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Old 06-08-2009, 05:01 PM   #1
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Father diagnosed recently

Hello everyone,

First, I want to say that this board has been very helpful. Thanks in advance for reading, and I look forward to getting your responses.

I'm writing on behalf of my father, who was diagnosed in April with prostate cancer. I'm helping him get more information about his diagnosis and next steps to take.

My father is 58 year old and Asian. Leading up to his diagnosis, he was in relatively good health. He has been exercising regularly for at least the past five years and also improved his diet during that time.

His diagnosis below. I'm just learning about this cancer and treatment myself, and I'm passing on the info he gave me. My apologies if some of this doesn't make sense.

PSA level: 6.1

Biopsy 4/22/09

Gleason scores: 3+3

Bone scan 5/8/09

Impression: No convincing scientigraphic evidence of metastatic disease
probable normal variant in the sternum metastatic disease unlikely.

MRI Pelvis 5/26/09

No lymphadenopathy decreased T2 signal is present on the right within the apex and mid gland laterally and on the left of mid gland laterally. Focal T1 Bright signal identified at right base laterally however not in area of suspected tumor on the T2 weighted images. Areas of T2 low signal correspond to area of early enhancement on post enhancement images. No correlating difussion abnormalty in this area of T2 signal, however no tumor involvement of seminal vesicles or extracapsule extention. Impression T2 signal consistent with tumor right mid gland laterally and apex and on the left at mid gland. No extracapsular tumor spread or adenopathy visualised.

Addendum: prostate size measures 4.3x1.9x2.8 cm, volume 12cc prostate is normal in size.

MRI Abdominal 5/28/09

Finding: liver and spleen enhance normally.splenic vein, portal vein, hepatic vein are patent. Intrahepatic ducts are nonedilated.Kidneys enhance symmetrically without hydronephrosis. Pancreas is normal contour. No bulky retroperitoneal lymphadenopathy. No ascites within the abdominal. Impression: no evidence of metastatic disease within abdominal.

My father's doctor recommended a prostatectomy, but my father is looking for a second opinion. In particular, he'd like to learn more about--and could possibly seriously consider--Brachytherapy. I've read that there's only a small possibility of severe side effects with the Brachytherapy, but that the prostatectomy will likely be more effective. My sense is that my father would rather not have the surgery. He's also interested in hearing more about watchful waiting.

Thanks very, very much for reading and for your responses.

--Son1409

 
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Old 06-08-2009, 06:45 PM   #2
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Re: Father diagnosed recently

Hi Son1409,

Welcome to the board! Your father is indeed fortunate to have your help and support.

You've done a fine job of providing key information. I'll comment on an excerpt of your post. Jim


...His diagnosis below. ...
PSA level: 6.1 While the PSA is elevanted somewhat, it is also well below 10, which is a good sign.

Biopsy 4/22/09

Gleason scores: 3+3 Gleason 6 is the typical score for most new prostate cancer patients these days. It is a good score to have, if valid. Do you know if the pathologist who did the reading is a general pathologist or one with special expertise in prostate cancer? If he lacked special expertise, he could still be right, but there is a substantial problem with undergrading, and a lesser but still significant problem with overgrading, though quite unlikely with an initial grading of 6. (By the way, I'm saying this as a now savvy layman, but I've had no enrolled medical education.) Leading doctors commonly advise a second pathology opinion if the initial reading was not done by an expert.

Do you know how many biopsy cores were taken, how many were positive, and what % of each positive core was cancer? That information is worth knowing and recording for reference.


Bone scan 5/8/09 ... [apparently normal] That normal reading for the bone scan is overwhelmingly the result in cases like your father's. The American Urological Association has just taken an official stand that discourages bone scans in such cases in order to better use resources. Still, now that it was done, that's obviously the result you want to have.

MRI Pelvis 5/26/09... however no tumor involvement of seminal vesicles or extracapsule extention. Impression T2 signal consistent with tumor right mid gland laterally and apex and on the left at mid gland. No extracapsular tumor spread or adenopathy visualised.

Do you know if the MRI was an "endo-rectal MRI, or an endo-rectal MRI with spectroscopy? Both UCSF and Stanford are hotbeds of expertise in prostate cancer imaging, with UCSF being the lead pioneer in endo-rectal MRI.

