It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-13-2009, 10:58 AM   #1
Senior Member
(male)
 
Join Date: Feb 2009
Location: near Chicago
Posts: 249
kcon HB Userkcon HB User
PC, and I'm only 49!

New member of the "brotherhood." Just diagnosed from biopsy in Jan-09. Gleason 3+3=6. Heterogeneous, multifocal. No clinical evidence of spread via subsequent bone scan, CT and add'l blood testing.

RP (removal) seems to be the 'gold standard' for my age & circumstances, but I'm wondering how much of that is surgeons recommending surgery...because that's what they do. It seems a smaller number of people in my age & circumstances pursue one of the radiation solutions. My urologist tells me the biggest issue with radiation is that it merely suppresses the tumor for a while (years, typical might be 10 years), and at my age I will have to deal with it again later.

Would appreciate replies related to this (paragraph above).

Also, can someone explain to me what "heterogeneous, multifocal" means, and more importantly whether it is a factor for me choosing treatment options.

tks

 
Old 02-13-2009, 12:00 PM   #2
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: PC, and I'm only 49!

Hi kcon,

Welcome to our club! I'm sorry you had to join, but we do have fine members.

I'm inserting some comments in green below. Jim



Quote:
Originally Posted by kcon View Post
New member of the "brotherhood." Just diagnosed from biopsy in Jan-09. Gleason 3+3=6. Heterogeneous, multifocal. No clinical evidence of spread via subsequent bone scan, CT and add'l blood testing.

Those are good characteristics so far as most prostate cancer has more than one focus, but you really need to know more about your case.

Here are some more key pieces for you to put in place:

1. What "stage" is the cancer, and
2. Did the doctor add any comments about the results of the Digital Rectal Exam?
3. What is your current PSA and the date of the test?
4. What was the value of the previous two PSAs and their dates?
5. How many biopsy cores were positive?
6. For each positive core, what was the percent of the core that was positive, and what was the length of the cancer in each core in mm?
7. Did the biopsy report note any "tertiary" Gleason Grade 4 or Gleason Grade 5 cancer? (Usually the Gleason Score is reported with just the first two most prominent grades, but an increasing number of doctors is noting the appearance of any cancer with a grade higher than 3, especially if it is grade 5.)
8. What were the locations of the positive cores?
9. Did the biopsy report not any special comments, such as the absence (or presence of perineural invasion)?
10. Was the biopsy pathology work done by a general pathologist or a pathologist specializing in prostate cancer, or was the pathology reviewed and approved by such an expert?

This information will go a long way toward ruling certain therapies in or out as good bets.



RP (removal) seems to be the 'gold standard' for my age & circumstances, but I'm wondering how much of that is surgeons recommending surgery...because that's what they do.

Bingo! You have broken the code. Research was done some years back demonstrated that surgeons overwhelmingly recommend surgery, and radiation therapists overwhelmingly recommend radiation, for the same cases! In my opinion as a layman survivor of a challenging case for over nine years, now savvy but with no medical education, surgery can no longer be regarded as the gold standard. Instead it is one worthy option among several.

It seems a smaller number of people in my age & circumstances pursue one of the radiation solutions. My urologist tells me the biggest issue with radiation is that it merely suppresses the tumor for a while (years, typical might be 10 years), and at my age I will have to deal with it again later.

Translation of the last sentence: "I'm a surgeon, I don't do radiation, and I have a living to make." That statement is baloney, but with a basis, which unfortunately makes it even more misleading for the unwary.

The basis is that some years ago radiation therapists did not know the how to achieve best balance of enough radiation to give the best shot at cure versus not so much that there would be a high likelihood of side effects. As a result, doses of radiation now considered frequently inadequate were given to the prostate. Now, with advances in radiation, much higher doses can be reliably and safely given to the prostate and other nearby tissues at risk while at the same time achieving a lower incidence of side effects, such as to the rectum and bladder. For external beam radiation, the typical dose, depending on the patient, is 78 to 80 Gray, and that is enough to make it virtually certain that cancer in the prostate will not survive. Research has demonstrated that. Brachytherapy (seeds) can safely deliver an even higher dose.

