I have been reading on and off on this forum about the agony of making a decision on the best way for an individual to proceed with elevated PSA values. I can feel for you as I thought my GP and urologist would say: "Take this pill for ten days and it will be gone" - or at least show better values, but that was not the case.
Some background: My dad just celebrated his 88 birthday as I helped him move into a retirement home. Aside from a bad knee/eyes/hearing, he is doing extremely well considering his diet in the past.
My mom died in 2008 from heart failure after a long bout with dementia and blood circulation problems. Eventually her heart gave out. Her diet also was not the best, but she made it to 85 years of age.
THUS - I thought I'd easily make the '100 Year Plan' with my wife's very healthy med-style and Asian cooking living the outdoor life-style in Colorado. Plus no cancer in the family, just some family members with heart attacks - all smokers. And I never smoked.
The present: I am now 61 years old living in Colorado and look and feel a lot younger - closer to early 50s. However, reality has caught up with me.
- In Oct. '08, my PSA was 2.3
- In Jan '11, my PSA increased to 6.1
- In May '11, my PSA dropped to 5.3
- In Sept '11, my PSA was 5.6 and also checked my PCA3 = 36 (cut-off is 35).
I discussed these values with my doctor here in Colorado. He recommended active surveillance of my PSA values for now every four months as any alternative (biopsy/drugs/etc.) could have negative side effects or something could go wrong. If the PSA values rise above a threshold, then we can be more proactive. Since my PSA values hover around 5 and 6, he believes I have a slow growing tumor that he still cannot feel with DRE. But we have confirmation with the PCA3 results, there is definitely something wrong
However, I think it might be a good idea to think about more proactive approaches like hormone therapy to lower my PSA numbers to reduce the likelihood of the PSA values increasing in the future. My doctor felt that there are significant side effects to hormone therapy and that active surveillance is a better approach for the time being.
So instead of waiting for another months, I have been doing a lot of reading, but there is no definite conclusion that can be derived.
So, do you think I should wait another three months - or get a second opinion? And from a urologist or oncologist or ???
If by "hormone therapy" you mean drugs that block the production and use of testosterone, like Lupron of bicalutamide, I think that is overkill and the potential risks far outweigh the potential benefits at this point.
If you mean a drug that blocks DHT production like finasteride or dutasteride: The argument against it, is that it will reset your PSA to a possibly lower level, so that until you have some further tracking of it, PSA alone won't tell you where you are. The argument for it, is that it improves the specificity of the PSA test, so if it does go up, you are assured it's not because of BPH. Other drugs that improve the specificity of PSA testing include alpha1 blockers like Hytrin or Flomax, and a course of antibiotics to eliminate bacterial prostatitis as a confounding source. All of this will just make your PSA a better indicator of PC progression.
As for other indicators, I'm impressed that your doctor is using PCA3, because it is not influenced by BPH and prostatitis the way PSA is. Other biomarkers that are available include -2Pro-PSA and %free PSA. Taken together, all four of these biomarkers can give you a very good handle on your Active Surveillance (AS) program.
That said, I know of no AS program that does not include biopsies. The problem with biopsies, as you know, is that (1) if negative, it might miss the areas where the PC lurks or give a lower than actual idea of the extent and grade of the cancer, and (2) if positive, it might make you more anxious and cause you to pursue radical treatment many years before necessary. Remember, most PC is indolent and you are more likely to die with it than of it. At some point, you will probably want to have one. Your PSA is elevated, but does not seem to be progressing very fast if at all.
I think you might want to go to a center that has an Active Surveillance program and talk to a doctor there. I am impressed that your doctor gave you a PCA3 test and isn't rushing you towards treatment -- it gives me hope that doctors are becoming better informed and patient oriented.
The Following User Says Thank You to Tall Allen For This Useful Post: CowboySailor (11-18-2011)
As I thought about it, you did not mention that your prostate is enlarged or that you have urinary symptoms, which I was, perhaps erroneously, assuming. Finasteride and alpha1 blockers relieve urinary symptoms and have never been recommended prophylactically in their absence.