Addendum: prostate size measures 4.3x1.9x2.8 cm, volume 12cc prostate is normal in size.

MRI Abdominal 5/28/09... Impression: no evidence of metastatic disease within abdominal.

My father's doctor recommended a prostatectomy, but my father is looking for a second opinion.

Second opinions, and third, fourth, fifth, etc. opinions, are par for the course in prostate cancer as there is no established front runner in treatment for cases like your father's. As you may have already suspected, surgeons overwhelmingly recommend surgery, radiation doctors recommend radiation, and Ford salesmen recommend buying Fords. There are quite a few more broadminded exceptions to the general rule, and it's nice to talk to them.

In particular, he'd like to learn more about--and could possibly seriously consider--Brachytherapy. I've read that there's only a small possibility of severe side effects with the Brachytherapy, but that the prostatectomy will likely be more effective.

Your impressions about side effects match the research. In the hands of experts, both therapies appear about equal in effectiveness. The key with brachytherapy seems to be getting good imaging during and after the procedure to make sure there are no "cold spots" between the seeds. I suspect there are expert local medical practices in your area, which is blessed with talent. Just for instance, Stanford is a world leader in radiation therapy research for prostate cancer; at UCSF Dr. Peter Carroll is renowned for his surgical skill, but he is also the leader of one of the world's prominent Active Surveillance programs.

My sense is that my father would rather not have the surgery. He's also interested in hearing more about watchful waiting.

To me "watchful waiting" means not doing much while you wait and hope that you are not clobbered by aggressive prostate cancer. A similar sounding but vastly superior approach, probably what you have in mind, is becoming known as "Active Surveillance" (AS). The keys in AS are (1) careful patient selection so that those men who should not defer therapy are treated promptly at the outset; (2) diligent monitoring so that (3)cancer that turns out to be more aggressive than originally indicated is caught early enough for a sound and timely shot at a cure (with success virtually the same as for immediate therapy, and for a good side effect profile).

There are at least a couple of threads on AS on this board, which discuss research and major AS programs, and many posts.


Thanks very, very much for reading and for your responses.

--Son1409[/QUOTE]

You're welcome. Be sure to take a look at some posts about lifestyle tactics. I reviewed some highlights in another response just before reading your post. Many of these tactics are quite compatible with an Asian lifestyle (indeed, much of the related research has been motivated by observations of the relatively low mortality from prostate cancer in Asia), so having that heritage is a definite advantage. Does your father practice tai chi? That would help cover the stress reduction aspect of the lifestyle tactics, and would also help with the exercise aspect.

I hope you will get other responses as each of us has our own unique viewpoint and experience to bring to the board. I also hope you will continue to post.

Take care,

Jim

 
Old 06-08-2009, 07:57 PM   #3
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Re: Father diagnosed recently

Quote:
Originally Posted by Son1409 View Post
....My father's doctor recommended a prostatectomy, but my father is looking for a second opinion. In particular, he'd like to learn more about--and could possibly seriously consider--Brachytherapy. I've read that there's only a small possibility of severe side effects with the Brachytherapy, but that the prostatectomy will likely be more effective. My sense is that my father would rather not have the surgery....
It's good you're able to be of such help in all this-- it can seem overwhelming at first, but once you figure out the basics, things do tend to become more understandable. It does take a while to review the various alternatives, and as Jim pointed out, doctors tend to recommend what THEY do, and don't often
give an impartial view of all that's out there.

I was 64 when diagnosed, with a Gleason 7, so somewhat more aggressive than what your father was diagnosed with. My urologist strongly recommended surgery, and I did schedule that while I looked into other alternatives. I read quite a bit and talked to many people- ultimately I came across proton beam therapy, a very targeted form of radiation with generally fewer side effects than other treatments. I usually recommend that newly diagnosed men at least put this on their list to check out, as each ultimately makes the decision that seems "right" for him.

