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



Family & Friends of Cancer Patients Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-16-2008, 05:28 PM   #1
Newbie
(female)
 
Join Date: Feb 2008
Location: san francisco,ca,USA
Posts: 5
Newgurl2772 HB User
Treatment options????

Posted: Sat Feb 16, 2008 3:08 pm Post subject: Treatment Options

--------------------------------------------------------------------------------

Hello to all.
My father was recently diagnosed with prostate cancer. Here are the biopsy results. PSA 11 that is why he had the biopsy. previous PSA of 7. I think the level increased over a period of 6 months?? not sure. 8 samples taken. of that 8 only one was positive. 16% gleason scale of 6(3+3). tumor can not be felt on physical exam. biopsy only done because of increased PSA. positive only on one side. my dad states that the physician circled stage 3 in the "pamphlet" however when I spoke to physciain he stated the stage/grading as 2T1a. I am still a bit confused about grading. but I feel that the cancer has been caught early on so he has a good prognosis.
My concern is on treatment. should we do, seeds alone or seeds with radiation, surgery??? my Father is leaning more towards seeds. the surgery my bit a bit much for his life style. he is 67 years old. in farily good health. loves the outdoors and is very active.
I want to make him as informed as possible so that he can choose the best treatment for long term survival with great quality of life.
Any advice would be greatly appreciate.
God bless to everyone

 
Sponsors Lightbulb
   
Old 02-16-2008, 07:06 PM   #2
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: Treatment options????

Quote:
Originally Posted by Newgurl2772 View Post
Posted: Sat Feb 16, 2008 3:08 pm Post subject: Treatment Options

--------------------------------------------------------------------------------

Hello to all.
My father was recently diagnosed with prostate cancer. Here are the biopsy results. PSA 11 that is why he had the biopsy. previous PSA of 7. I think the level increased over a period of 6 months?? not sure. 8 samples taken. of that 8 only one was positive. 16% gleason scale of 6(3+3). tumor can not be felt on physical exam. biopsy only done because of increased PSA. positive only on one side. my dad states that the physician circled stage 3 in the "pamphlet" however when I spoke to physciain he stated the stage/grading as 2T1a. I am still a bit confused about grading. but I feel that the cancer has been caught early on so he has a good prognosis.
My concern is on treatment. should we do, seeds alone or seeds with radiation, surgery??? my Father is leaning more towards seeds. the surgery my bit a bit much for his life style. he is 67 years old. in farily good health. loves the outdoors and is very active.
I want to make him as informed as possible so that he can choose the best treatment for long term survival with great quality of life.
Any advice would be greatly appreciate.
God bless to everyone
Sounds like you're on the right path to be educating both you and your father- and this forum is one place to help. As you'll read in other, previous posts, we're not doctors but still have a lot to offer from our personal experiences and having gone through a lot of research ourselves.

If you read through earlier posts, you'll find out quite a bit. It's a good sign that the Gleason is 6. That should mean lower risk than many others at this point. There's probably time to learn what the options are before making an informed decision. The doctors will help, but there are many alternatives and ultimately the decision will be what seems best for your father.

I was a Gleason 7 and tested positive in one of 12 cores. PSA was around 4. I'm 64. I initially thought I would choose robotic surgery but made a complete turnaround after my "due diligence" led me to a form of radiation, proton beam therapy, that is effective without as many side effects as other treatment forms. I learned of that from a book by Robert Marckini entitled You Can Beat Prostate Cancer. Then I spoke with or emailed about 25 past/current patients. It takes a couple months of non-invasive, daily treatments (five days a week) - I went to University of Florida Proton Therapy Institute in Jacksonville, but the center that's been doing this the longest is at Loma Linda, California. (They've treated close to 10,000 prostate cancer patients since 1990- you'll be hearing a lot more on this form of treatment as several large facilities are in the planning or construction stage right now, with the world's largest set to open at Univ of Penn in 2009.)