Thank you for your quick reply and spelling out the risk to my approach. My GP actually didn't even know about PCA3 as I had read about it on one of the forums on this board. So when I went to see him, I had also brought some literature from Johns Hopkins and already knew which lab could do this (the test was sent to a lab at mayomedicallaboratories.com). I should also add that I had read Dr. Myers' book on "Beating Prostate Cancer" and read almost anything I could get my hands here on healthboards.com, plus read up about it at Johns Hopkins. What I lacked was experience/feedback on the various treatments which individuals like you bring to the table.
I think my GP may have come to the conclusion to do no harm unless absolutely necessary - and any medication or procedure CAN do harm. And with a PSA of 5.6 and undecidable results from the PCA3 test of 36, he wanted to make sure that we pick the time when it IS necessary to respond.
To answer your questions: I have no symptoms whatsoever and don't need to go to the bathroom during the night. Thus, no BPH. As you had mentioned, I also tried antibiotics to see if I might have prostatitis four weeks before my last blood test. So, if my PSA value in 3 months passes a certain threshold, we can then do a biopsy.
The irony of it all is that about a year back I wanted my GP to consider getting my testosterone count up from 200 and now with my elevated PSA value need to consider getting them low (I read that some think 50 is the magic number, but some feel 25 is better!) using hormone treatments.
Recently, I also went to UK and German prostate boards and whatever I could find to read up on their approach. Yesterday I came across the report from Andy Grove (of Intel fame - now battling Parkinsons) back in the mid 90s, as well as from Senator Dole and General Schwarzkopf on their battle with prostate cancer. Andy did a great write-up in Fortune on how each medical specialty has blinders on and does not compare results with other approaches. (If you go to Midas, you need a muffler!) A surgeon will want to cut it out, etc.
Additionally, I had a friend in Florida who had a radical prostatectomy and they severed his nerves and he will never have an erection again. A few days ago, I listed to an interview of Dr. Patrick C Walsh (http://urology.jhu.edu/patrickwalsh/) by Charlie Rose how he came to develop the nerve-sparing techniques for radical prostatectomy. So when he developed these techniques ages ago, how come they still sever nerves? As I am reading right now, a doctor asked a patient if he wanted to remove the cancer or still be able to have an erection? An unacceptable question. I'd find another doctor.
What prompted my posting was that some individuals I came across had a lower PSA than mine, yet were found - after one or multiple biopsies - that they were carcinogenic and used surgery to solve the problem. Then they had to deal with the after-effects that were a surprise to them as the doctors didn't explain these side effect to that level of detail.
So my thinking was rather than use the full triple hormone blockage mentioned in Dr. Myers' book, maybe I can use a single blockade treatment to minimize side-effects and lower my PSA results. The idea being to avoid any surgery/incision until absolutely necessary.
I like your approach of getting additional data points with 2Pro-PSA and %free PSA in addition to PCA3 and total PSA -see http://tinyurl.com/78o5cpf : "Adding [-2]proPSA data to total PSA data and free PSA data appears to be able to improve the ability to predict the probability of a positive biopsy result — at least in men with a PSA between 2 and 10 ng/ml." (Hope I can post a URL!).
Thanks for the tip and I will also see if I can find an active surveillance program around here.
There are Pro's and Con's to "Watching Waiting", "Active Surveillance", and the latest one Prostate Canada is pushing "Focal Therapy". Some groups are promoting these approaches to cut costs in my opinion although I am well aware and familiar with side effects which likely result the from different treatments. If you are comfortable with living with cancer and taking the chance that you will either die of something else or that you will still be able to effect a cure a later date then these therapies may be for you. On the other hand the earlier you get rid of the cancer the more likely that you will be able to be cured without potentially devastating side effects such as impotence, incontinence, or severe bowel damage.
