that? I can't find anything through
> google), then scan then biopsy.
> Prescription: hormone treatment (my father had already said that he
> didn't want prostatectomy, radiation or chimio).
> Please let me have any ideas on this.
It is a very special thing you are doing, helping your dad like this.
You ask about prostate weight, actually, your dad's is pretty much
average. One study found the average size to be 46.8 cm3 (median 39.3
cm3). Since tissue is mostly water, a density of 1.0 is used which
makes cm3 interchangeable with grams.
One other point, the hormone therapy that has been discussed above, is
typically referred to as ADT. It involves some combination of drugs
such as lupron, casodex and proscar /avodart. As Alan pointed out,
the side effects caused by these drugs vary dramatically from man to
man. It will take several months to gauge an individusl's reaction to
them. Because these drugs do produce a dramatic deterioration in
quality of life for some men, and because it is important to closely
follow the PSA, testosterone and DHT response to these medications, a
good doc will initially administer monthly (rather than a 3 month)
injections and monitor the patients response on a monthly basis until
hormonal levels stabilize. If there is an insufficent response and /
or the side effects are too difficult to manage, then further shots
can be discontinued and other androgen suppressants, such as estrogen,
can be tried.
Let me just add in passing that estrogen was widely used in the pre-
Lupron era with success. Its use was discontinued because of
cardiovascular events. New methods of administration (transdermal,
rather than oral) bypass the organs which caused the cardiac events.
Many docs now use it successfully to hormonally treat PCa. It is
much, much cheaper than the other medications, has a few side effects
of its own (breast enlargement), but produces none of the severe side
effects of the other medications. In fact it actually improves bone
density and mental acuity. Unfortuneately, many docs remain
uninformed of the advances and the drug companies have no interest in
promoting cheap alternatives. Best wishes and good health to you and
your dad...ron
Steve Jordan
(snip)
> One other point, the hormone therapy that has been discussed above, is
> typically referred to as ADT. It involves some combination of drugs
> such as lupron,
Or Zoladex or Trelstar.
casodex and proscar /avodart. As Alan pointed out,
> the side effects caused by these drugs vary dramatically from man to
> man. It will take several months to gauge an individusl's reaction to
> them. Because these drugs do produce a dramatic deterioration in
> quality of life for some men, and because it is important to closely
> follow the PSA, testosterone and DHT response to these medications, a
> good doc will initially administer monthly (rather than a 3 month)
> injections and monitor the patients response on a monthly basis until
> hormonal levels stabilize.
This touches upon a subject that I bring up frequently: urologists and
oncologists.
With rare exceptions, urologists are essentially surgeons. If surgery is
not appropriate or undesirable as in the present case, the best resource
for treatment (tx) is a genuine cancer specialist, a medical oncologist.
The regimen ron sets forth is exactly what med oncs are trained to perform.
I recommend seeking advice from a med onc, especially one who is
well-trained in tx of PCa. A listing of some PCa specialists will be
found via this portal on the authoritative website of the Prostate
Cancer Research Institute:
http://prostate-cancer.org/resource/find-a-physician.html
Another resource is the Physician to Patient site of Prostate Pointers,
a service of the PCa support group Us Too International. For
instructions re: signing on and preparing a PCa Digest, start here:
http://www.prostatepointers.org/mlist/mlist.html A response can be
expected within a few days from a PCa specialist. Excellent information
and guidance from some of the best, free from medics who are dedicated
to helping.
(snip)
Regards,
Steve J
"I believe it is a mistake for many urologists to be
involved in the endocrine therapy of prostate cancer. Let me state why.
Urologists are surgeons and many times surgeons rush to a treatment without
really understanding what they are doing. The old joke in medical school
was that surgeons do everything and know nothing, that internists know
everything and do nothing, that psychiatrists know nothing and do nothing
and finally that pathologists know everything and do everything -- but it is
too late."
-- Stephen B. Strum, MD
Medical Oncologist
PCa Specialist
lindfield
> expected within a few days from a PCa specialist. Excellent information
> and guidance from some of the best, free from medics who are dedicated
> to helping.
