Got HIFU? I did, on April 13, 2012. Six weeks later I had no catheter, no incontinence and no impotence, felt completely normal and was playing golf and softball again.
Why is that important? When I was diagnosed with prostate cancer, on August 24, 2011, all of the procedure choices had undesirable side effects. Yet the doctors seem to minimize that in the discussion and were a little too cavalier for me.
Prostate cancer is certainly an individual journey, but websites like YANA allow patients to cut to the chase in their research. For me, I was on an island and didn't find out about YANA until later.
I was diagnosed with prostate cancer (PSA 5.65/Gleason 6) on August 24, 2011 on a Monday. The urologist told me over the phone. I hung up, looked at my wife and said, "I have cancer." I didn't know if I was going to die in one year or five. He didn't tell me.
Since my urologist was from Kaiser, a major health care company in California, their system was for me to next see an Rn who discusses the choices with patients and then suggests patients go out and do their research. I wouldn't be seeing her for two more days so our research began early.
When we met with Kaiser's Rn, she gave us choices, that included RALP, radiation, Brachy, Watchful Waiting. And gave us the look of "which one do you want?"
Huh? Are you kidding?
Finally she suggested that we "go out and do our own research." I did.
I began by reading abstracts on Medscape, contacting the National Library of Medicine, and contacting other prostate cancer patients.
And for me, that was the key. Old guys will just tell you shit. They do not hold back, like many urologists who seem to be more interested in CYA instead of servicing their patients.
After interviewing/exchanging emails with dozens of patients, our focus led to HIFU (High Intensity Focussed Ultrasound) the most non-invasive procedure I could find that killed the cancer/prostate with heat and not radiation or surgery.
It is being done in 30 countries with great results but is still going through FDA testing in the US. You don't think that there are any politics involved, do you?
My goal was to get rid of the cancer and come out continent and potent. I did.
Since everyone is different, as YANA will tell you, some people would not qualify for HIFU, but eventually, I did by shrinking my prostate size through Proscar and Casodex.
Out of the HIFU patients I interviewed. . .all were happy, none were incontinent, and the only one that was impotent was that way before the HIFU. Only one with a Gleason 7 had PSA numbers go up two years afterward and he is now in watchful waiting mode.
I also researched companies that did HIFU with Ablatherm as well as the Sonablate 500. For a variety of reasons, I chose the latter and began interviewing HIFU doctors provided by International HIFU, the company I believe to be best in the United States.
I did learn of two early on cases of "fistulas" from Toronto. . using Ablatherm, but International HIFU's data using the Sonablate 500 does not show the same health issues.
Just like urologists who do RALP, the learning curve on HIFU is very steep. Urologists must be experienced with observing dozens of HIFUs and hopefully have performed hundreds under their belt for me to work with them.
I chose Dr. Stephen Scionti from Boston to do my HIFU. We traveled to Bermuda for my outpatient HIFU and the day after my HIFU, I walked a mile and had NO PAIN. Dr. Scionti is the current FDA lead proctor for HIFU in the US. He is incredible! The first thing he did was gave me his personal cell phone number... and when I called, he picked up!
It's unfortunate that so many US urologists only do a handful of RALP per year resulting in great difficulty saving the nerve bundle so you are still continent and potent as well as a lot of unhappy patients who would "love to have their prostate back."
If you are reading this and need to have some dialogue, feel free to email me. I have a lot more to share if you are interested.
My PSA 18 months after HIFU has now dropped to 0.3. I have been working with dozens of prostate cancer patients and have created a blog that discusses cutting edge diagnosis as well as a treatment navigator chart that makes choices much easier to see. http://hifuprostateblog.com/
I'll be a panelist on international Cure Panel Talk Radio on Oct. 31, 2013 with Dr. Mark Emberton, one of the world's top urologists in London. Also, I've created a blog you can find on my bio below.
You don't need to listen to the telecast but consider passing this along to anyone you know who might be at risk and check out my blog if you get a chance.
As of November 1, 2014, my PSA continues to flatline at .3 after my 2012 successful HIFU. The significance of that is this: I don't think it matters where the PSA flatlines after treatment as long as you don't see it jumping up. If you do, then it's time to visit the doctor.
In my case, after HIFU, I believe I have an 85% chance that my cancer does not come back. If I'm in the 15 % where it does come back, I'm just unlucky and gotta go plan B.
My physician, Dr. Stephen Scionti is now in Sarasota, Florida and in my opinion, is one of the top readers of 3T mp MRI's in the country. Why is that important? Because there are significant mistakes made by physicians. It happened to me. A significant portion of biopsies and ultrasounds are misread with "false positives."
But if you have the newest and greatest method of diagnosis using Artemis or the like. . .for a 3T mpMRI, a trained physicians can rotate your prostate and see it in a 3 dimensional image and "see" the exact location of suspect tumor, ruling out biopsy missed tissue which happens all of the time as well as false readings by untrained physicians. That way you can only biopsy only suspect tissue.
You want to know the exact location to be able to understand your risk.
To be clear, "pilot error" is a big reason for overtreatment in the US with mistakes in diagnosis as well as mistakes in surgeries and radiation. I would suggest that anyone doing radiation or surgery spend considerable time in vetting high volume physicians and understand very clearly the risk for sparing the nerve bundle and possibility of side effects of incontinence and impotence.
Those two side effects are significantly under explained by physicians. They NEVER give patients a physician print out of their patient cancer recurrence, or frequency of side effects. Why is that?
Heck, I can walk into a restaurant and find an "A" on the window, the cost and caloric content of the food. But just try and find out the "report card" for a physician! Yeah, right. A nice translucent glass ceiling.