In my case I had a radical prostatectomy in 2001 which resulted in positive margins and failure and then I had Proton Beam Therapy at Loma Linda for salvage in 2009. My opinion is that I was mislead by doctors who told me to wait and that the best course of action is to treat the cancer aggressively as soon as possible. I thank my lucky stars that I went to the US and Loma Linda for salvage therapy.
Check out all the treatment options and talk to doctors who are experts in each. Many doctors may bad mouth other treatments or use old statistics on newer therapies. My research convinced me that Proton had very high cure rates as good or better than any other treatment with almost no side effects. So if you are young and active you may want to check it out.
I messed up my posting above. In the second part it should read:
"My opinion is that I was mislead by doctors who told me not to seek further treatment on account of the serious side effects of more treatment. I feel best course of action is to treat the cancer aggressively as soon as possible". Of course my doctor's opinions in Canada were influenced by the large number of serious side effects that their patients were suffering in the government system. They were not even aware of Proton Beam Therapy.
Thank you for your posting and pointing out this book "You Can Beat Prostate Cancer" by Robert J. Marckini, as well as the proton beam therapy, which I was not aware of.
I am not comfortable waiting, which is why I am posting on this board to learn of more options to think out of the box. Since it is my body, I will make the call when I have enough data points to move forward - and not wait or trust a doctor when I see potential options.
I have learned and seen enough about medical practices that I know I need to be one step ahead of what the doctor knows. Furthermore, as Dr. Myers said in a video blog, the US healthcare is behind what is going on in Europe and Australia. I had a friend from Washington state go to Germany for a 6 disk replacement of the neck during one surgery. She was almost pain-free a few days thereafter - after years of migraines - and out of the hospital in 4 days after surgery. Cost: Over $50k. Most dental implants come from Europe, and there are other areas where the US is simply lagging behind.
As for your trip to the US and Loma Linda, let me add that since I live in the US there are additional considerations: I was part of a work force reduction (euphemism for 'terminated') on Sept. 2007. If you were over 50 then, there was no chance finding a job as on the bottom line a CFO can justify two undergrads, but not one MS/MBA expert who could bring a project to a profitable conclusion. So most of my friends and I have no work and rely on our spouses for healthcare benefits. My wife only works part-time - no benefits.
In the US, contrary to other civilized countries, you CAN go broke - and beyond - trying to salvage your health or life. Thus, I have 'catastrophic' health insurance. Last week I wanted to talk with an authority on prostate cancer and was told I needed a biopsy and spend $1,600 for a two hour session on the US east coast (I live in Colorado). I understand a biopsy could run in the $1,000 to $1,500 - and as 'Tall Allen' pointed out, they may not find something and I'll need to do it again. I don't have kids, but if I did being unemployed and had to choose between putting food on the table or having this biopsy and consultation, it would be a hard call.
So while you may have a hard time getting treatment in Canada, in the US you can easily go broke. Which one is fatal? Be glad you have a job and the money to pursue your options.
So I am looking for non-invasive options to try first and with (hopefully) minimal side effects. I plan to have my blood tested again in the near future based on 'Tall Allen's comment on additional biomarkers. I will also find an Active Surveillance program to get another opinion without loosing my shirt - I hope. And once I have an action plan, I plan to hit it hard and deep.
An excellent reference at this stage of your search would be "Invasion of the Prostate Snatchers" by Dr Mark Scholz. It has a chapter on when to get a biopsy and a lot of data on how and what to monitor when on an active surveillance program. Also good data on the pros and cons of all treatment options.
My last PSA reading was 0.01 and still dropping, down from 0.50 on recurrence. Thanks for the excellent article. I see it's dated June 1, 2008 and if you use the search feature on the page entering "proton beam therapy" there are other articles including one titled "Proton Therapy for Prostate Cancer" which is dated June 15, 2011.
