"Diagnosed 11/23/10 with PC. PSA 5.3, Gleason 6, Tic(Stage 2). Age 60. 2/14
cores w cancer found on right side. I live in Birmingham, AL."

Welcome.  Please tell us what you want us to call you.  You may now access the
Files and Links and Photos on the left of the page. At Gleason 6, you can take
the time you need to reach a decision.

Nearest proton center to you is Jacksonville FL  Go here:
http://www.floridaproton.org/

Guys, this treatment works, with minimum side effects.

Feel free to ask any questions.  Many folks here who can help.

Fuller

"Recently diagnosed with early Prostate Cancer. Presently on Watchful
Surveillance"

Please take the time to check out proton therapy, and ask any questions you
have.

Fuller

"...interested in all possible treatments "

Paris, we don't know your circumstance, but please feel free to ask any
questions here -- this group consists of guys and there spouses or significant
others who have "BEEN THERE DONE THAT"  We have few secrets from each other and
this is a free and open forum. You are free to tell us as much or as little as
you wish.

If you have already been diagnosed or treated, please be aware that proton
therapy has been used as a primary treatment or for recurrent PCa, depending on
the previous treatment.  If you have already had surgery, then you should know
that I  personally know several men who were treated with proton therapy when
the cancer came back after surgery.

Welcome and please review the Files and Links.

Fuller

Greetings to you newbies.

Fuller has turned you on and welcomed you in so let the Q. fly.

I am 70 y.o. and was protoned 3 years ago.  Start psa was 20.3.  It is
now less than .1 and has been for 18 months.  By the way I had no side
effects from protons.  The co-treatment of Lupron did cause the usual
side effects such as hot flashes.  But they subsided after the 6 months
Lupron wore off.

The more info you tell us about you situation the more help you will get.

Good luck and let us hear from you.
David d.

--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> "Recently diagnosed with early Prostate Cancer. Presently on Watchful
Surveillance"
>
> Please take the time to check out proton therapy, and ask any
questions you have.
>
> Fuller
>
Thanks Fuller for your recommendations for newly diagnosed Prostate
Cancer and the Summary update on Proton Beam Centers for Cancer
Treatment.
I was refereed to a Urologist from my Primary Care Internist after my
PSA  test came back at 4.5.
I am 69 years old and otherwise been blessed with good health overall.
The Urologist did a DRE and said he felt a small lump and recommended a
12 core Biopsy which I had done in his office in December 2010. He
called me back the following week and said my Gleason Grade was 2-3 and
score was 5. He than sent me to Rochester General Hospital for a CT Scan
and Bone Scan with a follow up visit one week later for the results. At
that visit I was told that the CT Scan and Bone Scan were negative and
that the Tumor was classified  as T1c- T2a which could go to T2b.
He wanted to do Robotic surgery using the DaVinci System at Rochester
General Hospital and set up an appointment as soon as possible. After
hearing about the possible side effect of impotance and incontinence, I
told him that I would like do do some more research and look at Active
Surveillance until I decided the best course of action. He didn't seem
to happy about my decision but its my body and surgery is surgery with
side effects. I got on the internet and found Yana which had a wealth of
information. Proton Therapy sounded like the best alternative to me if
my cancer got more aggressive. I  am going for another PSA test on March
15th 2011. I am reading Dr. Ornish's book Spectrum which is excellent on
Diet, exercise , meditation and Holistic methods to retard Cancer and
Tumor growth and staying healthy. Just ordered Bob Markini's book on You
Can Beat Prostate Cancer. I have a Medicare Advantage Plan and hope
Proton Therapy will be covered under it. NYS does not have any Proton
Centers and the nearest one to me would be at Mass General in Boston.
The Wilmont Cancer Center at the University of Rochester which is a
teaching hospital does not offer Proton Therapy but traditional
radiation treatments. It makes so much sense to me that Proton Therapy
would be the way to go because of its accuracy and protecting healthy
tissue surrounding the Prostate Gland
Thanks so much for your site Fuller and look forward to hearing from
you.
Regards,
Steve

----- Original Message -----
From: Steve
To: protoninfo@yahoogroups.com
Sent: Saturday, January 01, 2011 6:33 PM
Subject: [protoninfo] Re: Welcome new member Steve




--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> "Recently diagnosed with early Prostate Cancer. Presently on Watchful
Surveillance"
>
> Please take the time to check out proton therapy, and ask any
questions you have.
>
> Fuller
>
Thanks Fuller for your recommendations for newly diagnosed Prostate
Cancer and the Summary update on Proton Beam Centers for Cancer
Treatment.
I was refereed to a Urologist from my Primary Care Internist after my
PSA test came back at 4.5.
I am 69 years old and otherwise been blessed with good health overall.
The Urologist did a DRE and said he felt a small lump and recommended a
12 core Biopsy which I had done in his office in December 2010. He
called me back the following week and said my Gleason Grade was 2-3 and
score was 5. He than sent me to Rochester General Hospital for a CT Scan
and Bone Scan with a follow up visit one week later for the results. At
that visit I was told that the CT Scan and Bone Scan were negative and
that the Tumor was classified as T1c- T2a which could go to T2b.
He wanted to do Robotic surgery using the DaVinci System at Rochester
General Hospital and set up an appointment as soon as possible. After
hearing about the possible side effect of impotance and incontinence, I
told him that I would like do do some more research and look at Active
Surveillance until I decided the best course of action. He didn't seem
to happy about my decision but its my body and surgery is surgery with
side effects. I got on the internet and found Yana which had a wealth of
information. Proton Therapy sounded like the best alternative to me if
my cancer got more aggressive. I am going for another PSA test on March
15th 2011. I am reading Dr. Ornish's book Spectrum which is excellent on
Diet, exercise , meditation and Holistic methods to retard Cancer and
Tumor growth and staying healthy. Just ordered Bob Markini's book on You
Can Beat Prostate Cancer. I have a Medicare Advantage Plan and hope
Proton Therapy will be covered under it. NYS does not have any Proton
Centers and the nearest one to me would be at Mass General in Boston.
The Wilmont Cancer Center at the University of Rochester which is a
teaching hospital does not offer Proton Therapy but traditional
radiation treatments. It makes so much sense to me that Proton Therapy
would be the way to go because of its accuracy and protecting healthy
tissue surrounding the Prostate Gland
Thanks so much for your site Fuller and look forward to hearing from
you.
Regards,
Steve


