Re: CALYPSO and RADATION.......IS THIS THE BEST?

[Guest guest]

Dr. Mark wrote:

> My close friend is 49 (turns 50 next month) with Stage T2b

> prostate cancer, Gleason 6, PSA at diagnosis 10. Next week he

> travels to the Cancer Treatment Center in AZ to discuss

> Radation Treatment using " Calypso " , its the GPS guided with

> SMRT radation for his cancer. Has anyone had this type of

> treatment? Or CYBERKNIFE?

I have not had these treatments and am not an expert, but I'll

venture a few comments anyway (this is the Internet after all

My understanding of Calypso is that it is very conventional

radiation therapy (that's a good thing, not a bad one) with the

added refinement that metal seeds are placed into the prostate

before the radiation and those seeds are used by the x-ray

delivery machine to cutoff radiation if the prostate has moved

significantly in the treatment field.

It is my inexpert impression that, if radiation is your friend's

chosen treatment modality, Calypso is a perfectly reasonable

choice.

BUT!  He should bear in mind two important factors:

1. It is still critical to have a good radiation oncologist and

   clinic.

  

   A sloppy, inattentive, inexpert, or hurried doctor or

   radiation technician can mess up treatment with any machine,

   including Calypso machines.

2. There may still be significant side effects of treatment.

   Many of the side effects of radiation are due not to

   mis-delivery of the x-rays, but to radiation to the prostate

   itself.  Even if the aiming of the beams is perfect, there

   will still be damage to the prostate (if there weren't, it

   wouldn't cure the cancer) and to nerves and blood vessels that

   run through or across it, and that is likely to have at least

   some sexual and urinary side effects.

   In addition, if the radiation oncologist is able to determine,

   for example by an endo-rectal MRI or by sophisticated

   ultrasound techniques, that the cancer extends outside the

   prostate capsule, then they will still have to radiate outside

   the prostate and probably do a little collateral damage.

   So your friend should not imagine that by choosing Calypso

   he's home free with regard to side effects.

Cyberknife is a less conventional treatment.  That technique uses

a smaller number of higher dose treatments.

I have no opinion about it.  From what I've read, it produces

comparable results in less time and at lower cost (e.g., 5 days

of treatment instead of 40 days.)  But I don't know if the

technique has been around long enough to establish whether it

works as well as, better than, or worse than, other external beam

radiation techniques.

> His urologist here in San Diego wants

> to do a radical prostectomy, but he is not interested in

> surgery.  HE was told that the risk of recurrence without

> removing it is 20%, but it may not recur until he is much

> older.

There is a huge amount of debate and a huge amount of hype about

the best treatment for prostate cancer.  I have seen claims

coming from even very well regarded surgery departments that

surgery is the only technique that really works, and claims from

radiation clinics that their results are superior to surgery.

I take all of these claims with many grains of salt.

> Curious what others out there have been through and how they

> might have changed their decision now.

At age 57 I was diagnosed with Gleason 7 (4+3), T2c cancer with

my highest pre-treatment PSA a little over 10.  I had a

combination of high dose rate brachytherapy (look up " HDR

brachytherapy " ), 3DCRT external beam radiation, and Lupron

hormone treatment.  That was over the winter of 2003-4 and, knock

on wood, I now appear to be cancer free.

There were side effects.  I had urinary urgency for about 5

months.  My potency has gradually declined since treatment.  I

have some Peyronie's disease (bending of the penis) - all of

which I associate with the treatment - though who knows for sure.

My advice to your friend is:

1. Be sure of the diagnosis!

   It is often a good idea to get a second opinion on the biopsy

   slides.  I have heard of some very rare cases where a second

   lab looks at the same slides and says they didn't see any

   cancer.

   That's extremely unlikely to happen, but I have seen many more

   cases where a lab reports that there is cancer but it's

   questionable whether it is large enough to warrant treatment

   at this time, or that there is cancer but it's not Gleason 6,

   it's actually Gleason 7 (that happened to me), and the

   treatment needs to be more thorough going and aggressive than

   for a Gleason 6 cancer.

   In my own case, my HMO lab and doctor said I had a Gleason 6

   cancer that they proposed to cut out.  I went to the National

   Cancer Institute, where I work as a computer programmer, and

   they told me it was in fact a Gleason 7 cancer, that it

   extended beyond the prostate, and that it needed treatment not

   only of the prostate itself, but of the area around the

   prostate and in the extra-prostatic extension.

