New Diagnosis
In the past six days I have read about half the prostate cancer books at Amazon.com downloaded to my Kindle, several clinical studies, many message boards (this seems to be the best), and lots of other relevant literature on the internet. (I've become obsessed!)
I was wondering how survivors here made their decision. It appears to me that many here favor the DaVinci surgery method but several studies I read showed no significant change in long term mortality rates between surgery, radiation, or watchful waiting. Many papers caution about over treating indolent cancers that would never be life threatening.
I'm feeling lots of pressure from my wife and family to DO SOMETHING! I am in the process of scheduling second opinions and consultations with a variety of nutritionists, urologists, oncology experts, and radiation specialists. Also have appointments with a Cyberknife center near me and also at Loma Linda Medical Center for proton therapy.
I have good insurance and am fortunate enough to have the ability to self pay if I was to be denied coverage on a treatment option.
Would appreciate any feedback from those who chose surgery over watchful waiting and how much of an impact family pressure may have had on their decision.
Thanks in advance.
Comments
-
Kongo,
First welcome to this
Kongo,
First welcome to this club that no one wants to join but glad you are here for support!
Second - Don't rush into treatment a 3+3 is very treatable and you have time to do your 'homework'. Read, study, ask questions, talk and get many opinions. This is the one time you get to pick your treatment options.
I can give Loma Linda high praise...my dad was treated there 14 years ago and still doing great. It was going to be my first choice but insurance would not pay for it.
How did I pick my treatment? By research and asking questions and of course prayer for me.
You didn't mention how old you are and of course that can play in the decision process.
For me I wanted to get the cancer out and have a back up plan and have a good chance at a healthy sex life following treatments. My stats were Gleason 4+3 pre surgery with 5 of 12 cores finding cancer. Also signs of perinural invasion. Some docs that I talked to gave me a low probability rate of being cancer free in 10 years...so for me to have a 'back up plan' was important. I'm now 7 months post Davinci surgery. Have been 99.9% dry since removal of the cath and have success using Levitra. From my diagnosis to actual surgery was right at 5 months.
Again good luck and keep asking those questions.
Larry age 550 -
My Husband
My husband was diagnosed three weeks ago and have done the process of where you are now. Sadly, when we went to Johns Hopkins on Friday of last week, we were informed that the prostate and cancer were much larger and more aggressive than told to us by a radiologist just two weeks prior.
Our doctor at JH said he was surprised that a radiologist would even consider doing seed implants with the status of his prostate. We have scheduled his surgery for April 27 and pray now that the cancer has not moved outside the wall of the prostate.
We have cried, prayed, and cried some more.
Know there are others who are walking in your shoes just a few baby steps ahead of you.
Sortie.0 -
sortieSortie said:My Husband
My husband was diagnosed three weeks ago and have done the process of where you are now. Sadly, when we went to Johns Hopkins on Friday of last week, we were informed that the prostate and cancer were much larger and more aggressive than told to us by a radiologist just two weeks prior.
Our doctor at JH said he was surprised that a radiologist would even consider doing seed implants with the status of his prostate. We have scheduled his surgery for April 27 and pray now that the cancer has not moved outside the wall of the prostate.
We have cried, prayed, and cried some more.
Know there are others who are walking in your shoes just a few baby steps ahead of you.
Sortie.
my hubbie is scheduled for surgery the same day as yours, 4/27. He is having DaVinci by Dr. Scott near Indianapolis.
I will keep you in my prayers along with my husband for good news status post surgery as far as the pathology goes.
Looks like our husbands are surgery buddies. Where in the country are you?0 -
Kongo sorry you have to be a member here
With that said...you sound like you are all over your situation. One thing puzzles me very much when you say no peirnueral invasion as I thought this was only determined once the prostate was removed and examined with the Post Op pathology report. I am curious how they are determining this.
Randy In Indy0 -
hellomrshisname said:sortie
my hubbie is scheduled for surgery the same day as yours, 4/27. He is having DaVinci by Dr. Scott near Indianapolis.
I will keep you in my prayers along with my husband for good news status post surgery as far as the pathology goes.
Looks like our husbands are surgery buddies. Where in the country are you?
We live in Alexandria, Va. and are going to Johns Hopkins for the surgery.
