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Surgery thru Kaiser or pay out of pocket?

JDD
Posts: 1
Joined: Feb 2011

I have Kaiser Insurance and have questions regarding my prostate cancer:

I am 61 and my biopsy taken last month showed a Gleason 6 (3+3) malignancy involving the right base, right mid and right apex. In addition, there was focus of atypia in the left base. The foci of malignancy seen by this biopsy were small volume, less than 10% in size.

Biopsy taken three years ago showed a Gleason 5 (3+2) malignancy involving only the right base lateral (2 mm in size). The good news...I have a very slow growing cancer. My PSA taken every three months for the last year fluctuates between a 3.35 and a 5.15.

My dilemma is that my wife and I are selling most everything (home, cars, etc.) in Portland, Oregon and moving to Ecuador in April of this year. We are retiring and have already purchase a home there. This will be our permanent residence and I will probably be giving up my Kaiser insurance sometime within the next six months depending on who performs my surgery?

Which surgeons can you recommend within the Kaiser network, preferable in Oregon or Washington with at least 300 da Vinci prostatectomies? I am willing to travel most anywhere that I can find a Kaiser surgeon which meets these minimum standards.

Which surgeons should I avoid within the network?

I had a one hour consultation this week with Dr. Michael Lipke (Kaiser
- Portland, OR).He has had approximately 200 da Vinci prostatectomy’s.
He is an amazingly nice guy who gave me some great information. The down side is he only does about 40-50 da Vinci prostatectomy's per year.

I also had a one hour consultation this week with Dr. Thomas Ahlering (University of California, Irvine) He is outside of Kaiser and has performed approximately 1000 de Vinci prostatectomies, averaging about 140 per year. My research shows that he is probably in the top 5 de Vinci robotic-assisted prostatectomy surgeons in the world. I was very impressed with him and his background. My out of pocket expense would be about $25K if I jumped ship and went with him.

I need to make a decision within the next week and would appreciate your feedback.

Cheers!

jdd

hopeful and opt...
Posts: 1364
Joined: Apr 2009

what is your age? are you eligible for Medicare?

Are you able to switch to another medical insurance provider?

As I understand Dr. Ahlering is good, however, he only accepts cash, not negotiable.

Why not continue with Active Surveillance, it appears that your cancer is indolent, not likely to spread?

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

JDD,

Welcome to the forum and I am sorry that you're dealing with prostate cancer while trying to plan for a major move out of the country.

As you probably realize, most HMO's such as Kaiser often have fewer treatment options than other plans. Although I chose radiation treatment instead of surgery to address an initial diagnosis very similar to yours, I felt fortunate to have a wider degree of options and doctors to choose from than what a HMO plan might dictate.

While I'm certainly not trying to tell you what to do, I would like to gently remind you that the choices you make here are going to affect every day for the rest of your life. If you go with a surgeon with limited experience because that is the most economical or convenient, I sure hope that you do not experience downstream complications that would hamper you ability to enjoy your new life in Ecuador.

While your doctors may have told you that your diagnosis is "low risk" and that most men die with prostate cancer rather than of it, you are still faced with a life or death decision here. It's going to affect your quality of life, your quantity of life, and the peace of mind of you and your family.

If you go ahead with surgery and you have the means, please consider that your life and post surgical quality of life is worth every penny of what you might pay out of pocket. The studies are all very clear on this point. Success for the patient is directly proportional to the experience of the surgeon.

As hopeful and optimistic pointed out, you very well may have an indolent form of prostate cancer than needs not primary treatment at all at this point and can be safely addressed through active surviellance. There are other treatments like SBRT, proton therapy, IMRT, IRGC, and brachytherapy which may also be appropriate. In your rush to get out of the country, I hope you don't short change the research process you must go through to make a fully informed decision on how to deal with your prostate cancer.

I'm sure you have an idea of the health care options in Quito or wherever it is in Ecuador you're relocating but you should also consider what will happen downstream should you experience a recurrence or other complication years from now.

You have a number of very tough decisons to make. Wishing you the best of luck as you sort through all this.

K

Swingshiftworker
Posts: 658
Joined: Mar 2010

I was with Kaiser for all of my life until July 2010 when I switched to get CyberKnife treatment under Blue Shield at UCSF.

I interviewed 2 surgeons -- one in SF and one in Oakland -- who both did DaVinci for PCa but neither of them had over 300 DaVinci surgeries. One only had 50 and the other about 150 DaVinci surgies but not all of them were for PCa. DaVinci is new to Kaiser so I doubt ANY Kaiser physician will have sufficient experience to meet your criteria.

So, if money is NOT an issue, I'd shop around for a surgeon w/sufficient experience to do the job. However, if you are leaving the country and have a low grade PCa as you describe, you really should consider radiation -- CyberKnife, Brachytherapy or some other technique -- instead because the recovery time for surgery will be AT LEAST a year, if not longer and the potential for negative side effects are substantially greater than for radiation, even though the prospects for success are about equal for both methods.

Don't know about the quality of medical care in Ecuador but followup care should be a major consideration if you are going to go for surgery instead of radiation. So, that's something you should look into as well.