The leading center for this, until the past several years when other centers were built, is at Loma Linda, California. (I live in North Carolina and chose to have my treatments at Univ of Florida Proton Therapy Institute in Jacksonville.) This is just something else to think of as you start the learning process. Since doctors don't generally talk about all these methods, I'd suggest you read a book written by Robert Marckini, entitled "You Can Beat Prostate Cancer". Again, I'm not saying this is something your father should do, but I do think that men should learn about as many alternatives as they can, since generally the cure rates are about the same, but the scope and potential severity of side effects can be very different. (And I wouldn't necessarily rule out surgery-- it just wasn't my choice.)

Hope this helps a little. There's a lot of helpful info on this board, so I'd encourage you to read some of the past posts.

 
Old 06-08-2009, 11:20 PM   #4
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Re: Father diagnosed recently

Daff and Jim, thanks for your replies.

I'll speak with my father to get more information on his diagnosis. I'd like for him to get several more opinions. There seems to be many treatment options out there for him to consider.

Daff: thanks for your insight and for the book recommendation. I just ordered Strum and Pogliano's "A Primer on Prostate Cancer" for us to read.

Jim: I'm out in CA, but my father is in VA near Annandale. I'll have to ask him more about the doctor and hospital he's been visiting, and maybe see if there are better options in the greater DC area.

Thanks, and I'll post again soon.

--Son1409

 
Old 06-09-2009, 08:07 AM   #5
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Re: Father diagnosed recently

I am sorry your father and family are going through this but i think you hit on an excellent source for suggestions when you came to this board. I have learned a lot here and have gotten encouragement from reading many of the threads.

It is good to get a second opinion. In my case my biopsy was read in Hawaii originally as a 3+4. When I arrived at UCLA the read untreated slides from the same biopsies as 4+4. I elected a Radical Prostatectomy, the pathology once the tumor was removed revised the gleason to 4+5.

I may have taken the same path after the first reading but I am not sure. I definately was not well enough informed.

In addition to the book mentioned already I found DR Myers' book Beating Prostate Cancer (Hormonal Therapy and Diet) to be very good, I think I first heard about it here from one of Jim's posts.

All the best

John

 
Old 06-09-2009, 02:05 PM   #6
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Re: Father diagnosed recently

Quote:
Originally Posted by Son1409 View Post
...

Jim: I'm out in CA, but my father is in VA near Annandale. I'll have to ask him more about the doctor and hospital he's been visiting, and maybe see if there are better options in the greater DC area.

...--Son1409
I realized shortly after posting that your father was probably in a different location, and it's ironic that he is across the country and near me. It also caught my attention that the imaging equipment in his scans used 2 Tesla instead of 3 Tesla; while most of the world still uses 2 or lower, my impression is that at least two of the major facilities near you are now using 3 Tesla. Now the 2 Tesla equipment in your father's scans makes sense. There is nothing wrong with 2 Tesla equipment - it's been doing a good job for years. It's just that 3 Tesla gives even better resolution.

If your dad contacts the Virginia Prostate Cancer Coalition, he can learn about support groups all over the state. I know that one group in Northern Virginia is having a speaker tonight talk about his experience with proton beam therapy. No doubt that's too late for him to hook up with for tonight's program, but there are several good support groups in the area.

There are many good doctors and facilities in this area.

Take care,

Jim

 
Old 06-09-2009, 03:40 PM   #7
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Re: Father diagnosed recently

Jim: My father is checking to see if his doctor has special expertise in prostate cancer. My own research (google search) found that his doctor works in Clinical Pathology and Cytopathology. My father did pass on this information, as you had asked, about this pelvis MRI:

A combination of endorectal coil and torso phased array coil were use to image the pelvis. Large view T1 FSE axial sequence performed from iliac crest through the pelvis with phase array coil. Using endorectal coil small volume axial T1 gradient echo pre and postgadolinium enhancement, axial T2, coronal T2, and sagital T2 fast recovery fast spin echo images were obtained. Diffusion sequence also performed.

Thanks for letting me know about the Virginia Prostate Cancer Coalition. We'll have to read up more on proton beam therapy, now that you and Daff have mentioned it.

GuamJohn: thanks for your comments. How are you doing now?

