Kaiser Northern CA Therapy Options
Background:
Age 64
PSA 5.7
Biopsy (9/20/2010) 2 cores positive, Right Base 5% of core involveld and Right Mid 15-20%
Gleason 3+3=6
Stage T1c
DRE nothing
Good general health
Family history brother with both prostate and colon cancer
Comments
-
LCB2 regarding Kaiser
I'm in Northern CA as well. I was 66 when diagnosed with PC. Out of 10 samples, my Gleason was 3+3,3+3 and 3+4. T1C with no DRE indication. PSA was 4.8 but dropped to 3.4 just prior to surgery. After considering all options, I went with brachytherapy on January 10, 2008.
As you are probably aware, Kaiser performs brachytherapy in Roseville and you will have to go up there twice prior to surgery. First visit for consultation to see if you're elegible for the procedure and then again for a "class" explaining what it's all about.
I was in and out the same day although I have almost no memory of the trip back to the Bay Area
All went fairly well but in the second year I took a backward step and had some symptons related to urination and the sudden desire to have a bowel movement (this also ocurred a bit after my original surgery). According to my oncologist, this is not "normal" but it does happen in the second year on occasion. I had to resume taking terazosin (2mg) for a few months to help me urinate but no longer do so. ED is an issue but it's hard to tell if it's a side effect or age-related (turn 69 tomorrow)or a little of both.
It's not an easy decision to make but it's clearly in your "punch bowl." Don't let all the options lead you to the point wherein you feel paralyzed and can't make a decision. While I have had second thoughts on occasion (and I can't really tell you why) overall I'm satisfied with my choice and would chose the same path again. FYI, Kaiser does have a support group that meets (I think) on the second Tuesday of each month. I don't know which facility you are nearest but you might want to check out that option as part of your decision making process to hear first hand what others have experienced.
I hope this helps to some degree.
Kent0 -
I Opted Out
I was a NorCal Kaiser member too; had been for life until I opted out during open enrollment in April 2010. My stats were 59 (at time of treatment), Gleason 6, PSA 4.8, neg DRE and Stage T1c; only 1 small (less than a mm) piece of one core found in the biospy; excellent health otherwise but father had PCa too.
The only choices given to me at Kaiser were the same as those given to you: Active Surveillance (AS), Brachytherapy (BT) and Surgery (open or robotic). I talked w/3 Kaiser urologist/surgeons in the SF Bay Area (and didn't think that any of them had enough experience to work on me and wouldn't recommend any of them), did the BT orientation and prostate mapping/screening in Roseville and did 3 months of independent research on all available treatment methods available, their side effects and track record and decided that the choices available to me at Kaiser were unacceptable.
Surgery presented too many risks and side effects for me to even consider it, unless there was no other choice available -- continued erectile function and avoidance of catheters and diapers following treatment were high priorities for me and surgery presents way too many problems (documented on this forum) in this regard -- some people can recover quickly, some not and some never -- too much of a crap shoot for me. BT appealed to me initially but decided that I didn't want to be "radioactive" for the 1 yr 1/2 life of the seeds and didn't want all of those seeds buried inside me for life afterward. BT also can require the use of a catheter for a short time following treatment and improper seed placement can cause serious collateral tissue damage. Active surveillance was a viable choice for the short term but if the PCa developed further I'd have to do something about it eventually. If the only choice was to do nothing or do surgery, I'd would have opted to do nothing (namely, AS), but if there was a less detrimental alternative, which there was (see below), then I felt that no real good could come from waiting.
In my research, I found out that the UCSF Med Center (which is one of the premier medical school/hospitals in the nation) through the Helen Diller Family Comprehensive Cancer Center located on Divisadero only a block away from Kaiser on Geary in SF offered CyberKnife (CK) SBRT - sterotactic body radiation therapy for prostate cancer. IMHO, CK is currently the MOST advanced and precise method of radiation treatment available for prostate (and other cancers), which dramatically minimizes potential side effects normally experienced following surgery and other radiation treatments resulting from radiation damage to collateral body tissues and organs, particularly the rectum, urethra, bladder and the vascular bulb (which feeds blood to your penis).
CK is appropriate for early stage PCa patients and can deliver radiation with a degree of precision in dosage and location that far exceeds all other radiation treatment methods -- including BT, IMRT and EBRT. I also found out that CK was covered by CA Blue Shield which was available to me through my retirement health care program during open enrollment, so I switched and, if you can switch to CA Blue Shield to get CK, you should consider doing so too.
I got treated at the end of September with absolutely NO side effects -- no ED, no urinary incontinence, no bowel or bladder irritation, no fatigue . . . just a little bit of urinary urgency which should resolve itself in time. The jury is still out on the overall results but I can wait -- it's kind of like waiting for PSA results during AS but, in this case, I've already been treated and expect to see the PSA levels drop rather than worrying about whether the readings are going to go up or not due to the lack of treatment. First followup PSA test is in December and the nadir is not expected for at least 5 years, but reports from men who have received treatment beyond 2 years indicate that PSA levels below 1 can be expected in that time period. So, I'm optimistic. However, like other radiation treatments, there can be a "bump" in the PSA along w/some bowel and/or urinary complications 18months to 2 years out, but not everyone experiences this. Kongo (4 months ago) and ViperFred (over 2 years ago) are 2 others on this board who have received CK treatment.
Good luck in finding the treatment option BEST for you -- not just the best treatment available to you at Kaiser!!0 -
lcb2
Your numbers are low, and you are an excellent candidate for every treatment option depending on your answers to these two questions. You state that your PSA is 5.7......what is your PSA history, is it stable, rising, etc. HOw many total cores were taken?
