Looking for a good Kaiser Surgeon for Radical prostatectomy (Davinci machine)
New member here and so far the discussions have been very informative - thank you
does anyone know of a very experienced Doctor at Kaiser for this procedure? I have just
read from the discussions here that a doctor with numerous experience with this
procedure should be considered. Anywhere in the Bay Area (San Francisco, Walnut Creek,
Santa Clara) in N. California
I was diagnosed with Prostate Cancer - 4+3 (Gleason score). PSA was 12+ a month ago.
Any help and suggestion is very much appreciated.
Joey (54 yrs old)
Comments
-
Keep looking, but I think
Keep looking, but I think I've read about Thomas Hsu at Kaiser Santa Clara.
http://www.permanente.net/homepage/kaiser/pages/c15315-top.html
In Walnut Creek I seem to remember reading about Rosenbaum
Look at this thread.
http://csn.cancer.org/node/178242
Many doctors at Kaiser, such as at Walnut Creek, have only had their robotic machine for 2 or 3 years and don't get to do many surgeries with everyone having to share the machine.
I initially went to a urologist at WC but later switched to Oakland and was happy with that urologist.
As I remember, my uro at WC said he only was able to do about 1 surgery a week or was it a month? on the machine. That was about 18 months ago, but many of them didn't have much experience at that time.
They are somewhat touchy, since they know why patients are asking them about numbers/experience.
On the other hand, I had a good friend who had surgery in WC with a guy who was doing his first 25 and his outcome was excellent. You never know.
How will uros get practice if no one goes to them?
I've not yet had a positive diagnosis, only biopsies thus far.
Don't overlook the brachy choice. Kaiser does all its brachy in Roseville, up near Sac.
Everyone from the Bay Area goes there and they do it all day long. Really get their skills up from repeated practice.
What Kaiser office is your urologist in? Its only been 1 month, do you think you've given the choice enough time? What is the advice of your uro?0 -
I just want to say, that anyone contemplating surgery (DaVinci or open) needs to go into this knowing that they have DAILY work ahead of them. Daily kegel exercises, daily use of the vacuum pump (which our insurance actually paid for! and our urologist had already checked out and had it waiting for us at time of cath removal), use of meds for ED.
I think hubby is doing so well because he is so devoted to his rehab. "Do the rehab" is what the PA who took his catheter out told us, and he has truly followed everything she instructed him to do. As a result, he is quite happy with how far he has already progressed. I had heard horror stories of men's penises being atrophied because in the past, it was just oh well it is what it is. Now the urologist (if he is a good one) has a protocol for rehab that will get good results. Do your research, get your mind set, and get your rehab going as soon as possible (and as soon as allowed by your urologist).
Additionally, I am a very firm believer that the result of your surgery will be a direct reflection of the experience of your surgeon. We surgeon-shopped for 5 or 6 weeks of appointments (as well as seeing rad oncologist) before we finally picked the 4th surgeon we visited with. This is a highly important decision.
We are grateful that we had the means to do all this. We feel blessed it was caught early. We celebrated my husband's 52nd birthday this week, 29 years of marriage in October, and we are celebrating his choice and celebrating his commitment to recovery.0 -
Kaiser and brachytherapyRiverRider said:Keep looking, but I think
Keep looking, but I think I've read about Thomas Hsu at Kaiser Santa Clara.
http://www.permanente.net/homepage/kaiser/pages/c15315-top.html
In Walnut Creek I seem to remember reading about Rosenbaum
Look at this thread.
http://csn.cancer.org/node/178242
Many doctors at Kaiser, such as at Walnut Creek, have only had their robotic machine for 2 or 3 years and don't get to do many surgeries with everyone having to share the machine.
I initially went to a urologist at WC but later switched to Oakland and was happy with that urologist.
As I remember, my uro at WC said he only was able to do about 1 surgery a week or was it a month? on the machine. That was about 18 months ago, but many of them didn't have much experience at that time.
They are somewhat touchy, since they know why patients are asking them about numbers/experience.
On the other hand, I had a good friend who had surgery in WC with a guy who was doing his first 25 and his outcome was excellent. You never know.
How will uros get practice if no one goes to them?
I've not yet had a positive diagnosis, only biopsies thus far.
Don't overlook the brachy choice. Kaiser does all its brachy in Roseville, up near Sac.
Everyone from the Bay Area goes there and they do it all day long. Really get their skills up from repeated practice.