In Canada you can also go broke trying to save your life and quality of life. I don't consider Canada one of the "other civilized countries" as you can spend years on waiting lists and many times it will be months before you can see a specialist. Also many cutting edge medical technologies commonly used in the US are not available in Canada and many people die on waiting lists or suffer in pain for years. Even MRI machines which are now common in the US are somewhat rare in Canada, for instance the city of Pittsburgh has more MRI machines than all of Canada where you will probably wait 4 or 5 months if you need one.
I do know that Loma Linda which is a religious institution will treat you for cost if you are a US citizen without insurance. I don't know about other institutions but it is worth talking to them. Check out support groups at different institutions as they can help you with insurance problems. The book I suggested mentions one such group.
Good luck, Bob
The Following User Says Thank You to harpman For This Useful Post: CowboySailor (11-20-2011)
Just a short update that I feel much better having almost finished the book "Invasion of the Prostate Snatchers". (Thanks, Harpman).
The more I read, the less I want to have an invasive procedure done - unless there is no other way. It may bite me down the road, but time is in my favor (I hope). Anyway, to get a baseline on my current status, I am investigating finding a location where I can have a high-resolution color Doppler ultrasound done. My phone calls today yielded all dead ends in Colorado. So if you have heard of a location in the US, please let me know.
Furthermore I have recently contacted the Proton Centers in Jacksonville, FL (immediately sent me overnight paperwork and the book by Robert Marckini "You Can Beat Prostate Cancer") and in Oklahoma (to find out more about a trial for low PSA treatment - no response so far). Also just signed up tonight with Loma Linda Medical Center and also requested their Proton Therapy info and DVD.
Basically, so far the risk of side effects from Proton Therapy seem to be way lower than with any other procedures or therapies.
Last week I talked with an Curtis Pesmen, co-author of “Your Prostate Cancer Survivors' Guide" who lives nearby in Boulder. CO, and he pointed out to me that I should have my ducks in a row for when my PSA goes up. I may then fall off the handlebars and need to have clear steps for me to follow.
He was impressed by a local authority (urologist) on PC that I could contact for a second opinion. On the web site for this authority, I found a link advertising for "Targeted Focal Therapy" (partial prostate cryotherapy) which (supposedly) minimizes side effects. I was not getting a warm and fuzzy feeling at this point.
So I hope that my conversations with the Proton Therapy Centers will yield additional information - plus I hope you have some thoughts as well.
That's the short version of my latest developments. Once I have my next blood and urine test, I will know more.
The best color doppler radiologists are Dr Duke Bahn in Ventura Ca, Dr Fred Lee in Rochester MI and Dr Michael Dattoli in Sarasota Fla. With the CDU it's the Indian and not the arrow, meaning that the radiologist reading the scan has more do do with the outcome than the technology itself, so get the best radiologist you can get. Witht he Color doppler you will at least know what you are possibly dealing with and at the worst you will have a baseline to monitor any future progression and it's speed to include in an AS program. It would be well worth the money to travel to see one of the above doctors.
The Following User Says Thank You to Johnt1 For This Useful Post: CowboySailor (12-14-2011)
Thanks for this info. It looks like I will try be in Sarasota soon enough to get that baseline color Doppler ultrasound scan done there.
I talked with a professional research assistant (PRA) for PC yesterday here in Colorado and he checked with a Urologist, who claimed that color Doppler ultrasound will only tell you enhanced blood flow, but not distinguish between a benign growth and a carcinogenic tumor. Do you have additional data about this claim? From my perspective, if I have enhanced blood flow and no BPH, then that is bad news to start with.
The other issue I'd like to verify is that there has been no impact in my seminal vesicles, which is typically the first place impacted if the cancer moves out of the prostate based on what I have read. Will the color Doppler ultrasound be able to do this for me?
The imaging department at the local hospital here didn't even know that color Doppler ultrasound exists, so I don't have a lot of resources - and the PRA also wasn't that familiar with it.