>
> (snip)
>
> Regards,
>
> Steve J
>
> "I believe it is a mistake for many urologists to be
> involved in the endocrine therapy of prostate cancer. Let me state why.
> Urologists are surgeons and many times surgeons rush to a treatment without
> really understanding what they are doing. The old joke in medical school
> was that surgeons do everything and know nothing, that internists know
> everything and do nothing, that psychiatrists know nothing and do nothing
> and finally that pathologists know everything and do everything -- but it is
> too late."
> -- Stephen B. Strum, MD
> Medical Oncologist
> PCa Specialist
What great advice - HF, I am beginning to understand what you are
saying. This seems crazy but with all the love and attention we are
giving my father he is blooming with happiness! He is more calm and at
peace with himself than I've seen him for years. Now I just want to
make sure he takes the right decisions for his future.
Ron, your advice about estrogen, with none of the severe side effects
of the other medications could help convince him to act.
And Steve, thank heavens you reminded me of this - of course he needs
an oncologist - I've been too upset even to see this obvious fact -
and yes, his doctor is a urologist! I've already convinced him to see
an oncologist fast.
You have all been amazing. Thank you again.
Steve Kramer
I'm going to do
my best to get him to start hormone therapy quickly - his doctor
prescribed it.
==> The other point I neglected is that he can always stop ADT if it gets
to be too bad. Same thing with chemo down the road.
--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Illegitimati non carborundum
Steve Kramer
At the moment, he only gets up 3-4 times(warmer weather?) & is
sleeping better BUT since the biopsy he has been really exhausted
during the day.
==> It is quite common to become depressed upon diagnosis. Almost everyone
here, if they weren't already depressed, got hit with a mild to severe dose
of depression. With depression often comes fatigue and or tiredness. I
think that is likely what he is experiencing.
Is it normal to have no other symptoms at this stage?
==> Yes! Thanks to PSA many, if not most men are asymptomatic upon
diagnosis. Of those who do have sypmtoms, I believe your father's is the
most prevelant. Personally, I've not had a single PCa symptom in 8 years.
J
> "lindfield" <alexia...@gmail.com> wrote in message
> news:ef153e5c-b049-48fb...@l42g2000hsc.googlegroups.com...
> > My father, aged 67, has just been diagnosed Gleason 9, with psa 78.
> > Biopsy shows that cancer has spread to the wall of the bladder. He
> > doesn't want to take any treatment, figuring that nothing will cure
> > the cancer & that his quality of life is important. Has anyone known
> > anyone else who has made this decision? What happened? My father has
> > seen so many friends suffer terribly from cancer treatment.
>
> I'm not going to soft-soap it, Alex; a G9 with a 78 PSA is about as bad as
> it gets before it starts getting really bad. That said, I've been on this
> newsgroup a number of years and have since seen 850 or more cancer victims
> come through it. Of these, 25 had a PSA that was higher, including one that
> was 4900! I'll tell you what I know of several who had high PSAs and stayed
> around to talk about it.
> [..] Martin Howard is the only man in this group that did not get treatment.
> He
> was 63 when dx'd with a 145 PSA and a G9. He tried alternative therapies
> and died about a year later.
>
> [...]Tell your father, please, that all these men except Martin were treated
> with
> ADT. Some later had chemotherapy. I have been on ADT since 2002. I am 53
> and I work fulltime in a fairly active job that takes me into the field
> about 50% of my day. My office is on the second floor of a 100-year-old
> building without an elevator and I walk those 21 steps 10 times a day or
> more. I walk 2.5 to 3.4 miles a day, 3-5 days every week. I get down on
> the ground and wrestle with my five grandchildren. I have had terminal
> cancer for almost 8 years and I am loving life!
We're all terminal. It's a long way from age 53 to age 68. Some 70'ish year olds
are just as happy and healthy as 50 year olds and others are tired and have
other health issues. My mother was one of them at 68 with a diagnosis of lung
cancer. She'd been in chronic pain for many years. Her quality of life had not
been good. She begged the doctors not to tell the family, for fear we'd try to
convince her to take treatments.
While sad that I did not get to see her before she died (lived far away), I
respect her decision - understand completely.
How many of the 850, over age 65, have not since reported in, (in other words,
lost to followups) ?