Thanks, Steve,
I'm new to proton beam or any therapy for PCa and have done the bone scan
which was negative.
Trying to diagram my choices, I tend to favor not removing the prostate,
rather working the problem
because I have several sons and gsons that will need to know.
So ext is the rectal MRI tofurther bound the problem ad if that shows the
cancer is contained,. it tells me more that something like this Pbeam is the
right thing - logically,but Imust confess I'm biased.
I terms of living to say 100yo, I would guess removal is the surest, but
several friends have told me NEVER to do that and one was only troubled by
incontinence. Apparently rather small things can greatly influence quality
of life.

So I would prefer Pbeam, BUT there is yet another factor and that is I might
be competing with children for use of the device.
And that I won't do.

My choices then become surgery or watchful-something which is doing nothing,
IMO.
That results of that choice is certain

So I hafta get creative and I need more info, like my big problem is BPH, or
was, and I'm wondering if I still need a TURP before or after radiation to
work that.

I'm in good health at 75 - I can exercise, do just about any physical task
needed, even a new roof , etc.
I have a great grand daughter and I want to see her grad med school - easy
with 25 yrs to go.

Any thoughts anyone?

Regards










__________ Information from ESET NOD32 Antivirus, version of virus signature
database 5752 (20110101) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

--- In protoninfo@yahoogroups.com, C Pdk <pdk_c@...> wrote:
>
> Hi  “jwwright”
> Regarding the comment below:
> “So I would prefer Pbeam, BUT there is yet another factor and that is I
might
> be competing with children for use of the device.
> And that I won't do.”
> In my reading I’ve seen no compelling reason to exclude consideration of
proton therapy for this reason. It’s a rather weak argument being made against
use of protons for prostate cancer�"more of a diversion�"for political
reasons. In actuality I’ve read that children are given priority and moved up
the line for proton treatment with PC patients’ schedules adjusted to
accommodate them. And in fact, prostate cancer patients’ demand for proton
therapy is driving construction of new facilities which makes protons more
available, logistically, to everyone, including children.
> I wish you good luck with your continued research.Carol P.
>
> --- On Sun, 1/2/11, jwwright <jwwright@...> wrote:
>
>
> From: jwwright <jwwright@...>
> Subject: Re: [protoninfo] Re: Welcome new member Steve
> To: protoninfo@yahoogroups.com
> Date: Sunday, January 2, 2011, 3:29 PM
>
>
>  
>
>
>
>
> ----- Original Message -----
> From: Steve
> To: protoninfo@yahoogroups.com
> Sent: Saturday, January 01, 2011 6:33 PM
> Subject: [protoninfo] Re: Welcome new member Steve
>
> --- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@> wrote:
> >
> > "Recently diagnosed with early Prostate Cancer. Presently on Watchful
> Surveillance"
> >
> > Please take the time to check out proton therapy, and ask any
> questions you have.
> >
> > Fuller
> >
> Thanks Fuller for your recommendations for newly diagnosed Prostate
> Cancer and the Summary update on Proton Beam Centers for Cancer
> Treatment.
> I was refereed to a Urologist from my Primary Care Internist after my
> PSA test came back at 4.5.
> I am 69 years old and otherwise been blessed with good health overall.
> The Urologist did a DRE and said he felt a small lump and recommended a
> 12 core Biopsy which I had done in his office in December 2010. He
> called me back the following week and said my Gleason Grade was 2-3 and
> score was 5. He than sent me to Rochester General Hospital for a CT Scan
> and Bone Scan with a follow up visit one week later for the results. At
> that visit I was told that the CT Scan and Bone Scan were negative and
> that the Tumor was classified as T1c- T2a which could go to T2b.
> He wanted to do Robotic surgery using the DaVinci System at Rochester
> General Hospital and set up an appointment as soon as possible. After
> hearing about the possible side effect of impotance and incontinence, I
> told him that I would like do do some more research and look at Active
> Surveillance until I decided the best course of action. He didn't seem
> to happy about my decision but its my body and surgery is surgery with
> side effects. I got on the internet and found Yana which had a wealth of
> information. Proton Therapy sounded like the best alternative to me if
> my cancer got more aggressive. I am going for another PSA test on March
> 15th 2011. I am reading Dr. Ornish's book Spectrum which is excellent on
> Diet, exercise , meditation and Holistic methods to retard Cancer and
> Tumor growth and staying healthy. Just ordered Bob Markini's book on You
> Can Beat Prostate Cancer. I have a Medicare Advantage Plan and hope
> Proton Therapy will be covered under it. NYS does not have any Proton
> Centers and the nearest one to me would be at Mass General in Boston.
> The Wilmont Cancer Center at the University of Rochester which is a
> teaching hospital does not offer Proton Therapy but traditional
> radiation treatments. It makes so much sense to me that Proton Therapy
> would be the way to go because of its accuracy and protecting healthy
> tissue surrounding the Prostate Gland
> Thanks so much for your site Fuller and look forward to hearing from
> you.
> Regards,
> Steve
>
> Thanks, Steve,
> I'm new to proton beam or any therapy for PCa and have done the bone scan
> which was negative.
> Trying to diagram my choices, I tend to favor not removing the prostate,
> rather working the problem
> because I have several sons and gsons that will need to know.
> So ext is the rectal MRI tofurther bound the problem ad if that shows the
> cancer is contained,. it tells me more that something like this Pbeam is the
> right thing - logically,but Imust confess I'm biased.
> I terms of living to say 100yo, I would guess removal is the surest, but
> several friends have told me NEVER to do that and one was only troubled by
> incontinence. Apparently rather small things can greatly influence quality
> of life.
>
> So I would prefer Pbeam, BUT there is yet another factor and that is I might
> be competing with children for use of the device.
> And that I won't do.
>
> My choices then become surgery or watchful-something which is doing nothing,
> IMO.
> That results of that choice is certain
>
> So I hafta get creative and I need more info, like my big problem is BPH, or
> was, and I'm wondering if I still need a TURP before or after radiation to
> work that.
>
> I'm in good health at 75 - I can exercise, do just about any physical task
> needed, even a new roof , etc.
> I have a great grand daughter and I want to see her grad med school - easy
> with 25 yrs to go.
>
> Any thoughts anyone?
>
> Regards
>
> __________ Information from ESET NOD32 Antivirus, version of virus signature
database 5752 (20110101) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com
>
As long as your Gleason score is 6 or below, get your psa checked every 3 months
and watch it does not go above 10 and you should be fine. If the cancer is
aggressive then consider the least invasive alternative that's right for you. I
am leaning towards 3d mri radiation or proton therapy which looks like the wave
of the future.
Good luck and keep in touch.
Steve