What Kaiser office is your urologist in? Its only been 1 month, do you think you've given the choice enough time? What is the advice of your uro?
RiverRider said, "Don't overlook the brachy choice. Kaiser does all its brachy in Roseville, up near Sac. Everyone from the Bay Area goes there and they do it all day long. Really get their skills up from repeated practice.
The choice is yours of course but, as noted, Kaiser in Roseville has a lot of experience with brachytherapy. When I had it done in January of 2008 (Dr. Schmidt), they had done approxiimately 3,500 over the previous few years and were doing about nine per week.0 -
kaiser, treatment decisions, etc
Joey,
Before you rush into any treatment decision, I wanted to share our story. It's not meant to scare you or recommend any treatment option, only to inform you of our experience, so that you might make the best decision that is right for you. My husband's (pjd) PCa was diagnosed in February 2010 at Kaiser in So Cal by a great urologist (the Urology Dept Chief). Pjd's psa was 2.28 so no red flag. DRE exam found a nodule. 12 core biopsy taken, with 9/12 cores positive and PNI (perineural invasion) identified. Initial (Kaiser) gleason was 3+3=6 and we were told by Kaiser that pjd was a clinical stage T2b and that we had several treatment options, including open surgery, robotic surgery, etc. At this point, surgery may have made sense, but we decided to take some time and educate ourselves, talking to lots of docs (see my previous posts on other threads), both inside and outside of Kaiser. We paid for the outside doc consults ourselves while we were still in Kaiser. We decided to do a few things before we made any treatment decision. First, pjd made arrangements to pick up his slides from the Kaiser lab and sent them out for a 2nd opinion (he used Epstein at Johns Hopkins). They came back with a revised gleason of 3+4=7, confirmed the PNI, and showed many of the 9/12 cores to be at 100% (high volume--not good). Then we asked Kaiser to do a bone scan and a pelvic CT in order to rule out metastases. Both were negative, although we know those studies do not pick up microscopic cancer cells. Pjd got a color dopler ultrasound by a well known doc here in So Cal and he qualified for a study at UCSF where he had an endorectal MRI w/Spec. Both of these two additional studies confirmed what we knew was very likely--that the PCa was outside the capsule, in the right seminal vesicle and regional. So pjd's clincial stage was now changed to T3b.
After consults with many Kaiser docs as well as top rated (experienced and skilled) PCa surgeons at both Stanford and UCSF, we were told that open surgery could be done, but would be a long and difficult procedure and positive margins would be likely with follow up radiation also very likely after surgery. Both surgeons actually recommended hormone therapy with radiation as an alternative to surgery since studies have shown similiar long term outcomes. BTW, although we had considered open surgery, we did not consider robotic surgery because even with the best skilled and experienced robotic surgeon, open surgery can get better angles and wider margins as well as more complete lymph node removal, which is what pjd would have needed if he chose surgery. When we asked the surgeons about the benefit of getting a "real time" or "pathology" staging obtained from RP, we were told by all the surgeons that you do not do a RP surgery to obtain a "pathology staging" ... you do it to remove all the cancer, and if you know ahead of time, especially with a clincial T3b staging that chances are not good of removing all the cancer, then you have to consider all the treatment options, the host of likely side effects, and make your best treatment decision to get rid of the cancer while minimizing all the possible side effects.
Although we had a good experience at Kaiser, especially since they were able to make the diagnosis, we were fortunate to have other insurance options and have left Kaiser to pursue treatment outside of the "HMO" realm. There are many fine doctors at Kaiser and each venue is different. Although you do not mention the results of your biopsy, whatever you decide, take the time to do your homework and research, read the experiences of the courageous men on this site, interview lots of Kaiser docs (robotic & open surgeons, radiology oncologists, urological oncologists, etc), ask alot of questions, and choose the most experienced & skilled doc for the treatment you decide on.