2. Identify the treatment modalities that work.

   Rule out the ones that don't.  I would, for example, rule out

   cryotherapy and HIFU because, as far as I can tell, they do

   not produce as good results.

3. Eliminate the modalities that don't work for *him*.

   I ruled out surgery for perhaps the same reason as your

   friend.  I didn't want someone to put me to sleep and then go

   to work on me with a knife.  I thought that there were too

   many opportunities for someone to make a serious mistake.  I

   had been through that with a knee surgery and I didn't want it

   to happen again.

   I now think that was irrational.  If I had had a bad x-ray

   treatment I might have ruled out radiation and insisted on

   surgery instead.

   But sometimes there are gut feelings that have to be

   consulted.

4. Evaluate the doctor and the clinic more than the specific

   technology.

   I'd rather have an experienced, intelligent, skillful and

   caring practitioner of technology X than a so-so, average,

   not really very interested practitioner of technology Y.

   Your friend needs a doctor that really understands cancer.  If

   he's a radiation oncologist he should really understand

   whether and when to radiate what tissues with what doses.  He

   or she should be a person who answers questions patiently and

   thoughtfully and without making extravagant promises or claims

   about his superiority to others.  He or she should be someone

   whom your friend trusts to really care for his patients, not

   someone who runs through as many patients in as short a time

   as he can in order to pay for his yacht and his two martini

   lunches.

5. Bear in mind that I'm not an expert!

   My advice may not be worth much more than you paid for it.

But I hope it helps.

    Alan

[Guest guest]

Alan,

As a non-expert you have expertly made the point of being informed of the technique and

more importantly the technician.

As for my friend and the highly advertized clinin in AZ, my hope is the marketing meets

with the technical and diagnostic abilities. He was told they use the Calypso with the cyberknife technology as they said "cyberknife on steroids".

He'll know what they recommend after a 3 day evaluation and treatment plan presentation next week.

Thanks again for you non-expert information!

Mark> My close friend is 49 (turns 50 next month) with Stage T2b> prostate cancer, Gleason 6, PSA at diagnosis 10. Next week he> travels to the Cancer Treatment Center in AZ to discuss> Radation Treatment using "Calypso", its the GPS guided with> SMRT radation for his cancer. Has anyone had this type of> treatment? Or CYBERKNIFE?I have not had these treatments and am not an expert, but I'llventure a few comments anyway (this is the Internet after all :)My understanding of Calypso is that it is very conventionalradiation therapy (that's a good thing, not a bad one) with theadded refinement that metal seeds are placed into the prostatebefore the radiation and those seeds are used by the

x-raydelivery machine to cutoff radiation if the prostate has movedsignificantly in the treatment field.It is my inexpert impression that, if radiation is your friend'schosen treatment modality, Calypso is a perfectly reasonablechoice.BUT! He should bear in mind two important factors:1. It is still critical to have a good radiation oncologist and clinic. A sloppy, inattentive, inexpert, or hurried doctor or radiation technician can mess up treatment with any machine, including Calypso machines.2. There may still be significant side effects of treatment. Many of the side effects of radiation are due not to mis-delivery of the x-rays, but to radiation to the prostate itself. Even if the aiming of the beams is perfect, there will still be damage to

the prostate (if there weren't, it wouldn't cure the cancer) and to nerves and blood vessels that run through or across it, and that is likely to have at least some sexual and urinary side effects. In addition, if the radiation oncologist is able to determine, for example by an endo-rectal MRI or by sophisticated ultrasound techniques, that the cancer extends outside the prostate capsule, then they will still have to radiate outside the prostate and probably do a little collateral damage. So your friend should not imagine that by choosing Calypso he's home free with regard to side effects.Cyberknife is a less conventional treatment. That technique usesa smaller number of higher dose treatments.I have no opinion about it. From what I've read, it

producescomparable results in less time and at lower cost (e.g., 5 daysof treatment instead of 40 days.) But I don't know if thetechnique has been around long enough to establish whether itworks as well as, better than, or worse than, other external beamradiation techniques.> His urologist here in San Diego wants> to do a radical prostectomy, but he is not interested in> surgery. HE was told that the risk of recurrence without> removing it is 20%, but it may not recur until he is much> older.There is a huge amount of debate and a huge amount of hype aboutthe best treatment for prostate cancer. I have seen claimscoming from even very well regarded surgery departments thatsurgery is the only technique that really works, and claims fromradiation clinics that their results are superior to surgery.I take all of these claims with many grains of