If you do a search on "Imaging in the Diagnosis and Management of Prostate Cancer" you will find an interesting and informative article on various imaging technologies at a .gov site. Hopefully this posting is allowed.
You are doing the right thing in gathering as much information as possible before making an informed decision. My experience from participation in a support group is that few people do any research and just go with what the doctor tells them.
The Following User Says Thank You to harpman For This Useful Post: CowboySailor (01-02-2012)
Here is a short response to one question in your post #15. You wrote:
... I talked with a professional research assistant (PRA) for PC yesterday here in Colorado and he checked with a Urologist, who claimed that color Doppler ultrasound will only tell you enhanced blood flow, but not distinguish between a benign growth and a carcinogenic tumor. Do you have additional data about this claim? From my perspective, if I have enhanced blood flow and no BPH, then that is bad news to start with....
At least the urologist knew about CDU. Your point about added blood flow is a good one; benign growth is not associated with enhanced blood flow, as I understand it. Moreover, based on presentations I've attended, expert doctors can make good judgments about the size, shape, and location of cancerous growth based on the pattern of vascularity that they see on CDU. In fact, the shape of the likely tumor also gives clues about its aggressiveness.
I read your other posting celebrating another milestone. Congratulations - and Happy New Year to all reading this posting!
Unless someone has been in your shoes or at least knows that they might be, one may not appreciate what you - and us (possibly) facing the same issue - have or will go through. Talking to friends who are busy with work or kids, they just cannot focus long enough to actually understand what PC is all about and what the side effects are. Their usual response of just listen to the doctor as he is the authority just doesn't wash with me anymore - and that is also why you probably were able to make this next milestone.
I have quite a bit more faith in the feedback I have been given on this forum. The professional research assistant was **not** aware of CDU and that is why he checked with the doctor. Did make me scratch my head...
Harpman is correct that many with a disease just listen to their doctor and leave it at that. No research or follow-up questions down the road.
After reading the fourth book about PC - with two more to go - and now that a new year has started with a new deductible, I'd like to get another round of blood and urine tests done before I schedule a CDU and see a specialist (for CDU, Dr. Duke Bahn and Dr. Scholz as the PC specialist) with those results.
I was thinking of getting a PSA, PSA velocity, PSA density, free vs. attached PSA and -2Pro-PSA (if I can get this test done) test done.
I have been thinking of getting another PCA3+ test done after a DRE, but am not sure this will make me feel any better emotionally if the results are higher (worse) than the last time. The above tests should indicate more conclusively if it is time to see a specialist, who could then do the hi-res CDU scan to determine size, blood flow, and any other anomaly. I would definitely feel better having a CDU test done just to have a baseline. If conditions change down the road, it would be better to have a baseline to compare against.
Do you - or anyone else - have any recommendations of what other blood and urine tests I should have done?
You are not that far from the James Slater Proton Center in Loma Linda, California or Procure in Oklahoma City. Consider having a consultation at one of these institutions. I think that you can find any test you want in the greater Los Angeles area. You are right most doctors do not know a lot about PC and especially cutting edge treatments. That may have been a pun.
Thanks for reminding me to update my forum status.
I did contact both institutions .
My thinking is that since I will be in the greater LA region for the screening, I could then stop by Loma Linda afterwards to take things to the next level depending on the results from the screening. Being younger than 65 puts me at a disadvantage as I will have almost no financial assistance from my health insurance and will need to address that, too.
Do you happen to know if Loma Linda or any other Proton Therapy (PT) institute has provided 5, 10, recurrence or long-term cure rates? Many experts claim that IMRT has similar patient results and dismiss that PT has less side effects . However, from what I have read, PT does have less side effects.
The more I read about PT, the more I know that when my PSA rises, I'll need to have my ducks in a row and get PT as soon as possible - preferable after I am 65.
Whoever said that 'Getting old is not for the faint of heart' was not kidding.