Best,
mrs pjd0 -
excellent postmrspjd said:kaiser, treatment decisions, etc
Joey,
Before you rush into any treatment decision, I wanted to share our story. It's not meant to scare you or recommend any treatment option, only to inform you of our experience, so that you might make the best decision that is right for you. My husband's (pjd) PCa was diagnosed in February 2010 at Kaiser in So Cal by a great urologist (the Urology Dept Chief). Pjd's psa was 2.28 so no red flag. DRE exam found a nodule. 12 core biopsy taken, with 9/12 cores positive and PNI (perineural invasion) identified. Initial (Kaiser) gleason was 3+3=6 and we were told by Kaiser that pjd was a clinical stage T2b and that we had several treatment options, including open surgery, robotic surgery, etc. At this point, surgery may have made sense, but we decided to take some time and educate ourselves, talking to lots of docs (see my previous posts on other threads), both inside and outside of Kaiser. We paid for the outside doc consults ourselves while we were still in Kaiser. We decided to do a few things before we made any treatment decision. First, pjd made arrangements to pick up his slides from the Kaiser lab and sent them out for a 2nd opinion (he used Epstein at Johns Hopkins). They came back with a revised gleason of 3+4=7, confirmed the PNI, and showed many of the 9/12 cores to be at 100% (high volume--not good). Then we asked Kaiser to do a bone scan and a pelvic CT in order to rule out metastases. Both were negative, although we know those studies do not pick up microscopic cancer cells. Pjd got a color dopler ultrasound by a well known doc here in So Cal and he qualified for a study at UCSF where he had an endorectal MRI w/Spec. Both of these two additional studies confirmed what we knew was very likely--that the PCa was outside the capsule, in the right seminal vesicle and regional. So pjd's clincial stage was now changed to T3b.
After consults with many Kaiser docs as well as top rated (experienced and skilled) PCa surgeons at both Stanford and UCSF, we were told that open surgery could be done, but would be a long and difficult procedure and positive margins would be likely with follow up radiation also very likely after surgery. Both surgeons actually recommended hormone therapy with radiation as an alternative to surgery since studies have shown similiar long term outcomes. BTW, although we had considered open surgery, we did not consider robotic surgery because even with the best skilled and experienced robotic surgeon, open surgery can get better angles and wider margins as well as more complete lymph node removal, which is what pjd would have needed if he chose surgery. When we asked the surgeons about the benefit of getting a "real time" or "pathology" staging obtained from RP, we were told by all the surgeons that you do not do a RP surgery to obtain a "pathology staging" ... you do it to remove all the cancer, and if you know ahead of time, especially with a clincial T3b staging that chances are not good of removing all the cancer, then you have to consider all the treatment options, the host of likely side effects, and make your best treatment decision to get rid of the cancer while minimizing all the possible side effects.
Although we had a good experience at Kaiser, especially since they were able to make the diagnosis, we were fortunate to have other insurance options and have left Kaiser to pursue treatment outside of the "HMO" realm. There are many fine doctors at Kaiser and each venue is different. Although you do not mention the results of your biopsy, whatever you decide, take the time to do your homework and research, read the experiences of the courageous men on this site, interview lots of Kaiser docs (robotic & open surgeons, radiology oncologists, urological oncologists, etc), ask alot of questions, and choose the most experienced & skilled doc for the treatment you decide on.
Best,
mrs pjd
mrspjd gave some excellent advice.....read her post very carefully...look into getting an MRI with a spectroscopy...additionally you only get one chance at surgery, so if you decide on surgery get the best no matter what the cost or geographic location. Same is true for any treatment option.
Also please let us know how many cores are positive and the involvement of each.
Ira0 -
Joey
Everyone here gives very good advice because they have gone through an exhaustive process to get where they landed. Those who don't investigate, question, read are the ones that haphazardly fall through life and take what they get whatever that is....this beast is exhaustive on many levels...psychologically, mentally and physically and you need to spend much time pouring yourself into the mirad of options that confront you in order to make the best treatment choice for all YOUR OWN reasons and expectations of the outcome on whatever treatment you choose. Relax and know this exhaustive research is just a process that you need to go through in order to find the best possible choice for YOUR particular situation. Go with an Open Mind and start sifting through all the options. We are all here to help answer any questions we can with our own personal perspectives and experiences.
Best of luck finding the treatment for a cure with the fewest side effects!
Randy in Indy
Here was my path:
52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott
Sling installed at time of Da Vinci – not sure what name of it is but not the 800 that is causing all the problems. Attached to Coopers Ligament.
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries
FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
Virtually Pad free 2-20-10
SECOND PSA 5-26-10 <0.1 NONDECTECTABLE!
