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Recently diagnosed in Denver Best option with Kaiser?

JJPhare
Posts: 34
Joined: Apr 2011

Recently found this site and I'm very appreciative of all the info. I do 2-3 hours research per day and leaning strongly toward Cyberknife or brachytherapy. I have read ALL the posts on this and other sites. I am Gleason 6 (3+3), 2/12 cores -both on left side, 10% volume,T1c PSA 14.2 Age 62 , on coumadin from recurrent DVT thus surgery very risky per Kaiser urologist due to previous embolism.
Have any of you had DaVinci surgery through Kaiser (Dr Green) while on coumadin. I am aware one must be off for seven days).
Kaiser does not recognize CK in Colorado but they do have Cyberknife in California. Have any out of area Kaiser patients ever received a referral to do Cyberknife in other areas or California? If those fail, looks like my best option is brachytherapy. Anyone had experience with Kaiser in Denver with that treatment?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

JJ

As one who has successfully had CyberKnife treatment in California I do share your excitement about this treatment method. I was never a Kaiser patient but have heard they are often reluctant to authorize treatments outside their network or coverage region.

You always have the option to appeal their decision. While appeals are a hassle and sometimes take time, it may provide a treatment avenue for you. Recently on the CyberKnife.com website there was a discussion about the process of appeals to insurance denials. You may wish to read this threat at: http://cyberknife.com/Forum.aspx?g=posts&t=3718#jumptobottom

There is a frequent poster on that board who goes by ViperFred (he sometimes posts here) who probably knows more about insurance appeals than anyone else I've come across. He's even testified before Congress on it. He seems to be very open in providing advice, guidance, and even sample forms to start the process. I suggest you check it out.

Your low risk diagnosis puts you in the "ideal patient" category for the CK protocol, as I am sure your research has revealed. I am very happy with my treatment results which occurred last June and I have had zero side effects. My initial diagnosis was a PSA = 4.3, Gleason 3+3, 1 of 12 cores positive with 15% involvement. T1c. Normal DRE, no family history, and not symptoms other than the elevated PSA. Age 59.

In a discussion with my radiologist a few weeks ago he mentioned that a new 5-year CK study was out that was causing many of the insurance companies that had previously denied CyberKnife coverage because they deemed it "experimental" were now acknowledging the evidence and extending coverage. You can read about it at: http://www.ncbi.nlm.nih.gov/pubmed/21219625

In California there is a law that requires insurance companies to extend coverage to cancer treatments if the patient is part of a federally approved clinical study or trial. Although my insurance covered CK without question, I was enrolled in a trial and would have been approved had their been an issue. You may wish to see if Colorado has a similar law and whether or not the CyberKnife center you're considering would qualify you in any of the ongoing trials.

If you do end up pursuing CyberKnife, I would urge you to discuss with your medical team the option of having your treatments every other day instead of consecutively. The day's rest in between treatments, in my opinion, was a primary contributor to my lack of side effects. Dr. Chris King, the Stanford doctor who adapted CK for prostate cancer discovered that his patients had significantly reduced feelings of urinary urgency following treatment when using this every other day protocol. In any event, those men who do experience urgency after treatment see their symptoms pass within a few weeks to a month.

Considering that CK is significantly less expensive than either IMRT or brachytherapy, I would imagine that insurance companies, even large HMOs such as Kaiser, will soon come around.

Good luck to you

K

JJPhare
Posts: 34
Joined: Apr 2011

Thanks to all who answered my initial post.
I will be meeting with the Kaiser Radiology people in a few weeks to determine their opinions on things however as most people have discovered, each expert likes to recommend his own area. I will attempt to ask for a referral for CK either locally or California. CK people in Colorado Springs and Lone Tree wanted 18K-27K since it wasn't covered by Kaiser. They would do the procedure however the clinical trial calls for PSA <10. I have started the no dairy regimen in an attempt to lower the PSA.
Last week, an independent urologist from Boulder told me "take it from a surgeon, don't have surgery unless it's the last resort". So for now, my path is either toward brachy or CK. Thanks to all and I'll keep watching this site for continued invaluable info.