There are certainly other types of radiation and seeds, with or without a radiation boost, and of course surgery. It won't take too long to get up to speed with some of the alternatives- but you'll have to do some reading and talking. One book that covers many choices, with a leaning towards surgery, is Patrick Walsh's 2007 updated book, Guide to Surviving Prostate Cancer. There are certainly many others, but this is a start. If you look at Amazon's site, there will be a lot of book choices, and reading the readers' comments will help too (although we're often biased by the personal choices we ultimately made).

You'll all get through this, with hopefully excellent results. Keep us posted and ask as many questions as you want.

 
Sponsors Lightbulb
   
Old 02-16-2008, 07:57 PM   #3
Newbie
(female)
 
Join Date: Feb 2008
Location: san francisco,ca,USA
Posts: 5
Newgurl2772 HB User
Re: Treatment options????

Thank you for the reply. I see that you are from North Carolina. May I ask if you research Duke Medical Center and UNC Chapel Hill medical center as treatment options locations?
Support is key in times such as this. I have only begun to research treatment options and I am finding hope that my Dads disease was caught early on. It would appear to me that given his status both treatment options of surgery vs radiation appear to have very similiar success rates. Guess the depending fact is what side effects my father is willing to live with. Also I want to choose a treatment that leaves the door open for addition treatment if need be. for example having surgery, and if the cancer returns being able to have Radiation. I am under the impression that it is not possible to have surgery after radiation.
For those men that have similiar cases as my Dad and have had seed implantation and for those that have had surgery. what has your experience been??

Last edited by Newgurl2772; 02-16-2008 at 08:00 PM.

 
Old 02-16-2008, 08:13 PM   #4
Veteran
(male)
 
Join Date: Jun 2007
Location: Philadelphia, PA USA
Posts: 358
able5 HB User
Re: Treatment options????

Dear Newgurl2772,

As is usual, daff nailed it down pretty well. Why am I not surprised? I guess, at this early point in your father's journey, there's not too much I can add to what daff said except this...

While it's wise to always be proactive, a Gleason 6 score gives you some time to do some serious research regarding all of the treatments that your doctor says are available to you. Remember, your doctor could be somewhat biased toward the treatment that he, his partners and his associates are trained to deliver. I would suggest that you give objective consideration to all of the treatments outlined in the books that daff mentioned. That may include 2nd and 3rd opinions from other doctors who are trained in other forms of treatment. This is why you sometimes read members on this forum saying, "You need to take charge of your health care". It's up to you to find the treatment that suits your comfort level.

I hope you will keep posting your progress on this forum and keep us updated as you begin your prostate cancer journey. As we share our experiences with you, we could help to make this process easier.

By the way, I have no first hand experience in radiation and the possibility of having surgery after radiation, however, I've read where surgery after radiation is quite possible but requires a surgeon with specialized training in this method and it's a much more difficult procedure. I'm hoping that someone on this forum with first hand experience about this particular issue could add their comments.

__________________
robotic LRP; Jan2007

Last edited by able5; 02-16-2008 at 08:22 PM.

 
Old 02-16-2008, 08:21 PM   #5
Newbie
(female)
 
Join Date: Feb 2008
Location: san francisco,ca,USA
Posts: 5
Newgurl2772 HB User
Re: Treatment options????

Thank you for the reply. I will keep updating as I find out new information

 
Old 02-16-2008, 08:56 PM   #6
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: Treatment options????

Quote:
Originally Posted by Newgurl2772 View Post
Thank you for the reply. I see that you are from North Carolina. May I ask if you research Duke Medical Center and UNC Chapel Hill medical center as treatment options locations?
Support is key in times such as this. I have only begun to research treatment options and I am finding hope that my Dads disease was caught early on. It would appear to me that given his status both treatment options of surgery vs radiation appear to have very similiar success rates. Guess the depending fact is what side effects my father is willing to live with. Also I want to choose a treatment that leaves the door open for addition treatment if need be. for example having surgery, and if the cancer returns being able to have Radiation. I am under the impression that it is not possible to have surgery after radiation.
For those men that have similiar cases as my Dad and have had seed implantation and for those that have had surgery. what has your experience been??
Able and I form an informal union of two on this board- we seem to give similar advice.