Notes on Recovery: Was at my desk working (from home office – sales) 6 days following my surgery. No pain to speak of (very lucky as many have some pain) I think because I took the Tramadol they gave religiously and found it to be the best drug in the world. BM’s where the trickiest part and most uncomfortable in the early stages but improved with time – follow the diet they give you!...I strayed off and the next BM helped to get me back on track – I like food very hot and spicy - don’t recommend that for at least a month following surgery. Cream soups, mushroom, celery, and chicken worked great the first week following surgery. Mashed Potatoes…Ah the first time following surgery it was heaven!...the first really solid food I ate…..you will learn to appreciate food all over again as you add back your favorites following surgery when the time is right. Take all the help from everyone around you…it might be a while you get that opportunity again to be waited on hand and foot. Liquids are a concern but some affect people differently it seems reading through the discussion board…I found anything carbonated would cause much leaking…alcohol was not good either…but I justified doing it thinking It’s my training method to work on my bladder control!...lol I love homebrewed beers too much! And am an admitted hop head.
ED path:
Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.
Currently only need ¼ pill to get usable . Day 150 am starting to get semi hard without any drug.0 -
Randy is Spot Onrandy_in_indy said:Joey
Everyone here gives very good advice because they have gone through an exhaustive process to get where they landed. Those who don't investigate, question, read are the ones that haphazardly fall through life and take what they get whatever that is....this beast is exhaustive on many levels...psychologically, mentally and physically and you need to spend much time pouring yourself into the mirad of options that confront you in order to make the best treatment choice for all YOUR OWN reasons and expectations of the outcome on whatever treatment you choose. Relax and know this exhaustive research is just a process that you need to go through in order to find the best possible choice for YOUR particular situation. Go with an Open Mind and start sifting through all the options. We are all here to help answer any questions we can with our own personal perspectives and experiences.
Best of luck finding the treatment for a cure with the fewest side effects!
Randy in Indy
Here was my path:
52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott
Sling installed at time of Da Vinci – not sure what name of it is but not the 800 that is causing all the problems. Attached to Coopers Ligament.
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries
FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
Virtually Pad free 2-20-10
SECOND PSA 5-26-10 <0.1 NONDECTECTABLE!
Notes on Recovery: Was at my desk working (from home office – sales) 6 days following my surgery. No pain to speak of (very lucky as many have some pain) I think because I took the Tramadol they gave religiously and found it to be the best drug in the world. BM’s where the trickiest part and most uncomfortable in the early stages but improved with time – follow the diet they give you!...I strayed off and the next BM helped to get me back on track – I like food very hot and spicy - don’t recommend that for at least a month following surgery. Cream soups, mushroom, celery, and chicken worked great the first week following surgery. Mashed Potatoes…Ah the first time following surgery it was heaven!...the first really solid food I ate…..you will learn to appreciate food all over again as you add back your favorites following surgery when the time is right. Take all the help from everyone around you…it might be a while you get that opportunity again to be waited on hand and foot. Liquids are a concern but some affect people differently it seems reading through the discussion board…I found anything carbonated would cause much leaking…alcohol was not good either…but I justified doing it thinking It’s my training method to work on my bladder control!...lol I love homebrewed beers too much! And am an admitted hop head.
ED path:
Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.
Currently only need ¼ pill to get usable . Day 150 am starting to get semi hard without any drug.</p>
Joey,
Randy's comments are right on the mark. I infer from your original post that your are looking for an option within the Kaiser HMO family. Although, I am not in Kaiser and generally not a fan of HMOs, I am familiar with their conservative approach to PCa treatment. You owe it to yourself to explore options beyond surgery which, from what I have read, is the one-size-fits-all approach that many HMOs use for those newly diagnosed.
Even if it costs you some money out of pocket, it's worth it to make sure you have fully explored all the options before you make a decision that is best for your particular case, as Randy indicated.
In your area I know that UCSF has excellent specialists in various forms of radiation that may be appropriate for your cancer and you should check it out.
At the end of the day if you decide to go forward with surgery, you will have the peace of mind of knowing that you explored all the other options and made the one that was best for you. If you read many of the recent posts in this forum you will quickly realize that while many have minimal problems with surgery and come out in super shape as Randy did, there are others who were not as fortunate. You don't want to find yourself in a difficult situation in a year from now and think, "Geez, maybe I should have considered something else..." We don't get any do-overs on our decision...so make it with as much knowledge as you can garner.
I did a post here on April 30 called "Decisions, Decisions" that outlined my research and decision making process that you may find useful as you grapple with all the information and advice that is out there. While some did not agree with my decision methodology, most of the feedback I received was positive. Check it out when you have the time.