JJPhare
Posts: 34
Joined: Apr 2011

Thanks for letting me know the process that you went through.
I have spoken to a few CK radiologists and they informed me
that I will have to have fiducials/ markers implanted about a week before the CK procedure.
Since I have to go outside Kaiser to have the CK, I am not sure if they will entertain the thought of their urologists assisting in a procedure with which they do not agree (yet).
How involved / difficult / time consuming was that procedure?
Since I am on coumadin for 2 DVT's 20 years ago, I will have to go off for a week prior to having the implants. Fortunately, I will not have to stop coumadin for CK.
I still must meet with the Kaiser radiology team in 2 weeks but I am sure they will push BT and resist any referral to CK but I have never been known as a quitter. I will give it my best shot and all they can say is no.
Anyone out there who has had any experience with Kaiser "assisting" in a procedure that they do not endorse ?

Many thanks

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Duplicate

Beau2
Posts: 228
Joined: Sep 2010

Hey JJ,

First of all sorry you have to be asking these questions; however, I feel you have found a good site for obtaining answers.

Two years ago, I was operated on by Dr. Green. I was his 35th(?) patient at Kaiser (he had "participated" in a couple hundred as a fellow). The outcome was pretty good -- PSA is still less than 0.1 -- I was immediately continent/no drips -- ED is OK with pill and/or Trimix. I was 62 when I was DaVincied, and I do "think" that the younger you are the better the QOL results with surgery (i.e. guys in their 40's and 50's "seem" to recover better).

I was on coumadin because I had a Pulmonary Embolism five years earlier. I went off coumadin a week before the operation. This is pretty standard ... I had hernia repairs while on coumadin and had gone off of coumadin before the operation and then went back on coumadin after the operation. After the DaVinci, I stayed off the coumadin ... so far no PE.

Depending on your biopsy results and any other testing you have done, you are probably wise to look into CK and brachy. (By the way Kaiser will send your slides to John Hopkins for a second opinion ... at least they did send mine when there was a question). Dr. Chen (at Kaiser) had recommended I consider brachy, but due to a large prostate (that would have had to be shrunk with HT before brachy) I chose surgery. Kaiser in Denver has a contract with St. Joe's for the brachy. I forget the doctors name who I was refered to at St. Joe's.

Concerning CK I know there are guys on this forum who swear by CK. There is a CK unit in Denver (I've seen their ads on TV) that does prostates; however, I do not know if Kaiser has a contract with them. Guess you could find out more about them by googling them.

FYI I left Kaiser this past January (after several good years with them) and went on with BC/BS. I wanted to see some specialists (primarily cardiologist at the University) outside of Kaiser. This was not a reflection of the care that I got with Kaiser, Dr. Green, or St. Joe's ... all of their care was good.

Hope this helps. I'm heading the RV into Utah tomorrow for some hiking, so if you repond to this post it might be a few days before I get back to you ... hope I miss the snow going over Loveland and Vail passes.

Good luck and best wishes.

Swingshiftworker
Posts: 620
Joined: Mar 2010

I was a lifetime member of Kaiser until July 2010, when I switched to Blue Shield to receive CK at UCSF.

After several meetings w/urologists (all surgeons) at Kaiser, I discovered on my own that there was a Kaiser CK treatment center located in South San Francisco. This information was NEVER mentioned to me by any doctor or mentioned in any literature that I was given at Kaiser concerning the treatment of PCa. Apparently, this is because Kaiser NorCal does not EVER use CK for the treatment of PCa. They only use it for what they consider otherwise untreatable cancers -- particularly cancer of the brain, spine and lungs.