A good friend had a radical prostatectomy in early December after a PSA of 10
and a biopsy revealing malignant cells in both lobes. The urologist removed a
string of eleven lymph nodes during the procedure. One of the nodes had
malignant cells and a Gleason rating of 4+5 was assigned. He has started hormone
therapy. A bone scan is scheduled for mid-January and external beam radiation is
scheduled for early March. He has been told in the past that his colitis
condition may prevent radiation treatment or may result in a colostomy.

My friend can go anywhere for treatment. He is currently being treated at a
lesser known regional cancer center with no proton facility and no particular
reputation in molecular imaging. Certain cancer centers have proton therapy
facilities and others have strong reputations in molecular imaging. Molecular
imaging can aid in the detection of metastatized cancer, reducing the volume
that proton therapy, for example, would need to target.

What is the best course for my friend? Should he seek treatment from a major
center with proton facilities and leadership in fields like molecular imaging?
Is proton therapy recommended after the prostate is removed? Does proton therapy
offer an opportunity to avoid irradiation of the colon that could impact his
colitis condition? How is it determined whether salvage proton therapy is
appropriate?

Thank you for any ideas!

Hi Steve,

You are doing everything right at this point. Take your time and study all your
options, but your first thought is what you will find is the correct one.

One bit of info: There is a new proton center in Philly which I believe will
almost as close to you, and on top of that I cannot in good conscience recommend
MGH in Boston.  They (MGH) will fight you tooth and nail to NOT give you protons
for prostate cancer. It is a "mindset" there and they want to use their facility
for mainly other types of cancer. They do not seem to think Prostate cancer is
serious enough to warrant using their system. Several here can testify to this.

To checkout the Philadelphia center go here:
http://www.pennmedicine.org/perelman/proton/

Keep us posted.

Fuller

--- In protoninfo@yahoogroups.com, "Steve" <sdeloia@...> wrote:
>
>
> --- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@> wrote:
> >
> > "Recently diagnosed with early Prostate Cancer. Presently on Watchful
> Surveillance"
> >
> > Please take the time to check out proton therapy, and ask any
> questions you have.
> >
> > Fuller
> >
> Thanks Fuller for your recommendations for newly diagnosed Prostate
> Cancer and the Summary update on Proton Beam Centers for Cancer
> Treatment.
> I was refereed to a Urologist from my Primary Care Internist after my
> PSA  test came back at 4.5.
> I am 69 years old and otherwise been blessed with good health overall.
> The Urologist did a DRE and said he felt a small lump and recommended a
> 12 core Biopsy which I had done in his office in December 2010. He
> called me back the following week and said my Gleason Grade was 2-3 and
> score was 5. He than sent me to Rochester General Hospital for a CT Scan
> and Bone Scan with a follow up visit one week later for the results. At
> that visit I was told that the CT Scan and Bone Scan were negative and
> that the Tumor was classified  as T1c- T2a which could go to T2b.
> He wanted to do Robotic surgery using the DaVinci System at Rochester
> General Hospital and set up an appointment as soon as possible. After
> hearing about the possible side effect of impotance and incontinence, I
> told him that I would like do do some more research and look at Active
> Surveillance until I decided the best course of action. He didn't seem
> to happy about my decision but its my body and surgery is surgery with
> side effects. I got on the internet and found Yana which had a wealth of
> information. Proton Therapy sounded like the best alternative to me if
> my cancer got more aggressive. I  am going for another PSA test on March
> 15th 2011. I am reading Dr. Ornish's book Spectrum which is excellent on
> Diet, exercise , meditation and Holistic methods to retard Cancer and
> Tumor growth and staying healthy. Just ordered Bob Markini's book on You
> Can Beat Prostate Cancer. I have a Medicare Advantage Plan and hope
> Proton Therapy will be covered under it. NYS does not have any Proton
> Centers and the nearest one to me would be at Mass General in Boston.
> The Wilmont Cancer Center at the University of Rochester which is a
> teaching hospital does not offer Proton Therapy but traditional
> radiation treatments. It makes so much sense to me that Proton Therapy
> would be the way to go because of its accuracy and protecting healthy
> tissue surrounding the Prostate Gland
> Thanks so much for your site Fuller and look forward to hearing from
> you.
> Regards,
> Steve
>