Good luck!

bdhilton
Posts: 759
Joined: Jan 2010

Have you thought about appealing and getting Kaiser to pay for your surgery/treatment out of plan? I know others who were successful at this (you only get one chance to do this the best way possible for you...) There is no way I would be even discussing the remoter possibility of any surgeon with 300 surgeries under their belt touching me....From my perspective you need someone that this is all they do and a couple of thousand surgeries under their belt.. I left Kaiser (I had 2 medical plans at the time) to get diagnosed “properly” and have William Catalona (way over 5000 procedures)from Northwestern do my surgery out of Chicago (I’m from Atlanta)…. Selected the surgeon or treatment you believe in and press Kaiser ….. Best of luck

Scotty1
Posts: 1
Joined: Mar 2012

I also am looking at options within the Kaiser program in the Portland area. I have heard good things about both Lipke and Mershon, tho you mention Lipke has done 200 and I learned that Mershon has done something over 100. (I'm guessing that's as good as it gets within the Kaiser system? Both are recommended by their peers as the ones they would use.
I'd appreciate any additional information you have found since your last post. You can always contact me at loghomes@europa.com
All the best...Regards, Scotty1

MikeRC
Posts: 1
Joined: Apr 2012

Hi, I was diagnosed with PC about 3 weeks ago, Stage put at T1c, based on Gleason 3-3, 3-4 and PSA of 6.3 1/18/12; 5.3 12/6/11, 4.1 11/22/10; and Biopsy with 12 samples, 4 positive, 2 each side. I have reviewed tons of studies and side effect data; and have fairly certainly chosen Surgery. I have just sent biopsy slides and health records to USCF pathology dept in San Francisco; and plan on consulting with Dr. Peter Carroll there. I am insured by Kaiser Sacramento/Roseville. Carroll recently coauthored a paper finding surgery giving overall better results than other treatments-here are his paper and one other.

treatments.http://jco.ascopubs.org/content/28/9/1508.abstract

http://onlinelibrary.wiley.com/doi/10.1002/cncr.25456/pdf

My prospective Surgeon is Dr. Scott Troxel, urologist and surgeon in Roseville; whose done 75 or so open prostatectomies, 225 or so laparoscopic or robotic surgeries, with about 150 robotic. Dr. is very focused on, only does, robotic prostate surgury now; and was head at Univ of Missouri for robotic surgery group. He has about 17 years experience. I am trying to explore other options but am finding it not easy to get facts on other surgeons.
Any thoughts?

rch
Posts: 79
Joined: Nov 2011

Mike
I'm also with KP Bay Area. You could have sent the slides to Johns Hopkins which is a lot less expensive and friendlier consult service than UCSF in my opinion. I also have an appointment with a Consultant at UCSF for a second opinion on my 1 or 2 (?) out of 13 cores 3+3 with less than 2% focus ( 1Tc, PSA 3.9). This is my second biopsy. The first one one 4 mo. ago was suspicious only , not diagnostic on 1/12 cores . I'm presently on AS. Kaiser's RALP program initially started at Walnut Creek in 2007 and the best one there is Dr Rosenbaum who has done about 300. He only does 2-3 a month. The entire RALP program didn't get on to full swing in the US until the mid-2000s with fellowsip programs starting at major University centers in 2005. So, a well trained RALP surgeon is typically in his late 30s or early 40s. All the rest were trained on the job or through 1 wk mini-fellowships. Also, those who claim to have done thousands usually tack on the numbers performed by their Fellows.Good surgical outcome is strongly dependent on the Surgeon's skills, not the procedure used. Intuitive Surgical ( ISRG) is 52 wk high and was one of the top 3 best performing stocks on the Wall street in 2011!! The basic steps between the two are the same. If I do decide on surgery, I would rather do Open with a well experienced surgeon than RALP with a less experienced one. Open surgeon has a better tactile sensation. Recovery typically is a it longer 4- 5 wks for Open vs. 2-3 for RALP. Also a recent publication in the J. Oncolgy showed RALP had a slightly higher rate of incontinenc comapared to Open. You might want to check into some of the most experienced Open Surgeons at Kaiser Oakland. Your disease demographics is low grade, so don't need to rush . Explore all the options including Brachy, best performed wih excellent track record at your own Kaiser facility in Roseville. Good luck.

Swingshiftworker
Posts: 658
Joined: Mar 2010

If you've already decided on surgery, what other thoughts are you looking for?

FWIW, since you were only diagnosed 3 weeks ago and have an early stage PCa (Gleason 6/7 w/PSA less than 10) you really don't need to do anything immediately and have the time to decide what to investigate other treatment options. Indeed Active Surveillance (which is essentially the decision to do nothing except monitor your PSA) is an entirely appropriate "treatment" choice at this time.

Surgery, on the other hand, is an irreparable decision that can have severe negative life altering effects. If you consulted at Kaiser Roseville, I assume you already obtained information about their Brachytherapy program. It is considered a very successful program w/o the major risks of surgery. There other alternatives as well, including CyberKnife and IMRT, which would have much less serious risks than surgery with the same potential for success.