salt.> Curious what others out there have been through and how they> might have changed their decision now.At age 57 I was diagnosed with Gleason 7 (4+3), T2c cancer withmy highest pre-treatment PSA a little over 10. I had acombination of high dose rate brachytherapy (look up "HDRbrachytherapy"), 3DCRT external beam radiation, and Lupronhormone treatment. That was over the winter of 2003-4 and, knockon wood, I now appear to be cancer free.There were side effects. I had urinary urgency for about 5months. My potency has gradually declined since treatment. Ihave some Peyronie's disease (bending of the penis) - all ofwhich I associate with the treatment - though who knows for sure.My advice to your friend is:1. Be sure of the diagnosis! It is often a good idea to get a second opinion on the biopsy slides.

I have heard of some very rare cases where a second lab looks at the same slides and says they didn't see any cancer. That's extremely unlikely to happen, but I have seen many more cases where a lab reports that there is cancer but it's questionable whether it is large enough to warrant treatment at this time, or that there is cancer but it's not Gleason 6, it's actually Gleason 7 (that happened to me), and the treatment needs to be more thorough going and aggressive than for a Gleason 6 cancer. In my own case, my HMO lab and doctor said I had a Gleason 6 cancer that they proposed to cut out. I went to the National Cancer Institute, where I work as a computer programmer, and they told me it was in fact a Gleason 7 cancer, that

it extended beyond the prostate, and that it needed treatment not only of the prostate itself, but of the area around the prostate and in the extra-prostatic extension.2. Identify the treatment modalities that work. Rule out the ones that don't. I would, for example, rule out cryotherapy and HIFU because, as far as I can tell, they do not produce as good results.3. Eliminate the modalities that don't work for *him*. I ruled out surgery for perhaps the same reason as your friend. I didn't want someone to put me to sleep and then go to work on me with a knife. I thought that there were too many opportunities for someone to make a serious mistake. I had been through that with a knee surgery and I didn't want it to happen

again. I now think that was irrational. If I had had a bad x-ray treatment I might have ruled out radiation and insisted on surgery instead. But sometimes there are gut feelings that have to be consulted.4. Evaluate the doctor and the clinic more than the specific technology. I'd rather have an experienced, intelligent, skillful and caring practitioner of technology X than a so-so, average, not really very interested practitioner of technology Y. Your friend needs a doctor that really understands cancer. If he's a radiation oncologist he should really understand whether and when to radiate what tissues with what doses. He or she should be a person who answers questions patiently and

thoughtfully and without making extravagant promises or claims about his superiority to others. He or she should be someone whom your friend trusts to really care for his patients, not someone who runs through as many patients in as short a time as he can in order to pay for his yacht and his two martini lunches.5. Bear in mind that I'm not an expert! My advice may not be worth much more than you paid for it.But I hope it helps. Alan

[Guest guest]

I would echo Alan's emphasis on WHO over WHAT. All I have read indicates that the best results are correlated to the most experienced practitioners. My profile is similar to your friend. I was 53 at diagnosis. I was diagnosed Gleason 6 my primary doc did not feel is so that was T1-C, the urologist felt it so it was T2-A but post surgery it was on both sides (T2-C). My PSA was only a bit over 4 (4.3).

I chose radical over radiation despite talking to a radiology clinic and a ProstRcision doctor in Atlanta. Good news on radiation is that it is confined to specialty centers (Chicago for example has essentially one center). As such the doctors in that specialty get a lot of practice. The proprietary centers (the ones with a fancy registered trademark name) have similarly intensive experience.

Radiation from what I read will finish with less side effects initially (for most guys). The sexual function will over time decline to meet that of surgery. My experience with surgery is that after almost 9 months I am probably 40%.

My experience is that the significant incontinence from surgery goes away pretty quick.You will still drip a bit due with exertion on occasion. I believe long term results of radiation are better. This is because you are not affecting the muscle just outside of the bladder. In surgery it is removed. 

All studies show radiation at least as good as radical surgery. Despite that I decided on radical due to the longer term. Studies are usually out to 10 years and for me that is 63 years old. My worst outcome would be any re-occurrence should i live to that age or beyond (God willing).