The charitable view of what your doctor said is that he is not keeping up with developments outside his field, and keeping up is not easy. After all, as a urologist, he is having to adapt to a field that now features - practically demands - competence in laparoscopic or robotic surgery rather than in open prostatectomy, and that alone takes time and energy. But the uncharitable view is that your doctor is misleading you about non-surgery options. Either way, it appears you are not being well served by your doctor when the thinking goes beyond surgery.

There are some books with excellent coverage of options. I'm convinced the best general book is "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano. One of the best regarding radiation is by the team of Michael Dattoli, MD, Jennifer Cash, his chief nurse, and Donald Kaltenbach (very savvy survivor), "Surviving Prostate Cancer Without Surgery - The New Gold Standard that Can Save Your Life." Another book with some key chapters on radiation from other national experts is "The Prostate Cancer Treatement Book," edited by doctors, Grimm, Blasko and Sylvester, three experts in brachytherapy from Seattle. Dr. Gary Onik and his colleague Dr. Centeno wrote a book that gives excellent coverage of cryo surgery. Other participants on this board, including daff and viperfred, can give you leads to other therapies which they strongly advocate. I recommend you also give Active Surveillance a good look if you qualify; you could start with a thread I initiated (though far from my own therapy) entitled "Active surveillance - a sound option for truly low risk men."


Would appreciate replies related to this (paragraph above).

Also, can someone explain to me what "heterogeneous, multifocal" means, and more importantly whether it is a factor for me choosing treatment options.

Heterogeneous probably means there are several grades of cancer, though the Gleason 3+3 is puzzling if that is so. Multifocal means there is more than one site of the cancer in the prostate. That may or may not be a key factor.

Take care,

Jim


tks

 
Sponsors Lightbulb
   
Old 02-13-2009, 12:00 PM   #3
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: PC, and I'm only 49!

Quote:
Originally Posted by kcon View Post
.. Just diagnosed from biopsy in Jan-09. Gleason 3+3=6. Heterogeneous, multifocal. No clinical evidence of spread via subsequent bone scan, CT and add'l blood testing.

RP (removal) seems to be the 'gold standard' for my age & circumstances, but I'm wondering how much of that is surgeons recommending surgery...because that's what they do. It seems a smaller number of people in my age & circumstances pursue one of the radiation solutions. My urologist tells me the biggest issue with radiation is that it merely suppresses the tumor for a while (years, typical might be 10 years), and at my age I will have to deal with it again later.

...
While I was older, 64 in 2007 when diagnosed, there was a strong push by my urologist group to have me do surgery. I'm not sure that age plays a large part, although I suspect that there's a lot more concern in promoting surgery for those near 70 or more-- maybe more from the length of time to
heal/recover. But you're right- that's what they do. I was initially going to have robotic surgery and had actually reserved the date and surgeon, but for me, when I learned more about alternatives, I chose proton beam radiation because it is highly targeted and does minimal damage to nearby tissue. I was a Gleason 3+4, PSA 4, stage T1c.

I usually try to point out alternatives to surgery to people that ask, not because I want to recommend something else, but more so that others can
educate themselves and know they have a multitude of choices. I was surprised, not in a positive way, that certain doctors (can't label them all the same) definitely promoted what they did- and didn't even want to acknowledge that there are other choices. Each treatment has its own pros and cons, but there really is no one correct answer.

What I've been told about the likelihood of recurrence after proton beam radiation (and I suppose the same is true of other forms of radiation) is that the healthy cells become more resistant to cancer while the diseased ones
are eradicated.

While I briefly investigated brachytherapy (and that doctor seemed to have zero info on protons-- hard to believe if you're keeping up with your field of practice) but didn't seriously consider it because my prostate was a little enlarged. I really did my most research and due diligence on proton radiation, as I felt it offered the best form of radiation with regards to being highly targeted and effective and causing fewer side effects than other treatments. That's been the case for me so far, although I can't be counted in any study, since it's been less than 1 1/2 years since I finished.