If you are still open to non-surgical alternatives, I suggest you read my comment in the following threads:

http://csn.cancer.org/node/236958
http://csn.cancer.org/node/237225

As well as the following commentary by a physician regarding the risks of PCa surgery:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

Good luck!

hopeful and opt...
Posts: 1364
Joined: Apr 2009

Swing, As one who is on Active Surveillance with Delayed Treatment, AS is not only a decision to monitor the PSA, but to have regular biopsies, DRE's, view other indicators such as PCA3 and also molecular tests. Additionally one may decide to have an alpha 5 inhibitor or another drug to retart the growth of the cancer. Active Surveillance is not essentially a decision to "do nothing".

Mike, Active surveillance is not an appropriate treatment option for one with a gleason 7, an intermediate aggressive cancer unless the man's future life span is short based on age or other health issues. Of course you have some time, but probably not a lot(not knowing what the percent cancer involvement of the cores that are positive) to make a decision for active treatment since prostate cancer is slow growing.

Swingshiftworker
Posts: 658
Joined: Mar 2010

Ok, Hopeful:

I stand corrected. I oversimplified what AS is for the sake of discussion but didn't realize that it is not considered acceptable for Gleason 7 (even if for a short period of time) in order to assess alternatives.

Just suggested AS as a short term alternative in order to give him time to consider other non-surgical procedures but sounds like he's already made the choice to go w/surgery anyway.

Ciao!

rch
Posts: 79
Joined: Nov 2011

Sorry. I overlooked the 3-4 part!!. I mistook it for one of the PSA #s !! Please share with us how many cores were 3+3 or 3+4. What % core were the tumor involved ?. Usually when Kaiser reports GS 7 , the Pathologist comments on any perineural invasion. Was that mentioned any where in the report?
Also, you might want to check with the Pathologist or the Urologist on % distribution between 3 and 4, whether it's mostly 3 with only a very few 4 cells. If you do have GS 7 , then I am afraid you might not be a good candidate for Brachy. Please discuss that with the Roseville Oncologists as well as UCSF Consultants. PSA bounces s/p RT with GS 7 are always a diagnostic challenge!!

hopeful and opt...
Posts: 1364
Joined: Apr 2009

Since it takes some time for one to make a decision on treatment after diagnosis, it's my opinion that if the time period is less than say 3 or 4 months or so, it is not considered AS. I think that if one delays treatment for the future by monitoring the beast, it can be considered AS.

My layman's opinion is that, if a person is young, has a long life expectancy, and has a Gleason 7, even at my age of 69, one need to seek active treatment since it is too dangerous to wait; this is an aggressive disease and it is likely that the disease will progress(how quickly we really don't know). A decision has to be made in a reasonable time. Time is of the essence. AS is not an appropriate decision in this case. .

On the other hand there are some doctors who recommend patients with long life expectancy and a Gleason 7 to AS.

Unfortunately, I notice from reading this board and speaking to PC survivors that each doc is doing his own thing, and that there is not as great a consistency in treatment as there should be. I believe that a patient with PCa can obtain almost any treatment with virtually any condition by having the "right" doc

VascodaGama's picture
VascodaGama
Posts: 1598
Joined: Nov 2010

Hi 69 buddy,…..I couldn’t be more in agreement with your comments. In this “Trade” there are no definite standards and one must be the judge of a decision. Success is related more to a proper diagnosis, own education on the problem and the choice on a physician, independently of the treatment. Private choices one trusts and feels comfort in are the best to take.
We “veteran” survivors know about the facts and sometimes commit the error in posting lay opinions that can influence a guy’s choice. That’s why every PCa patient should be well informed but not reprimanded, particularly the newbie’s that are the most “fragile” at the hands of the “sharks”.

In any case, these sort of forums are exceptionally important and a source of information as a guidance to all of us. Older and Newer fellas.

VG

mrspjd
Posts: 693
Joined: Apr 2010

Mike,

Welcome here. Our experience with Kaiser and their pathology lab in So Cal was that they under diagnosed my husband’s PCa biopsy as a G 6, T2 and recommended either RP or LDR-Brachy (seeds) with RT as the only tx choices--the tx options Kaiser had available. If PJD hadn’t sent his specimen slides to the J-H path lab (specializing in reading PCa samples) for a second opinion analysis, we never would have known he was at a substantially increased cancer risk because the J-H path lab found a high # & % of involved cores at G 3+4 resulting in a T3 intermediate-high risk cancer staging. This add'l info lead us to request further testing and to seek multiple opinions outside of Kaiser which confirmed the T3 staging and higher risk level. After tons of research, we eventually left Kaiser for treatment (that Kaiser did not offer) elsewhere.

What we learned: Before considering/evaluating ANY PCa tx, take steps to be sure the PCa is staged as accurately as possible. This could be a factor and make a difference in your tx choice and its outcome.

M (mrs pjd)

P.S. I hope you can get in to see Dr. Carroll for a 2nd opinion consult. He has an excellent world class reputation. Be sure to take along the results of your 2nd opinion biopsy report, too, from an expert PCa path lab such as Johns Hopkins or Bostwick. Good luck.

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