Let's do keep in touch.0 -
SortieSortie said:hello
We live in Alexandria, Va. and are going to Johns Hopkins for the surgery.
Let's do keep in touch.
My email address is snooksmama@Insightbb.com if you want to keep up with one another. How did they decide your husband's cancer was 'more aggressive'? What were his Gleason scores, and how many cores were positive? Just wondering about the technical aspects.
Is he having robotic or open surgery?0 -
Peirnueral Invasionrandy_in_indy said:Kongo sorry you have to be a member here
With that said...you sound like you are all over your situation. One thing puzzles me very much when you say no peirnueral invasion as I thought this was only determined once the prostate was removed and examined with the Post Op pathology report. I am curious how they are determining this.
Randy In Indy
Randy, my biopsy report indicated "perineural invasion not seen" as a comment on the one core biopsy sample that had adenocarcinoma. I realize perineural pertains to nerves and am unaware of how this biopsy sample could determine that unless it was very close to a nerve. It's location was in the right apex but I am too ignorant of prostate anatomy to know how close that might be to a nerve.
To all who responded, thanks for the support.0 -
SortieSortie said:My Husband
My husband was diagnosed three weeks ago and have done the process of where you are now. Sadly, when we went to Johns Hopkins on Friday of last week, we were informed that the prostate and cancer were much larger and more aggressive than told to us by a radiologist just two weeks prior.
Our doctor at JH said he was surprised that a radiologist would even consider doing seed implants with the status of his prostate. We have scheduled his surgery for April 27 and pray now that the cancer has not moved outside the wall of the prostate.
We have cried, prayed, and cried some more.
Know there are others who are walking in your shoes just a few baby steps ahead of you.
Sortie.
I do hope that this works for you and that your husband recovers. I hope you are getting second opinons on options. I know JH is a world class institution from having lived in the DC area for many years but a second opinion is painless. I personally am planning multiple opinions. After reading the literature which can be so confusing I am not sure you can learn enough about this disease.0 -
Thank Youlewvino said:Kongo,
First welcome to this
Kongo,
First welcome to this club that no one wants to join but glad you are here for support!
Second - Don't rush into treatment a 3+3 is very treatable and you have time to do your 'homework'. Read, study, ask questions, talk and get many opinions. This is the one time you get to pick your treatment options.
I can give Loma Linda high praise...my dad was treated there 14 years ago and still doing great. It was going to be my first choice but insurance would not pay for it.
How did I pick my treatment? By research and asking questions and of course prayer for me.
You didn't mention how old you are and of course that can play in the decision process.
For me I wanted to get the cancer out and have a back up plan and have a good chance at a healthy sex life following treatments. My stats were Gleason 4+3 pre surgery with 5 of 12 cores finding cancer. Also signs of perinural invasion. Some docs that I talked to gave me a low probability rate of being cancer free in 10 years...so for me to have a 'back up plan' was important. I'm now 7 months post Davinci surgery. Have been 99.9% dry since removal of the cath and have success using Levitra. From my diagnosis to actual surgery was right at 5 months.
Again good luck and keep asking those questions.
Larry age 55
Larry, thanks (I think) for the club welcome. I have read many of your posts and know that your are very helpful and compassionate. BTW, I am 59.0 -
Hi
Sorry your in this club, but glad that you are proactive in making adecision.
I choose active surveillance, and many , especially on this board, thing that I am out of my mind to not have the cancer removed.........I get a lot of comments, wait, wait for what, etc, etc.
Now I will do other treatment very quickly if my cancer progresses, however I am opting for a better quality of life with out the possible complications of other treatment methods.
below is a study that I came across about active surveillance , and various measurement to ascertain where you stand as far a any cancer in your system.
Ira
Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert
protocol:
PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36
After 8 years:
- 55% remain untreated with stable disease
- 36% decided to have treatment(eventhough they did not have progression)
- 9% treated with surgery or radiation for increase in psa or gleason score
- none have metastatic disease
< 1% men died of prostate cancer
---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005
. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression
FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE
What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.
There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
-----------------
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.0 -
Hi SortieSortie said:My Husband
My husband was diagnosed three weeks ago and have done the process of where you are now. Sadly, when we went to Johns Hopkins on Friday of last week, we were informed that the prostate and cancer were much larger and more aggressive than told to us by a radiologist just two weeks prior.
