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Diagnosed at 47

Gmaster414's picture
Gmaster414
Posts: 6
Joined: Jun 2012

Recently I have been diagnosed with Prostate Cancer. I have taken steps to insure this has not spread and I have spoken with different oncologists about my options. I have opted for surgery, but I am still concerned of the effects from having it. I read about a treatment HIFU (high intensity focused ultrasound.) This treatment is only done outside the US. It is still in the midst of FDA approval in the US. Has anyone had this treatment or know of someone who has? From what I've read, it sounds much better than radiation and less invasive as surgery, with higher percentage rates of keeping erectile functioning and less chance of incontinence. I also know it is expensive and not a lot of insurers cover this procedure. I would still be curious to know what others who may have experienced this think about it.

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

Hi, Gmaster. Welcome to the forum.

I am curious to know what steps you have taken to ensure that your cancer hasn't spread. Without knowing your Gleason score and the circumstances that led to your diagnosis it is difficult to gauge what is going on or what treatment options are appropriate in your cases.

As you note, the FDA has not approved HIFU for use in the USA. It is available in Canada and Europe and there are medical practices in the US that can arrange for a trip to Mexico or the Bahamas to have this procedure performed. As you pointed out it is expensive when you are paying out of pocket and I am not aware of any US insurance company that will pay for a procedure outside the US that is not approved by the FDA.

If you go back and look at posts over the past few years you will find several threads discussing HIFU and its pros and cons. A recent study I read not too long ago indicated that there was a disturbingly high rate of recurrence in men who had the procedure in Europe. The one positive thing about HIFU is that you can have it done again if the cancer recurs but I don't know whether you get a repeat customer discount or not. I also do not know what you mean that it is "much better" than radiation. I would caution you to be wary of advertising claims regardless of the procedure: radiation, proton therapy, DaVinci, HIFU, etc.

Hope you can share more about your pathology and good look as you sort out the best approach to your cancer.

K

Gmaster414's picture
Gmaster414
Posts: 6
Joined: Jun 2012

Thank you Kongo for the welcome.

I was advised to have a CT pelvic scan and Bone Density scan to determine if the cells had spread. Both came back normal.

My pathology on my biopsy produced a Gleason score of 6, with adenocarcinoma tumors on the left and right side of the prostate. One in eight cores examined with approximately 5% of tumor involved on both sides. My case was referred to the Mayo Clinic, and they confirmed the results the local lab had.

As to the HIFU treatment. It seems the US is testing it for men with recurring prostate cancer. I've also come across a couple of articles that show with this treatment there is a chance for the cancer to come back, but I think that is a risk with other treatments as well, except HIFU is something that can be used again, as you mentioned. The reason I am inquiring about this treatment is because after a read this article by Dr. Bert Vortsman, where he basically snubs the radical prostatectomy procedure, I thought I'd look into other options.

My dad was diagnosed in his early sixties and went with radiation on two separate occasions and now has bladder issues where he wears a catheter that has been inserted directly to his bladder. It is likely the second dose of radiation is what damaged his bladder. That is what I meant by HIFU would be better than radiation. I just found this site for a MRI-Guided Prostate Laser Ablation treatment that is done in New York City for men with low-grade tumors:
http://www.sperlingprostatecancercenter.com/?lid=1499676275&keyphrase=hifu+treatment&c=1499676237&provider=msn

It sounds similar to HIFU, but it is FDA approved here in the states. Any comments on this particular treatment?

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

Gmaster,

You're a young man with a lot ahead of you. Your diagnosis seems low grade with the low involvement and you may wish to consider active surveillance while you sort things out.

Radiation today is not what is was in the past. I don't know how long ago your father had his treatment but in the past several years there have been some exciting advances.

I was diagnosed at 59 with a Gleason 6 and 15% involvement in one of twelve biopsy samples. After a lot of research I settled on CyberKnife radiation treatment which is extremely precise (sub millimeter accuracy) and only involves 4 or five sessions. I had my treatment in 2010 and have had zero side effects with respect to incontinence and ED. You can check it out at www.cyberknife.com.
CyberKnife is a form of Sterotactic Body Radiation Treat (SBRT) which is one of the newest treatments for prostate cancer.