I agree with swing as far as Kaiser; if you have the resources to switch away, do so....how soon will you be 65 and eligible for medicare?
I was diagnosed for my 66 birthday, and my numbers are very similar to yours.......I was told by a surgeon that I have indolent cancer, that is not likely to spread and he refused to consider surgery with me....I am on Active Surveillance for the last year and half.....below is a copy of what I posted "about me" which is my experience. I hope that it will be helpful to you.
-------------------------------------
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a lipoma 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(tesla 1.5) 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 2.0
Entered in a research study for active surveillance .
PSA , 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
second opinion confirm no cancer
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 slides 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 -
Welcome
LCB,
Welcome to the forum and I'm sorry that you found it necessary to be here. None of us are happy with a diagnosis of PCa but I think you will find this forum useful in sorting through potential treatment options based on the experience of others.
As Swing suggested in his post, you may wish to consider options outside the Kaiser HMO. Many HMOs, including Kaiser, offer a fairly limited range of options to treat prostate cancer and as new advances are appearing every day, I am sure you want the flexibility to choose what YOU think is best for you rather than having to settle for the choices your insurance provider gives you.
While brachytherapy is a common and successful method of treatment, there are other newer forms of fractional external radiation such as IMRT and SBRT that may be even more effective but are not covered within your HMO. Proton therapy is another option that Kaiser does not cover. If you choose surgery, either open RP or robotic, you will want to put yourself in the hands of the most experienced surgeon available and that person might not be in the Kaiser network.
Given your age and approaching Medicare eligibility you may want to consider following a path of active surveillance as Ira suggested, at least until you have the ability to choose more options. Given the statistics you described regarding your pathology it does not appear that there is a big rush to make a near term treatment decision and many studies suggested that delaying treatment with low risk cancer (PSA < 10, Stage T1c, Gleason 6 or less) will not adversely affect follow on options.
Like Swingshift, I was diagnosed with low risk PCa and elected to be treated with SBRT via the CyberKnife system and have had zero side effects. I was pretty much unrestricted in my treatment options and based my treatment decision on curative potential coupled with low risk of side effects. If I had been restricted in my choices based on insurance coverage, I would not have been able to obtain a treatment consistent with my individual priorities.
Best of luck as you sort your way through this.
=======================
Diagnosed in March 2010 (Age 59) based on an increase in PSA to 4.3. DRE negative. No family history of prostate cancer. Biopsy had 1 of 12 cores positive with 15% involvement. Gleason 3+3=6. Stage T1c.
Treatment with SBRT via CyberKnife in July 2010. Zero side effects with respect to urinary discomfort, rectal toxicity, or ED. 3 month post treatment PSA was 1.35, which is on the predicted post treatment glideslope as the PSA approaches nadir.0 -
Best treatment in or out of Kaiserhopeful and optimistic said:lcb2
Your numbers are low, and you are an excellent candidate for every treatment option depending on your answers to these two questions. You state that your PSA is 5.7......what is your PSA history, is it stable, rising, etc. HOw many total cores were taken?
I agree with swing as far as Kaiser; if you have the resources to switch away, do so....how soon will you be 65 and eligible for medicare?
I was diagnosed for my 66 birthday, and my numbers are very similar to yours.......I was told by a surgeon that I have indolent cancer, that is not likely to spread and he refused to consider surgery with me....I am on Active Surveillance for the last year and half.....below is a copy of what I posted "about me" which is my experience. I hope that it will be helpful to you.
-------------------------------------
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a lipoma 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(tesla 1.5) 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 2.0
Entered in a research study for active surveillance .
PSA , 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
second opinion confirm no cancer
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 slides 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 Excellent advice. As to your questions PSA 11/08=3.5 and 7/10=5.7 PSADT=28 months.
12 cores were taken with 2 postive 1 was 5% other was 20%. I turn 65 in Feb so one of my decesions is do I stay within Kaiser or go outside after Medicare coverage. Any additional thoughts greatly appreciated.0 -
treatment decision
Two of twelve cores, gleason six with low involment is considered low risk disease, and this makes you an excellent candidate for active surveillance.....your PSA is rising somewhat, and I strongly suggest that you find an major institution, a center of excellence such as UCSF that may specialize in active surveillance where you can hear what they will say....As Kongo mentioned in more detail, a lot of these hmo's are profit based and do not have a variety of resources available for excellence in treatment..........Fro example it would be a good idea for you to have an MRI (tesla 3.0) wtih a spectroscopy to see where there may be involvement, and if it has excaped the capsule...this is not available at Kaiser.
Additionally, in my opinion this is important to do now..............that is, get a second opinion of the pathology from an expert in the field, There are a few...Boswick is one...it is very complicated to analyze the gleason scores, and you want to make sure that your pathology is right.......as I remember, Swing had done this while he was with Kaiser.....hopefully he can give you more detail.0 -
2nd Opinion on PathologySwingshiftworker said:I Opted Out
I was a NorCal Kaiser member too; had been for life until I opted out during open enrollment in April 2010. My stats were 59 (at time of treatment), Gleason 6, PSA 4.8, neg DRE and Stage T1c; only 1 small (less than a mm) piece of one core found in the biospy; excellent health otherwise but father had PCa too.
The only choices given to me at Kaiser were the same as those given to you: Active Surveillance (AS), Brachytherapy (BT) and Surgery (open or robotic). I talked w/3 Kaiser urologist/surgeons in the SF Bay Area (and didn't think that any of them had enough experience to work on me and wouldn't recommend any of them), did the BT orientation and prostate mapping/screening in Roseville and did 3 months of independent research on all available treatment methods available, their side effects and track record and decided that the choices available to me at Kaiser were unacceptable.