Our doctor at JH said he was surprised that a radiologist would even consider doing seed implants with the status of his prostate. We have scheduled his surgery for April 27 and pray now that the cancer has not moved outside the wall of the prostate.
We have cried, prayed, and cried some more.
Know there are others who are walking in your shoes just a few baby steps ahead of you.
Sortie.
I am very sorry to hear of the bad news.......here is some information that may help you.
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.0 -
Hopefulhopeful and optimistic said:Hi
Sorry your in this club, but glad that you are proactive in making adecision.
I choose active surveillance, and many , especially on this board, thing that I am out of my mind to not have the cancer removed.........I get a lot of comments, wait, wait for what, etc, etc.
Now I will do other treatment very quickly if my cancer progresses, however I am opting for a better quality of life with out the possible complications of other treatment methods.
below is a study that I came across about active surveillance , and various measurement to ascertain where you stand as far a any cancer in your system.
Ira
Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert
protocol:
PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36
After 8 years:
- 55% remain untreated with stable disease
- 36% decided to have treatment(eventhough they did not have progression)
- 9% treated with surgery or radiation for increase in psa or gleason score
- none have metastatic disease
< 1% men died of prostate cancer
---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005
. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression
FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE
What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.
There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
-----------------
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.
Thanks for the information. At this point in my situation, I tend to agree with you about active monitoring. The high recurrence of prostate cancer after surgery or radiation makes me suspect that this disease is intrinsicly systemic vice local and that some degree of metatsis is likely going on very early in the history of the cancer development in your body. Some of the literature I've read suggests that the natural history of this disease is over 50 years, particularly given the high incidence of prostate cancer found in autopsies of men in their 50s and 60s who died of other causes and were not symtomatic for prostate cancer. Of course, if your particular flavor of cancer is very aggressive, the "slow growing it won't kill you" philosophy doesn't seem appropriate. As you point out, the trick is figuring out what you have and I intend to pursue the Aureon laboratory for additional analysis.
In addition to the surveillance regime Dr. Klotz outlines in his excellent paper, I believe that based on the incidence of prostate (and other) cancer in certain parts of China and other places in the world compared to Western nations that a high vegetarian, low dairy, and low fat diet without red meat can make a difference as well. Professor Jane Plant has published a couple of books in this area based on her own experience with breast cancer and one of the books deals with diet and reversing prostate cancer. I've ordered it and will let you know how it is after I receive it.
Again, thanks for the great information.0 -
Hi againKongo said:Hopeful
Thanks for the information. At this point in my situation, I tend to agree with you about active monitoring. The high recurrence of prostate cancer after surgery or radiation makes me suspect that this disease is intrinsicly systemic vice local and that some degree of metatsis is likely going on very early in the history of the cancer development in your body. Some of the literature I've read suggests that the natural history of this disease is over 50 years, particularly given the high incidence of prostate cancer found in autopsies of men in their 50s and 60s who died of other causes and were not symtomatic for prostate cancer. Of course, if your particular flavor of cancer is very aggressive, the "slow growing it won't kill you" philosophy doesn't seem appropriate. As you point out, the trick is figuring out what you have and I intend to pursue the Aureon laboratory for additional analysis.
In addition to the surveillance regime Dr. Klotz outlines in his excellent paper, I believe that based on the incidence of prostate (and other) cancer in certain parts of China and other places in the world compared to Western nations that a high vegetarian, low dairy, and low fat diet without red meat can make a difference as well. Professor Jane Plant has published a couple of books in this area based on her own experience with breast cancer and one of the books deals with diet and reversing prostate cancer. I've ordered it and will let you know how it is after I receive it.
Again, thanks for the great information.
Basically heart healthy is prostate healthy........and, even if it isn't it's still a good idea to follow a heart healthy diet, since more die from heart disease than prostate cancer.
I tend to believe that the MRI with the Spectroscopy is the better test, and one really worth taking...........the molecular test is ok, and can confirm treatment options, but it's really not the the greatest.
Ira
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.00 -
Aureonhopeful and optimistic said:Hi
Sorry your in this club, but glad that you are proactive in making adecision.