In response to one of your questions, I didn't consider Duke or UNC, but hear that there are excellent facilities there. Once I was on the proton bandwagon, I was limited to one of five facilities, Loma Linda, California (initially my first choice), Jacksonville, Mass General, Anderson in Texas, and a facility in the midwest. Loma Linda and Jacksonville specialize more in the prostate and after my consultation in Jacksonville, I cancelled what was to be a consultation in California, since I was so pleased with what I saw and learned. That's when I made the mental switch away from surgery.
At one point, I felt like I could toss a coin, but when I decided I wanted to go the proton route for sure, I had no doubts that was the choice for me. For others, that choice could be surgery or something else.

As far as picking a treatment because of what can be done afterwards-- I wanted a plan that I deemed the best way first. The reason that some get radiation following surgery is because the surgery didn't remove all the cancer cells on the edges. One of the reasons I chose proton radiation to begin with, is because a very specific plan is created for each individual. In my case, there was some concern the the cancer was at the edge and close to the margin, so my treatment area was a little broader in that part.

When one treatment fails, it's possible that whatever one did would have similarly failed- because the cancer had already moved out of the prostate. So relying on the possibility of radiation after surgery, or skipping radiation because it's difficult to have surgery afterwards, is not, in my opinion, the way to analyze all this. But you'll be able to get lots of opinions on this.
(And all is not lost even if the initial treatment doesn't bring the expected results- there's control, often successful for many years, with some form of hormone deprivation treatment- but with an initial low-risk case, hopefully none of this is in the cards.)

The testing that I received as a prospective proton patient at Univ of Florida Proton Therapy Institute (UFPTI) was far better than what I would have received prior to the surgery that was initially scheduled for me (which was no testing). What I did get at UFPTI was an MRI, bone scan, chest x-ray, and planning CT scan. Others get more extensive tests. The standard MRI was not clear enough so I opted for a spectroscopic MRI at the nearby Mayo Clinic to provide more information.

But as was said previously, what's right for one person might not be right for another. Once enough reading and talking research has been done, and several doctors' opinions weighed, you should know what fits best.

 
Old 02-17-2008, 03:02 AM   #7
Senior Member
(male)
 
Join Date: Sep 2007
Location: Continental Europe (EU)
Posts: 172
tumbleweed HB Usertumbleweed HB Usertumbleweed HB User
Re: Treatment options????

As previous radiation (for another cancer) ruled out surgery in my case (though I had already decided brachytherapy / seeds was my preferred treatment treatment anyway) I did enquire why this was and was told that success rates of any surgery after radiation are reduced because of the long term damage to tissue caused by the radiation - which is why surgeons prefer not to risk their success statistics.

 
Old 02-17-2008, 07:40 AM   #8
Veteran
(male)
 
Join Date: Jun 2007
Location: Philadelphia, PA USA
Posts: 358
able5 HB User
Re: Treatment options????

Quote:
Originally Posted by Newgurl2772 View Post
Thank you for the reply. I will keep updating as I find out new information
I hope that you have realized so far in this dialog that there is quite an array of experienced guys, with first hand testimony, regarding three completely different forms of treatment for their condition. daff is our pioneer! He's like Columbus! Until he mentioned it, I never had any knowledge about his chosen treatment. Personally, I follow his posts and his journey with keen interest. I'm very excited about this therapy. Proton Beam Therapy is not yet a mainstream treatment. Why? In my opinion, it requires significant investment on the part of hospitals and clinics and that's why daff had to travel some distance to find a qualified medical center that decided to make this investment. As you begin your journey, I strongly suggest that you do a very serious study about proton beam therapy. As you read about it I'm sure you will share my opinion that it is a treatment that may revolutionize the way doctors treat this disease. From what daff posts, I get the impression that he's completely satisfied with his choice and his progress.