You said: "I terms of living to say 100yo, I would guess removal is the surest,
but several friends have told me NEVER to do that and one was only troubled by
incontinence. Apparently rather small things can greatly influence quality of
life.

So I would prefer Pbeam, BUT there is yet another factor and that is I might be
competing with children for use of the device.
And that I won't do."

First of all, the "live to 100" is every bit as likely with proton beam as
surgery, perhaps even more so.

Secondly, the various centers (there are now seven or maybe eight active) all
will NOT keep a child from receiving proton beam treatment to let a prostate
cancer patient receive it.  They all have enough capabilities (except perhaps
MGH Boston) to treat both and all prioritize the children first.

Thirdly, keep that "Quality of Life" thought uppermost in mind while deciding on
a treatment.

Fuller
--- In protoninfo@yahoogroups.com, "jwwright" <jwwright@...> wrote:
>
>
>
>
> I'm new to proton beam or any therapy for PCa and have done the bone scan
> which was negative.
> Trying to diagram my choices, I tend to favor not removing the prostate,
> rather working the problem
> because I have several sons and gsons that will need to know.
> So ext is the rectal MRI tofurther bound the problem ad if that shows the
> cancer is contained,. it tells me more that something like this Pbeam is the
> right thing - logically,but Imust confess I'm biased.
> I terms of living to say 100yo, I would guess removal is the surest, but
> several friends have told me NEVER to do that and one was only troubled by
> incontinence. Apparently rather small things can greatly influence quality
> of life.
>
> So I would prefer Pbeam, BUT there is yet another factor and that is I might
> be competing with children for use of the device.
> And that I won't do.
>
> My choices then become surgery or watchful-something which is doing nothing,
> IMO.
> That results of that choice is certain
>
> So I hafta get creative and I need more info, like my big problem is BPH, or
> was, and I'm wondering if I still need a TURP before or after radiation to
> work that.
>
> I'm in good health at 75 - I can exercise, do just about any physical task
> needed, even a new roof , etc.
> I have a great grand daughter and I want to see her grad med school - easy
> with 25 yrs to go.
>
> Any thoughts anyone?
>
> Regards
>
>
>
>
>
>
>
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus signature
database 5752 (20110101) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com
>

Folks, I have to take STRONG exception to part of this post:

THIS PART: "...watch it does not go above 10 and you should be fine."

If you are having your PSA checked periodically, the thing to watch for is a
continuing rise. It is the rapid increase (doubling time-- look it up) that
signifies that the cancer is becoming aggressive, and if your PSA goes above 4
or 5 and you rule out infection, seek treatment.

Fuller

--- In protoninfo@yahoogroups.com, "Steve" <sdeloia@...> wrote:
>
>
>
> --
> > > >
> As long as your Gleason score is 6 or below, get your psa checked every 3
months and watch it does not go above 10 and you should be fine. If the cancer
is aggressive then consider the least invasive alternative that's right for you.
I am leaning towards 3d mri radiation or proton therapy which looks like the
wave of the future.
> Good luck and keep in touch.
> Steve
>

Your post:
1. "What is the best course for my friend? Should he seek treatment from a major
center with proton facilities and leadership in fields like molecular imaging?
2. Is proton therapy recommended after the prostate is removed?
3. Does proton therapy offer an opportunity to avoid irradiation of the colon
that could impact his colitis condition?
4. How is it determined whether salvage proton therapy is
appropriate?"

Here are my thoughts:
1. This answers No. 2 and 4 as well: If I could go anywhere with the conditions
you list, I would first try to get a near term consultation at Loma Linda
University Medical Center Proton Center. If that appointment is more than one or
two months off, get to M. D. Anderson Proton Center in Houston as soon as
possible for a consultation. Do this BEFORE starting the radiation now
scheduled; put it off for now.

As far as the salvage goes, LLUMC and MDA both treat recurrent cancer after
surgery, but a consult is needed to determine if it is appropriate in his case.

3. YES!!! Definitely!!!!!

Fuller

--- In protoninfo@yahoogroups.com, "allankennard" <kennard@...> wrote:
>
> A good friend had a radical prostatectomy in early December after a PSA of 10
and a biopsy revealing malignant cells in both lobes. The urologist removed a
string of eleven lymph nodes during the procedure. One of the nodes had
malignant cells and a Gleason rating of 4+5 was assigned. He has started hormone
therapy. A bone scan is scheduled for mid-January and external beam radiation is
scheduled for early March. He has been told in the past that his colitis
condition may prevent radiation treatment or may result in a colostomy.
>
> My friend can go anywhere for treatment. He is currently being treated at a
lesser known regional cancer center with no proton facility and no particular
reputation in molecular imaging. Certain cancer centers have proton therapy
facilities and others have strong reputations in molecular imaging. Molecular
imaging can aid in the detection of metastatized cancer, reducing the volume
that proton therapy, for example, would need to target.
>
> What is the best course for my friend? Should he seek treatment from a major
center with proton facilities and leadership in fields like molecular imaging?
Is proton therapy recommended after the prostate is removed? Does proton therapy
offer an opportunity to avoid irradiation of the colon that could impact his
colitis condition? How is it determined whether salvage proton therapy is
appropriate?
>
> Thank you for any ideas!
>

Recommendations for the "Newly Diagnosed" Prostate Cancer Patient

1.  Do Not Panic! Many of us have been down this road before, and there is much
to learn before you choose the solution "best for you." You have had this thing
longer than you think, and taking the time to do the proper investigation into
your options will not hurt.  Since you have posted on the Internet, you
obviously have the means to do most of the research that you need to do. There
is a wealth of knowledge and experience for you to draw on.