Some of my diligence was emailing and speaking with over 20 past and a few then-current patients. There are thousands of names I could pick from to contact and I generally looked for those close to me in age, Gleason score, PSA, location- and those recently diagnosed who had either just begun or were soon to begin. One of these was a 50 year old who was leaning towards proton treatment, but in the end chose robotic surgery and is now doing well. Another person I've been in touch with, also 50, was going to do surgery, but after visiting University of Florida Proton Therapy Institute in Jacksonville and having an exam/consultation, he cancelled the
surgery appointment and will undergo proton treatment in March. So it does
become a very personal decision. Those who choose to rely on what someone else tells them without doing their own research may do well, but that's not my style.

I rambled on longer than I thought. I'd just suggest that you keep surgery on your list, but take the time to review other treatments, so that when you make your final decision, you'll really know it's right for you. By the way, the book that got me started on my proton route is by Robert Marckini, called You Can Beat Prostate Cancer and you don't need surgery to do it.
As one of several books, I'd recommend this, just so you can learn. Many
thousands have been treated, most at Loma Linda, California, where they've been doing this since 1990. Over the years, improvements have been made, and I believe I had the state of the art facility at Jacksonville. New centers are in the process of being completed, one for late this year in Philadelphia at the Univ of Pennsylvania which will be the largest to date.

There is some considerable knowledge on this board, and I'd recommend that you do some keyword searching to look into recent and older posts.
Good luck as you try to make sense of all this.

 
Old 02-14-2009, 06:33 AM   #4
Senior Member
(male)
 
Join Date: Feb 2009
Location: near Chicago
Posts: 249
kcon HB Userkcon HB User
Re: PC, and I'm only 49!

IADT3since2000 and daff, thank you so much for your replies.

IADT3since2000, I have listed more biopsy details in response to your further inquiry, below, and would be interested in your helpful interpretation of each, and when taken as a whole.

tks again,
kcon


Here are some more key pieces for you to put in place:

1. What "stage" is the cancer....T1c

2. Did the doctor add any comments about the results of the Digital Rectal Exam?....Nothing felt (I think that's the "c" part of T1c

3. What is your current PSA and the date of the test?....My first-ever PSA in Nov08 was 4.1, which led to biopsy in Jan09. Add'l blood testing in late-Jan 2 showed PSA of 10 (2 weeks after biopsy).

4. What was the value of the previous two PSAs and their dates?....Nov-08 was first-ever

5. How many biopsy cores were positive?....Looking at my Bostwick report, but not 100% sure I'm interpreting correctly. I believe there were 6 needle biopsies. Two say "Benign prostatic tissue." Three say "1 of 2 cores contain cancer." One says "1 of 3 cores contain cancer."

6. For each positive core, what was the percent of the core that was positive, and what was the length of the cancer in each core in mm?....Of the four that were not benign, the percentages were: 4%, 10%, 20%, and 20%. Not exactly sure how to best summarize the table of lengths, but shortest was 0.3cm, longest was 1.7cm (range 1.4cm). The mean (avg) was 1.32cm, the median was 1.45cm, and the mode (most frequently occuring value) was 1.7cm.


7. Did the biopsy report note any "tertiary" Gleason Grade 4 or Gleason Grade 5 cancer? (Usually the Gleason Score is reported with just the first two most prominent grades, but an increasing number of doctors is noting the appearance of any cancer with a grade higher than 3, especially if it is grade 5.)....All four non-benign were a Gleason score of 3+3=6

8. What were the locations of the positive cores?....The two non-benign cores were at the (L,R) base

9. Did the biopsy report not any special comments, such as the absence (or presence of perineural invasion)?....No special comments

10. Was the biopsy pathology work done by a general pathologist or a pathologist specializing in prostate cancer, or was the pathology reviewed and approved by such an expert?....Bostwick Labs, which I have read is a top Prostate biopsy reviewer (mine specifically signed by Richard Roberts, MD, PhD).

This information will go a long way toward ruling certain therapies in or out as good bets.

 
Old 02-14-2009, 09:19 AM   #5
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: PC, and I'm only 49!

Hi again kcon,

I'm inserting some replies in blue, but generally that report looks quite favorable. Keep in mind though that I have never had enrolled medical education. Jim


Quote:
Originally Posted by kcon View Post
IADT3since2000 and daff, thank you so much for your replies.