In my case, I had a pretty standard treatment, at least in the urban settings in the US. I had robotic LRP surgery and it has proved quite successful so far. You don't need to travel too far to find my type of treatment. Like your Dad, I was dx'd early and had relatively low numbers in the staging process. Initially, the post-op side effects were significant, at least in my case. I'm close to 13 months post-op and I can say that I'm virtually 100 percent recovered from those side effects. In my case, with such an early dx, I believe that I would probably have had very good results regardless of the treatment I chose because of the localized nature of my cancer. It seems that my cancer stayed within the prostate gland and had not yet spread outside. That's why we say that you are very fortunate to have dx'd this disease at such an early stage.

peter just had Brachy. Another relatively standard treatment, at least here in the US. He seems to be doing great so far, according to his posts. At times I count myself very blessed to have all of the care I need within a ten mile radius of my home. Not so with peter. He does not live in the US so he had to travel great distances to find the best care and treatment. Again, I follow his posts with great interest as he copes with his travel issues and his difficulties in finding the best care at home. He truly needs to be in our thoughts.

So, as you can see, you have three guys here with three completely different treatments to testify about. Isn't that great! My opinion, I think you've struck gold in your efforts to tap into a widely varied array of experience.

Keep posting...

__________________
robotic LRP; Jan2007

Last edited by able5; 02-17-2008 at 10:48 AM.

 
Old 02-17-2008, 12:07 PM   #9
Newbie
(female)
 
Join Date: Feb 2008
Location: san francisco,ca,USA
Posts: 5
Newgurl2772 HB User
Re: Treatment options????

I am very thankful for forums such as these. Not that I rely on them to what treatment path my Dad should take as very one is very different. However, hearing first hand experiences are a wonderful information source. I just brought Dr. Walsh's book, per daff's recommendation.
Thanks again to all that have posted. I really appreciate it.

 
Old 02-17-2008, 01:56 PM   #10
Senior Veteran
(male)
 
Join Date: Jul 2007
Location: North Carolina
Posts: 571
daff HB User
Re: Treatment options????

Quote:
Originally Posted by Newgurl2772 View Post
I am very thankful for forums such as these. Not that I rely on them to what treatment path my Dad should take as very one is very different. However, hearing first hand experiences are a wonderful information source. I just brought Dr. Walsh's book, per daff's recommendation.
Thanks again to all that have posted. I really appreciate it.
You should learn a lot from the Walsh book. I'll put in another plug for the Robert Marckini book entitled You Can Beat Prostate Cancer- that's the one on proton therapy that caused me to change my chosen treatment from surgery to that...
It's probably not in many bookstores, but is available via Amazon.
If you get it, I'd be curious to know what you think after reading it.

 
Old 02-17-2008, 03:47 PM   #11
Newbie
(female)
 
Join Date: Feb 2008
Location: san francisco,ca,USA
Posts: 5
Newgurl2772 HB User
Re: Treatment options????

yes I will check out that book as well.
Another question I would like to ask member is how common is it after diagnosis to get further scan(x-ray,ct.mri) to see if the cancer has spread. Just wondering because my Dad has not had any extra testing.
Dad's Info: PSA 11, Gleason 6 (3+3), T1c

 
Old 02-17-2008, 05:17 PM   #12
Veteran
(male)
 
Join Date: Jun 2007
Location: Philadelphia, PA USA
Posts: 358
able5 HB User
Re: Treatment options????

Quote:
Originally Posted by Newgurl2772 View Post
yes I will check out that book as well.
Another question I would like to ask member is how common is it after diagnosis to get further scan(x-ray,ct.mri) to see if the cancer has spread. Just wondering because my Dad has not had any extra testing.
Dad's Info: PSA 11, Gleason 6 (3+3), T1c
Please forgive my brevity, I'm trying my best not to ramble on about any treatments I've not personally experienced. That kind of drivel would be counter-productive, it would insult your intelligence and it would take up valuable server processing time on this forum. So, without further hearsay, here's my experience as it relates to your question. Short and sweet...