The ONLY treatments presented to me for the treatment of my early stage PCa at Kaiser were surgery (open or robotic) and brachytherapy. Kaiser has a huge investment in it's BT center in Rocklin. It serves all NorCal Kaiser patients and has a lot of experience doing them. There's a comparable BT center in SoCal.

I NEVER considered surgery an option for me -- too many risks & side effects, too long a recovery period required and too many horror stories. BT was a possibility but I chose CK over BT because I didn't want to have the seeds placed in my body for life & did not like the idea of being radioactive for about a year (both of which present problems for boarding airplanes) and was worried about the precision of the placement and amount of the radiation dosage delivery. No such problems w/CK.

Was treated w/CK in Sept 2010 at UCSF with absolutely NO side effects. PSA levels are now decreasing and I'm on the way to recovery. If you want to look into it, contact Dr. Gottschalk (the Director of CyberKnife Radiosugery) at UCSF's Helen Diller Family Comprehensive Cancer Center: (415) 353-7175.

Good luck!!!

JJPhare
Posts: 34
Joined: Apr 2011

Thank you for that incredible information. Your situation parallels mine and I was unaware that Kaiser CK is not for PCa. I have your similar concerns with both surgery and BT but Kaiser pushes them both.
How long had you been diagnosed with PCa before going with CK? I was diagnosed in March 2011 but am not able to switch health carriers until January 2012. My independent urologist says I can do active surveillance but the Kaiser urologists think I need to do something yesterday. That is why I want a second opinion from Kaiser radiology but I believe they will try to push BT.
Also, did you have a second opinion on your slides from Johns Hopkins or others?
Was there any problem getting coverage from BC/BS? Reading their booklet leaves it up in the air as to whether CK is experimental.
I am in Colorado and have 3 places I could go for CK but would be willing to travel if I know I could get it covered.
Your info helped me not spin my wheels.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Kaiser definitely pushes BT for early stage PCa patients. I went to their facility in Roseville (not Rocklin as previously mentioned) and attended their orientation program, which gave a very rosy picture of BT which very high "success" rates.

However, similar to surgery, BT is only as good as the radiologist who plans the placement of the seeds and their relative dosages. There's a lot of "guess work" that goes into BT mapping which is really not discussed in the literature. Actual placement is also critical in terms of treating the cancer w/o causing collateral tissue damage to the rectum, bladder and or other tissues and, even if the seeds are placed perfectly, they can move on their own.

No such problem w/CK which delivers radiation based on a 3D model of your prostate obtained from MRI/CT scans and which also adjusts for body/organ movement during treatment. It doesn't get any better than that -- currently -- for radiation treatment and is the reason why there are so few reported negative side effects for CK.

I was "fortunate" in discovering that I had PCa in Jan 2010 because, after doing about 3 months of research and learning all I could about PCa treatment in that time, I found out about the availability of CK at UCSF and that it was covered by Blue Shield which was (is) available under my group's medical insurance program. No problem switching between different insurance programs offered to the group with a pre-existing condition.

Open enrollment for my program was (is) in April and I was able to make the April 30 deadline and switch to Blue Shield effective July 2010. Before making the switch, I met w/Dr. Gottschalk at UCSF to discuss my eligibility for CK and its likely effectiveness in my case, which I paid for out of pocket -- about $700 -- to make sure that the switch was warranted and decided to make the switch to Blue Shield based on that discussion.

With early stage PCa, I don't think you need to be in any rush to receive treatment. My Kaiser urologist was "honest" when he told me that men w/Gleason 6 have the same mortality rate in 5 years w/ or w/o treatment. So, I'm not sure why your Kaiser doc is pushing for an immediate treatment decision, unless it's somehow related to your DVT or your PSA level which is slightly elevated.

So, I wouldn't rush to judgment on which treatment to go with and your independent urologist is leveling w/you when he says that you can choose "active surveillance" instead of doing something now. So, if you decide that CK is what you want to do, you shouldn't be at any greater risk if you wait until Jan 2012 to switch coverage. Note that I did not receive treatment until 9 months after I was diagnosed w/PCa. However, if your PSA level continues to rise, you probably should be concerned about the velocity and scope of the cancer and immediate treatment of some kind might be advised.

