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Old 01-15-2011, 02:03 PM   #1
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New to the Board

Hi all. I am new to the board. My husband is due for a prostate biopsy next Friday so I have been in research mode, gathering as much info as I can on the subject of prostate cancer. This board is a godsend. Even though at this point I have information overload, I have learned a great deal.

He is 67 years old & his PSA was 3.9 in 2003 and has risen to 5.2 with a free PSA of 15% to 21% in 2010 (several tests this year). That is a rise of 1.3 in seven years. His DRE is normal and he tried a couple of 10 day series of Cipro to bring the PSA down. The antibiotic did not affect the PSA level so next is the biopsy.

At this point I believe we are probably dealing with PCa so I am trying to be prepared. I can find tons of information on PCa & the treatments available, but what I am having difficulty finding is information on is which insurance companies will pay for which treatments. I am afraid that once he is diagnosed it will be impossible to be accepted by any insurance that will pay for the treatment we choose.

He has a Medicare advantage plan and I know that I am getting WAY ahead of myself but my question for the board is does anyone know of a good resource for insurance discussions and info?

 
Old 01-15-2011, 09:53 PM   #2
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Re: New to the Board

I don't know where in California you are, but if you call the Urology Depts of UCLA and UCSF, they can tell you which insurance covers what treatments.

 
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Old 01-16-2011, 05:00 AM   #3
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Re: New to the Board

Hi Pam,

Welcome to the Board! I'm following Allen's reply, and I'll insert just a few additional quick thoughts, in an excerpt from your initial post.


Quote:
...My husband is due for a prostate biopsy next Friday....

He is 67 years old & his PSA was 3.9 in 2003 and has risen to 5.2 with a free PSA of 15% to 21% in 2010 (several tests this year). That is a rise of 1.3 in seven years. His DRE is normal and he tried a couple of 10 day series of Cipro to bring the PSA down. The antibiotic did not affect the PSA level so next is the biopsy.

At this point I believe we are probably dealing with PCa so
Maybe so, maybe not. I hope you realize that we can not admit you and your husband as full members of the PCa club, with all its rights and privileges of membership, until he has a positive biopsy. It is often very difficult to treat a prostate infection; you have to hit it with the right antibiotic, and that often takes many trials. Cipro works for many men, but fails for many others. A biopsy now is reasonable, but there is a good chance that it will be negative.

Those free PSA results are not definitive evidence of infection in the context of the rise in PSA, but to me they look more on the favorable side of the ledger than the unfavorable side. Both results are on the high side for prostate cancer, particularly that 21%. Also, the free PSA test itself can be influenced by infection; if so, it gives a result that is lower, falsely suggesting that there is a greater likelihood of cancer. The results you mentioned are still well above 10%, which is a significant level that indicates likelihood of cancer.


Quote:
I am trying to be prepared. I can find tons of information on PCa & the treatments available, but what I am having difficulty finding is information on is which insurance companies will pay for which treatments. I am afraid that once he is diagnosed it will be impossible to be accepted by any insurance that will pay for the treatment we choose.

He has a Medicare advantage plan
Since he has Medicare and Medicare advantage, he should be coverable, though some doctors do not accept Medicare.

Quote:
and I know that I am getting WAY ahead of myself but my question for the board is does anyone know of a good resource for insurance discussions and info?
You might call the Prostate Cancer Research Institute (PCRI), a non-profit organization that is one of the leading institutions dedicated to communicating with patients and has been led over the years by expert physicians who specialize in treating prostate cancer. It is located on Century Blvd. in LA, near LAX.

Good luck and take care,

Jim

Last edited by Administrator; 04-28-2014 at 08:50 PM.

 
Old 01-16-2011, 12:05 PM   #4
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Thanks all. I do appreciate you taking the time to reply. As you veterans know this time, waiting for a diagnosis, is very stressful. So many things go through my head and unfortunately I am one of those who think three steps ahead. I should have been a Boy Scout as my motto is ďBe PreparedĒ.

My husband is 67 and in great shape, never had any real illness in his life. In 2003 when his first PSA test came back 3.9, both he and his Dr. blew it off as normal. He has since been retired for three years. He has NO prostate symptoms. Everything works just great in that area. Last year starting in April, about the time his first PSA since 2003 was taken and came back at 5.6 he had a resistant fungal ear infection and was treated over the next few months with several courses of CIPRO & then one course of Bactrim DS for his prostate. By November his PSA was down slightly to 5.2 & the free PSA up slightly to 21%, but I suspect that was because two different types of tests were used as that seems to be a natural variance between tests.

He is on a Medicare advantage plan and is definitely covered for some kind of treatment. My concern is that it will only offer surgery or brachytherapy, neither of which is appealing to me. My first choice would be Proton Therapy at Loma Linda. Since Iíve never dealt with insurance companies other than a couple of doctor visits over the last 40 years, I am afraid to make a mistake along the way that will make getting the preferred treatment impossible. A pre-existing condition such as PCa will surely make him ineligible for better coverage. The timing is lousy too as we missed the window of opportunity (Nov-Dec) to change insurance or upgrade to a better policy. We probably wonít get the results of the biopsy back in time to change to Original Medicare (before Feb 14) which I believe would pay 80%. That means a wait of a year or pay for the entire treatment ourselves.

Sorry about all the insurance talk, itís just that seems to be difficult to get any concrete answers as I am getting ahead of myself and he has not been diagnosed yet.

Jim, thank you for the tip on the Cancer Research Institute. I will definitely look into it. I have been reading this board for the last week or so and all of your information is more appreciated than you know. Sharing what you have learned has brought me up to speed on Prostate Cancer and I am very grateful. Even though I/we are not full members of the PCa club yet, Iíll be around for the foreseeable future as even if the biopsy comes back negative, we all know that doesnít mean cancer free.

Thanks again,
Cindy

 
Old 01-16-2011, 12:12 PM   #5
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Re: New to the Board

Call Loma Linda -- they deal with this all the time. Also, don't be afraid to appeal Insurance company decisions-- they reverse themselves frequently -- doctors can usually write up an appeal for you.

 
Old 01-16-2011, 12:46 PM   #6
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Thanks Tall Allen. Those are my thoughts also. I have already called Loma Linda and they are sending a packet of info to me. They didnít give me much insurance info but I believe that is because I am asking a very vague question and they need specifics to give me a concrete answer. My penchant for getting ahead of myself isnít helping me get answers.

I have also read Invasion of the Prostate Snatchers & Robert Marckiniís book along with a ton of other studies. I am on overload but I know this too shall pass.

 
Old 01-17-2011, 03:28 PM   #7
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Re: New to the Board

Hi Cindy,

I'm responding to an excerpt of your post #4 from yesterday. I'm with Allen on the insurance angle, if proton turns out to be the approach that seems best. I'll insert some comments in green.


[QUOTE=PCaStudent;4662583]...

Quote:
My husband is 67 and in great shape,
I identify with that, though I'm not in quite the shape I want to be.

Quote:
... Everything works just great in that area. Last year starting in April, about the time his first PSA since 2003 was taken and came back at 5.6 he had a resistant fungal ear infection and was treated over the next few months with several courses of CIPRO & then one course of Bactrim DS for his prostate. By November his PSA was down slightly to 5.2 & the free PSA up slightly to 21%, but I suspect that was because two different types of tests were used as that seems to be a natural variance between tests.
That PSA decline after the antibiotics indicate that infection is probably playing some role in the PSA elevation. Test variance could account for some, possibly all, of the difference. My hunch is that the infection is driving a substantial portion of the PSA elevation.

Quote:
He is on a Medicare advantage plan and is definitely covered for some kind of treatment. My concern is that it will only offer surgery or brachytherapy, neither of which is appealing to me. My first choice would be Proton Therapy at Loma Linda.
I'm sure your husband appreciates your role; so many of our wives are very important to us guys in deciding how to cope with prostate cancer. However, it is also very important to keep in mind that your husband needs to be thoroughly on board with this decision. He needs to be fully signed up and committed.

Loma Linda has some good supporting research to back its claims. However, it also has an outstanding PR department and cadre of booster survivors. In contrast, turning away from its early days, it has NOT published the research that would establish that its approach works very well, let alone is superior to other approaches to prostate cancer. Personally, I find that most disappointing and regretable. If they had published their outcomes beyond five years from treatment, they could have proven that their success lived up to the hype.

Moreover, proton beam outcomes do not stand out in the summary of outcomes from different approaches published informally (so far, hoping for formal publication) to prostate cancer by the expert Prostate Cancer Results Study Group (PCRSG). This is why the results of the Group can be so important to us in navigating the maze of options and circumstances. Here's what I'm looking at in my version of the PCRSG graphs from a little over a year ago for low-risk patients, which use the percent of patients who are progression free as the success marker.

For proton beam, there are only three published studies that met the PCRSG's quality and significance criteria, which were reasonable. Those three showed, for low risk men, success rates of (reading from the graph) about 78% at around four years of follow-up, 80% at around five years of follow-up, and around 67% at around seven years of follow-up. In sharp contrast to the 3 proton studies, there were 23 studies for just brachytherapy treatment. Only 2 of those studies showed success rates as low as the proton results, one virtually the same at around 78% at approximately the four and a half year mark and one at around 75% at the seven year mark. All the others showed substantially better success, with nine results ranging in the upper 80s, and 12 in the 90s. Eight of those 12 were in the upper 90s!

Moreover, in sharp contrast to the relatively short follow-up of the proton results, 11 of the brachytherapy results had notched an average follow-up of nine to twelve years, and reflected success of 85% or greater, with 6 in the 90s.

Track record should at least be considered. Proton beam definitely wins the hype contest, but brachytherapy is looking far superior when it comes to published results. None of us would feel good if we discovered we were seduced by the hype and missed out on a superior opportunity, and you and your husband do not want to be in that group.

To me, proton beam is a legitimate option for treating prostate cancer. I would be delighted to recognize proton beam as a competitor for the top honors if they could come up with the goods. So far, they simply haven't. Just be sure that you and your husband go into this with your eyes wide open. Proton beam has a lot of enthusiastic supporters, and it may work well for your husband as well. It appears that it has cured many cases. However, I see no basis for regarding well-done brachytherapy as an inferior approach.


Quote:
...That means a wait of a year or pay for the entire treatment ourselves.
Another point is that proton beam costs a lot more than brachytherapy, and that involves much higher copays. Most of us would not mind paying more for substantially superior results, but what a sinking feeling it would be to find we have paid a lot more for an inferior shot at a cure! That makes it especially important that your husband is fully on board with the choice of therapy.

Quote:
Sorry about all the insurance talk, itís just that seems to be difficult to get any concrete answers as I am getting ahead of myself and he has not been diagnosed yet.
Here's hoping that all this discussion of choices will turn out to be just an academic exercise for you both!

Quote:
Jim, thank you for the tip on the Cancer Research Institute. I will definitely look into it. I have been reading this board for the last week or so and all of your information is more appreciated than you know. Sharing what you have learned has brought me up to speed on Prostate Cancer and I am very grateful. Even though I/we are not full members of the PCa club yet, Iíll be around for the foreseeable future as even if the biopsy comes back negative, we all know that doesnít mean cancer free.

Thanks again,
Cindy
You're very welcome. As you can see, I have some strong views. I try not to venture beyond what I can support with solid research, but it's hard to fully achieve that. I'm glad you are able to see a variety of views here.

Take care,

Jim

 
Old 01-17-2011, 11:42 PM   #8
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Jim,
I appreciate any and all views that you are willing to share. I do realize that there is a BIG public relations push for Proton Therapy & I have MUCH more research to do on that. The lack of data/studies concerns me also. Brachytherapy would probably be a second choice, but as you said only if it is expertly well-done.

I appreciate the numbers that you have provided. I have read some studies on some treatments but havenít really had time to do in depth research yet. Iíve been busy learning the basicsÖÖÖ.and what a lot I have learned!

Iím still hoping that infection is the cause of the elevated PSA, but I am a realist. His complete and total lack of symptoms makes infection less likely than PCa. I know several men with prostitis or enlarged prostate and they all have problems with urination etc.

Hubby will be onboard and make up his own mind depending on the biopsy outcome. Right now he is trying to think of any way possible, to talk me out of insisting that he have the biopsy on Friday. If I went through labor and delivery to give him a daughter, he has to have the biopsy to give me peace of mind, ha! Besides, I am a strong advocate of doing what scares the bejeezus out of you. Itíll be good for him.

I am the researcher in the family, he is the one with the great mind who takes the info that I supply and digests it. After the biopsy, weíll go there.

Thank you again. Youíve been there for an awful lot of people. Do you ever wonder if having PCa was a divine plan? What would we all do without you?
Cindy

 
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