Recently diagnosed, need advice from survivors

Thumper,
Yes you are right
Thumper,

Yes you are right there are lots of choices including doing noting at all. I live in Atlanta and my Urologist sent me to Chicago to have Dr. William Catalona perform open surgery and this was the right choice for me…

At the end of the day when you make your decision make it based on what you truly believe is best for you and once you make that decision never doubt that you made the best decision you could for yourself. Most professionals you will see from my perspective are “snake oil salesmen” so it is your job to weed through it all…All treatment options have side effects and if anyone says anything else they are not being honest.

My oncologist urologist is out of St. Joe. Where is your’s out of?

The only thing I press with anyone are the two things you have 100% control over with fighting this beast and that is diet and exercise. If you are interested, I will give you my perspective in diet and exercise as well as how to goes through the decision process…Beware of folks that push their agenda as this is your fight…

Best to you in your journey-B

Welcome
Thumper,

Welcome to the forum, and we’re sorry that you’ve joined our club but I’m confident you will receive much good advice and empathy from those who have traveled a similar road to the one you are just starting.

I too was diagnosed at 59 (last March) with a very similar pathology as yours. One of the things you will soon realize, if you haven’t already, is that despite having prostate cancer you are extremely fortunate to have discovered it very early while it is at a low risk stage giving you the advantage of choosing among a wide variety of treatment courses that promise to be very effective in defeating your cancer. Many men are not nearly as fortunate and are faced with much more difficult choices.

Like you, I met with an open surgery advocate (my urologist) and a robotic specialist who was a close colleague of my urologist. I also met with an oncologist with a prostate cancer specialty, and my GP who referred me to the urologist to begin with. All of these consultations recommended surgery although in the end I went in another direction. I also consulted with Loma Linda Medical Center in Southern California about proton treatment and met with two different SBRT specialists that used different methods to deliver very precise hypofractionated radiation to the prostate. I also did a phone consultation about active surveillance.

In addition to the consultations, I downloaded eight books on prostate cancer to my Kindle, bought three or four more hardbacks that weren’t available for download, and read dozens and dozens of studies and papers. I found that understanding the terminology in the papers was much easier after I had read the books about prostate cancer. I also found a medical dictionary and a Gray's Anatomy from a used book store to be useful when reading the studies and understanding the anatomy of the prostate and surrounding area.

After I felt I had gathered enough information to make an informed decision, I built a matrix where I compared each of the treatments on the basis of likely outcome, side effects, convenience, time to recovery, out of pocket expenses (like travel), and so forth. I then color coded the choices based on what was most important to me. Going through this process forced me to prioritize what was most important to me enbaling the decison process to be more focused and justifiable, at least from my point of view. In the end I ended up with two choices that were very similar all around and at that point I pretty much went on gut feel and what I was comfortable with. I was fortunate to have excellent medical coverage that would have handled any treatment course I chose to pursue.

For me, quality of life was the most important consideration, even over an eventual cure although that was the #2 item of importance. As I studied, I realized that just about any of the treatment methods offered a very high likelihood of success in my case and at that point it became a matter of choosing the procedure that minimized side effects on my lifestyle.

If you haven’t already done so, you will want to create a detailed medical file with all of your records, medications, medical history, notes from consultations and so forth. You may also want to consult some nomograms (available online at several sites) and calculate your PSA density, PSA velocity, and PSA doubling time…all of which can be useful in judging the potential efficacy of treatment in your particular case. Having your wife or significant other with you during consultations is also helpful to gather all the information which tends to come at you like a fire hose on solid stream.

Hope this helps. It sounds as if you have a handle on the process of sorting it all out and you have plenty of time to do the research you need and make an informed decision.

You will find lots of good advice in this forum from many well meaning men (and sometimes women) but at the end of the day you have to make your own choices based on your own priorities.

Good luck and keep us posted on how you progress.

=========================================
Age at Dx: 59. PSA @ Dx: 4.3 but dropped to 2.8 before treatment after eliminating dairy. 1 of 12 biopsy cores positive at 15% involvement. Gleason 3+3=6. DRE normal. No symptoms or history of PCa in family. Sage T1c.