2.  Do Not Accept the First Recommendation From the Urologist!  (Or any other
"first" recommendation) Get second, (or more) opinions from experts in other
specialties. Depending on your Gleason score, you have time to figure this thing
out! Gleason of 6 or less, take your time and be thorough; Gleason 7 and up, you
need to do something sooner than later, but remember that it "is not going to
kill you tomorrow," so you still have time to do a good job of fact gathering.
Your PSA value enters into this equation also. This is the time to learn and
thoroughly examine ALL your options, because whatever you choose, you will live
with the consequences the rest of your days.

3. I recommend that you also join "YANA" (You Are Not Alone")
http://www.yananow.net/
    Explore it. (My story is on YANA, under Mentor Experiences/Proton Beam).
Study this site carefully; the author, Terry Herbert, is "One of Us."

4. Consider Proton Beam Radiation Therapy (PBRT), which is only available at
eight (?) "Centers of Excellence" in the U. S. This is the ONLY treatment (other
than "Watchful Waiting" which of course has no side effects) that has the least
amount of side effects, with at least comparable results to all other options. 
Usually you will not hear of this option from other doctors or specialists!

Do not allow the fact that the doctor did not mention it prevent you from
considering this option along with the others! At the very least, study the
records about PBRT and if possible, visit one of the centers for a consultation.
Disadvantages:
Eight or Nine weeks at one of only five centers that offer it.
High cost (Medicare and most insurance does cover it).

Full disclosure: I believe that PBRT results in the best chance for improved
"Quality of Life" during and following treatment, and consider myself a "Proton
Beam Advocate!"
  I completed my PBRT in March of 2007. My original PSA was 5 ng/mL and my
Gleason was 4+4=8.

5.  Get Bob Marckini's book, "You Can Beat Prostate Cancer �" and read it cover
to cover BEFORE you visit your doctor again if possible. There is a wealth of
information in this book!
Order from Amazon or from Bob at www.protonbob.com .
This recommendation is very important in terms of learning about prostate
cancer.

6. Go here: and read Aubrey Pilgrims work:

	 http://www.prostatepointers.org/prostate/lay/apilgrim


Whatever method you choose for your treatment, you should be comfortable with
it.
Be happy that you made the choice, based on your personal situation. This is
many times better than accepting the recommendation of the diagnosing
specialist, then later wondering why you did not do your "due diligence" and
make your own decision!

Whatever method you choose, rest assured that the outcome, with experienced
surgeons or other specialists, is approximately the same for most modalities.
The major differences in the outcomes may be in "quality of life" issues, which
may or may not happen in every case.
For me, these were the main drivers in my decision to receive proton beam
therapy.

Fuller Jones

Terry has changed his YANA site to www.yananow.org

(NOT www.yananow.net)

Fuller

--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> Recommendations for the "Newly Diagnosed" Prostate Cancer Patient
>
> 1.  Do Not Panic! Many of us have been down this road before, and there is
much to learn before you choose the solution "best for you." You have had this
thing longer than you think, and taking the time to do the proper investigation
into your options will not hurt.  Since you have posted on the Internet, you
obviously have the means to do most of the research that you need to do. There
is a wealth of knowledge and experience for you to draw on.
>
> 2.  Do Not Accept the First Recommendation From the Urologist!  (Or any other
"first" recommendation) Get second, (or more) opinions from experts in other
specialties. Depending on your Gleason score, you have time to figure this thing
out! Gleason of 6 or less, take your time and be thorough; Gleason 7 and up, you
need to do something sooner than later, but remember that it "is not going to
kill you tomorrow," so you still have time to do a good job of fact gathering.
Your PSA value enters into this equation also. This is the time to learn and
thoroughly examine ALL your options, because whatever you choose, you will live
with the consequences the rest of your days.
>
> 3. I recommend that you also join "YANA" (You Are Not Alone")
> http://www.yananow.net/
>    Explore it. (My story is on YANA, under Mentor Experiences/Proton Beam).
Study this site carefully; the author, Terry Herbert, is "One of Us."
>
> 4. Consider Proton Beam Radiation Therapy (PBRT), which is only available at
eight (?) "Centers of Excellence" in the U. S. This is the ONLY treatment (other
than "Watchful Waiting" which of course has no side effects) that has the least
amount of side effects, with at least comparable results to all other options. 
Usually you will not hear of this option from other doctors or specialists!
>
> Do not allow the fact that the doctor did not mention it prevent you from
considering this option along with the others! At the very least, study the
records about PBRT and if possible, visit one of the centers for a consultation.
> Disadvantages:
> Eight or Nine weeks at one of only five centers that offer it.
> High cost (Medicare and most insurance does cover it).
>
> Full disclosure: I believe that PBRT results in the best chance for improved
"Quality of Life" during and following treatment, and consider myself a "Proton
Beam Advocate!"
>  I completed my PBRT in March of 2007. My original PSA was 5 ng/mL and my
Gleason was 4+4=8.
>
> 5.  Get Bob Marckini's book, "You Can Beat Prostate Cancer �" and read it
cover to cover BEFORE you visit your doctor again if possible. There is a wealth
of information in this book!
> Order from Amazon or from Bob at www.protonbob.com .
> This recommendation is very important in terms of learning about prostate
cancer.
>
> 6. Go here: and read Aubrey Pilgrims work:
>
>  http://www.prostatepointers.org/prostate/lay/apilgrim
>
>
> Whatever method you choose for your treatment, you should be comfortable with
it.
> Be happy that you made the choice, based on your personal situation. This is
many times better than accepting the recommendation of the diagnosing
specialist, then later wondering why you did not do your "due diligence" and
make your own decision!
>
> Whatever method you choose, rest assured that the outcome, with experienced
surgeons or other specialists, is approximately the same for most modalities.
The major differences in the outcomes may be in "quality of life" issues, which
may or may not happen in every case.
> For me, these were the main drivers in my decision to receive proton beam
therapy.
>
> Fuller Jones
>