You're welcome. Glad to help.

IADT3since2000, I have listed more biopsy details in response to your further inquiry, below, and would be interested in your helpful interpretation of each, and when taken as a whole.

tks again,
kcon


Here are some more key pieces for you to put in place:

1. What "stage" is the cancer....T1c

Excellent; consistent with low risk.

2. Did the doctor add any comments about the results of the Digital Rectal Exam?....Nothing felt (I think that's the "c" part of T1c

Excellent, consistent with low risk.

3. What is your current PSA and the date of the test?....My first-ever PSA in Nov08 was 4.1, which led to biopsy in Jan09. Add'l blood testing in late-Jan 2 showed PSA of 10 (2 weeks after biopsy).

That's a fairly low PSA number and fits in with an overall picture of low risk cancer, especially in the important context that the Gleason Score did not exceed 6, had no "tertiary" grade 4 or 5 cancer, and was done by an excellent pathology facility.

4. What was the value of the previous two PSAs and their dates?....Nov-08 was first-ever

I know the feeling. My first ever led directly to my biopsy a few days later, but my PSA was extremely high and the biopsy results were not so great.

5. How many biopsy cores were positive?....Looking at my Bostwick report, but not 100% sure I'm interpreting correctly. I believe there were 6 needle biopsies. Two say "Benign prostatic tissue." So that is 2 Three say "1 of 2 cores contain cancer." Probably 3 X 2 cores for a total of 6 cores, for a cumulative total of 2 + 6 =8, so far. One says "1 of 3 cores contain cancer." Probably 1 positive of 3 more cores, for a cumulative total of 2 + 6 +3 = 11 total cores.

It's important to get a clear understanding of the number and percent of positive cores. I think what you are seeing is more than one core taken in each of six areas. It seems clear that four of the cores were positive, and it looks to me like you had eleven total cores as indicated above. That is consistent with typical modern practice, but I suggest you call the Bostwick Lab and have that confirmed.

6. For each positive core, what was the percent of the core that was positive, and what was the length of the cancer in each core in mm?....Of the four that were not benign, the percentages were: 4%, 10%, 20%, and 20%.

Those numbers are good if not excellent for percentage, and my recollection is that 4 cores positive of 11 taken, while not great, is not bad either, leaving your options open. That's worth clarifying with a doctor, or several doctors to get their opinions of the overall picture, especially if you consider Active Surveillance, which looks like a viable option to me for you (as well as all of the other options).

Not exactly sure how to best summarize the table of lengths, but shortest was 0.3cm, longest was 1.7cm (range 1.4cm). The mean (avg) was 1.32cm, the median was 1.45cm, and the mode (most frequently occuring value) was 1.7cm.

Those look like the lengths of the cores themselves, rather than the lengths of the cancerous parts. Otherwise, even for the shortest, .3cm, and assuming the least cancer, 10%, .3/.1 = 3 cm for the core length, which is well beyond the typical length, as I understand it. On the other hand, if you know the core length and the percentage of cancer, you can calculate the length that is cancer. So can a savvy doctor, and for this piece of information, to me it is the doctor more than us patients who need to know. Check this out with the lab so you can provide the data to any doctor who needs it. Probably he would know how to interpret the Bostwick report. Some doctors use all of these statistics (not just core length) to check your case against their formulas for success for different options.

7. Did the biopsy report note any "tertiary" Gleason Grade 4 or Gleason Grade 5 cancer? (Usually the Gleason Score is reported with just the first two most prominent grades, but an increasing number of doctors is noting the appearance of any cancer with a grade higher than 3, especially if it is grade 5.)....All four non-benign were a Gleason score of 3+3=6

I'm almost sure that Bostwick Laboratories would have noted this as a matter of routine, but call the office to confirm that. The absence of grade 4 or 5 cancer is another important base to touch, and you have a good result, if confirmed.

8. What were the locations of the positive cores?....The two non-benign cores were at the (L,R) base

That's good, because the prostate capsule is thicker at the base, so it is harder for cancer to escape. The capsule is thin at the apex, so that would not have been as favorable a location.