Martin seems to be the closest of the ones you quoted - to Alex's husband (age,
PSA and Gleason).
The PSA improvements you quoted do not speak to quality of life issues.
I do not know what happens if urine starts flooding into the pelvic cavity.
It seems to me that there would be loss of quality of life and dignity.
Prostates are sometimes removed during bladder cancer surgery.
These are some bladder cancer surgeries.
http://www.cancerhelp.org.uk/help/default.asp?page=3169
There are probably other variations of surgeries available, in the US
If I were Alex, I would offer to go with him to see a surgeon who does prostate
and bladder surgeries.
Urologist? And assure her father there will not be any pressure put on him.
Ask the surgeon to explain each hormone treatment; pros and cons.
Explain each type of surgery which might be done; pros and cons. (and check if
he is fit for surgery).
(while Alex takes notes and/or tapes the discussion).
He (or she) may or may not have leaflets explaining the pros and cons of various
radiation treatments.
(for palliation, if he does not want "curative" treatments).
Then I would suggest they ask where's the closest (local) bladder cancer support
group.
Where they can go to ask people there to describe their surgeries and the pros
and cons.
Or let him go alone if he would be more comfortable for asking questions.
Then allow him some time to mull over the information, then go discuss his
views and decisions with his primary care doctor.
They'll know if he decides on some surgery.
If he does not share on the rest, respect his decisions and privacy.
J
Steve Kramer
Prescription: hormone treatment (my father had already said that he
didn't want prostatectomy, radiation or chimio).
Please let me have any ideas on this.
==> Your father is beyond the prostatectomy and/or radiation stage because
the cancer is outside the prostate and in the bladder. Very few doctors
consider these treatments when the cancer is known to be outside the
prostate.
Hormone Treatment is usually the next step. It will temporarily give his
cancer nothing to feed on. This "temporary" condition can last for years.
There are also many possible (probable) side effects would should be
reviewed, but not feared. You can find them with the following search in
Google: "androgen deprivation therapy" +"side effects". The most important
thing to remember is not everyone gets all the side effects, the strength of
each side effect is different in every man, and many, if not most, can be
mitigated with other medication or habits.
I would give the same advise re chemo. Many side effects probable and many
can be mitigated. Personally, having watched my father die of this hideous
disease while living with the effects of ADT and chemo, I swore both off
long before I was diagnosed. However, in the intervening 26 years, I found
ADT and chemo have improved drastically.
J
>
> Thank you for these questions, which I have asked my self.
> His only symptoms were getting up all night (7-8 times) for about 6
> months & then, of course, being v tired from lack of sleep.
> At the moment, he only gets up 3-4 times(warmer weather?) & is
> sleeping better BUT since the biopsy he has been really exhausted
> during the day.
> That's it. Is it normal to have no other symptoms at this stage? No
> blood in the urine, no pain.
There will be blood eventually, if he does not have surgery.
No wonder he's so tired (interrupted sleep and now the stress of the
diagnosis).
Advanced cancer can also cause fatigue.
J
Steve Kramer
news:486E7ECA...@execulink.com...
> Steve Kramer wrote:
>> I am 53
>> and I work fulltime in a fairly active job that takes me into the field
>> about 50% of my day. My office is on the second floor of a 100-year-old
>> building without an elevator and I walk those 21 steps 10 times a day or
>> more. I walk 2.5 to 3.4 miles a day, 3-5 days every week. I get down on
>> the ground and wrestle with my five grandchildren. I have had terminal
>> cancer for almost 8 years and I am loving life!
>
> We're all terminal. It's a long way from age 53 to age 68.
Thanks. I had almost forgotten that I'll never see 68....
> How many of the 850, over age 65, have not since reported in, (in other
> words,
> lost to followups) ?
I don't know exactly what your asking or the point you're trying to make.
Only about 600 of the 850 reported their ages. Of the 600, about 150 were,
at the time of their diagnosis, sixty-five or older. Of the 150, only about
30 have reported their progress within the last 12 months.
> Martin seems to be the closest of the ones you quoted - to Alex's husband
> (age,
> PSA and Gleason).