----- Original Message -----
From: Fuller
To: protoninfo@yahoogroups.com
Sent: Sunday, January 02, 2011 5:37 PM
Subject: [protoninfo] To: "jwwright"



You said: "I terms of living to say 100yo, I would guess removal is the
surest, but several friends have told me NEVER to do that and one was only
troubled by incontinence. Apparently rather small things can greatly
influence quality of life.

So I would prefer Pbeam, BUT there is yet another factor and that is I might
be competing with children for use of the device.
And that I won't do."

First of all, the "live to 100" is every bit as likely with proton beam as
surgery, perhaps even more so.

Secondly, the various centers (there are now seven or maybe eight active)
all will NOT keep a child from receiving proton beam treatment to let a
prostate cancer patient receive it. They all have enough capabilities
(except perhaps MGH Boston) to treat both and all prioritize the children
first.

Thirdly, keep that "Quality of Life" thought uppermost in mind while
deciding on a treatment.

Fuller

Thanks very much, Fuller,
That's very reassuring.

What can I expect inre to BPH symptoms - do I still need meds after Pbeam
treatment?
I know these sound like silly questions, but the inet is not replete with
details.

Regards.




__________ Information from ESET NOD32 Antivirus, version of virus signature
database 5754 (20110102) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

http://science.slashdot.org/story/11/01/02/1244210/Why-Published-Research-Findin\
gs-Are-Often-False?from=headlines

Since the scientific/medical community has a publish or perish culture the
pressure to make the data "fit" is immense.

Richard

Your point Richard?

If you are implying that proton therapy results may be somehow "skewed" then I
suggest you investigate the data from LLUMC as they have been using proton beam
therapy since 1990 or 1991 and the number of patients treated number in the many
thousands (at least 12,000 in 2010). Data published from the results have the
advantage of numbers.

Fuller

--- In protoninfo@yahoogroups.com, "Richard" <richardlvance@...> wrote:
>
>
http://science.slashdot.org/story/11/01/02/1244210/Why-Published-Research-Findin\
gs-Are-Often-False?from=headlines
>
> Since the scientific/medical community has a publish or perish culture the
pressure to make the data "fit" is immense.
>
> Richard
>

Quick folow up: If he can get into LLUMC's Slater Proton Center try to get Dr.
Carl Rossi.

Fuller

--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> Your post:
> 1. "What is the best course for my friend? Should he seek treatment from a
major center with proton facilities and leadership in fields like molecular
imaging?
> 2. Is proton therapy recommended after the prostate is removed?
> 3. Does proton therapy offer an opportunity to avoid irradiation of the colon
that could impact his colitis condition?
> 4. How is it determined whether salvage proton therapy is
> appropriate?"
>
> Here are my thoughts:
> 1. This answers No. 2 and 4 as well: If I could go anywhere with the
conditions you list, I would first try to get a near term consultation at Loma
Linda University Medical Center Proton Center. If that appointment is more than
one or two months off, get to M. D. Anderson Proton Center in Houston as soon as
possible for a consultation. Do this BEFORE starting the radiation now
scheduled; put it off for now.
>
> As far as the salvage goes, LLUMC and MDA both treat recurrent cancer after
surgery, but a consult is needed to determine if it is appropriate in his case.
>
> 3. YES!!! Definitely!!!!!
>
> Fuller
>
> --- In protoninfo@yahoogroups.com, "allankennard" <kennard@> wrote:
> >
> > A good friend had a radical prostatectomy in early December after a PSA of
10 and a biopsy revealing malignant cells in both lobes. The urologist removed a
string of eleven lymph nodes during the procedure. One of the nodes had
malignant cells and a Gleason rating of 4+5 was assigned. He has started hormone
therapy. A bone scan is scheduled for mid-January and external beam radiation is
scheduled for early March. He has been told in the past that his colitis
condition may prevent radiation treatment or may result in a colostomy.
> >
> > My friend can go anywhere for treatment. He is currently being treated at a
lesser known regional cancer center with no proton facility and no particular
reputation in molecular imaging. Certain cancer centers have proton therapy
facilities and others have strong reputations in molecular imaging. Molecular
imaging can aid in the detection of metastatized cancer, reducing the volume
that proton therapy, for example, would need to target.
> >
> > What is the best course for my friend? Should he seek treatment from a major
center with proton facilities and leadership in fields like molecular imaging?
Is proton therapy recommended after the prostate is removed? Does proton therapy
offer an opportunity to avoid irradiation of the colon that could impact his
colitis condition? How is it determined whether salvage proton therapy is
appropriate?
> >
> > Thank you for any ideas!
> >
>

I'm a skeptic and a life long scientist and I havn't found enough info in
Pubmed, PMC, et al, to cover PCa.
I must rely on the Dr's doing the research in real time,and I think I have
good ones.
I find them very well educated and progressive - refreshing after 10 yrs of
"do nothing but watch"..