I wish you friend good luck. Whatever he decides it is best to make a decision he can live with and never look back.Steve

[Guest guest]

Mark,

If you go along to my site you will see an

index at http://www.yananow.org/exp_data.php?desc=All

of the stories of more than 1,000 men who have chosen a wide variety of

therapies, including Calypso and Cyberknife. There I also a brief write up

about Cyberknife here http://www.yananow.org/cyberknife.htm

All the best

Terry Herbert

in Melbourne

Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony

Metastasis: Aug '07: Intermittent ADT: PSA 3.4 May '11

My site is at www.prostatecancerwatchfulwaiting.co.za

It is a

tragedy of the world that no one knows what he doesn’t know, and the less

a man knows, the more sure he is that he knows everything. Joyce Carey

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Dr. Mark

Sent: Saturday, 13 August 2011

2:33 AM

To: ProstateCancerSupport

Subject:

CALYPSO and RADATION.......IS THIS THE BEST?

My

close friend is 49 (turns 50 next month) with Stage T2b prostate cancer,

Gleason 6, PSA at diagnosis 10. Next week he travels to the Cancer Treatment

Center in AZ to discuss

Radation Treatment using " Calypso " , its the GPS guided with SMRT

radation for his cancer. Has anyone had this type of treatment? Or CYBERKNIFE?

His urologist here in San Diego

wants to do a radical prostectomy, but he is not interested in surgery. HE was

told that the risk of recurrence without removing it is 20%, but it may not recur

until he is much older.

>

> Curious what others out there have been through and how they might have

changed their decision now.

>

[Guest guest]

Greetings Dr. Mark,

I was diagnosed. with a psa of 20 in 2007. I did the Proton

radiation. I just got my semi annual report today . Psa is still

less than 0.1

I have had no side effects. The results of the majority of Proton

patients is the same.

Do your homework and check out Proton treatments.

If I can answer any further please reply

Good luck with your searches.

D.

My close friend is 49 (turns 50 next month) with Stage

T2b prostate cancer, Gleason 6, PSA at diagnosis 10. Next

week he travels to the Cancer Treatment Center in AZ to

discuss Radation Treatment using "Calypso", its the GPS

guided with SMRT radation for his cancer. Has anyone had

this type of treatment? Or CYBERKNIFE? His urologist here

in San Diego wants to do a radical prostectomy, but he is

not interested in surgery. HE was told that the risk of

recurrence without removing it is 20%, but it may not

recur until he is much older.

>

> Curious what others out there have been through and

how they might have changed their decision now.

>

[Guest guest]

. What was your treatment length and did insuranceCover the cost? My friend is consideringSBRT for the 5 day treatment. Thanks. MarkSent from my iPhone

Greetings Dr. Mark,

I was diagnosed. with a psa of 20 in 2007. I did the Proton

radiation. I just got my semi annual report today . Psa is still

less than 0.1

I have had no side effects. The results of the majority of Proton

patients is the same.

Do your homework and check out Proton treatments.

If I can answer any further please reply

Good luck with your searches.

D.

My close friend is 49 (turns 50 next month) with Stage

T2b prostate cancer, Gleason 6, PSA at diagnosis 10. Next

week he travels to the Cancer Treatment Center in AZ to

discuss Radation Treatment using "Calypso", its the GPS

guided with SMRT radation for his cancer. Has anyone had

this type of treatment? Or CYBERKNIFE? His urologist here

in San Diego wants to do a radical prostectomy, but he is

not interested in surgery. HE was told that the risk of

recurrence without removing it is 20%, but it may not

recur until he is much older.

>

> Curious what others out there have been through and

how they might have changed their decision now.

>

[Guest guest]

. What was your treatment length and did insuranceCover the cost? My friend is consideringSBRT for the 5 day treatment. Thanks. MarkSent from my iPhone

Greetings Dr. Mark,

I was diagnosed. with a psa of 20 in 2007. I did the Proton

radiation. I just got my semi annual report today . Psa is still

less than 0.1

I have had no side effects. The results of the majority of Proton

patients is the same.

Do your homework and check out Proton treatments.

If I can answer any further please reply

Good luck with your searches.

D.

My close friend is 49 (turns 50 next month) with Stage

T2b prostate cancer, Gleason 6, PSA at diagnosis 10. Next

week he travels to the Cancer Treatment Center in AZ to

discuss Radation Treatment using "Calypso", its the GPS

guided with SMRT radation for his cancer. Has anyone had

this type of treatment? Or CYBERKNIFE? His urologist here

in San Diego wants to do a radical prostectomy, but he is

not interested in surgery. HE was told that the risk of

recurrence without removing it is 20%, but it may not

recur until he is much older.