I showed a relationship of their PSAs/Gleasons to her father's. If I had a
database of thousands, maybe I could have shown her what all 68 year old
male whites from Bigner, Oklahoma have experienced with and without
treatment. But, it's hardly relevant.
> The PSA improvements you quoted do not speak to quality of life issues.
No, they don't. I don't know how to capture QOL criteria. Nor did I claim
to do so.
Sue Mullen
Steve Kramer wrote:
> "lindfield" <alexia...@gmail.com> wrote in message
> news:5a41b7ec-639d-4452...@d45g2000hsc.googlegroups.com...
>
> I'm going to do
> my best to get him to start hormone therapy quickly - his doctor
> prescribed it.
>
>
> ==> The other point I neglected is that he can always stop ADT if it gets
> to be too bad. Same thing with chemo down the road.
Also if one form of ADT causes too many side effects, he could try a
differnt one. Kevin was having very bad headaches and two weeks after
switching from Trelstar to Lupron, his headaches are back to normal for
him.
sue
Alan Meyer
> ... I am enrolled in a Clinical Trial with
> treatment (ADT + Chemo) to begin when PSA reaches 0.4. By trial
> design, if that doesn't happen by the end of 2010, the trial
> terminates for me.
HF,
I think there's a good chance that by the end of 2010 there
will be more consensus about the use of early chemo and chemo
with ADT. Assuming the trial is successful, and I think there
is some evidence that it is so far, you may well be able to
get this treatment outside of a clinical trial.
... So far it has been 15 months since RP.
Excellent results for a guy with Gleason 9 and all the rest.
> Part of my fight is taking trips around the country with my family. We
> have seen some marvelous vistas! It gives us time together and it
> prooves to me that I can do it!
> I know that each of us must make his own decision about our options
> for handling this disease. Hopefully, each decision we make can
> eventually be understood and respected and accepted by those around
> us.
> One of the more liberating thoughts for me is to realize that there is
> a difference between being cured and being whole. I have grown to
> understand that it is possible to be whole without being cured.
That is indeed a liberating thought. Well said.
Alan
El Woody
> "lindfield" <alexiastel...@gmail.com> wrote in message
> but if he were alive today, I think he'd tell your father his last four
> years were worth living.
>
> Maynard Berkowitz was 68 in 1998 when he found he had a 1614 PSA and G9. He
> died in 2004.
>
> And finally, William 243 was 50 in OCT 2000. He already had bone metastases
> and his PSA was 4,900!!! "When did he die?", you ask? "Not yet" he would
> answer. We communicated last in APR 2008!
>
> Tell your father, please, that all these men except Martin were treated with
> ADT. Some later had chemotherapy. I have been on ADT since 2002. I am 53
> and I work fulltime in a fairly active job that takes me into the field
> about 50% of my day. My office is on the second floor of a 100-year-old
> building without an elevator and I walk those 21 steps 10 times a day or
> more. I walk 2.5 to 3.4 miles a day, 3-5 days every week. I get down on
> the ground and wrestle with my five grandchildren. I have had terminal
> cancer for almost 8 years and I am loving life!
Steve - That was the most wonderful post. You gave real examples, real
names, real outcomes and real hope. If Lindfield can't thank you , I
will.Thanks.
Hey - I am doing the Philly Livestrong in August - 100 miles. Can I
put your name on my jersey or bike. I would be honored, you were a
great help to me last year. It is the least I can do.
lindfield
Steve (K), I didn't name you specifically but my heart-felt thankyou
was for you and everyone else who has taken so much time to write.
And when you write " I have had terminal cancer for almost 8 years
and I am loving life! " it gives me hope. Thank you for that, too.
Steve Kramer
news:b72097e4-2a3e-4f92...@c65g2000hsa.googlegroups.com...
Steve - That was the most wonderful post. You gave real examples, real
names, real outcomes and real hope. If Lindfield can't thank you , I
will.Thanks.
Hey - I am doing the Philly Livestrong in August - 100 miles. Can I
put your name on my jersey or bike. I would be honored, you were a
great help to me last year. It is the least I can do.
==> I would be, and am, honored.