I choose active surveillance, and many , especially on this board, thing that I am out of my mind to not have the cancer removed.........I get a lot of comments, wait, wait for what, etc, etc.
Now I will do other treatment very quickly if my cancer progresses, however I am opting for a better quality of life with out the possible complications of other treatment methods.
below is a study that I came across about active surveillance , and various measurement to ascertain where you stand as far a any cancer in your system.
Ira
Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert
protocol:
PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36
After 8 years:
- 55% remain untreated with stable disease
- 36% decided to have treatment(eventhough they did not have progression)
- 9% treated with surgery or radiation for increase in psa or gleason score
- none have metastatic disease
< 1% men died of prostate cancer
---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005
. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression
FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE
What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.
There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
-----------------
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.
Ira,
Did your insurance cover the Aureon lab work or did you self pay. Any idea what the cost is?0 -
Aureon labKongo said:Aureon
Ira,
Did your insurance cover the Aureon lab work or did you self pay. Any idea what the cost is?
Aureon was covered by my medical insurance.......I have medicare and blue cross ppo.....I'm not sure if medicare paid for everything or if blue cross chipped in.
You can call aureon.........and speak with I think the billing department and they will advise you for your specific situation.
Also you can ask for sales and published medical literature be sent to you.
I live in so ca, and met their saleman that represents this area.....there are probably other salesmen in other parts of the country....the company is located in yonkers ny.......I believe that your doc has to order the test for you, but I can be wrong.
ira0 -
Thanks Againhopeful and optimistic said:Aureon lab
Aureon was covered by my medical insurance.......I have medicare and blue cross ppo.....I'm not sure if medicare paid for everything or if blue cross chipped in.
You can call aureon.........and speak with I think the billing department and they will advise you for your specific situation.
Also you can ask for sales and published medical literature be sent to you.
I live in so ca, and met their saleman that represents this area.....there are probably other salesmen in other parts of the country....the company is located in yonkers ny.......I believe that your doc has to order the test for you, but I can be wrong.
ira
Ira, thanks again for the good information. You are correct that the doctor must order the analysis and whoever did the biopsy pathology has to ship the samples in accordance with Aureon instructions. My doctor had never used it before although he had heard of it and thought it would be a good idea. I just figured since his office was new to this I would want all the information in case I had to lead them step-by-step though the process.
I'll let you know how it turns out.
BTW, I am also in Southern California when I'm not on a plane going somewhere else. Have also scheduled some consulting sessions with Loma Linda, Cyberknife, and a process call Novalis Tx which is supposed to be the next generation Cyberknife and is conducting some clinical trials in San Diego.0 -
KongoKongo said:Thanks Again
Ira, thanks again for the good information. You are correct that the doctor must order the analysis and whoever did the biopsy pathology has to ship the samples in accordance with Aureon instructions. My doctor had never used it before although he had heard of it and thought it would be a good idea. I just figured since his office was new to this I would want all the information in case I had to lead them step-by-step though the process.
I'll let you know how it turns out.
BTW, I am also in Southern California when I'm not on a plane going somewhere else. Have also scheduled some consulting sessions with Loma Linda, Cyberknife, and a process call Novalis Tx which is supposed to be the next generation Cyberknife and is conducting some clinical trials in San Diego.
Where are you located in So CA.?............I'm in orange county...los alamitos area(kinda south of long beach).
This is the first that I heard of Novalis Tx..........Which institution is doing this?...Can you provide other information?
Ira0 -
Novalis Txhopeful and optimistic said:Kongo
Where are you located in So CA.?............I'm in orange county...los alamitos area(kinda south of long beach).
This is the first that I heard of Novalis Tx..........Which institution is doing this?...Can you provide other information?
Ira
Ira:
I'm in San Diego but frequently travel by you for business and to visit kids and grandkids in Thousand Oaks. The Novalis clinical trial I am interested in is sponsored by San Diego Radiosurgery which is co-located at Palomar Hospital in Encinitas (about an hour from you in good traffic). I believe there are other sites across the country that are performing clinical trials as well but this one is the closest to me. The Novalis procedure is also available at UCLA Medical Center.