>

> Curious what others out there have been through and

how they might have changed their decision now.

>

[Guest guest]

Greetings Mark,

Medicare and united covered the entire procedures. I am now 70

but was 66 at the treatment time.

I don't remember the exact timing, but I believe it was 39 treatment

days. About 2 months.

I went to the ville Proton Center. There is also an

excellent facility in Loma Ca.

BTW, Mayo clinic in fixing to put in 2 proton centers. One in Mn.

and one in AZ. They will not put one in ville, since the U.

of Fl already has the one there. I don't believe The Mayo Clinic

would invest in 2 proton center if it was not proven technology.

Regards,

d.

. What was your treatment length and did

insurance

Cover the cost? My friend is considering

SBRT for the 5 day treatment.

Thanks. Mark

Sent from my iPhone

On Aug 12, 2011, at 4:26 PM, Drexler

wrote:

Greetings Dr. Mark,

I was diagnosed. with a psa of 20 in 2007. I did

the Proton radiation. I just got my semi annual

report today . Psa is still less than 0.1

I have had no side effects. The results of the

majority of Proton patients is the same.

Do your homework and check out Proton treatments.

If I can answer any further please reply

Good luck with your searches.

D.

My close friend is 49 (turns 50 next month)

with Stage T2b prostate cancer, Gleason 6, PSA

at diagnosis 10. Next week he travels to the

Cancer Treatment Center in AZ to discuss

Radation Treatment using "Calypso", its the GPS

guided with SMRT radation for his cancer. Has

anyone had this type of treatment? Or

CYBERKNIFE? His urologist here in San Diego

wants to do a radical prostectomy, but he is not

interested in surgery. HE was told that the risk

of recurrence without removing it is 20%, but it

may not recur until he is much older.

>

> Curious what others out there have been

through and how they might have changed their

decision now.

>

[Guest guest]

Chuck Maack

> Here is recently up-to-date information regarding CyberKnife

> radiation with 5-year outcomes of low risk prostate cancer

> patients provided by Stanford University, California and Naples

> Community Hospital in Naples, Florida:

>   http://tinyurl.com/3jqstjh

My conclusion from reading that article is that the outcomes for

CyberKnife were about the same as for other well accepted

treatments for low risk cancer, not significantly better and not

significantly worse.

My inexpert thoughts about that are: If I liked the doctors

offering this procedure, and if my insurance covered it, and if I

would be able to get follow up care, I would get it.

On the other hand if I liked another doctor with a standard

treatment better, or if I liked him as well but his treatment was

closer to home and more convenient for treatment and follow up,

and if insurance paid for it, I might go with the that doctor.

One thing I would want to do is get a second opinion on the

biopsy slides.  If an expert lab says that it's really a Gleason

7, then that could change things.  I'd want the radiation

oncologists to give me their theories about the chances of

extrprostatic extensions and invasion of surrounding tissue, and

what they would do about that.

Steve Jordan has periodically posted names, addresses and phone

numbers of expert labs.  His postings should be in the archives

of this group.  A search on " Bostwick " might find it.

In my own case I had HDR brachytherapy is the main treatment for

the prostate but also got external beam therapy treating the area

one centimeter around the prostate for my Gleason 4+3 cancer

(originally diagnosed as Gleason 6.)  CyberKnife might still be

fine, but I'd want to be sure it was appropriate for the higher

risk case.  The article Chuck cited only described results for

low risk cancers.

    Alan

[Guest guest]

Chuck Maack wrote:

> And Alan, HDR ranks among the best long term outcome treatment options.

I've seen a number of claims that it works very well but it

doesn't seem to have caught on.  I've only seen one other guy on

the two lists that I follow (this one and

alt.support.cancer.prostate) that had it.

It's possible that the permanent seed implant does just about as

well and is easier to do.  There is only one procedure instead of

two, as I had, and three as the other guy I know had.

In theory, HDR has some advantages over LDR.  Whether those

theoretical advantages translate to better outcomes isn't so easy

to say.

In any case, prostate cancer treatment seems to be subject to

hype and fads.  IMRT, protons, LDR, HDR, Calypso, CyberKnife, and

robotic surgery are all competing for patients and the

practitioners just keep upping the level of hype in hopes of

keeping their waiting rooms full.

Patients are understandably confused.

    Alan