Good luck for a successful attack on your PCa.0 -
Joey
In my opinon Kongo did some of the most extensive research of any of us on here (based on reading each and everyone of his posts) And there are others too in BD Hilton, Hopeful and Opt, lewvino, riverrider(3 years I think) swingshiftworker, the list goes on and on. Too me it seems Kongo did pretty extensive searches into each and just about every treatment possible for this quandry we find ourselves in and he ended with Cyberknife...something I never even looked into and had Kongo gone before me and I was reading all his information prior to my decision I certainly would have looked into it - especially if I would not have had a nodgle and only elevated PSA with one or two samples positive in the biopsy. My path it seems took me to the best place for me after it was all said and done, particularly when considering only finding out after my surgery that the tumor was within less than 1mm from breaking through the capsle in two places both right and left lobes, which pre-surgery was only thought to be in the rightside only. Cyberknife might have worked for me but then again it might have missed a couple of cells at the capsle wall and I could be doing this all over again down the road with more tricky radiation or perhaps even chemo for that matter. I may still have to be dealing with this down the road...that's the thing about this beast...it can rear it's ugly head years down the road. I believe there is a plan for all of us...in some way shape or form...and mine as always been on the lucky side even in the dark moments of my life, divorce, death of a father, and now cancer. I still feel I am much luckier than the average joe and have always believed that my whole life but then I also feel I have worked hard to be lucky and have created some of that "luck" I feel I have.
Give yourself all the time you can afford based on the stage of your cancer and allow for some down time for everything to sink in and then what rises to the top of your personal priority heirarchy helps to solidify your end decision.
Good "luck" and God bless you!
Randy0 -
Welcome to our Club that no
Welcome to our Club that no one wants to join. The good news is though that once you get treatment behind you then you join the 0 club! 0 PSA. You have received some great advice allready. Can not help you with Doctors names out on the West Coast. Just curious if you looked into the Proton Center at Loma Linda California? My dad was treated there in 1997 and doing great with no recurrance. I chose the Davinci and am happy with my choice and results.
Best wishes in your journey.
Larry (55)
0 PSA
Gleason 3+4 7
One positive margin
Coming up on the 10 month post surgery mark in about 15 days.0 -
What treatment did you choose?mrspjd said:kaiser, treatment decisions, etc
Joey,
Before you rush into any treatment decision, I wanted to share our story. It's not meant to scare you or recommend any treatment option, only to inform you of our experience, so that you might make the best decision that is right for you. My husband's (pjd) PCa was diagnosed in February 2010 at Kaiser in So Cal by a great urologist (the Urology Dept Chief). Pjd's psa was 2.28 so no red flag. DRE exam found a nodule. 12 core biopsy taken, with 9/12 cores positive and PNI (perineural invasion) identified. Initial (Kaiser) gleason was 3+3=6 and we were told by Kaiser that pjd was a clinical stage T2b and that we had several treatment options, including open surgery, robotic surgery, etc. At this point, surgery may have made sense, but we decided to take some time and educate ourselves, talking to lots of docs (see my previous posts on other threads), both inside and outside of Kaiser. We paid for the outside doc consults ourselves while we were still in Kaiser. We decided to do a few things before we made any treatment decision. First, pjd made arrangements to pick up his slides from the Kaiser lab and sent them out for a 2nd opinion (he used Epstein at Johns Hopkins). They came back with a revised gleason of 3+4=7, confirmed the PNI, and showed many of the 9/12 cores to be at 100% (high volume--not good). Then we asked Kaiser to do a bone scan and a pelvic CT in order to rule out metastases. Both were negative, although we know those studies do not pick up microscopic cancer cells. Pjd got a color dopler ultrasound by a well known doc here in So Cal and he qualified for a study at UCSF where he had an endorectal MRI w/Spec. Both of these two additional studies confirmed what we knew was very likely--that the PCa was outside the capsule, in the right seminal vesicle and regional. So pjd's clincial stage was now changed to T3b.
After consults with many Kaiser docs as well as top rated (experienced and skilled) PCa surgeons at both Stanford and UCSF, we were told that open surgery could be done, but would be a long and difficult procedure and positive margins would be likely with follow up radiation also very likely after surgery. Both surgeons actually recommended hormone therapy with radiation as an alternative to surgery since studies have shown similiar long term outcomes. BTW, although we had considered open surgery, we did not consider robotic surgery because even with the best skilled and experienced robotic surgeon, open surgery can get better angles and wider margins as well as more complete lymph node removal, which is what pjd would have needed if he chose surgery. When we asked the surgeons about the benefit of getting a "real time" or "pathology" staging obtained from RP, we were told by all the surgeons that you do not do a RP surgery to obtain a "pathology staging" ... you do it to remove all the cancer, and if you know ahead of time, especially with a clincial T3b staging that chances are not good of removing all the cancer, then you have to consider all the treatment options, the host of likely side effects, and make your best treatment decision to get rid of the cancer while minimizing all the possible side effects.