We need to plan for life at 100yo, not death.
To me the least risky is PBeam, (so far).
But I'm not there yet.
I'm suggesting my age 50's sons get biopsies, because I'm sure all males
carry PCa.

Regards



----- Original Message -----
From: Fuller
To: protoninfo@yahoogroups.com
Sent: Monday, January 03, 2011 5:15 AM
Subject: [protoninfo] Re: Most published research findings are not correct



Your point Richard?

If you are implying that proton therapy results may be somehow "skewed" then
I suggest you investigate the data from LLUMC as they have been using proton
beam therapy since 1990 or 1991 and the number of patients treated number in
the many thousands (at least 12,000 in 2010). Data published from the
results have the advantage of numbers.

Fuller

--- In protoninfo@yahoogroups.com, "Richard" <richardlvance@...> wrote:
>
>
http://science.slashdot.org/story/11/01/02/1244210/Why-Published-Research-Findin\
gs-Are-Often-False?from=headlines
>
> Since the scientific/medical community has a publish or perish culture the
> pressure to make the data "fit" is immense.
>
> Richard
>



__________ Information from ESET NOD32 Antivirus, version of virus signature
database 5755 (20110103) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

Hi Al,
The proton treatments are somewhere around 40 in number.  5 days a week
or about 2 months.
I had mine in Jacksonville Fl. I had no side effect during nor after
treatment. I did have Lupron starting 2 months prior to Protons.
And I had light Chemo during the Protons.  My psa was 20 at the start
there fore the 3 treatments combined seemed to worked.
I believe that protons can be used for salvage treatment. You should
contact one of the proton centers and query about your situation.
They should send you an introductory package.  To find all of the
centers in the US just Google "proton"
There are several websites and forums on Yahoo dealing with prostate
cancer.  My favorite is protoninfo  on Yahoo.
If I can answer further Q.  just send or join the Yahoo forum.
Regards
David d.

On 1/3/2011 9:39 AM, ynmalr wrote:
> Hi David:
>        I an an older 67 married male who had a Robotic Radical Prostatectomy
in 2008. My PSA was 2.8 for years then jumped to 22 in about a year. The
operation was not bad 1 day in hospital all nerves spared so sex is good now no
leaking good bladder control and penis same size as before operation. But now
PSA is on the rise again. I may need additional treatments so please tell me
about the Protonifo you can. What is the treatment like ? How long does it take/
How many treatments are there? Side effects of this type of treatments?
> Thanks.
> Al
>
>

Sent via BlackBerry from T-Mobile

----- Original Message -----

From: Roxanne Herrera

To: protoninfo@yahoogroups.com

Sent: Monday, January 03, 2011 11:43 AM

Subject: Re: [protoninfo] Re: Welcome new member Steve

 

All,

Several of you are asking about salvage proton radiation treatment availability. I just completed this type of therapy at ProCure, Oklahoma City. The experience was STELLAR! This 1.5 year old Proton Therapy Center currently has little, if any, back log and they do treat many types of cancer patients, including children.

Val

-----Original Message-----
From: Fuller <protoninfo@...>
To: protoninfo@yahoogroups.com
Sent: Sun, Jan 2, 2011 8:01 pm
Subject: [protoninfo] Re: Welcome new member Steve

 

Folks, I have to take STRONG exception to part of this post:

THIS PART: "...watch it does not go above 10 and you should be fine."

If you are having your PSA checked periodically, the thing to watch for is a continuing rise. It is the rapid increase (doubling time-- look it up) that signifies that the cancer is becoming aggressive, and if your PSA goes above 4 or 5 and you rule out infection, seek treatment.

Fuller

--- In protoninfo@yahoogroups.com, "Steve" <sdeloia@...> wrote:
>
>
>
> --
> > > >
> As long as your Gleason score is 6 or below, get your psa checked every 3 months and watch it does not go above 10 and you should be fine. If the cancer is aggressive then consider the least invasive alternative that's right for you. I am leaning towards 3d mri radiation or proton therapy which looks like the wave of the future.
> Good luck and keep in touch.
> Steve
>

Re: "silly questions" --- There are NONE. Please do not let any question you
have go unposted.  This goes for everyone! We may not have the answer, but we
will try!

If the symptoms you are referring to are difficulty in emptying your bladder and
getting up several times a night to attempt to do so, then most likely these
symptoms will be reduced if not eliminated, because the cancerous growth
(exhibited to the doc when he does the DRE as a "nodule") will gradually go
away, thus relieving the restriction on the urethra.

May be a gradual process. In my case took about two months before I started
sleeping my normal 6 or 7 hours without getting up. Note: This is if the BPH
symptoms are in fact caused by the PCa.