Link to the clinical trial information site is: www.sdradiosurgery.com/patient-information/clinical-trials.php
The link to the company that makes the Novalis Tx machine is: http://www.novalistxradiosurgery.com/
My understanding is that Novalis is a "next generation" technology over Cyberknife and delivers a highly developed photon beam designed to exactly fit the tumor of interest. Like Cyberknife, the machine is tracked to the movements of your body so that it can deliver the radiation at sub-millimeter accuracy. Unlike Cyberknife, Novalis does not require the insertion of gold "fudicials" into the prostate to act as geospatial reference points for the machine to remain locked on to the cancer location. Both Cyberknife and Novalis apparently deliver the same dosage normally given in Brachy and XBRT but only over a much shorter, 5-day period.
I have been informed that I am a candidate for the trial and have a consultation scheduled toward the end of the month. I have also scheduled a consultation with Cyberknife who has also told me I am a candidate the same week. Loma Linda has advised me I am a good candidate for proton therapy and am trying to schedule their consultation the same week so it is easier to compare them head-to-head.
I haven't made any decisions on a course of treatment. Naturally my urologist thinks surgery is the best way to go. Interestingly, he is not a fan of robotic surgery today (at least for this area) because he doesn't feel there are enough surgeons in our geographic area with adequate experience. He also pointed out that a surgeon's value is in his hands and that the ability to "feel" potential spread to seminal vessels, lymph nodes and other areas is a critical discriminator for traditional versus robotic surgery. I know many who post here give rave reviews for their experience with the DaVinci system but perhaps they are in areas where their surgeons are more practiced.
In my own mind, surgery seems like a very drastic procedure, has multiple potentially devasting side effects, and doesn't offer long term survival advantages over seeds/XBRT, or watchful waiting. I'm intrigued with the newer radiation technologies such as Novalis and Cyberknife because of their potential to deliver the same effect as brachy/XBRT without the downside of the delayed sexual disfunction and urinary issues so many who pursue radiation therapy seem to possess. To me, proton surgery also offers much less potential side effects but I realize any radiation may pose unanticipated problems.
I have a consultation with an oncologist next week to try to get a balanced perspective on all the treatments. Frankly, I also like watchful waiting as an option given my symptoms today.
My email, if you would like to correspond and get in touch directly is scottjones@cox.net.0 -
Basically you are a good candidate for all treatment typesKongo said:Novalis Tx
Ira:
I'm in San Diego but frequently travel by you for business and to visit kids and grandkids in Thousand Oaks. The Novalis clinical trial I am interested in is sponsored by San Diego Radiosurgery which is co-located at Palomar Hospital in Encinitas (about an hour from you in good traffic). I believe there are other sites across the country that are performing clinical trials as well but this one is the closest to me. The Novalis procedure is also available at UCLA Medical Center.
Link to the clinical trial information site is: www.sdradiosurgery.com/patient-information/clinical-trials.php
The link to the company that makes the Novalis Tx machine is: http://www.novalistxradiosurgery.com/
My understanding is that Novalis is a "next generation" technology over Cyberknife and delivers a highly developed photon beam designed to exactly fit the tumor of interest. Like Cyberknife, the machine is tracked to the movements of your body so that it can deliver the radiation at sub-millimeter accuracy. Unlike Cyberknife, Novalis does not require the insertion of gold "fudicials" into the prostate to act as geospatial reference points for the machine to remain locked on to the cancer location. Both Cyberknife and Novalis apparently deliver the same dosage normally given in Brachy and XBRT but only over a much shorter, 5-day period.
I have been informed that I am a candidate for the trial and have a consultation scheduled toward the end of the month. I have also scheduled a consultation with Cyberknife who has also told me I am a candidate the same week. Loma Linda has advised me I am a good candidate for proton therapy and am trying to schedule their consultation the same week so it is easier to compare them head-to-head.
I haven't made any decisions on a course of treatment. Naturally my urologist thinks surgery is the best way to go. Interestingly, he is not a fan of robotic surgery today (at least for this area) because he doesn't feel there are enough surgeons in our geographic area with adequate experience. He also pointed out that a surgeon's value is in his hands and that the ability to "feel" potential spread to seminal vessels, lymph nodes and other areas is a critical discriminator for traditional versus robotic surgery. I know many who post here give rave reviews for their experience with the DaVinci system but perhaps they are in areas where their surgeons are more practiced.