Treatment: SBRT monotherapy using the CyberKnife system June 2010. Side effects at 2.5 months: None

Sorry that you have been diagnosed,
like the rest of us , we understand that you are going thru shock , depressive feeling which will go away in a few months......Believe it or not you are fortunate to have a early diagnosis, and you have time to make the best decision for you.

There are various support groups for prostate cancer that you can attend where you can gain a wealth of information and support....some support groups are better than others.

As previously mentioned it is a very good idea to get a second opinion on the pathology from your biopsy from another institution. Basically is is very difficult to determine the gleason levels, and there are a few institutions where there are experts who can do a more effective pathology analysis....this is very important for you in determining a treatment option.

There a test that is an excellent one, probably the most important test that I have taken..You can get this test a some of the major institutions where there is better MRI equipment, specifically a Tesla machine and skilled medical personnel.

The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease

This test is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

Ira
Active Surveillance, diagnosed age 66

hopeful and optimistic said:

Sorry that you have been diagnosed,
like the rest of us , we understand that you are going thru shock , depressive feeling which will go away in a few months......Believe it or not you are fortunate to have a early diagnosis, and you have time to make the best decision for you.

There are various support groups for prostate cancer that you can attend where you can gain a wealth of information and support....some support groups are better than others.

As previously mentioned it is a very good idea to get a second opinion on the pathology from your biopsy from another institution. Basically is is very difficult to determine the gleason levels, and there are a few institutions where there are experts who can do a more effective pathology analysis....this is very important for you in determining a treatment option.

There a test that is an excellent one, probably the most important test that I have taken..You can get this test a some of the major institutions where there is better MRI equipment, specifically a Tesla machine and skilled medical personnel.

The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease

This test is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

Ira
Active Surveillance, diagnosed age 66

Look into HIFU
There is another choice to be made, but it comes at a $$ cost, because it is not FDA approved in the USA as of yet. It is approved in every other country, and is standard care in France, Italy, and others. It should be FDA approved in the USA soon, a year, I hear, so in your case you could possibly wait. Cost is $25,000. and you must travel to Burmuda or the Bahamas for treatment (insurance rarely pays). An American doctor also travels to meet you, along with his staff of nurses, anesthiesologist and a mechanic for the machine. You get treatment at a great hospital, they put you asleep and the procedure takes just two hours. If you google HIFU you will find lots of stories in newspapers, Nightline had a show on it and wikipedia has a write up, plus much more. There is a business that books us, International HIFU, very caring, very professional. I am extremely glad that I scraped up the money because it was painfree and no side effects. Happy to help if you have any questions.

Thumper,
One other
Thumper,
One other consideration is that the biopsy can over or underestimate the cancer that is present. THe biopsy involves collecting very very small cores which can easily miss the cancer that is present. My biopsy identified cancer in only one of 10 cores with a Gleason 3+3. No external nodules were present and the prosate was not enlarged. When my prostate was removed it was determined that the cancer was contained but was present throughout the prostate. The readings were now a Gleason 4+3 and a Gleason 3+3. Much different than what everyone considered to be present based on the biopsy. My only point in this is to note that the biospy results are useful but may not give you the full picture. I decided to have a my prostate removed and am glad I did as I know that the cancer was contained and was not present in the lymph nodes or seminal vesicles.

buzzz said:

Look into HIFU
There is another choice to be made, but it comes at a $$ cost, because it is not FDA approved in the USA as of yet. It is approved in every other country, and is standard care in France, Italy, and others. It should be FDA approved in the USA soon, a year, I hear, so in your case you could possibly wait. Cost is $25,000. and you must travel to Burmuda or the Bahamas for treatment (insurance rarely pays). An American doctor also travels to meet you, along with his staff of nurses, anesthiesologist and a mechanic for the machine. You get treatment at a great hospital, they put you asleep and the procedure takes just two hours. If you google HIFU you will find lots of stories in newspapers, Nightline had a show on it and wikipedia has a write up, plus much more. There is a business that books us, International HIFU, very caring, very professional. I am extremely glad that I scraped up the money because it was painfree and no side effects. Happy to help if you have any questions.