Although we had a good experience at Kaiser, especially since they were able to make the diagnosis, we were fortunate to have other insurance options and have left Kaiser to pursue treatment outside of the "HMO" realm. There are many fine doctors at Kaiser and each venue is different. Although you do not mention the results of your biopsy, whatever you decide, take the time to do your homework and research, read the experiences of the courageous men on this site, interview lots of Kaiser docs (robotic & open surgeons, radiology oncologists, urological oncologists, etc), ask alot of questions, and choose the most experienced & skilled doc for the treatment you decide on.
Best,
mrs pjd
mrs pjd, my diagnosis is similar to pld's. it is a little scary. i am in kaiser and considering surgery. how did you make a final selection for treatment and what were the results?0 -
intermediate/high risk PCaCHC said:What treatment did you choose?
mrs pjd, my diagnosis is similar to pld's. it is a little scary. i am in kaiser and considering surgery. how did you make a final selection for treatment and what were the results?
CHC,
Welcome to the CSN PCa discussion board sponsored by the ACS (American Cancer Society). As you wrote, receiving a PCa dx is definitely scary and confusing, not only for the patient, but also for his wife/partner or family. While it can feel overwhelming, be assured that as you educate yourself about PCa, things will begin to make sense and, a clearer picture will emerge of choices that might be best for you.
Although you indicated your dx was similar to PJD’s (intermediate-high risk PCa), it is always helpful to post your PCa history & stats so that others can offer their lay opinions and share their experiences. Each man’s PCa is unique. A tx that is right for one man may not be right or work for another, even if they present with similar PCa profiles and stats. Tx choices need to be based on what is personally right for you, your age, lifestyle, accurately staged PCa, and whether any pre-existing health issues preclude certain txs. No PCa tx is without risk of a wide range & intensity of side effects.
If Kaiser is your med ins provider, be aware that most HMO’s offer limited PCa tx options. You may need to look outside Kaiser to explore other tx alternatives or specialists that the HMO doesn’t provide. If you’re in No Cal, Stanford and UCSF both have world class practicing PCa physicians on faculty and, if possible, seeking consults from either or both of those institutions would seem to make sense.
Unfortunately, there are no easy, quick or short answers to your questions (or about the subject of PCa). The answers are complex and this long post only touches the surface of answering what we did and how we did it.
First, after the shock and reality of the dx sank in, my husband and I each took a deep breath, exhaled slowly and, then, quickly got to work 24/7 educating ourselves about PCa BEFORE making any tx decisions—a daunting but mandatory task. That process included searching out reputable PCa educational websites and reading PCa books (one such source is http://www.prostate-cancer.org/pcricms/node/34); researching clinical studies and scientific data (for example, http://www.ncbi.nlm.nih.gov/pubmed/); attending several different face to face PCa networking groups in our community (such as the ACS group “UsToo” and The Wellness Community, etc.); obtaining add’l diagnostic tests & results to further stage PJD’s cancer, including a 2nd opinion biopsy report from a respected lab (reread my previous post in this thread); seeking multiple 2nd opinion consults with skilled & experienced specialists in many different tx modalities such as surgery (open & robotic), radiation (all forms), hormones (different drugs and tx time length protocols), and looking at combinations of those primary txs. In addition, we consulted with an oncologist specializing in PCa who we felt could offer an unbiased assessment of PJD’s case without having a stake in recommending one type of tx over another.
Although PJD was a candidate for surgery with no pre-existing health issues, he elected not to have surgery. With his revised staging of locally advanced, intermediate/high risk T3 PCa, we were advised there was a very high likelihood that negative margins would not be attainable from surgery. This same opinion was given to us by several different skilled and experienced (open) surgeons. With a high risk for post op positive margins as well as for a rising post-op PSA, adjuvant RT likely would have been necessary as follow on tx. This was a key factor in PJD’s decision not to do surgery. In other words, why risk all the potential side effects of RP if it, alone, wouldn’t have the best chance of being “curative” and, then, why risk compounding RP side effects as a result of adjuvant RT, with potentially add’l side effects from RT.
