At this point I don't know much. I am not surprised by my diagnosis since all the men in the family died of prostate cancer. My father was diagnosed in the mid-80's and died at the end of 1998. He followed the usual treatment pattern at the time; surgery, radiation, hormones treatment. He eventually died of bone cancer.
I am interested in learning from the other members of this group of there experiences both physical and mental in dealing with choosing and insurance complications. I have found out so far that each doctor believes that his treatment is the best way to go. Surgeons want to cut, radiologists want to radiate, and radiologists are divided into two groups, the photons and protons shooters.
I have heard nothing that tells me one is better than the other. Sometimes I think I have been told I have a cold and I should go to the drugstore and pick something I want to treat it, but as they say in the movies "choose wisely".
I have an appointment in five weeks to meet with the proton people at Loma Linda to get there opinion. Does five weeks seem a little long or is that just me? After that I will make a decision.
More to follow...
I have been moving thru my process and have decided on proton therapy as my treatment of choice. When the site is back in action I will update my story. My big problem now is getting my insurance to pay for my treatment (~200K) [There seems to be a considerable variance in the cost of this treatment. The figure often referred to is US$100,000 at Loma Linda, with the possibility of negotiating that downward in the event of hardship, but lower costs have been mentioned - including a 'tourist option' in South Korea]. In the US having insurance is not a big a problem as getting your insurance carrier to cover your claim. The idea seems to be that if they wait long enough maybe you will die. Well I'm not going to give them the satisfaction.
As I have gone through my decision process it has become clear to me that very few people have an open mind to treatment choice. Surgeons cut and radiologists cook, both have little interest in what their patients desire as an outcome. I have heard that there are doctors out there that will give you an unbiased opinion, but all I can say is that I have not run into them.
My insurance company (Cigna PPO) has refused to pay for my treatment. Their reason is that there are "equivalent treatments" available. I really don't understand that reason, but it doesn't matter at this point. My only recourse at this point is to sue them.
I chose PBT because of the lack of side effects. My desire is to live my life at the highest quality possible. I do have first hand experience with a PCa patient, which was my father. He was diagnosed in 1985 and his option was surgery. This took a toll on his ability to function normally in daily life. When the cancer returned in 10 years he went onto radiation and hormones followed shortly after that. It appeared to me that the treatment was worse than the disease.
I looked through this site when my daughter found it for me and noticed that there was one treatment method that seemed to have little or no side effects, PBT. I looked at the odds or 5 year outcome for all the treatments and saw that they were all within a few percent of each other. Of course, these are just statistics, so they are nice to know, but really not applicable to individuals. Just in case you are interested in statistics, over the entire group of people treated with PBT over 5 years the outcome is 82.4%. For people at my stage (T2a) the outcome goes up to 92.7%. I think I can live with that.
I had my consultation at Loma Linda with Dr. Carl Rossi on May 4. The experience was much different than the others I have had in that I was treated like a person and not a patient. They have a great support staff out there who try to help you as much as possible with all aspects of your treatment. I went out there on June 1 and had my CT scan and pod fitting in preparation for my treatment which start on June 8. I had to pay cash up front to start the treatment and I hope to get the money back after the insurance pays. I will report on that one later.
That's about all for now. I will report back from time to time as the treatments are progressing. If anyone is interested in finding out more about my PBT treatment, feel free to e-mail anytime.
Well it has been a while since my last update, so I am almost completed with my treatment. I have two more to go and that will complete my 45 treatments.
I have experienced no real side effects other than some minor urinary issues. The treatment requires a full bladder and the insertion of a rectal balloon to maintain the prostate position during treatment, but that is just a temporary discomfort. Loma Linda has been a great place a go for treatment. The staff is very helpful and the support groups give you a chance to interact with people who are going though the same thing you are. My doctor has treated almost 10,000 prostate patients, so he has the kind of experience you want for this treatment.