Thanks for the post
Buzz,

Thanks for the post and welcome. Since I first began reading this forum, you are the first one that I can recall who has completed the HIFU treatment and posted here. There was one wife who used to post severall months ago but she tended to have such controversial posts that it was hard to take her seriously. Would you mind sharing with us (perhaps it would be best if you started a new thread) the details of your diagnosis information and the decision process you went through to eventually choose HIFU as your course of treatment?

When I studied HIFU I was frankly wary of a procedure that had not yet received FDA approval although I knew it was in use in Canada and some European nations and was likely to eventually be approved here. I was also looking for a medical team that would be there with me for the long haul not just for a quickie weekend in the Caribbean. I would be interested in how you decided to go the HIFU road and how much the fact that it wasn't approved in the US was a factor in your decision process, what your statistics were, how will they follow up with you, and your total out of pocket expenses beyond the $25K or so for the actual procedure.

Glad you have had a good experience with your treatment.

Thanks.

vinyl4ever said:

Thumper, i've read thru the
Thumper, i've read thru the string & it seems that u have enuff data to qualify for "overload"!
3 yrs ago, my decision was for EBR...42 treatments that were totally painless & with few side affects during treatment. all PSA's since then have been 1.0 or less.
however, in the past 2 months i have had 2 episodes of: radation cystitus. perhaps u are aware of it (?) it is a pretty severe case of blood in urine, including quite a bit of clotting & has very painful bladder contractions. the 1st episode landed me in the hospital for cathiterazation & the old bladder camera!!! not much fun.
in all of my data gathering prior to my decision, this particular side effect was never mentioned?
i am still going to my Dr's to try to figure out how to deal with it.

i am telling u this as a surviver & not to scare u away from the treatment choice. this could very well never happen to u, as it doesn't happen to every EBR patient. i'm one of the unlucky ones, i guess.

BTW, i know one person who elected RP 4 yrs ago & is doing very well now... i also know a person who elected Proton Beam 5 yrs ago & he again is doing well.
so, we CAN beat this thing, it just ain't much fun!!!!

hope this testimony helps you & good luck to you

Amem…Depending on your
Amem…Depending on your beliefs you are either predestined to your outcome or it is just luck of the draw after treatment…

Best to all

bdhilton said:

Amem…Depending on your
Amem…Depending on your beliefs you are either predestined to your outcome or it is just luck of the draw after treatment…

Best to all

Personally I found HIFU
Personally I found HIFU through a doctor friend who had heard of it from France, he was very enthusiastic, and I also had a friend who had gone conventional treatment and he wasn’t happy. My scores were low, Gleason was 6, cancer in only 3 cores. International HIFU’s doctor examined my data and I was told I was a perfect candidate, since then I have heard of men being treated who had higher scores and I sent a friend who was turned away, his data wasn‘t right for HIFU and I don‘t really know why.. My out of pocket was hotel and air, and a great vacation. Hotel was $130. per night and air was $325. I spent some small money on detrol and Cipro for insurance against troubles. My doctor’s nurse phoned me the night after I was treated to check on me and my doctor asked that I email him every 3 days to keep in touch, sure he doesn’t live anywhere near me, but he has a list of doctors who support HIFU in my area of which I could phone if something had come up. Nothing did, yes, the catheter was a pain in the belly, but a small price to pay. Frankly, I think I relished the thought of doing something off the main road. I travel quite a lot, and I’ve been to hospitals around the world. I had no trouble deciding on HIFU and am very happy that I did. BTW, it was a quickie weekend in the Carribean, I thank God for that, I couldn’t have coped with any more. Erections are great and no leakage ever.

buzzz said:

Personally I found HIFU
Personally I found HIFU through a doctor friend who had heard of it from France, he was very enthusiastic, and I also had a friend who had gone conventional treatment and he wasn’t happy. My scores were low, Gleason was 6, cancer in only 3 cores. International HIFU’s doctor examined my data and I was told I was a perfect candidate, since then I have heard of men being treated who had higher scores and I sent a friend who was turned away, his data wasn‘t right for HIFU and I don‘t really know why.. My out of pocket was hotel and air, and a great vacation. Hotel was $130. per night and air was $325. I spent some small money on detrol and Cipro for insurance against troubles. My doctor’s nurse phoned me the night after I was treated to check on me and my doctor asked that I email him every 3 days to keep in touch, sure he doesn’t live anywhere near me, but he has a list of doctors who support HIFU in my area of which I could phone if something had come up. Nothing did, yes, the catheter was a pain in the belly, but a small price to pay. Frankly, I think I relished the thought of doing something off the main road. I travel quite a lot, and I’ve been to hospitals around the world. I had no trouble deciding on HIFU and am very happy that I did. BTW, it was a quickie weekend in the Carribean, I thank God for that, I couldn’t have coped with any more. Erections are great and no leakage ever.

Thanks, Buzz
Thanks, Buzz for sharing your HIFU experience and I'm glad it worked well for you. We all have to find the right treatment that works for us as we each have an individual cancer and unique personalities and no single treatment is best for everyone. I think until HIFU becomes approved in the USA it will take an adventurous spirit to follow the course you did and ignore the naysayers who tend to always look for fault in new treatment in this area.

Hope your recovery continues to go smoothly.

Swingshiftworker said:

Not a Survivor "Yet"
I'm not a survivor yet, but I hope to be shortly and went through a very quick and intensive 3 month learning process early this year that you're just starting now.

I chose CyberKnife (CK) -- an intensity modulated radiation treatment (IMRT) methodology that is suitable for early stage PCa patients like you and that significantly minimizes the side effects of treatment -- that I'm scheduled to begin day after tomorrow. It involves only 4 radiation sessions over a week and results have been equal to Brachytherapy (without the seed implantation) and Proton Beam Therapy (PBT), which is also an IMRT methodology, but requires 40-45 daily treatments and other things that are more inconvenient than CK. The main problem in getting CK or PBT will mainly be in getting it paid for by your medical insurer. BT is universally accepted by medical insurers.

The important thing to note is that surgery is often touted as the "gold standard" for PCa treatment, but it comes with the greatest potential NEGATIVE side effects, including extended bouts of ED and urinary dysfunction which, in the best cases, usually lasts a year or so (think diaper pads and no woody for a year) and in the worst cases can require a penile or urinary sphincter implant down the road. CK, PBT and BT do not present that kind of risk.

So, in your research and discussions w/physicians, you should ask them about these other therapies. More likely than not they will NOT know anything about CK or PBT or, if they do, may dismiss them as "untested" treatments, which is not the case. Such responses should compel you to do further research on these treatments to see if they better meet your needs than surgery or BT.

BTW, surgery and BT were the only treatments offered to me at Kaiser (where I was previously a member) and my research led me to CK and my subsequent change to Blue Shield so that I could receive the treatment at UCSF in San Francisco.

I Am A Survivor
Hello Thumper,
I am a survivor. I was 60 when I had radical prostatectomy open surgery March 2009.
My PSA was 22 Gleason with all 12 pins positive for cancer. Post op PSA <0.02 and <0.008 on all other PSA including last one on July 23, 2010. My case was more serious than you and I chose quantity of life over quality of life. I still have some incontinence using 3-4 pads per day and situation is improving. I have found kegels do help. I have no erectile function and plan to further discuss this with uro on Monday followup visit.

I agree with NM, you have to decide for yourself weighing all of the options and decide what is best for you. I strongly suggest you and your wife talk to the urologists and doctors because this effects her too and with both of you there, one may think of something that the other does not. Pray, ask for God's help. My wife who is a cancer survivor also and I can vouch for the power of prayer.

Whatever you decide I wish you the best. You will be in my thoughts and prayers.

JR