The day I was dx'd I was scheduled for a full body (nuclear) bone scan and a CT scan with contrast of my abdominal area. After deciding for robotic surgery, I was immediately scheduled for a cardiac echo stress test to be sure my heart was in shape to endure the general anesthesia and the procedure. Also, a few more DRE's followed and many more blood tests followed as well.

Hope this helps.
__________________
robotic LRP; Jan2007

Last edited by able5; 02-18-2008 at 03:31 PM.

 
Old 02-17-2008, 06:05 PM   #13
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: Treatment options????

Hello Newgurl,

Welcome to our group!

I'm going to intersperse some comments in green to add to the responses through 3:56 pm that you have already received.

Jim


Quote:
Originally Posted by Newgurl2772 View Post
Posted: Sat Feb 16, 2008 3:08 pm Post subject: Treatment Options

--------------------------------------------------------------------------------

Hello to all.
You happen to live very close to a couple of centers of excellence for prostate cancer. Does your dad live in San Francisco? Is he in North Carolina?


My father was recently diagnosed with prostate cancer. Here are the biopsy results. PSA 11 that is why he had the biopsy. previous PSA of 7. I think the level increased over a period of 6 months?? not sure.
That actually turns out to be quite important. I was present at one of the first times Dr. Anthony D'Amico presented his teams' research on the importance of the speed of increasing PSA in the year prior to diagnosis, and I saw how impressed a panel of experts was with the results. Those results have since been documented in two papers by his teams and have also been confirmed by at least one other research team. The bottom line: if the increase is greater than 2.0, it adds a risk factor to what is suggested by the Gleason, PSA level, and stage, as well as lesser indicators like the number of cores that are positive and the percent positive. However, even when the increase is greater than 2.0, when the cancer cannot be felt, patients still tend to have little extra risk. (This is as I understand the reports as a layman with no enrolled medical education. It would be something to confirm with a knowledgeable doctor - one who clearly is familiar with the D'Amico research.)

However, the PSA can be boosted by factors that do not involve cancer, and it is helpful to do our best to rule them out. For instance, an infection can boost the PSA a little or a lot.


8 samples taken. of that 8 only one was positive. 16%
Those are the kinds of results we would all like to have.

gleason scale of 6(3+3).
Do you know whether a general pathologist or a pathologist specializing in prostate cancer reviewed the biopsy samples? This is important because the Gleason Score is critical in decision making and general pathologists often make mistakes according to what specialists tell us, frequently undergrading the Gleason. My own Gleason went from a 3+4=7 to a 4+3=7 (not as good) when reviewed by an expert. It is quite possible to have the biopsy samples sent out for a second opinion. This is described in another excellent book for new patients and their supporters, "A Primer on Prostate Cancer -- The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, a medical oncologist specializing in prostate cancer, and Donna Pogliano. It's also recommended in a Walsh book I have from 2001 and no doubt also in your more recent book.

tumor can not be felt on physical exam. biopsy only done because of increased PSA. positive only on one side. my dad states that the physician circled stage 3 in the "pamphlet" however when I spoke to physciain he stated the stage/grading as 2T1a. I am still a bit confused about grading.
You should be; that information is somehow flawed. Your dad should follow up on that to determine what is what. "T1a" and "T1b" might apply when cancer is found by an operation like a TURP for BPH (enlarged prostate) - clearly not your dad's case; T1c is the stage for cancer that can't be felt but is found due to a PSA, which seems to fit your dad's case. T2 is only for cancers that can be felt. The Walsh book (and the Primer) go over this in more detail.

but I feel that the cancer has been caught early on so he has a good prognosis.
Yes!