Fuller

--- In protoninfo@yahoogroups.com, "jwwright" <jwwright@...> wrote:
>
>
> ----- Original Message -----
> From: Fuller
> To: protoninfo@yahoogroups.com
> Sent: Sunday, January 02, 2011 5:37 PM
> Subject: [protoninfo] To: "jwwright"
>
>
>
> You said: "I terms of living to say 100yo, I would guess removal is the
> surest, but several friends have told me NEVER to do that and one was only
> troubled by incontinence. Apparently rather small things can greatly
> influence quality of life.
>
> So I would prefer Pbeam, BUT there is yet another factor and that is I might
> be competing with children for use of the device.
> And that I won't do."
>
> First of all, the "live to 100" is every bit as likely with proton beam as
> surgery, perhaps even more so.
>
> Secondly, the various centers (there are now seven or maybe eight active)
> all will NOT keep a child from receiving proton beam treatment to let a
> prostate cancer patient receive it. They all have enough capabilities
> (except perhaps MGH Boston) to treat both and all prioritize the children
> first.
>
> Thirdly, keep that "Quality of Life" thought uppermost in mind while
> deciding on a treatment.
>
> Fuller
>
> Thanks very much, Fuller,
> That's very reassuring.
>
> What can I expect inre to BPH symptoms - do I still need meds after Pbeam
> treatment?
> I know these sound like silly questions, but the inet is not replete with
> details.
>
> Regards.
>
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus signature
database 5754 (20110102) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com
>

Hi Jo Ann,

Glad your husband is doing well. Please don't expect  PSA pf zero -- "We still
are waiting 2 more PSA and hoping that he hits 0."

There will or should be a continuing decrease over time to somewhere between 0.1
and 0.5 ng/mL where it will level off.  Some get the infamous 'PSA Bounce" where
there will be an increase for a couple of readings. Again this is temporary
usually.  It takes a while to get over the dread of wondering what the next PSA
will be, but you eventually do.  I am at yearly checks now and after nearly four
years since treatment, have truly stopped worrying.

Thanks for your comments! You are dead on about the need for concern once the
PSA goes above 2 and continues to rise. If rising and goes from 2 to 4 in a year
or two, you have lost that time to development of the "beast."

Fuller


--- In protoninfo@yahoogroups.com, "jmccurdy" <jmccurdy1@...> wrote:
>
> I certainly agree with Fuller about PSA level.
>
> My husband had annual checks of his PSA by his Primary Care Physician for
years it went up to 2 and stayed there fro several years then 2 years ago it hit
4 and his Primary referred him to a urologist who followed PSA testing every six
months.
>
> He stayed at 4 for 2 years then in March 2010 it went to 4 and he was biopsied
and found to have adeno carcinoma cancer. He had a full body scan within 3 days
and no cancer was found but we new then he needed treatment.
>
> That's when we started our research fast and had an evaluation here in Phoenix
by a well known oncologist who my husband liked very much. But Prior to that
appointment I self referred him to MD Anderson and started the medical records
collection and overnight mailed them including his original biopsy. We went to
MD Anderson for 2nd opinion because we liked what we read and heard of Proton
Radiation.
>
> He finished his treatment at MDA in July and his first PSA was down from 8.2
to 2.1 in Oct. We do another one this month.
>
> As a nurse I feel pretty stupid that I did not have the good sense to insist
on a biopsy when he reached PSA of 4 even though we did not know of a family
history of prostate cancer. When MDA did the Rectal MRI which is pretty much
unheard of outside of Cancer Centers it showed some suspicious area around the
vas deferens.
>
> So in short anyone with a PSA of 4 should be biopsied in my opinion. Certainly
have told our son of 48 that he needs watched closely and he had his tested this
year.
>
> PSA of controversy is still going on and when and when not to biopsy but
better safe then sorry.
>
> We still are waiting 2 more PSA and hoping that he hits 0.
>
> He had no side effects and feels great now. But he chose not to do the hormone
therapy prior to radiation and because of that his MDA doctor says we will watch
him closely.
> JoAnn
> jmccurdy1@...
>

Hello Dennis.  At Gleason 6 and PSA5 you can take your time in making your
decision. The response from David Drexler is one that is from UFPTI at JAX.
There are several more here who had their treatment there, (please speak up
guys!-- here is a newbie asking a question!) but for several more accounts,
please join YANA (www.yananow.org) and read the Proton Mentor Experiences.  Many
of those are members here also.  I have tow personal friends of many years that
live here in Brevard County FL that have had the Proton Experience at UFPTI and
both are extremely positive about their experience.  Remember-- There is
"radiation," then there is Proton Beam.  There is a world of difference!

Best of the New Year to you!

Fuller

--- In protoninfo@yahoogroups.com, dkw1150@... wrote:
>
> I'm Dennis. Gleason 6. PSA 5.3. I have a CT scan scheduled late January for
previous colon cancer follow up. I will make my decision on PCa if all is well.
98% sure I will chose radiation. Can anyone relate their experience at Florida
Proton?
> Sent via BlackBerry from T-Mobile
>
> -----Original Message-----
> From: David Drexler <david@...>
> Sender: protoninfo@yahoogroups.com
> Date: Sat, 01 Jan 2011 18:53:58
> To: <protoninfo@yahoogroups.com>
> Reply-To: protoninfo@yahoogroups.com
> Subject: [protoninfo] Re: Please welcome paris
>
> Greetings to you newbies.
>
> Fuller has turned you on and welcomed you in so let the Q. fly.
>
> I am 70 y.o. and was protoned 3 years ago.  Start psa was 20.3.  It is
> now less than .1 and has been for 18 months.  By the way I had no side
> effects from protons.  The co-treatment of Lupron did cause the usual
> side effects such as hot flashes.  But they subsided after the 6 months
> Lupron wore off.
>
> The more info you tell us about you situation the more help you will get.
>
> Good luck and let us hear from you.
> David d.
>