9. Did the biopsy report not any special comments, such as the absence (or presence of perineural invasion)?....No special comments

That's another base touched with favorable results.

10. Was the biopsy pathology work done by a general pathologist or a pathologist specializing in prostate cancer, or was the pathology reviewed and approved by such an expert?....Bostwick Labs, which I have read is a top Prostate biopsy reviewer (mine specifically signed by Richard Roberts, MD, PhD).

The Bostick pathology unit is very highly regarded, though some doctors I know prefer to have Dr. Bostwick look at the specimens himself. Still, I believe you have a reliable report. The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," has a chart in the appendix for forms where you can plug in the biopsy information. It's on pages F5 and F8. I just noticed that it also includes a PSA density calculation. That's good to know also.

This information will go a long way toward ruling certain therapies in or out as good bets.
My impression as a savvy layman is that the biopsy report, with your other information, leaves all options open to you. That specifically includes the option of Active Surveillance with deferral of therapy, perhaps aided by life style tactics (nutrition/supplements/diet, strength and aerobic exercise, and stress reduction) and/or mild medications such as finasteride (formerly Proscar but now generic), Avodart, and a statin drug (persuasive but not yet conclusive evidence of marked reduction in lethal prostate cancer. (Those tactics appear wise for all of us, even if not pursuing active surveillance.) Most major active surveillance programs would be concerned about your age, but one of the leading programs, overseen by Dr. Laurence Klotz in Toronto, is comfortable with patients of any age, provided they have cases that are low enough in risk and that they are monitored carefully, including at least one follow-up biopsy, at about the first year point as I recall. You don't have to be in the Toronto program, or in any of the other programs, to take advantage of their approaches; you just need a doctor who is willing and able to take advantage of the lessons they have learned.

Many men cannot stand the thought of living with an untouched prostate cancer even if it appears to be indolent and likely to stay that way - the abhorrence factor, or they would rather risk the side effects to have a strong likelihood of eliminating the cancer in one fell swoop. Fortunately many good therapeutic options are available for such patients. While the overall recurrence rate for surgery, for example, is around 30% after many years (my recollection is around 15 years of follow-up), recurrence for cases like yours is extremely low, probably in the range of 1% to 2%. (Also, even for that unlucky 30%, many of those recurrences are so mild that the need for additional therapy is questionable.) Other forms of therapy also have extremely high success rates for cases like yours.

Still, the blessing of so many options is also a burden . I hope you will be able to work your way through to choosing an approach without too much trouble, and those of us on the board will certainly be here to help.

Take care,

Jim
Please

 
Old 02-14-2009, 11:19 AM   #6
Senior Member
(male)
 
Join Date: Feb 2009
Location: near Chicago
Posts: 249
kcon HB Userkcon HB User
Re: PC, and I'm only 49!

Thanks, again, for your layman analysis (noting your reminder that you are not an MD). I am going up a steep learning curve, and this all helps a lot. Have also read many other threads on this board.

As I read your most recent reply, I realized one typo I made in Q#8:
You wrote: 8. What were the locations of the positive cores?
I wrote: The two non-benign cores were at the (L,R) base
You wrote: That's good, because the prostate capsule is thicker at the base, so it is harder for cancer to escape. The capsule is thin at the apex, so that would not have been as favorable a location.
My response should have said: The two benign cores were at the (L,R) base.

Given your explanation that the prostate capsule is thicker at the base and thinner at the apex (thus more risk to "escape" at the apex), this result is not so favorable.

Regarding the unclarity/uncertainty of the cancer length I think I did read core lengths, but in re-reviewing the report am not seeing anything that reads like cancer length.

Have checked today for availability of "A Primer on Prostate Cancer - The Empowered Patient's Guide." None found in local bookstores and so I have ordered online. This looks like a great first step for me. There certainly is also a ton of info online, but this looks like a comprehensive book...can get overwhelmed by random searches on Google.

thanks
kcon

 
Old 02-14-2009, 11:50 AM   #7
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: PC, and I'm only 49!

While you're ordering that book, it might be worth your while to add another-- "you can beat prostate cancer" by Marckini. (Would be good of you to share your thoughts on the various books you read so others can gain some perspective on these.)