Surgery presented too many risks and side effects for me to even consider it, unless there was no other choice available -- continued erectile function and avoidance of catheters and diapers following treatment were high priorities for me and surgery presents way too many problems (documented on this forum) in this regard -- some people can recover quickly, some not and some never -- too much of a crap shoot for me. BT appealed to me initially but decided that I didn't want to be "radioactive" for the 1 yr 1/2 life of the seeds and didn't want all of those seeds buried inside me for life afterward. BT also can require the use of a catheter for a short time following treatment and improper seed placement can cause serious collateral tissue damage. Active surveillance was a viable choice for the short term but if the PCa developed further I'd have to do something about it eventually. If the only choice was to do nothing or do surgery, I'd would have opted to do nothing (namely, AS), but if there was a less detrimental alternative, which there was (see below), then I felt that no real good could come from waiting.
In my research, I found out that the UCSF Med Center (which is one of the premier medical school/hospitals in the nation) through the Helen Diller Family Comprehensive Cancer Center located on Divisadero only a block away from Kaiser on Geary in SF offered CyberKnife (CK) SBRT - sterotactic body radiation therapy for prostate cancer. IMHO, CK is currently the MOST advanced and precise method of radiation treatment available for prostate (and other cancers), which dramatically minimizes potential side effects normally experienced following surgery and other radiation treatments resulting from radiation damage to collateral body tissues and organs, particularly the rectum, urethra, bladder and the vascular bulb (which feeds blood to your penis).
CK is appropriate for early stage PCa patients and can deliver radiation with a degree of precision in dosage and location that far exceeds all other radiation treatment methods -- including BT, IMRT and EBRT. I also found out that CK was covered by CA Blue Shield which was available to me through my retirement health care program during open enrollment, so I switched and, if you can switch to CA Blue Shield to get CK, you should consider doing so too.
I got treated at the end of September with absolutely NO side effects -- no ED, no urinary incontinence, no bowel or bladder irritation, no fatigue . . . just a little bit of urinary urgency which should resolve itself in time. The jury is still out on the overall results but I can wait -- it's kind of like waiting for PSA results during AS but, in this case, I've already been treated and expect to see the PSA levels drop rather than worrying about whether the readings are going to go up or not due to the lack of treatment. First followup PSA test is in December and the nadir is not expected for at least 5 years, but reports from men who have received treatment beyond 2 years indicate that PSA levels below 1 can be expected in that time period. So, I'm optimistic. However, like other radiation treatments, there can be a "bump" in the PSA along w/some bowel and/or urinary complications 18months to 2 years out, but not everyone experiences this. Kongo (4 months ago) and ViperFred (over 2 years ago) are 2 others on this board who have received CK treatment.
Good luck in finding the treatment option BEST for you -- not just the best treatment available to you at Kaiser!!
Thanks for advice. Did you get a 2nd opinion on pathology while at Kaiser. If correct who did you go to for this?
I plan on looking into Blue Shield. However, I turn 65 in Feb. Understand that Blue Shield no longer covers Cyberknife as a Medicare provider in CA. Will have to research this more.0 -
2nd Opinion, Blue Shield and UCSFLCB2 said:2nd Opinion on Pathology
Thanks for advice. Did you get a 2nd opinion on pathology while at Kaiser. If correct who did you go to for this?
I plan on looking into Blue Shield. However, I turn 65 in Feb. Understand that Blue Shield no longer covers Cyberknife as a Medicare provider in CA. Will have to research this more.
I received a 2nd opinion by Jonathan Epstein, MD at Johns Hopkins, who is considered one of the foremost experts in the field. Paid for it myself -- cost $170. The PCa was confirmed.
Don't know much about Medicare (I'm only 60) but I have a copy of Blue Shield's most recent policy statement on SBRT and it says the covers it and they've paid for all of my CK treatments, MRI/CT scans and related visits. UCSF charges $70,000 to insurers for the treatments ($49K if out of pocket, if uninsured and paid by the patient).
FWIW, Kaiser actually has a CK treatment center in SSF. Just Google, Kaiser, CK and SSF to find it. However, they do not use CK to treat PCA -- only brain, lung, spine and other cancers that they consider "inoperable" and otherwise untreatable. I believe that Kaiser has made a policy decision NOT to treat PCa w/CK because it has a large staff of urologist/surgeons who are trained to do open and robotic (DaVinci) surgery and because they have a large staff of urologists, radiation oncologists and other staff at the Brachytherapy Center in Roseville in which they have a huge financial and program commitment -- and they have decided that these are the only ways they are going to treat PCa.
I didn't try to fight Kaiser about this -- it was easier for me to switch to UCSF to get CK -- but if you can't get CK any other way, you might want to try to get Kaiser to change that policy -- but it will be a battle, since Kaiser is it's own arbiter of what is medically necessary. Never heard of anyone trying to appeal it to the Insurance Commissioner, but that's what others have done in order to get CK and other treatments approved by Blue Shield and other medical insurance companies, who previously refused CK and other treatments on the grounds that they were either "experimental" or "not medically necessary." Kaiser's position probably would be lack of medical necessity, given its "successful" use of surgery and BT to treat PCa previously -- and they have a lot of documentation on that.