My concern is on treatment. should we do, seeds alone or seeds with radiation, surgery???
All three appear to be reasonable options to us laymen on this board, but with different consequences. Memorial Sloan Kettering in New York City has publicized a formula for getting some kind of handle on the added benefit of external radiation in addition to the seeds, with the worth depending on the circumstances. There are several other options if you want to consider them, and they open up some quality of life possibilities. Daff has mentioned one of them.

my Father is leaning more towards seeds.
I did not have seeds but learned about that approach when I was choosing a therapy for myself; in fact, I wanted seeds as part of my therapy, but it was ruled out because the prostate cancer was too aggressive. I've followed developments since, and there are at least two excellent books by some of the experts in that approach. One is by Dr. Michael A. Dattoli, MD, a radiation oncologist, and his colleagues Cash and Kaltenbach, "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment that Can Save Your Life and Lifestyle," 2005. The Dattoli book talks about some special (but simple) tests like PAP (prostatic acid phosphatase) that help predict whether seeds will be effective. The other is "The Prostate Cancer Treatment Book", Dr. Peter D. Grimm, D.O., Dr. John C. Blasko, MD, and Dr. John E. Sylvester, MD (all from Seattle), 2004. It covers other therapies too, but there are one or two excellent chapters on their specialty, seed therapy.

the surgery my bit a bit much for his life style. he is 67 years old. in farily good health. loves the outdoors and is very active.
I want to make him as informed as possible so that he can choose the best treatment for long term survival with great quality of life.

It now appears that nutrition, diet, appropriate supplements, exercise and stress reduction can all do a lot to help our cause. All are important parts of my own program. However, though there is a lot of research suggesting effectiveness, we don't yet have "smoking gun" type proof.

You also asked about fall-back treatments if the initial treatments do not work. There are fall-back treatments that are often highly effective. Even radiation can at times be followed by followup radiation if performed by certain experts. Hormonal blockade therapy is another standard fall-back therapy for many other therapies. (Hormonal blockade has been the only therapy I've had for my case, considered incurable with current technology.)



Any advice would be greatly appreciate.
God bless to everyone

Personally, I believe that prayers also help.

Good luck to you and your dad.

Take care,

Jim

 
Old 02-18-2008, 04:57 AM   #14
Veteran
(male)
 
Join Date: Jun 2007
Location: Philadelphia, PA USA
Posts: 358
able5 HB User
Re: Treatment options????

Dear Newgurl2772,

daff provides very valuable first hand information based on his own personal experience and his own personal journey regarding proton beam therapy. Thankfully, he does not entertain hearsay or second hand information about this important treatment. I really appreciate him for staying focused on his personal journey and his personal recovery. It's only my opinion but I believe this new therapy holds quite a bit of promise for the future. By the way, as daff already mentioned, I'm excited to report that the Roberts Proton Therapy Center of the Hospital of the University of Pennsylvania recently received a 220-ton cyclotron from Belgium. You could say that this new proton therapy center is right in my back yard! The University of Pennsylvania Health System will soon house the largest proton therapy center in the world and one of only six such centers in the country. Expected to be open to patients in 2009, the Roberts Proton Therapy Center will be located in the Perelman Center for Advanced Medicine. It will also be the world's most comprehensive proton therapy center, offering the unique ability to fully integrate conventional radiation treatment with proton radiation. The center will have strong ties to Walter Reed Army Hospital in Washington, D.C.

I don't remember reading another post about a California proton facility so I'll mention it. There's a facility operated exclusively by the UC San Francisco Department of Radiation Oncology called the UC Davis Proton Facility. I wonder if they offer proton beam prostate cancer therapy at this facility?

Just curious, what do you think your doctor would say about the possibility of proton beam therapy?

__________________
robotic LRP; Jan2007

Last edited by able5; 02-18-2008 at 03:29 PM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Help! - TMJ treatment options tputbres TMJ Disorder -TemporoMandibular Joint 4 06-17-2010 01:53 AM
Prostate Cancer Treatment Options daff Cancer: Prostate 18 04-14-2009 06:25 AM
The Cyberknife? Has anyone used this form of treatment? Trace212 Brain Tumors 34 02-15-2009 10:38 AM
Latest migraine treatment advice - Jan 2008 studyin Inner Ear Disorders 0 03-25-2008 11:32 PM
Prostate Cancer Treatment Options Matrix jm2222 Cancer: Prostate 0 08-08-2007 08:29 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




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:12 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!