 
Old 02-16-2009, 10:10 AM   #8
Senior Member
(male)
 
Join Date: Feb 2009
Location: near Chicago
Posts: 249
kcon HB Userkcon HB User
Re: PC, and I'm only 49! CHICAGO

Have ordered both books.

Anyone here have knowledge and/or experience with top specialists in the CHICAGO area? I am looking to make a short list for second opinions.

tks

 
Old 02-16-2009, 03:27 PM   #9
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: PC, and I'm only 49!

Hi kcon,

I'm inserting responses in green.


Quote:
Originally Posted by kcon View Post

...My response should have said: The two benign cores were at the (L,R) base.

Given your explanation that the prostate capsule is thicker at the base and thinner at the apex (thus more risk to "escape" at the apex), this result is not so favorable.

That may be the case, but it depends on where those other cores were. They may have been in the middle area. Did the biopsy report say? If not, you could call and see if you can get additional information.

Regarding the unclarity/uncertainty of the cancer length I think I did read core lengths, but in re-reviewing the report am not seeing anything that reads like cancer length.

Since you know the core length, you can multiply by the percentage of cancer to get the length that is cancer for each core, then add it for a total.

Have checked today for availability of "A Primer on Prostate Cancer - The Empowered Patient's Guide." None found in local bookstores and so I have ordered online. This looks like a great first step for me. There certainly is also a ton of info online, but this looks like a comprehensive book...can get overwhelmed by random searches on Google.

Amen to that! Navigating is key for new patients trying to cope with the flood of available information, and the Primer is a big help with that, not only the text, but the forms section and index as well. By the way, the book uses a high quality paper that is great for rendering all the numerous images and graphics, but it is not so great at absorbing ink, and pencils tend to smear. For notes, I've found that Pilot Precise V5 Extra Fine pens are best, but even then I use kleenex to blot the ink. Believe, me, I've gone through quite a few of those pens in making notes in my copy of the Primer!

If you have questions about information in the Primer, I probably have answers.

thanks
kcon
You're welcome, and take care,

Jim

 
Old 02-16-2009, 04:41 PM   #10
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: PC, and I'm only 49! CHICAGO

Quote:
Originally Posted by kcon View Post
Have ordered both books.
...
Good to know that. Hope you post some thoughts afterwards to help
others know what's interesting and what's not. I think you'll find both of
these helpful.

The Marckini book discusses various choices but ultimately advocates one specific treatment form (protons) while the Primer should be good for a useful and complete overview.

It was the Marckini book that got me on the road to proton therapy
in Jacksonville. (And I know that's a good ways from Chicago, but two
of those getting treatment at the same time as I was, and with whom I became friendly, were from Chicago and New Jersey, respectively.)

 
Old 02-17-2009, 08:54 PM   #11
Senior Member
(male)
 
Join Date: Sep 2008
Location: Irvine,CA
Posts: 141
dale2035 HB User
Re: PC, and I'm only 49! CHICAGO

Quote:
Originally Posted by kcon View Post
Have ordered both books.

Anyone here have knowledge and/or experience with top specialists in the CHICAGO area? I am looking to make a short list for second opinions.

tks
Hi,
It has been a few decades since I was in the Chicago area. I have family there. If I were back there, I would check out the Radiation Oncology Consultants headquartered in Park Ridge. They provide care, as you probably know, at multiple locations in the Chicago area. I have been impressed that they have been involved with the proton therapy center under construction in the western suburbs. With all the treatment options they have available, they are aggressively working to add the proton therapy. Those plants are difficult and expensive to build. That plant (and the other nine miles away)will not be open until 2010, but these physicians know about that and have an awareness of patients who would benefit from that that procedure. You are probably already acquainted with the group (largest in Illinois) and are looking for patients who have actually been treated there. I have no experience with them. The web site is chicagocancer.com. Good luck. It looks like my old neighbors and family have good resouces.
Dale

 
Old 02-18-2009, 10:33 AM   #12
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,730
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: PC, and I'm only 49! CHICAGO

Quote:
Originally Posted by kcon View Post
Have ordered both books.