After eliminating surgery as an option, we researched and narrowed down the choices, closely examining a combination of primary txs appropriate for T3 PCa. Those txs consisted of triple ADT (Androgen Deprivation Therapy aka hormones) to reduce and shrink tumor cell volume; HDR-B (High Dose Rate Brachytherapy--a temporary form of Brachy) to apply/deliver a high rate radiation dosing “boost” directly into the prostate gland & seminal vesicle (where the cancer had advanced); and, IG/IMRT (Image Guided/Intensity Modulated Radiation Therapy) to radiate the prostate bed and local lymph nodes. PJD elected this combination of primary treatments. I need to emphasize that his tx choice was a very personal decision based on a lot of research. He felt it was the right option for him and, we had confidence that it would give him the best chance for a successful outcome. He selected, and put his trust in, a team of specialists, each nationally recognized as experts for their skill and experience in the tx modalities that he chose.
Research indicated that when ADT and IMRT were used in a neo-adjuvant primary tx approach for T3 PCa, success rates of containment and PCa-free survival were comparable to that of RP alone. Over ten years of study data for HDR-B showed successful tx outcomes for intermediate-high risk PCa. Toxicity findings were generally unremarkable. HDR-B radiation is delivered by temporary insertion of radioactive iridium wire into flexible needles placed in the prostate through the perineum and removed after tx. It differs from the more commonly known Brachytherapy tx which involves implantation of permanent radioactive seeds into the prostate.
For his stage of cancer, PJD felt HDR-B was the best option to deliver high rate rad dosing directly into the prostate gland and, also, the seminal vesicle (where the cancer had invaded). He also believed it would be the most effective and precise way to tx the cancer, since the HDR-B delivery method applied the dosing directly, eliminating the potential for missing the target due to any slight prostate movement, assuring the full dosing boost.
The HDR-B and IMRT txs were completed between Sept & Oct 2010. There were few side effects & all resolved after a few weeks following tx with no residual toxicity to date. ADT was discontinued Jan 2011 after 9 months and was well tolerated. Lab work over the tx course showed a consistent and sharp drop in PSA, Testosterone and DHT. The most recent labs, taken in January while still on ADT3 (Lupron, Casodex, Avodart), were in line with his doctors’ expectations and his PSA was 0.016 ng/ml (with prostate). It is anticipated that PSA readings will rise and fall within a limited range as a result of both the RT & ADT txs, ultimately reaching nadir over a period of time.
Re your question about “results” -- IMHO, when it comes to PCa, the word “results” is as elusive as the word “cure” yet, long term successful tx outcome and PCa-free survival are the goals of every treatment and everyone on this board, men and women alike. Post-tx testing such as PSA, T, DHT, etc. is ongoing. PJD is doing well and feeling fine, healthy and active, golfing, skiing, working, and simply, enjoying life.
I would encourage you to start a new thread (topic for discussion) and to include your PCa profile (history & stats) along with any questions. A new thread may generate more feedback from others than a post on an older inactive thread, like this one. You can do a search of previous posts (mine or others) for more info by using the “search prostate cancer” box found on the upper right near the top of the PCa main page. Enter a user’s name or a PCa topic of interest.
CHC, I hope I’ve answered your questions and provided some insight into our PCa journey. If I can be of add’l help, pls do not hesitate to let me know.
Wishing you all the best,
mrs pjd0 -
My New Husband's Radical Prostatectomymrspjd said:kaiser, treatment decisions, etc
Joey,
Before you rush into any treatment decision, I wanted to share our story. It's not meant to scare you or recommend any treatment option, only to inform you of our experience, so that you might make the best decision that is right for you. My husband's (pjd) PCa was diagnosed in February 2010 at Kaiser in So Cal by a great urologist (the Urology Dept Chief). Pjd's psa was 2.28 so no red flag. DRE exam found a nodule. 12 core biopsy taken, with 9/12 cores positive and PNI (perineural invasion) identified. Initial (Kaiser) gleason was 3+3=6 and we were told by Kaiser that pjd was a clinical stage T2b and that we had several treatment options, including open surgery, robotic surgery, etc. At this point, surgery may have made sense, but we decided to take some time and educate ourselves, talking to lots of docs (see my previous posts on other threads), both inside and outside of Kaiser. We paid for the outside doc consults ourselves while we were still in Kaiser. We decided to do a few things before we made any treatment decision. First, pjd made arrangements to pick up his slides from the Kaiser lab and sent them out for a 2nd opinion (he used Epstein at Johns Hopkins). They came back with a revised gleason of 3+4=7, confirmed the PNI, and showed many of the 9/12 cores to be at 100% (high volume--not good). Then we asked Kaiser to do a bone scan and a pelvic CT in order to rule out metastases. Both were negative, although we know those studies do not pick up microscopic cancer cells. Pjd got a color dopler ultrasound by a well known doc here in So Cal and he qualified for a study at UCSF where he had an endorectal MRI w/Spec. Both of these two additional studies confirmed what we knew was very likely--that the PCa was outside the capsule, in the right seminal vesicle and regional. So pjd's clincial stage was now changed to T3b.