In my own mind, surgery seems like a very drastic procedure, has multiple potentially devasting side effects, and doesn't offer long term survival advantages over seeds/XBRT, or watchful waiting. I'm intrigued with the newer radiation technologies such as Novalis and Cyberknife because of their potential to deliver the same effect as brachy/XBRT without the downside of the delayed sexual disfunction and urinary issues so many who pursue radiation therapy seem to possess. To me, proton surgery also offers much less potential side effects but I realize any radiation may pose unanticipated problems.
I have a consultation with an oncologist next week to try to get a balanced perspective on all the treatments. Frankly, I also like watchful waiting as an option given my symptoms today.
My email, if you would like to correspond and get in touch directly is scottjones@cox.net.
I personally am not familiar with the San Diego area as far as surgery or anything else. The city of hope in duerte had two good guys Dr.Wilson and his partner Dr K....../ Also in the Newport beach hospital, hoag, there is a guy who used to work at the city of hope , who has done almost 1000 robotics.I think that his name is either Yamada or Yoshida. UCLA has a couple of good robotic surgeons......at usc, there is a guy who they hired from the cleavand clinic last year who heads up the dept now. he is supposed to be a real expert on robotics....I haven't followed up on this person. I don't have his name handy, but I think that he is an indian. At uc irvine there is a guy Dr. Alerton(sp) who is an expert, however he only excepts cash.......last year his charge for a consult was 500 and 5000 for a robotic without complications.
I personally am doing active surveillance' at this point, which is the best choice for me. I have another appt with my doc. at the end of april...he had been talking about another biopsy, so we shall see. I want to extend a quality of life as long as possible.
Other treatment options:
First choice is robotic surgery......I tend to feel that if there is a problem I can use another treatment option more readilly.
Thanks for letting me know about Novalis at UCLA where I am currently a patient on active surveillance. I like the idea of less treatments, however I have concerns about side effects and treatment option if this fails.
HIFU in the USA is something that I would like to know more about.......I'm thinking that it MIGHT be up and coming, but I would like to see it approved by the federal gov.
My email address is ShalohaToYou@Yahoo.com. Please feel free to contact with if you wish with specific questions or to say hello,it would be a pleasure to communicate with you, however I think that its a good idea to post on this site so others with similar problems or comments can gain information or put their two cents in.
Ira0 -
Agreehopeful and optimistic said:Basically you are a good candidate for all treatment types
I personally am not familiar with the San Diego area as far as surgery or anything else. The city of hope in duerte had two good guys Dr.Wilson and his partner Dr K....../ Also in the Newport beach hospital, hoag, there is a guy who used to work at the city of hope , who has done almost 1000 robotics.I think that his name is either Yamada or Yoshida. UCLA has a couple of good robotic surgeons......at usc, there is a guy who they hired from the cleavand clinic last year who heads up the dept now. he is supposed to be a real expert on robotics....I haven't followed up on this person. I don't have his name handy, but I think that he is an indian. At uc irvine there is a guy Dr. Alerton(sp) who is an expert, however he only excepts cash.......last year his charge for a consult was 500 and 5000 for a robotic without complications.
I personally am doing active surveillance' at this point, which is the best choice for me. I have another appt with my doc. at the end of april...he had been talking about another biopsy, so we shall see. I want to extend a quality of life as long as possible.
Other treatment options:
First choice is robotic surgery......I tend to feel that if there is a problem I can use another treatment option more readilly.
Thanks for letting me know about Novalis at UCLA where I am currently a patient on active surveillance. I like the idea of less treatments, however I have concerns about side effects and treatment option if this fails.
HIFU in the USA is something that I would like to know more about.......I'm thinking that it MIGHT be up and coming, but I would like to see it approved by the federal gov.
My email address is ShalohaToYou@Yahoo.com. Please feel free to contact with if you wish with specific questions or to say hello,it would be a pleasure to communicate with you, however I think that its a good idea to post on this site so others with similar problems or comments can gain information or put their two cents in.
Ira
I agree that HIFU may be the next best thing if the trials pan out. Frankly, I would be a bit nervous about jumping on a plan and flying to Mexico for a weekend procedure and then flying back when there are so few people in this country who are available real time if an issue develops. I spend a week a year in Cancun...but its for golf and relaxing.
I certainly share your feelings about quality of life.0
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