Anyone here have knowledge and/or experience with top specialists in the CHICAGO area? I am looking to make a short list for second opinions.

tks
Hi again kcon,

Here are some more second opinion options. They are on a list maintained by the Prostate Cancer Research Institute, which is headquartered in the LA area. PCRI's location means they have more in-depth knowledge of the West Coast, but they also have many listings for other areas of the country.

Medical Oncologist
Daniel Shevrin
Evanston Northwestern Kellogg Cancer Center
2650 E. Ridge Ave., Evanston, IL 60200
847-570-2110


Radiation Oncologist, ProtaScinct
Michael Blend
University of Illinois
Chicago, IL
312-996-3966


Radiation Oncologist (Neutron)
Jeffrey Shafer
Midwest Institute for Neutron Therapy at Fermilab
P.O. Box 5004, MS.301, Batavia, IL 60510-0500
630-840-3865

Urologist
William J. Catalona
Professor of Urology, Northwestern University Feinberg School of Medicine
675 N. St. Clair, Suite 20-150, Chicago, IL 60611
312-695-8146

Urologist
Gerald Chodak
Midwest Prostate & Urology Health Center
Weiss Memorial Hospital
4646 North Marine Drive
Fifth Floor, Suite #A5500
Chicago IL 60640
773-564-5006

The only one I know of who is extremely well known is Dr. Catalona. He is practically the dean of American urologists, is known as an outstanding surgeon, and was and is one of the foremost researchers involving PSA, though he has other research concerns as well. He had a long time practice at the Washington University in St. Louis before moving to Northwestern. Incidentally, he is one of the very few top urologists who is not impressed with the active surveillance option, so if you go to him and ask him about that, you'll get a devil's advocate opinion.

I've also heard of Dr. Chodak, but I don't recall much about him.

Based on PCRI's reputation, I imagine that all of these doctors are very good. That does not mean they are perfect, nor that they have a firm and up-to-date grasp of therapies outside their own specialties, nor that they have no blind spots or strong biases.

The massive Us Too International prostate cancer support and education organization is headquartered in Illinois, and so they too probably have recommendations for the Chicago area, or have support group chapters in the area where you could get good local knowledge.

Jim

Last edited by IADT3since2000; 02-18-2009 at 10:36 AM. Reason: Added paragraph about Us Too's headquarters in Illinois and their local knowledge.

 
Old 02-18-2009, 03:44 PM   #13
Veteran
(male)
 
Join Date: Aug 2006
Location: NJ,USA
Posts: 362
shs50 HB User
Re: PC, and I'm only 49!

With the greatest of respect for Jim's knowledge and comments, I will take a strong contrary position in supporting the surgery option for a man of your age and with your very favaorable clinical picture. I agree that surgery is the gold standard regardless of the considerable progress made with the radiation therapies, in particular the Proton Beam.
However that being said great progress has also been made in the techniques used to perform the Radical Prostatectomy with the laparoroscopic and robotic procedures. These newer methods minimize recovery time to a few days, almost completely eliiminate blood loss, which is considerable with open prostatectomy and dramatically reducing infection risk which is present with any invasive procedure.
Most importantly at your age as you point out, only surgery can provide a true cure whereas the other options can only provide long term control.While the proponents of Proton Beam therapy claim that a cure is possible, there is no 20 year or longer data to support the claim whereas such long term evidence is available with surgery.
At age 49 I would want more than 10 or 15 years of evidence of a complete cure and if the surgery should fail in that regard the fall back option of primary radiation is still available. If radiation fails, primary surgery is no longer possible and only salvage surgery is available.
Lastly, one of the seldom mentioned advantages of the surgery option is that that its a single treatment and is over in a few days whereas primary radiation treatment requires many weeks of treatment and usually hormone suppressive treatment in preparation. Another major advantage of surgery not available with radiation or hormone therapy is the information gained from the post surgical pathology and regional lymph node dissection which definitively determines whether all magins were cleared and whether the cancer had spread to any lymph nodes in which case follow up radiation would be used to eradicate any regional metastases.
I would under no circumtances recommend active surveillance or watchful waiting for someone as young as you since the cancer will ultimately have to be dealt with a few years down the road and there's no good reason to risk losing the window of opportunity
for an optimal outcome, i.e a complete cure to defer for a few years during which you'll need very intense monitoring and at least an annual biopsy.