After consults with many Kaiser docs as well as top rated (experienced and skilled) PCa surgeons at both Stanford and UCSF, we were told that open surgery could be done, but would be a long and difficult procedure and positive margins would be likely with follow up radiation also very likely after surgery. Both surgeons actually recommended hormone therapy with radiation as an alternative to surgery since studies have shown similiar long term outcomes. BTW, although we had considered open surgery, we did not consider robotic surgery because even with the best skilled and experienced robotic surgeon, open surgery can get better angles and wider margins as well as more complete lymph node removal, which is what pjd would have needed if he chose surgery. When we asked the surgeons about the benefit of getting a "real time" or "pathology" staging obtained from RP, we were told by all the surgeons that you do not do a RP surgery to obtain a "pathology staging" ... you do it to remove all the cancer, and if you know ahead of time, especially with a clincial T3b staging that chances are not good of removing all the cancer, then you have to consider all the treatment options, the host of likely side effects, and make your best treatment decision to get rid of the cancer while minimizing all the possible side effects.
Although we had a good experience at Kaiser, especially since they were able to make the diagnosis, we were fortunate to have other insurance options and have left Kaiser to pursue treatment outside of the "HMO" realm. There are many fine doctors at Kaiser and each venue is different. Although you do not mention the results of your biopsy, whatever you decide, take the time to do your homework and research, read the experiences of the courageous men on this site, interview lots of Kaiser docs (robotic & open surgeons, radiology oncologists, urological oncologists, etc), ask alot of questions, and choose the most experienced & skilled doc for the treatment you decide on.
Best,
mrs pjdHello everyone,
My husband (52) and I were recently married in September and now are trying to understand the best treatment options for this most recent diagnosis. The information I found on this chat board has been helpful but a bit overwhelming, too, since it doesn't seem like we have a lot of time to work with. My husband's PSA was 14 as of a few weeks ago and after 12 biopsies, they found all but one section positive for cancer. His gleason score is 3 + 4 = 7 and so the doctors are suggesting surgery by robotic removal within 4 months. The doctor said that if he was his own brother he would not wait longer than this. We are in the Kaiser system, which I recently heard was a very good system, but I of course wish for my husband to have the best of the best. He is having a whole body bone scan this week, then a CT scan next week. I wonder, however, if a pelvic CT is included in this test as someone had suggested the benefit of this sort of exam.
I'm a bit overwhelmed with all the information so please forgive me if some of my questions are random. For instance, the idea of multiple second opinions seems daunting. How can this be done? Does this mean that he will have to be biopsied again and again, or can he just send his results from Kaiser to other doctors. I would like him also to see any experts outside the Kaiser system and hoping there are a few in the Bay Area. Does anyone know any top urologists/surgeons?
As for the suggested prostatectomy, it seems to make sense why the doctors are recommending this to be the best route. They say there is a better chance than radiation concerning the removal of all or most of the cancer since it's such a radical procedure. The Kaiser doctor we spoke with said that open surgery and the DaVinci method are fairly equivalent in the outcomes even in regard to nerve sparing. With the robotic removal, they will remove the seminal vesicles even though, at present, there is no indication of cancer present in the vesicles.
His numbers look like this:
a. right apx, gleason 6...positive, 8 of 45 mm affected
b. right mid, gleason 7, positive 4 of 31 mm affected
c. right base, benign, negative
d. left apex , gleason 7 12 of 38 mm affected, positive (1/3)
e. left middle, gleason 7, 19 of 38 mm affected, positive (1/2)
f. left base, gleason 7, 3 of 48 affected, positive
If anyone has any illuminating advice for me, especially in regard to excellent doctors in the area. I would be very grateful. I am very heartbroken over this diagnosis. We only just got married.
Thank you,
Michelle
p.s if there's a better way to post, please let me know...I'm a little fuzzy-headed right now...Thanks
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