I also had the opportunity to visit with some of the MRI docs while I was there and they showed me their MRI spect diagnosis system for prostates. It uses a 3T MRI and doesn't require a rectal probe to be inserted. It is a good way to evaluate the presence of cancer and help guide the biopsy. Too bad this is not the standard of care (yet).
On a positive note, my company has instructed the insurance company to pay my claim. Now it is just a matter of waiting to see what they are going to pay.
Now I wait 4 months for my first PSA and 6 months for a DRE.
Life goes on. As always, if anyone is interested in more information about PBT feel free to contact me directly.
Best Regards, Greg
It has been a while since my last update so I had to re-read my story to remember what I have already written.
I had my first PSA in mid-December and it was down to 0.9 from 3.8. It is going the right direction. The only side effect is urinary frequency, but I had that before the treatment. The main problem seems to be emptying the bladder, but it has only been five months after treatment so I suppose I need to be patient. Everything else works just fine. There has been a decrease in seminal fluid, but that was a given going into the treatment. I guess only time will tell. My DRE is scheduled for June. I will report back then.
From an insurance point of view. The insurance company (Cigna) advised my company to pay $100,000 for my treatment. Unfortunately, the contract amount for the treatment is only $55,400, so they overpaid the provider by almost $45,000. Heck of a way to run a business.
Talk to you all in June.
Best Regards, Greg
This will just be a quick one.
I completed my PBT at Loma Linda seven months ago and my most recent PSA was 0.7 down 0.2 from last time. I assume it will take at least a year to bottom out.
My only symptoms are minor urinary problems mostly related to urgency, but no incontinence at all. It still takes a while to get going in the morning, but a cup of coffee and some water takes care of that problem.
I have also noticed that my sexual performance is better in the evening than in the morning as well. I assume the healing process will eventually take care of that. My first DRE is scheduled for June so that will be the next update.
I am still very pleased with my choice of treatment and happy to share my experiences with anyone interested in learning more about the process.
Bye for now. Greg from California.
It has now been 10 months since I completed my PBT at LLMC with Dr. Rossi. I just had my first DRE since completing treatment and all is well. There was some bumps on the right side of the prostate which are now gone. My last PSA test was 0.8 which is down from 2.2 at the start.
I feel fine, other than getting older, and any side effects are very minor. I have my next PSA and doctor visit in August. I expect nothing to change.
I attended a support group meeting at Loma Linda after my visit to the doctor and noticed that the number of patients being treated has increased by 50% since I finished my treatment. Apparently PBT is becoming more popular. The Mayo Clinic has started building two new proton treatment centers in AZ and MN.
I'm glad I selected this treatment method and would be happy to talk to anyone considering PBT.
Cheers, Greg Kampa
Well it has been over a year since my last report and all is still going well. My last PSA was 0.5 and DRE was all smooth and clear. Next stop for this old body is a colonoscopy coming up in August. I have no side-effects to report other than a little rectal bleeding which is basically blood in the stools every once and a while. The colonoscopy should be able to check that out and I will update if there is anything of concern to pass along.
As always if anyone is interested in discussing this treatment option with me you can do so by e-mail.
Cheers to all,
Well that went fast! It has now been over three years since my last post. My last PSA was 0.3. Still no side effects from my treatment. My colonoscopy went well. I have been busy. We moved to Orange County, California, we both retired and have been very active doing what we want whenever we want. I have no limitations on what I can do and consider myself cured. My next big goal is to live past 74 years of age. That will be a new record for the men in my family. We still do a lot of traveling, but if anyone would like to know more about PBT feel free to contact me via my new e-mail address, email@example.com
Well it has been a little more than a year since my last update and I have nothing to report other than I am just fine. My PSA has remained steady for 6 years now and I have no side effects to report. For me the PBT has worked great. I know it is a tough decision to make to choose a treatment but we all must live with our decisions in life and enjoy the life we have. I continue to be active and do as much as I can.
I wish everyone a happy Holiday season and I will report back next year,
Greg's e-mail address is: firstname.lastname@example.org