 
Old 02-18-2009, 05:31 PM   #14
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: PC, and I'm only 49!

Quote:
Originally Posted by shs50 View Post
...
Most importantly at your age as you point out, only surgery can provide a true cure whereas the other options can only provide long term control.While the proponents of Proton Beam therapy claim that a cure is possible, there is no 20 year or longer data to support the claim whereas such long term evidence is available with surgery.
...
Lastly, one of the seldom mentioned advantages of the surgery option is that that its a single treatment and is over in a few days whereas primary radiation treatment requires many weeks of treatment and usually hormone suppressive treatment in prep....
My take is that most of the alternatives, if administered properly, will provide similar results. We don't have control groups vs surgery vs proton so this is still a debatable statement I realize. You said that hormone suppression is usually required before radiation-- that certainly was not the case with me or most everyone I met while I underwent my proton treatment regimen. You're correct that it takes much more time, but then
again, I didn't have to worry about possibly falling into the small fraction of men who really have severe side effects from surgery.

Men who have surgery can find that cancer comes back, just as with almost any other treatment form-- in many cases it probably wouldn't have mattered what form of treatment one had previously. So yes, you can have a complete cure, but it's not a guarantee, and yes, incontinence and impotence may be relatively short lived, but no guarantee there either.

So I think we're all just trying to put the various alternatives on the table for new patients to consider. Each will have his own comfort (or discomfort) zone, and hopefully will make the best decision to fit his situation.

 
Old 02-18-2009, 07:26 PM   #15
Senior Member
(male)
 
Join Date: Feb 2009
Location: near Chicago
Posts: 249
kcon HB Userkcon HB User
Re: PC, and I'm only 49!

First of all, IADT3since2000 (Jim), daff, shs50, dale2035, (and others who have read this thread) thank you all so much for your time, interest and concern. I've incrementally learned from each one of you. I'm still just 37 days since my initial diagnosis, and 16 days since my CT/bone scan/blood tests ending in T1c stage clinical diagnosis, and still going up learning curve.

I received the "You Can Beat PC" book today, and am expecting the "Primer" book tomorrow. I've read some very good & informative papers, and I've gotten to the point where I'm looking up the terms I don't understand, whereas at first I would just skip over them. For example, Jim, you asked me last week about any comment on "perineural invasion" in my biopsy report. That was a skip-over term last week, and one I looked up this week when I found it used repeatedly in the reports on nerve-sparing techniques; for example that "perineural invasion on needle biopsy correlates strongly with capsular penetration...".

I have not excluded proton beam, and am learning more about it here and in book (I have ruled out watchful waiting & hormones), but my line of thinking has been closely aligned with the points shs50 touched upon. Still in learning & listening mode. I have my first 2nd opinion scheduled for Friday with a doctor at Univ of Chicago with experience with Da Vinci. If surgery ends up being my route, I still have not decided whether to go open or Da Vinci...if I do go surgery, I may choose depending on depth of experience in a doctor that I can schedule, irrespective of method.

Thank you all, again.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Retin-a-micro success stories.... Dom Acne 2 01-18-2003 07:06 AM
Rules of the Board - please read moderator2 Acne 0 06-10-2002 08:06 PM
If you feel suicidal, please read here.... moderator2 Acne 0 05-29-2002 06:54 PM
All members..... moderator2 Acne 2 05-16-2002 08:18 PM
How to use this message board.... moderator2 Acne 0 04-17-2002 07:33 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Casodex
Cialis
Cipro
Flomax
Levaquin
  Levitra
Morphine
Proscar
Tylenol
Viagra




TOP THANKED CONTRIBUTORS



Tall Allen (174), IADT3since2000 (148), Baptista (97), Gleason9 (28), harpman (27), Johnt1 (22), honda50 (9), tumbleweed (6), flyfisher37 (6), kcon (5)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), midwest1 (668), sammy64 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 09:11 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!