OBTW, UCSF has everything you could possibly want in terms of PCa treatment. They have a nationally recognized AS program as well as surgeons (open or robotic) and all forms of radiation treatment available, including CK. So, if you aren't sure what method of treatment you wan to choose, a switch to UCSF under Blue Shield (they're in the Hills Physicians Group) would allow you to choose any method you want (rather than being limited to only what Kaiser is willing to offer. The only problem would be if you still can't get CK because it isn't covered under Blue Shield's Medicare supplemental program.
I just read a 2 yr old NY Times article (http://www.auntminnie.com/index.asp?sec=ser&sub=def&pag=dis&ItemID=84070) which says that Medicare approves CK in 33 states but not in 17 others (mostly western states, including CA) because Medicare contractors in those states still classify CK as experimental. Frankly, even if Medicare does not cover CK in CA, I don't see why Blue Shield still shouldn't still cover CK (even under a Medicare supplemental program), given it's own policy on the subject. Of course, if they argue that they only provide what Medicare will pay for under a Medicare supplemental policy, then the only choice you'd have would be to MOVE to a state where Medicare pays for CK -- which would be a PITA but not impossible to do.
OBTW, UCSF is a very good patient advocate with medical insurance companies. They can't guarantee coverage, but they will do their best to get the treatment you need (including filing medical appeals w/the Insurance Commissioner) and will not refuse treatment even if it is not covered. Hope it doesn't come to that for you, but that is an option if CK is not covered by Blue Shield/Medicare in CA and you want to hold out for CK vs other forms of treatment without moving to another state to get it.
Good luck!!!0 -
Still wiehing optionsSwingshiftworker said:I Opted Out
I was a NorCal Kaiser member too; had been for life until I opted out during open enrollment in April 2010. My stats were 59 (at time of treatment), Gleason 6, PSA 4.8, neg DRE and Stage T1c; only 1 small (less than a mm) piece of one core found in the biospy; excellent health otherwise but father had PCa too.
The only choices given to me at Kaiser were the same as those given to you: Active Surveillance (AS), Brachytherapy (BT) and Surgery (open or robotic). I talked w/3 Kaiser urologist/surgeons in the SF Bay Area (and didn't think that any of them had enough experience to work on me and wouldn't recommend any of them), did the BT orientation and prostate mapping/screening in Roseville and did 3 months of independent research on all available treatment methods available, their side effects and track record and decided that the choices available to me at Kaiser were unacceptable.
Surgery presented too many risks and side effects for me to even consider it, unless there was no other choice available -- continued erectile function and avoidance of catheters and diapers following treatment were high priorities for me and surgery presents way too many problems (documented on this forum) in this regard -- some people can recover quickly, some not and some never -- too much of a crap shoot for me. BT appealed to me initially but decided that I didn't want to be "radioactive" for the 1 yr 1/2 life of the seeds and didn't want all of those seeds buried inside me for life afterward. BT also can require the use of a catheter for a short time following treatment and improper seed placement can cause serious collateral tissue damage. Active surveillance was a viable choice for the short term but if the PCa developed further I'd have to do something about it eventually. If the only choice was to do nothing or do surgery, I'd would have opted to do nothing (namely, AS), but if there was a less detrimental alternative, which there was (see below), then I felt that no real good could come from waiting.
In my research, I found out that the UCSF Med Center (which is one of the premier medical school/hospitals in the nation) through the Helen Diller Family Comprehensive Cancer Center located on Divisadero only a block away from Kaiser on Geary in SF offered CyberKnife (CK) SBRT - sterotactic body radiation therapy for prostate cancer. IMHO, CK is currently the MOST advanced and precise method of radiation treatment available for prostate (and other cancers), which dramatically minimizes potential side effects normally experienced following surgery and other radiation treatments resulting from radiation damage to collateral body tissues and organs, particularly the rectum, urethra, bladder and the vascular bulb (which feeds blood to your penis).
CK is appropriate for early stage PCa patients and can deliver radiation with a degree of precision in dosage and location that far exceeds all other radiation treatment methods -- including BT, IMRT and EBRT. I also found out that CK was covered by CA Blue Shield which was available to me through my retirement health care program during open enrollment, so I switched and, if you can switch to CA Blue Shield to get CK, you should consider doing so too.
I got treated at the end of September with absolutely NO side effects -- no ED, no urinary incontinence, no bowel or bladder irritation, no fatigue . . . just a little bit of urinary urgency which should resolve itself in time. The jury is still out on the overall results but I can wait -- it's kind of like waiting for PSA results during AS but, in this case, I've already been treated and expect to see the PSA levels drop rather than worrying about whether the readings are going to go up or not due to the lack of treatment. First followup PSA test is in December and the nadir is not expected for at least 5 years, but reports from men who have received treatment beyond 2 years indicate that PSA levels below 1 can be expected in that time period. So, I'm optimistic. However, like other radiation treatments, there can be a "bump" in the PSA along w/some bowel and/or urinary complications 18months to 2 years out, but not everyone experiences this. Kongo (4 months ago) and ViperFred (over 2 years ago) are 2 others on this board who have received CK treatment.
Good luck in finding the treatment option BEST for you -- not just the best treatment available to you at Kaiser!!
All in puts have been extremely helpful towards making a treatment decision.
Still lookijng at Bracytherapy at Kaiser. However, have done some homework on SBRT. Are there any specicic SBRT studies that you think worth my reviewing?
Did Dr. Gottschalk at UCSF do yours and Kongo? How did you contact Dr Gottschalk Directly or did you start through Diller Cancer Center?
Any reason you both chose UCSF versus Stanford for Cyberknife?
I am considering the following: Shortterm getting 2nd opinion and evaluate treatment options (incuding SBRT) outside of Kaiser ( UCSF, Stanford, maybe UCLA) at my expense. Based this evaluation I would either stay in Kaiser or opt out with Medicare + supplemental in February.
Your thoughts always appreciated.0 -
Still wiehing optionsSwingshiftworker said:I Opted Out
I was a NorCal Kaiser member too; had been for life until I opted out during open enrollment in April 2010. My stats were 59 (at time of treatment), Gleason 6, PSA 4.8, neg DRE and Stage T1c; only 1 small (less than a mm) piece of one core found in the biospy; excellent health otherwise but father had PCa too.
The only choices given to me at Kaiser were the same as those given to you: Active Surveillance (AS), Brachytherapy (BT) and Surgery (open or robotic). I talked w/3 Kaiser urologist/surgeons in the SF Bay Area (and didn't think that any of them had enough experience to work on me and wouldn't recommend any of them), did the BT orientation and prostate mapping/screening in Roseville and did 3 months of independent research on all available treatment methods available, their side effects and track record and decided that the choices available to me at Kaiser were unacceptable.
Surgery presented too many risks and side effects for me to even consider it, unless there was no other choice available -- continued erectile function and avoidance of catheters and diapers following treatment were high priorities for me and surgery presents way too many problems (documented on this forum) in this regard -- some people can recover quickly, some not and some never -- too much of a crap shoot for me. BT appealed to me initially but decided that I didn't want to be "radioactive" for the 1 yr 1/2 life of the seeds and didn't want all of those seeds buried inside me for life afterward. BT also can require the use of a catheter for a short time following treatment and improper seed placement can cause serious collateral tissue damage. Active surveillance was a viable choice for the short term but if the PCa developed further I'd have to do something about it eventually. If the only choice was to do nothing or do surgery, I'd would have opted to do nothing (namely, AS), but if there was a less detrimental alternative, which there was (see below), then I felt that no real good could come from waiting.
In my research, I found out that the UCSF Med Center (which is one of the premier medical school/hospitals in the nation) through the Helen Diller Family Comprehensive Cancer Center located on Divisadero only a block away from Kaiser on Geary in SF offered CyberKnife (CK) SBRT - sterotactic body radiation therapy for prostate cancer. IMHO, CK is currently the MOST advanced and precise method of radiation treatment available for prostate (and other cancers), which dramatically minimizes potential side effects normally experienced following surgery and other radiation treatments resulting from radiation damage to collateral body tissues and organs, particularly the rectum, urethra, bladder and the vascular bulb (which feeds blood to your penis).
CK is appropriate for early stage PCa patients and can deliver radiation with a degree of precision in dosage and location that far exceeds all other radiation treatment methods -- including BT, IMRT and EBRT. I also found out that CK was covered by CA Blue Shield which was available to me through my retirement health care program during open enrollment, so I switched and, if you can switch to CA Blue Shield to get CK, you should consider doing so too.
I got treated at the end of September with absolutely NO side effects -- no ED, no urinary incontinence, no bowel or bladder irritation, no fatigue . . . just a little bit of urinary urgency which should resolve itself in time. The jury is still out on the overall results but I can wait -- it's kind of like waiting for PSA results during AS but, in this case, I've already been treated and expect to see the PSA levels drop rather than worrying about whether the readings are going to go up or not due to the lack of treatment. First followup PSA test is in December and the nadir is not expected for at least 5 years, but reports from men who have received treatment beyond 2 years indicate that PSA levels below 1 can be expected in that time period. So, I'm optimistic. However, like other radiation treatments, there can be a "bump" in the PSA along w/some bowel and/or urinary complications 18months to 2 years out, but not everyone experiences this. Kongo (4 months ago) and ViperFred (over 2 years ago) are 2 others on this board who have received CK treatment.
Good luck in finding the treatment option BEST for you -- not just the best treatment available to you at Kaiser!!
All in puts have been extremely helpful towards making a treatment decision.
Still lookijng at Bracytherapy at Kaiser. However, have done some homework on SBRT. Are there any specicic SBRT studies that you think worth my reviewing?
Did Dr. Gottschalk at UCSF do yours and Kongo? How did you contact Dr Gottschalk Directly or did you start through Diller Cancer Center?
Any reason you both chose UCSF versus Stanford for Cyberknife?
I am considering the following: Shortterm getting 2nd opinion and evaluate treatment options (incuding SBRT) outside of Kaiser ( UCSF, Stanford, maybe UCLA) at my expense. Based this evaluation I would either stay in Kaiser or opt out with Medicare + supplemental in February.
Your thoughts always appreciated.0 -
Still wiehing optionsSwingshiftworker said:I Opted Out
I was a NorCal Kaiser member too; had been for life until I opted out during open enrollment in April 2010. My stats were 59 (at time of treatment), Gleason 6, PSA 4.8, neg DRE and Stage T1c; only 1 small (less than a mm) piece of one core found in the biospy; excellent health otherwise but father had PCa too.
The only choices given to me at Kaiser were the same as those given to you: Active Surveillance (AS), Brachytherapy (BT) and Surgery (open or robotic). I talked w/3 Kaiser urologist/surgeons in the SF Bay Area (and didn't think that any of them had enough experience to work on me and wouldn't recommend any of them), did the BT orientation and prostate mapping/screening in Roseville and did 3 months of independent research on all available treatment methods available, their side effects and track record and decided that the choices available to me at Kaiser were unacceptable.
Surgery presented too many risks and side effects for me to even consider it, unless there was no other choice available -- continued erectile function and avoidance of catheters and diapers following treatment were high priorities for me and surgery presents way too many problems (documented on this forum) in this regard -- some people can recover quickly, some not and some never -- too much of a crap shoot for me. BT appealed to me initially but decided that I didn't want to be "radioactive" for the 1 yr 1/2 life of the seeds and didn't want all of those seeds buried inside me for life afterward. BT also can require the use of a catheter for a short time following treatment and improper seed placement can cause serious collateral tissue damage. Active surveillance was a viable choice for the short term but if the PCa developed further I'd have to do something about it eventually. If the only choice was to do nothing or do surgery, I'd would have opted to do nothing (namely, AS), but if there was a less detrimental alternative, which there was (see below), then I felt that no real good could come from waiting.
In my research, I found out that the UCSF Med Center (which is one of the premier medical school/hospitals in the nation) through the Helen Diller Family Comprehensive Cancer Center located on Divisadero only a block away from Kaiser on Geary in SF offered CyberKnife (CK) SBRT - sterotactic body radiation therapy for prostate cancer. IMHO, CK is currently the MOST advanced and precise method of radiation treatment available for prostate (and other cancers), which dramatically minimizes potential side effects normally experienced following surgery and other radiation treatments resulting from radiation damage to collateral body tissues and organs, particularly the rectum, urethra, bladder and the vascular bulb (which feeds blood to your penis).
CK is appropriate for early stage PCa patients and can deliver radiation with a degree of precision in dosage and location that far exceeds all other radiation treatment methods -- including BT, IMRT and EBRT. I also found out that CK was covered by CA Blue Shield which was available to me through my retirement health care program during open enrollment, so I switched and, if you can switch to CA Blue Shield to get CK, you should consider doing so too.
I got treated at the end of September with absolutely NO side effects -- no ED, no urinary incontinence, no bowel or bladder irritation, no fatigue . . . just a little bit of urinary urgency which should resolve itself in time. The jury is still out on the overall results but I can wait -- it's kind of like waiting for PSA results during AS but, in this case, I've already been treated and expect to see the PSA levels drop rather than worrying about whether the readings are going to go up or not due to the lack of treatment. First followup PSA test is in December and the nadir is not expected for at least 5 years, but reports from men who have received treatment beyond 2 years indicate that PSA levels below 1 can be expected in that time period. So, I'm optimistic. However, like other radiation treatments, there can be a "bump" in the PSA along w/some bowel and/or urinary complications 18months to 2 years out, but not everyone experiences this. Kongo (4 months ago) and ViperFred (over 2 years ago) are 2 others on this board who have received CK treatment.
Good luck in finding the treatment option BEST for you -- not just the best treatment available to you at Kaiser!!
All in puts have been extremely helpful towards making a treatment decision.
Still lookijng at Bracytherapy at Kaiser. However, have done some homework on SBRT. Are there any specicic SBRT studies that you think worth my reviewing?
Did Dr. Gottschalk at UCSF do yours and Kongo? How did you contact Dr Gottschalk Directly or did you start through Diller Cancer Center?
Any reason you both chose UCSF versus Stanford for Cyberknife?
I am considering the following: Shortterm getting 2nd opinion and evaluate treatment options (incuding SBRT) outside of Kaiser ( UCSF, Stanford, maybe UCLA) at my expense. Based this evaluation I would either stay in Kaiser or opt out with Medicare + supplemental in February.
Your thoughts always appreciated.0 -
Dr. GottschalkLCB2 said:Still wiehing options
All in puts have been extremely helpful towards making a treatment decision.
Still lookijng at Bracytherapy at Kaiser. However, have done some homework on SBRT. Are there any specicic SBRT studies that you think worth my reviewing?
Did Dr. Gottschalk at UCSF do yours and Kongo? How did you contact Dr Gottschalk Directly or did you start through Diller Cancer Center?
Any reason you both chose UCSF versus Stanford for Cyberknife?
I am considering the following: Shortterm getting 2nd opinion and evaluate treatment options (incuding SBRT) outside of Kaiser ( UCSF, Stanford, maybe UCLA) at my expense. Based this evaluation I would either stay in Kaiser or opt out with Medicare + supplemental in February.
Your thoughts always appreciated.
I was treated with CK at UCSF by Dr. Gottschalk, but (as I recall) Kongo was treated in SoCal at a private CK treatment center. I never contacted Stanford and chose UCSF because of its equally good reputation and the fact that its consultation offices are located only minutes away from my apartment and only steps away from the Kaiser offices in the City. Treatment is actually done at the UCSF Medical Center on Parnassus near the center of town, but they are planning to add a machine at their offices on Divisadero as well.
When I found out about CK at UCSF, I contacted Dr. Gottschalk's office at the Helen Diller Family Comprehensive Cancer Center for a consultation. I took a month to arrange to actually see him on April 20th before open enrollment closed on April 30th. I paid for the consultation out of pocket because Kaiser would not reimburse me for it. It cost me $702 upfront but got a $250 refund later, so net cost was $452 to talk w/him for about an hour. If you want to arrange that, I can give you his email address so that you can do so likewise. He also gave me the names & email addresses of 3 past patients, who I also contacted, to find out about their experiences w/CK that I can give you as well.
All of the information I received from Dr. Gottschalk, the patient references and my research assured me that CK was the right choice for me. So, after deciding to make the switch from Kaiser to Blue Shield, I had to wait until July 1st (when the open enrollment change became effective) to actually become a member of Blue Shield and then had to wait until the end of September (after getting the CAT/MRI scans done) to actually receive the treatment due to the scheduling demands for use of the CK machine. Total time was 6 months from decision to treatment and, if I didn't make the April 30th open enrollment cutoff, I would have had to wait another year to receive treatment.
Just mentioning all of this to let you know that, if you decide to go w/CK, that there could be a significant time delay between the time you choose CK and the time you actually receive treatment -- the longer you take to make the decision, the longer it will be until you receive it.
I know that there are various studies available about CK -- it's effectiveness and side effects -- but the following is the most recent and best in summarizing past research and in analyzing the effectiveness of various dose rates and approaches in administering CK:
http://www.tcrt.org/CyberKnife-Radiosurgery-for-Prostate-Cancer-463-472-p17811.html.
Check it out! If you want references to more studies, ask Kongo who I think would be the best source for that.0 -
CyberknifeKongo said:Welcome
LCB,
Welcome to the forum and I'm sorry that you found it necessary to be here. None of us are happy with a diagnosis of PCa but I think you will find this forum useful in sorting through potential treatment options based on the experience of others.
As Swing suggested in his post, you may wish to consider options outside the Kaiser HMO. Many HMOs, including Kaiser, offer a fairly limited range of options to treat prostate cancer and as new advances are appearing every day, I am sure you want the flexibility to choose what YOU think is best for you rather than having to settle for the choices your insurance provider gives you.
While brachytherapy is a common and successful method of treatment, there are other newer forms of fractional external radiation such as IMRT and SBRT that may be even more effective but are not covered within your HMO. Proton therapy is another option that Kaiser does not cover. If you choose surgery, either open RP or robotic, you will want to put yourself in the hands of the most experienced surgeon available and that person might not be in the Kaiser network.
Given your age and approaching Medicare eligibility you may want to consider following a path of active surveillance as Ira suggested, at least until you have the ability to choose more options. Given the statistics you described regarding your pathology it does not appear that there is a big rush to make a near term treatment decision and many studies suggested that delaying treatment with low risk cancer (PSA < 10, Stage T1c, Gleason 6 or less) will not adversely affect follow on options.
Like Swingshift, I was diagnosed with low risk PCa and elected to be treated with SBRT via the CyberKnife system and have had zero side effects. I was pretty much unrestricted in my treatment options and based my treatment decision on curative potential coupled with low risk of side effects. If I had been restricted in my choices based on insurance coverage, I would not have been able to obtain a treatment consistent with my individual priorities.
Best of luck as you sort your way through this.
=======================
Diagnosed in March 2010 (Age 59) based on an increase in PSA to 4.3. DRE negative. No family history of prostate cancer. Biopsy had 1 of 12 cores positive with 15% involvement. Gleason 3+3=6. Stage T1c.
Treatment with SBRT via CyberKnife in July 2010. Zero side effects with respect to urinary discomfort, rectal toxicity, or ED. 3 month post treatment PSA was 1.35, which is on the predicted post treatment glideslope as the PSA approaches nadir.
At your and Swingshifts suggestion have begun my homework on SBRT.Where did you have your SBRT and who was Dr? I will most likely discuss with UCSF but might also consider Stanford or UCLA.
Also Swingshift thought you might be able to refer me to studies on SBRT comparative effectiveness and/side effects.
Thanks for all your input into my thought process.0 -
Already Linked You To One Paper On CKLCB2 said:Cyberknife
At your and Swingshifts suggestion have begun my homework on SBRT.Where did you have your SBRT and who was Dr? I will most likely discuss with UCSF but might also consider Stanford or UCLA.
Also Swingshift thought you might be able to refer me to studies on SBRT comparative effectiveness and/side effects.
Thanks for all your input into my thought process.
LCB2: In case you missed it, here's the link to one study that I already mentioned to you in my prior post:
http://www.tcrt.org/CyberKnife-Radiosurgery-for-Prostate-Cancer-463-472-p17811.html
The paper was written by Alan Katz, MD who is a CK practitioner in Long Island. This is the most recent and IMHO currently the best paper in summarizing prior research on CK and the best in analyzing dosage and treatment methods used in administering CK.
Kongo should have links to others, but chances are the other studies are already incorporated by reference in the paper above.0 -
CK in SoCalLCB2 said:Cyberknife
At your and Swingshifts suggestion have begun my homework on SBRT.Where did you have your SBRT and who was Dr? I will most likely discuss with UCSF but might also consider Stanford or UCLA.
Also Swingshift thought you might be able to refer me to studies on SBRT comparative effectiveness and/side effects.
Thanks for all your input into my thought process.
LCB, I had my procedure done at CyberKife of Southern California at Vista, which is affiliated with the Sharp Hospital in San Diego. My doctor was Patrick Linson, the Medical Director there. I know that men come from all over the country and from overseas to be treated there but frankly, with some of the world class facilities available in the Bay Area, I can't see much advantage in going a long way out of area. Another thing to keep in mind is that for a year or so, the CK team will want to follow up with you every three months so having someplace close just makes that easier.
Both UCSF and Stanford (they developed CK at Stanford) are world renowned in this area.
Best wishes for finding a solution that meets your needs, whether in be RP, CK, some other form of radiation, or AS.0 -
Cyber Knife PaperSwingshiftworker said:Already Linked You To One Paper On CK
LCB2: In case you missed it, here's the link to one study that I already mentioned to you in my prior post:
http://www.tcrt.org/CyberKnife-Radiosurgery-for-Prostate-Cancer-463-472-p17811.html
The paper was written by Alan Katz, MD who is a CK practitioner in Long Island. This is the most recent and IMHO currently the best paper in summarizing prior research on CK and the best in analyzing dosage and treatment methods used in administering CK.
Kongo should have links to others, but chances are the other studies are already incorporated by reference in the paper above.
Thanks for link. Katz results very similar to Christopher King's clinical trial at Stanford. You are also correct almost every study I have seen references Katz.
Also could you please send contact info for Gottschalk.0 -
Check Your Private MailLCB2 said:Cyber Knife Paper
Thanks for link. Katz results very similar to Christopher King's clinical trial at Stanford. You are also correct almost every study I have seen references Katz.
Also could you please send contact info for Gottschalk.
LCB2- Sending Dr. Gottschalk's contact info to you via CSN email.0 -
different brand names for equipment delivering SBRT
LCB2,
Since I haven't seen this discussed previously, if you're considering and investigating stereotactic body radiation (SBRT), one add'l piece of info you might want to research (if you haven't already done so) is that there is more than one "brand" or "manufacturer" of SBRT equipment. While both probably deliver the SBRT similarly, I believe there is a slight difference in the way each is set up prior to the tx. CyberKnife (CK) is the manufacturer's brand name for equipment that CK treatment centers and some other medical facitities use. UCLA, for instance, does not use "CyberKnife" brand equipment but rather Novalis TX (also called Varian) for delivering SBRT. Certain "panels" must first be put in place to "convert" or "ready" the Novalis for SBRT since it can also be used for IG/IMRT. Although different manufacturer's names (CK and Novalis/Varian), both are brands used for stereotactic body radiotherapy treatment. While there are some differences between the machines, I don't know if there are any studies determining whether those differences are significant in tx outcomes for PCa (guessing probably not). Dr. Chris King is the well-known CK doc formerly at Stanford (using CK), but recently recruited by UCLA. He is now using the Novalis for stereotactic RT in the tx of low risk PCa @ UCLA. My brother is enrolled in that study at UCLA and received his 5 SBRT txs there with Chris King several months ago. I'm unsure which brand of equipment UCSF is using for SBRT tx of PCa, but I'm sure Swing will have that info. None of this may make a difference in the long term outcome, but it's good to know that there are RT equipment differences.
All the best in whatever tx decision you determine is right for you.0 -
UCSF Uses CK by Accuray.mrspjd said:different brand names for equipment delivering SBRT
LCB2,
Since I haven't seen this discussed previously, if you're considering and investigating stereotactic body radiation (SBRT), one add'l piece of info you might want to research (if you haven't already done so) is that there is more than one "brand" or "manufacturer" of SBRT equipment. While both probably deliver the SBRT similarly, I believe there is a slight difference in the way each is set up prior to the tx. CyberKnife (CK) is the manufacturer's brand name for equipment that CK treatment centers and some other medical facitities use. UCLA, for instance, does not use "CyberKnife" brand equipment but rather Novalis TX (also called Varian) for delivering SBRT. Certain "panels" must first be put in place to "convert" or "ready" the Novalis for SBRT since it can also be used for IG/IMRT. Although different manufacturer's names (CK and Novalis/Varian), both are brands used for stereotactic body radiotherapy treatment. While there are some differences between the machines, I don't know if there are any studies determining whether those differences are significant in tx outcomes for PCa (guessing probably not). Dr. Chris King is the well-known CK doc formerly at Stanford (using CK), but recently recruited by UCLA. He is now using the Novalis for stereotactic RT in the tx of low risk PCa @ UCLA. My brother is enrolled in that study at UCLA and received his 5 SBRT txs there with Chris King several months ago. I'm unsure which brand of equipment UCSF is using for SBRT tx of PCa, but I'm sure Swing will have that info. None of this may make a difference in the long term outcome, but it's good to know that there are RT equipment differences.
All the best in whatever tx decision you determine is right for you.
UCSF Uses CK by Accuray.0 -
SBRT CKmrspjd said:different brand names for equipment delivering SBRT
LCB2,
Since I haven't seen this discussed previously, if you're considering and investigating stereotactic body radiation (SBRT), one add'l piece of info you might want to research (if you haven't already done so) is that there is more than one "brand" or "manufacturer" of SBRT equipment. While both probably deliver the SBRT similarly, I believe there is a slight difference in the way each is set up prior to the tx. CyberKnife (CK) is the manufacturer's brand name for equipment that CK treatment centers and some other medical facitities use. UCLA, for instance, does not use "CyberKnife" brand equipment but rather Novalis TX (also called Varian) for delivering SBRT. Certain "panels" must first be put in place to "convert" or "ready" the Novalis for SBRT since it can also be used for IG/IMRT. Although different manufacturer's names (CK and Novalis/Varian), both are brands used for stereotactic body radiotherapy treatment. While there are some differences between the machines, I don't know if there are any studies determining whether those differences are significant in tx outcomes for PCa (guessing probably not). Dr. Chris King is the well-known CK doc formerly at Stanford (using CK), but recently recruited by UCLA. He is now using the Novalis for stereotactic RT in the tx of low risk PCa @ UCLA. My brother is enrolled in that study at UCLA and received his 5 SBRT txs there with Chris King several months ago. I'm unsure which brand of equipment UCSF is using for SBRT tx of PCa, but I'm sure Swing will have that info. None of this may make a difference in the long term outcome, but it's good to know that there are RT equipment differences.
All the best in whatever tx decision you determine is right for you.
Thanks for the UCLA info. I did not know that Dr. King was there now. Might influence my decisions.
Presently I plan to get a 2nd opion on all treatment options and more specifically CK from either UCSF or Stanford. UC is more convenient. However, Stanford seems to have more experience with CK and PC treatment. UCLA is a third choice because of some potential insurance issues.0
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