--Son1409

 
Old 06-10-2009, 09:18 PM   #8
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Re: Father diagnosed recently

SON 1409:
You seem to be on a good path to a decision on your father's course of action. All the prior posts are correct. Your father appears to have a low risk diagnosis with almost certain organ confined disease. This gives him the best possible chance for outright cure with either a prostatectomy performed by an outstanding surgeon at one of the nationally reknowned centers or radiation by an equally reknowned expert. Jim points out that Brachytherapy while a completely established therapy for localised P.C. as in your dad's case, there is the risk of "cold spots" which could miss some cancer cells since the seeds can't cover the entire prostate even guided by the high tech imaging used today.
IMRT and Proton Beam are considered today's state of the art for external beam radiation.
While "Active Surveillance" is gaining more acceptance by the prostate cancer establishment, I'm personally uncomfortable with it for a man as young as your father with such an excellant prognosis for an outright cure. With A.S. there is the risk of missing the window of opportunity for curative treatment no matter how scrupulously one maintains vigilance with periodic PSA's and annual biopsies. The cancer has been known to penetrate the capsule in just a few months even with non-aggressive grades such as your father's, thereby complicating treatment and reducing the chance for a cure.
Also A.S. requires a certain kind of person who can live and enjoy life with the knowledge they are harboring a potentially deadly disease which could spread while treatment is being deferred. Many folks don't want the anxiety of waiting out frequent PSA's and then having to decide when is the right time to attack it; after the first rise in PSA or the next,etc.? Even the experts differ on this question.
I decided to get rid of it as soon as I could arrange surgery with the best surgeon in the best hospital I knew of. I wanted to be cured if possible as soon as possible and never regretted it. Each of us has different temperments and perspectives on prostate cancer and should decide on their best course accordingly after as much research as they can tolerate.
Good Luck, Bob

 
Old 06-11-2009, 11:49 AM   #9
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Re: Father diagnosed recently

Dear Bob,

Thanks for your very helpful insights.

My father and I are planning to do a lot of research in the coming weeks, and I'm going to talk to him soon about arranging a second opinion as soon as possible.

Regarding brachytherapy, is there any way for the doctors to how likely it is that there could be cold spots?

As for active surveillance, I think my father could be willing to be patient, but I can understand why someone with his prognosis would want to act quickly for a potential curative treatment.

Thanks so much.

--Son1409

 
Old 06-11-2009, 01:04 PM   #10
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Re: Father diagnosed recently

Son1409
You're more than welcome. I really don't know how Dr's administering brachtherapy can identify "cold spots" since it would seem they're inevitable if a limited number of seeds are placed. Every effort is made through advanced imaging to cover all visible tumor tissue, however the very small or microscopic tumor tissue would escape detection if its too small to be seen. There are just so many seeds that can be implanted without doing damage to surrounding tissue. Suggest you ask a radiation/oncologist whe specialises in brachtherapy for more specific details. There are also excellant websites especiaaly the one from the Tumor Institute in Seattle by Dr. Blascome and a Power Point presentation showing the process and giving a great deal of information.
Sorry but the rules of this board don't permit me to give you the URL but I'm sure you'll find it by Googling.
Bob

 
Old 06-12-2009, 06:54 PM   #11
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Re: Father diagnosed recently

Hi Son 1409 and Bob,

I'm trying to get a better handle on cold spots in brachytherapy, as addressed in your two previous posts excerpted just below, and I've got part of the story based on what I've heard about brachytherapy in the past and a visit with www.pubmed.gov (PubMed)tonight, but hope to learn more in the future." I did not realize that brachytherapy cold spots were much of a problem until recently. Apparently the situation is pretty good, but I'm thinking it puts a higher than usual premium on finding an expert when you are having brachytherapy Jim


"... Regarding brachytherapy, is there any way for the doctors to how likely it is that there could be cold spots? ... - Son1409


Quote:
Originally Posted by shs50 View Post
Son1409
... I really don't know how Dr's administering brachtherapy can identify "cold spots" since it would seem they're inevitable if a limited number of seeds are placed. Every effort is made through advanced imaging to cover all visible tumor tissue, however the very small or microscopic tumor tissue would escape detection if its too small to be seen. There are just so many seeds that can be implanted without doing damage to surrounding tissue. ...
Bob
I knew that CT was used by at least some brachytherapy doctors to plan seed placement, and I learned on PubMed tonight that CT right after placement, while the patient is still sedated, can accurately identify seed placement and provide the data needed to identify cold spots. Sometimes, apparently, problems beyond the control of doctors can cause ineffective placement; for instance, the insertion needles can cause tissue swelling in the prostate that distorts the gland slightly and causes placement errors. Later, additional seeds can be implanted to correct the errors and cover the cold spots, or external beam radiation can be given.