BTW, CK is generally recommended for men w/Gleason 6, Stage T1c or T2a/b and PSA 10 or less. I don't think the PSA level is an absolute rule but if your PSA level continues to rise it may indicate the growth of the cancer beyond the prostate capsule, in which case CK would not be an effective form of treatment. So, I suggest you make an appointment with one of the CK centers in your area to discuss your eligibility before you make a treatment decision and before you make any change in your medical coverage.

As far as Blue Shield is concerned, there is no question that it now covers CK for prostate cancer treatment. I have a copy of their current policy paper on this (written in late 2010) and CK is NO LONGER considered an experimental treatment for CK. Got the policy paper from Dr Gottschalk. And, of course, they just paid for my treatment in Sept 2010, so I don't think there is any question about this for Blue Shield in California.

However, I read somewhere that each Blue Shield region makes an independent decision on coverage and it could be that the Blue Shield in your area still does not recognize CK coverage for PCa but armed w/a copy of CA Blue Shield's policy paper, I think you can make a rock solid case for coverage before the CO Insurance Commission if it came to that.

Good luck and best wishes!

hopeful and opt...
Posts: 1282
Joined: Apr 2009

to be treated with active surveillance a PSA of less than ten is needed, so having a 14.2 is not appropriate, ....do you know what your rate of increase is?

I don't know if Kaiser has advanced MRI equipment that will show lesions in the prostate and surrounding area, so you can better determine the volume of the disease, where it is located, one lobe or two, and area surrounding the prostate..........this will help your doctors determine if you can wait until you change coverages, and/or determine a "best" treatment .

Additionally if you have not it is advisable to confirm your biopsy readings by an independent institution susch as Bostwick or johns hopkins.

In my opinion, if finances are not a problem, I would personally seek the best medical tratment that is available out there, whereever it is, and not wait around.....you only have one life, and one chance at a best treatment

JJPhare
Posts: 34
Joined: Apr 2011

Thanks for your comment. I have spoken to 3 urologists who
don't think I should stand still however I do need the time to decide. The 2/12 positive cores were both in the left side at 10% volume. The pathology report was reviewed by 2 Kaiser medical staff and my request for an independent review by Hopkins was resisted. I am selling possession on Ebay to pay for non-Kaiser treatment and I might just pay the $700 (Johns Hopkins fee) after I talk to the BT people. However, I feel a whole lot better with CK.
Kaiser of Colorado does not have (or utilize) the MRI for prostate.
Their urologist advised that he doesn't believe in it for prostate so it's a "no go". That is when I chanced upon CK. Unfortunately, personal funds are a problem but I have spent as much as I reasonably can with independent urologists. I have had quotes for self pay between $18-27K
My PSA stayed at 6 -8 for 15 years. There was a negative biopsy in 1996. During 2010, PSA increased by 2 each test. When it hit 13 in January, Kaiser finally allowed another biopsy.
Because my health insurance has an open season in December, I cannot switch til January.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

take some time to decide, so you will be comfortable with your decision.....go to local support groups..speak to various experts, including imrt , and braky....read, read......the biopsy is the key, and the numbers are low (in fact, my biopsy numbers are almost the same, and I have been on Active Surveillance for two years now)......the PSA number is an indicator and not the key number, but important none the less.

By the way, your PSA reading could have been increased if you rode a bicycle, did lots of exercise, or had sex before the blood test , or you had an infection at the time of the test ......

Based on the information that you posted.........I beleive that one can only guess on how much time that you have to make a decision without a confirmation of your biopsy from an independent expert pathologist, and additional diagostic test(s)............but, I am only a guy here in CA. who spends most of his time playing a used ukulele ....not a fancy doc making a million plus dollars a year

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