J
> On 4 juil, 22:13, "Steve Kramer" <skra...@cinci.rr.com> wrote:
> > "J" <xnswex@nalid;"no> wrote in message
> >
> > > Steve Kramer wrote:
> > >> I am 53
> > >> and I work fulltime in a fairly active job that takes me into the field
> > >> about 50% of my day. My office is on the second floor of a 100-year-old
> > >> building without an elevator and I walk those 21 steps 10 times a day or
> > >> more. I walk 2.5 to 3.4 miles a day, 3-5 days every week. I get down on
> > >> the ground and wrestle with my five grandchildren. I have had terminal
> > >> cancer for almost 8 years and I am loving life!
> >
> > > We're all terminal. It's a long way from age 53 to age 68.
> [..]
> > > Martin seems to be the closest of the ones you quoted - to Alex's husband
> > > (age,
> > > PSA and Gleason).
> Steve wrote:
> > [..] Martin Howard is the only man in this group that did not get treatment.
> > He
> > was 63 when dx'd with a 145 PSA and a G9. He tried alternative therapies
> > and died about a year later.
> >
> > > The PSA improvements you quoted do not speak to quality of life issues.
> >
> > No, they don't.
>
> Steve (K), I didn't name you specifically but my heart-felt thankyou
> was for you and everyone else who has taken so much time to write.
> And when you write " I have had terminal cancer for almost 8 years
> and I am loving life! " it gives me hope. Thank you for that, too.
There's no comparison, at all, to your father's situation and Steve's.
Here's his info, from his signature (line)
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75
-------------------------------------------------------
N0MO
N0 means no lymph nodes involved, MO means no metastasis (ie no spread to other
organs).
Negative margins - has not spread outside of the prostate area.
Steve's Gleason is 7 (before and after surgery)
PSA was 16 before surgery.
Your father's Gleason is 9 - might be found to be higher, after the surgery and
pathology report.
Status lymph nodes: unknown until after the surgery
His PSA is 78
Your father's has spread to the wall of the bladder.
There's no point in comparing your father to someone so different.
Don't give your father false hope.
Go back with him to the urologist and discuss options, prognosis, what can be done
surgically.
If impotency is an issue with your father, he deserves to be heard.
Get your informatinn from the urologist. Please.
J
J
> Steve Kramer wrote:
>
> > "lindfield" <alexia...@gmail.com> wrote in message
>
> > > My father, aged 67, has just been diagnosed Gleason 9, with psa 78.
> > > Biopsy shows that cancer has spread to the wall of the bladder. He
> > > doesn't want to take any treatment, figuring that nothing will cure
> > > the cancer & that his quality of life is important. Has anyone known
> > > anyone else who has made this decision? What happened? My father has
> > > seen so many friends suffer terribly from cancer treatment.
> >
> > I'm not going to soft-soap it, Alex; a G9 with a 78 PSA is about as bad as
> > it gets before it starts getting really bad. That said, I've been on this
> > newsgroup a number of years and have since seen 850 or more cancer victims
> > come through it. Of these, 25 had a PSA that was higher, including one that
> > was 4900!
>
> How many of the 850, over age 65, have not since reported in, (in other words,
> lost to followups) ?
This question seems simple enough, Steve.
J
H F
contributing.............I probably speak for many following these
various topics in saying that the kind of support found here in the
stories all of us have to tell is truly amazing!
Steve Kramer
> lindfield wrote:
>> Steve (K), I didn't name you specifically but my heart-felt thankyou
>> was for you and everyone else who has taken so much time to write.
>> And when you write " I have had terminal cancer for almost 8 years
>> and I am loving life! " it gives me hope. Thank you for that, too.
>
> There's no comparison, at all, to your father's situation and Steve's.
What in Hell is wrong with you, J?!?!?!
I cannot say that I am an admirer or even that I agree with you very often,
but I don't recall you being a venomous viper. Did I say something to piss
you off? Or have you just decided you're going to go through the rest of
your life killing hope wherever you find it?
BTW, what right have you here? I mean, other than the 1st Amendment that is
often childishly cited in newsgroups, do you or a loved one have prostate
cancer? Are you a prostate cancer specialist. Or are you just another
interloping pest?
--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins