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Please, I need help.

Mindandtrade
Posts: 3
Joined: Jun 2012

Hi guys! I am very happy for found this forum. I have been learning a lot from you in the last 8 days. I have been reading you advices, been sad with some histories and happy with others, laughing about some funny comments and very worry about some information that is totally new to me. I have hope too because I see that the treatments and research about Prostate Cancer are everyday more effectives.
This is my history: I have 49 years old and my father had Prostatic cancer treated at his 73 years old. He died 3 years ago at age 82 from a heart attack. On May 2008 my PSA level was for first time 3.5, on Nov 2010 was 5.5 and I had a Biopsy at the Kaiser hospital in Manteca that was negative. After 2010 my PSA continued around the same level until two weeks ago that my PSA reading was 8.7. My doctor want to do another blind biopsy but I learned with you guys about the MIRS I think is the way I should go before stab my gland with another 12 sample needles. I asked to my Urologist at Kaiser about the MRIS and he told me that is not an effective way to detect prostatic cancer and I should do the biopsy by the traditional way so looks to me they do not have this technology in their hospitals so I am very anxious and in some way desperate because I do not see a way to have access to the MRIS. I remember to read in the forum that the cost of this test is around $70,000 so honestly I don’t know how to solve this situation. I know that I have to take a decision as soon I can but I need some advice to maybe find a way to have the test at UCSF or other institution. Unfortunately my income is very tight at this moment and with a family of 3 dependents I do not have enough money to pay a big ticket.
I maybe finish doing the blind biopsy if I do not find a way to have the MRIS but is terrible to know that one technology is so inaccurate and maybe return another negative result when the other one is so precise and allow me to take a better decision for treatment and the tranquility that my family need.
-Please, Are there some ways to have a MRIS for regular people like me?
-Having Kaiser eliminate my possibilities to have a MRIS?

I'll appreciate from the bottom of my heart any advice to find the best choice for my case. Thank you guys and God bless you!

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

Mind,

Welcome to the forum as an "associate" member since you haven't officially got a club card. I appreciate the anxiety you feel and your rise in PSA might be an issue to worry about but I think you need to take a breath (or two) and look at the big picture.

Many if not most of the causes for an elevated PSA in the range you're seeing is a result of BPH. Your doctor should have calculated your prostate volume when he did the biopsy. Because of its location in your pelvic area, a large prostate presses against the skeletal bones and forces more PSA into the blood stream causing your numbers to go up. Other things such as sex before a blood test, a DRE before they draw blood, certain types of exercise that press against the prostate (like bike riding), and even some OTC medications can cause elevated PSA. PSA has also been shown to change randomly at different times of the day. All of these contribute to PSA by itself being a notoriously sketchy method for detecting prostate cancer.

Recent advances in imagery, including MRI, is impressive but I wouldn't use that a method for detecting prostate cancer. In its early stages it will be difficult for even the most discriminating imaging system to identify prostate cancer. But the big reason not do do use this method to detect prostate cancer is that it can't give you a Gleason Score which is what you need to determine the type of cancer you have, it's potential severity and aggressiveness, and help you decide what (if any) treatment method you should choose.

As your doctor probably explained to you, a negative biopsy does not mean you don't have cancer. All it really says is that the 1% of prostate volume that was sampled didn't have any cancer. It could be someplace else in the prostate. Urologists know pretty much where adenocarcinoma tends to be found in the prostate and that's where they go looking but it's a hit or miss activity.

Now I also think you may be confused about the cost of an MRI. They're not cheap but they are nowhere near $70K. You can make a few phone calls to verify this if you like but again, what's the point? The only sure way to determine the presence of prostate cancer is through a biopsy.

Before you bend over for another needle poke I suggest you talk to your doctor about other possible causes of elevated PSA such as BPH, a UTI, and the other things mentioned above. If none of those suggest a reasonable explanation then you should consider another biopsy and your doctor can perform what is known as a saturation biopsy which samples 24 or more sites thus increasing the likelihood of detecting something if its there.

Your family history notwithstanding, prostate cancer in men younger than 50 is very rare. With your family history it is smart to be testing, but even with your father's situation it doesn't happen often. Interestingly, men who have mothers who had breast cancer also stand a higher risk of prostate cancer.

Do you have any physical symptoms that could be associated with BPH such as getting up in the night to urinate, or have a lessening of urine stream intensity?

You can also look at your PSA velocity, your PSA doubling time, and PSA density. All of these easy calculations can be done by you or your doctor and can give you additional indications as to whether or not prostate cancer is likely. Finally, you can have them do a free PSA percent test to look at circulating PSA in your bloodstream as a potential cancer indicator. I think all of these tests and calculations, combined with your rise in PSA scores, will give you a good appreciation of whether or not you need another biopsy at this time.

Best of luck to you and I sincerely hope you never join our club.

Best,

K

Mindandtrade
Posts: 3
Joined: Jun 2012

Thank you very much kongo for your words. I understand that I have to take a little easy but the responsibility over my shoulders is huge. I have 3 kids, one in college and 2 in High School. I am the only one person working in my family and I can’t imagine what kind of life they could have if I get seriously ill so all that make me think very "reactive" sometimes.
Another point that doesn’t help me a lot is that my Urologist at Kaiser is very tight to the “Kaiser Book”. I remember that back in 2011 I read about the Free PSA test and I ask him his opinion and he came back with the same type of answer: “There are multiples test in the market for PSA but the only one you need is the one we have in Kaiser” so bye bye Free PSA test! I am having that problem and I don’t know how to evercome this situation inside the Kaiser Health Insurance System. I remember to read a very good post about treatment at Kaiser in northern California from a very informed participant with nickname as Swingshiftworker and I had the impression he had a lot of good support resources from Kaiser in San Francisco area so maybe here in the Central Valley it’s different.
What about if I want to pay for a Free PSA test? Somebody have an idea Where I can get it done?
Thank you guys!

jbw901
Posts: 23
Joined: Feb 2012

I thought I'd give you my experience using Free PSA as a secondary marker. In Dec. 2009, I began my PCa journey when my routine physical blood work showed a PSA of 4.2. At that time I had a 12 core biopsy that was negative. The plan was to monitor my PSA and target a biopsy in 24 months if no significant increase in PSA was observerd. For the next 18 months, my PSA was monitored showing a steady increase to 5.4 (not a significant increase). Thoughout that timeframe, the Urologist was also monitoring my free PSA, and it varied from 6% - 14%. As this is a secondary marker for PCa, I opted to accelerate my second biopsy by 6 months, and on that second biopsy cancer was found in a single core.

I opted for robotic surgery and am now almost 5 months into my recovery.

For me, the Free PSA marker was the catalyst for a second biopsy which accelerated the timeline of my decision, treatment, and recovery process by 6 months.

Mindandtrade
Posts: 3
Joined: Jun 2012

Thank you jbw901 for share your experience. I think that I am going to have a Free PSA test for the end of next week and go from there with my Urologist. I am doing an antibiotic treatment right now and after that I will go with the test. Depending on the result of the test I’ll go with the Biopsy.
The sad part of this is that in order to have more Doctors choices I have to wait until December to change my insurance provider from Kaiser to Health Net but I’ll try to have more patience! lol
Thank you guys!

Swingshiftworker
Posts: 634
Joined: Mar 2010

Mind&Trade:

As you've already learned Kaiser is a "take it or leave it" type medical organization. Doesn't matter if it's in SF or Manteca. They offer what they think is effective and "cost effective" based on their internal policies. If you want more than what Kaiser is offering you, you have to "leave it." That's what I did.

I don't think that's necessary in your case YET! Although there is some risk of infection and other problems from biopsies, I see no reason to get another one to see if a cancer has developed, PROVIDED that it is clear that you need another one.

The elevated PSA test result you received is not extremely high and it's not clear if a free PSA test would yield more or better info than you already have BUT if you can convince your urologist to approve it, GREAT!

The first thing you should do is do some research online on BPH and, as Kong suggested, discuss the possibility of a correlation between the elevated PSA level and BPH or other causes w/your urologist and ASK for some form of medication to address the BPH (or other problems) BEFORE poking any more holes in your prostate. If s/he is non-responsive (as s/he as already been), you have a choice to make -- "take it or leave it" -- ie., either do the biopsy or put it off.

Unfortunately, unless you have alternate medical coverage available and can wait until the next open enrollment period to switch (as I did) or are able to self-insure (which you say you are NOT in the position to do), you may NOT have a choice in the matter and will just have to "take" what Kaiser offers you.

Kaiser is not a "bad" medical HMO. It just offers you limited choices for your medical care and, if the choices they offer you are truly unacceptable (as they were for me) you'll have to figure out a way to delay further diagnosis and/or treatment until you can get the type and quality of care you want.

If you can switch to UCSF via Blue Shield or another medical carrier, I highly recommend it. It has it's own bureaucratic issues but the diversity of treatment options and quality of care is far superior to Kaiser.

Good luck!!!

PS: if you are taking Cipro or some other antibiotic, it is NOT necessary for a free-PSA test -- it's taken before a biopsy to prevent infection. Assume you've done this before, so don't be misled into believing your getting a free-PSA test by taking it.

PPS: If you're going to make the change to HealthNet, make sure there are providers in that group that will provide you with the type of care you want. It would actually be best to do the biopsy BEFORE you do this, so that you'll know whether you have cancer yet or not. If you do, review their provider list, choose 2-3 different groups and research their urology dept/services on the Net, them make an appointment with 1 or 2 to discuss your problem w/a urologist on a self-pay basis. It'll cost you some money, but better that than make the change and find out that you can't get any more from them than you can from Kaiser.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

I don't know if Kaiser offers a PCA3 diagnostic test

PCA3 test
This test is a new investigational ( only an indicator) urine gene test that is available. The test is a molecular biologic assay. This test has a specificity of 75% and a sensitivity of 57%. (What that means is that among 100 bad tumors, for example, they only can identify 75 of them. And among 100 good tumors, they identify them as bad in 57). The test is done by a doctor who does a DRE and vigorously massages(the fun part...my doc is very experienced, has muscles on his finger, and can make a grown man cry) the prostate; the patient gives urine and the results are sent to Bostwick Laboratories(the only laboratory that does this) for analysis. It is a pretty expensive test, at I think about $500.

So the way the results work, 35 is the magic number, so the less one score is below 35 the better. Mine was 8.3 "Prostatic cells are present but do not over express the PCA3 gene", "value of 35 or greater suggests a high likelihood of prostate cancer"

It is also stated that only a prostate biopsy can diagnose prostate cancer. The test's preformance has been established by Bostwick Laboratories

Basiscally this test result will help you make a decision to or not to have another biopsy.

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