Lastly, since I last posted, I have created a blog and spent significant time discussing PCa choices with dozens of patients nationally. I have heard the good and the bad. And it is an understatement to say it pisses me off when I see physicians "hooking" people by "self referrals." It is happening everywhere.
Here is my blog: http://hifuprostateblog.com/2013/10/prostate-cancer-diet/#comment-70
As you can see I have not updated it much. But if you are reading this and have PCa, look at my diet suggestions. They work. I gleaned them from the ACS and USF. I have now lost 15 pounds, my cholesterol dropped 40 points, and my body is ripped. . .with a four pack.=-) Remember, you are trying to save your life, so, are you willing to change your diet?
If you need to bounce anything off a post PCa patient, email me. I am not paid by anyone, but am just paying it forward, like those on this website that I think is fabulous.
I am now 3.5 years out of dealing with my PCa and have NO cancer and NO side effects like incontinence or impotence. In 2012 I chose HIFU with Dr. Stephen Scionti. At the time HIFU was done in 30 countries but not in the US. Now that appears to be changing. The FDA appears to be close to approving HIFU for use in the US within the next six months. Although it will take two more years for health insurance companies to get up to speed funding HIFU, it is one more choice that, in my opinion, allows physicians to kill the cancer and yet spare the nerve bundle, so you may avoid incontinence/impotence that is frequent with other treatments. In fact, now US physicians have financing plans for HIFU until insurance companies get up to speed.
In addition, the advent of 3T Multi-parametric biopsies continues to advance. Now "some" physicians can layer ultrasound/MRI and create a 3D image of your prostate, and subsequently "see" the suspect area to be biopsied instead of random biopsies that miss tissue. Although 3T mpMRI was not available when I was diagnosed, I would not hesitate paying whatever it costs to have a 3T mp MRI diagnosis with an experienced physician. Then you will know exactly your situation and can respond accordingly.
Dr. Scionti is now in Florida and is the real deal. He is one of the best at reading 3T mpMRI and is without peer when it comes to HIFU. Google him. If you would like more information, call me and I'll give you his personal cell number so you can make informed choices.
It has now been four years since I was treated with HIFU for my prostate cancer, and my PSA continues to flatline at 0.4. I was originally diagnosed PSA 6, Gleason 6, T2B with 9/12 cores positive. Now I am cancer free with no side effects.
In the past four years I have spoken with dozens of PCa patients who were considering treatments from radiation, daVinci surgery, cryo, active surveillance, etc. Patients have found me on YanaNow, as well as Inspire/UsToo and other forums.
I have been on international CureTalk radio four times as a PCa patient advocate panelist, with London Professor of Urology, Dr. Mark Emberton, USF Oncologist Dr. Donald Abrams as well Dr. Stephen Scionti, Director of the Scionti Prostate Cancer Center in Sarasota, Florida.
FDA HIFU approval!
In November, 2015, the FDA approved HIFU (High Intensity Focussed Ultrasound) in the United States. Soon, we believe that US insurance companies will be paying for HIFU, just like they do for all other treatments.
Now PCa patients have one more less invasive treatments available. SonaCare Medical is now selling their HIFU machines in the US and there are multiple physician groups being trained and purchasing them.
However, just like those buying a Ferrari, HIFU machines have a steep learning curve for newly trained urologists and just not everyone is well trained to do HIFU. You want to find that "Mario Andretti" physician to drive your treatment so to speak.
In the world of HIFU, there is no one more experienced that Dr. Stephen Scionti, in Sarasota Florida. He has trained more physicians on HIFU in the US and was the proctor on the FDA clinical trials.
As of April, 2016, he has done over 50 HIFUs in his Florida office this calendar year alone. He is one of the top readers of mpMRI, has purchased the most sophisticated SonaBlate HIFU machine in the world, and can proximity map one's prostate to ablate the suspect tissue as well as spare the nerve bundle.
If you would like more information, or would like to have Dr. Scionti's personal contact information or to just have him evaluate your situation for FREE, please call me.
I am not paid by anyone; just paying it forward.
It has now been five years since I was diagnosed with PCa and did HIFU in 2012. My PSA has flatlined at .5 ng/ml and I continue to have no side effects at 69 years old.
Since my HIFU, I have been on six international CureTalk radio shows about PCa and have spent considerable time supporting others on Inspire and the Prostate Cancer Infolink. I have also worked with over 100 PCa patients internationally to help them know what questions to ask their physicians as well as looking at their own choices since everyone is different.
As I have shared before, I was Gleason 6, PSA 5.6 with 9/12 cores positive....and I did not want to do Active Surveillance and take any risks. I cannot be happier with my choice. Now that FDA has approved HIFU, there are dozens of physician groups in training and purchasing machines in the US, even though HIFU has been done thousands of times in 30 countries.
My doctor, Dr. Scionti continues to be the most experienced HIFU physician in the country and has trained dozens of doctors on HIFU. He, himself, has now done more HIFUs in the US than anyone. I can provide you with a letter if introduction if you desire.
Whatever treatment you decide on, make sure you are going to the most experienced and knowledgeable physician you can find. Translation: Find the doctor that is doing 30 a month, not 3.
At this time there are some financing options for HIFU, and it is only a matter of time until insurance covers it. There are already people in the US who have successfully petitioned their health insurance company to cover HIFU too.
If you would like to discuss what choices are best for you, call me. I am not paid by anyone, just paying it forward. I can provide you with a list of questions to ask your doctor, as well as a diet to use to reduce inflammation.
Jim's e-mail address is: firstname.lastname@example.org