I have always assumed that good brachytherapy docs radiated the whole prostate, not just parts of it. Is there a reason to think otherwise? I haven't heard that there are problems with too many seeds in the prostate, but this is not a field that I have followed closely.

My conclusion as of tonight is that good brachytherapy docs have ways to ensure that radiation coverage is satisfactory, but I have doubts about how many such docs use post implant CT to verify results. I sure would want to check that with the doctor before having him work on me!

Jim

 
Old 06-13-2009, 07:19 PM   #12
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Re: Father diagnosed recently

Dear Jim: Thanks for the info about brachytherapy and cold spots. It seems like CT right after placement would be a standard procedure, but I'll make sure my dad asks his doctor. I read that external beam therapy is often used with brachytherapy; I assume that would help to lower the potential for cold spots?

My dad and I picked up Strum and Pogliano's primer on prostate cancer, and we're hoping to learn more about "TomoTherapy Hi-Art System," which the book says is a new form of intensity modulated RT. Does anyone have experience with it or know more about it?

Our continued thanks to readers and everyone who has been posting. This has been an enormous help.

--Son1409

 
Old 06-13-2009, 08:03 PM   #13
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Re: Father diagnosed recently

Quote:
Originally Posted by Son1409 View Post
...
My dad and I picked up Strum and Pogliano's primer on prostate cancer, and we're hoping to learn more about "TomoTherapy Hi-Art System," which the book says is a new form of intensity modulated RT. Does anyone have experience with it or know more about it?
...--Son1409
Hi again,

Your dad is in luck because he lives near Annandale, Virginia, and Inova Fairfax Hospital's outpatient center (intersection of Arlington Boulevard and Prosperity) has one of the TOMO therapy units in the country. Obviously the hospital's radiation department can provide a lot of information about it. At least one man in the local support group has had TOMO therapy, and another is now having it. Both have been pleased with their experiences.

I've seen the facility, and it is beautiful - more like a resort setting than a radiation facility, including fine wood, a comfortable waiting area, and a relaxing decor. Then you turn a corner, and there is the machine in all its glory.

The Prostate Cancer Research Institute has published information about it too, and of course www.pubmed.gov has details from formal papers that have been published.

As I recall talks about it, it's a lot like IMRT, but the planning can be done much faster, which is quite an advantage. It also has aiming capabilities that are superior to most IMRT facilities, and it can aim the beam from many different angles. That helps both with targeting the cancer and with reducing the risk of side effects.

It's still quite new in most places - only a year, two or three old. But because it is so much like IMRT, the great volume of research that has been done with IMRT applies. It's neat technology!

Please share what your dad learns about it.

Take care,

Jim

 
Old 06-15-2009, 08:59 PM   #14
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Re: Father diagnosed recently

Thanks Jim. Yes, it seems like a very promising procedure. Seems like it's very accurate in irradiating the prostate. One of the major upsides, as I understand it, is that it limits or avoids potential irradiation of nearby areas like the rectum, and also healthy tissue. The procedure is pretty expensive though, which I guess will keep it from becoming more common. I read that INOVA Fairfax hospital patients undergoing the procedure receive a daily CT to ensure highest possible accuracy.

Finally, there seem to be quite a bit of articles online debating the merits of tomotherapy v. cyberknife, thought I have to read up more on the latter.

Thanks,

--Son1409

 
Old 08-11-2009, 06:37 PM   #15
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Re: Father diagnosed recently

Hello everyone: I know I haven't posted in awhile, but I wanted to give a quick update. My father didn't feel comfortable with surgery and so decided to begin radiation treatments at the INOVA Fairfax Hospital in Virginia. He started the 1st of 43 Tomotherapy radiation treatments this past Monday. Aside from feeling tired, he hasn't experienced any side effects yet. I'll be sure to update you all about how he's doing. If anyone out there has any experience with Tomotherapy, it would be great to hear about those.

Thanks,

--Son1409

 
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