In my research phase I considered HIFU briefly but ended up rejecting it as an option as I wanted a team that was going to be there for the long term and I was uncomfortable going with a procedure that wasn't FDA approved. Given the recent results of some of the HIFU studies I 'm not convince it will ever be approved for use in the USA.

At your age you may want to consider banking some sperm if you are still thinking about having children. Almost any treatment you pursue is going to to significantly decrease your ability to reproduce naturally.

Best,

K

Swingshiftworker
Posts: 695
Joined: Mar 2010

Like Kongo, I was treated w/CyberKnife (CK), which after extensive research on the available treatment options.

I was 59 when diagnosed w/Stage T1C prostate cancer (PCa) w/a Gleason 6 (only 1 out of 10 samples positive w/less than 1 mm involved) and PSA 4.8 before treatment, which is characterized as "early stage" prostate cancer (PCa) suitable for treatment w/CK and other recently developed radiation technologies which substantially increase the accuracy of radiation deliver and, in turn, reduce the incidence and probability of collateral tissue damage (common in the past) resulting in ED, incontinence, rectal bleeding, etc. I have not had any side effects following my treatment w/CK in Sept 2010 just before my 60th b-day.

If you are willing to consider CK or other forms of radiation treatment, view the following video presented by a Dr. Fuller from San Diego who uses CK and other technologies in his practice:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

The video provides a very good overview of what CK is and how it compares with other treatments.

BTW, I am NOT a fan of surgery for the treatment of PCa and often men newly diagnosed w/PCa to the article by Dr. Vortsman to caution them about the risks and perils of surgery, which they might not be aware of. Although Dr. Vortsman is a proponent and practioner of HiFu, he has prior experience w/surgery and other treatment methods and the article is still germane to a evaluation of surgery vs. other treatments.

I too considered HiFU as a possible treatment but was leaning against it because of the cost (about $30k uninsured) and the need to travel to Canada, Mexico or the Carribbean in order to receive the treatment and the problems of receiving follow-up care from the providers who practiced in the US far from my residence. This was before the recent articles questioning the long term effectiveness of HiFU were published. Finally decided against HiFU along with other technologies (such as proton beam therapy (PBT) and low dose rate brachytherapy (LDR BT) after I found out about CK, which was offered close to me a the UCSF Med Center and covered by insurance (Blue Shield).

Good luck!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Gmaster, sorry to hear, cancer sucks. I had the Robotic surgery in feb of 2011, it has left me hammered. Your cancer sounds like there are other treatment methods available. I had the suregery due to the cancer that I have. I was at stage T2C and all of my samples came back between 40 to 60 percent cancer. There were 18 samples taken. Surgery was the best for me. If you can treat your cancer with other methods it might be a better choice. Surgery is rough comming back from. At least on my end. Some people come right back and have no problems, others have problems. Good Luck in your research.

Kurt

Gmaster414's picture
Gmaster414
Posts: 6
Joined: Jun 2012

Hey guys, I did look into the HIFU treatment and the CyberKnife treatment. The HIFU way is extremely costly, considering only a very few insurance providers cover this type of treatment, plus there is the cost of travel. The out-of-pocket expense is too pricey for a single guy like me.

I also looked into the CyberKnife treatment. My inquiry led to the radiation oncologist I very first spoke to, to give me a call explaining that this high dosage of radiation over a short period of time is not as durable, and is not a proper treatment for a man my age. He says it is considered experimental for someone my age. And so I approached my urologist about this and he gave me a similar explanation, and added that the long term effect of such high radiation within my body is not very conclusive, as far as the effect the lingering radiation can have on surrounding organs and healthy tissue.

I tend to agree. My dad had 2 rounds, because after the first round his PSA went back up a few years later, of standard external radiation for his prostate cancer within the last 10 years, and now his bladder is not functioning properly. He has a suprapubic catheter, which was surgically inserted to his bladder, since he cannot tell when his bladder is full. He was in the hospital several months ago because he was not completely voiding out his bladder, causing infection and wreaked havoc with many of his vital functions.

As I've stated before, none of the treatment options sound very appealing to me, but my urologist and the radiation oncologist believes that at my age, I should recover fine and not have any extreme after affects associated with surgery. Between the the urologist, the radiation oncologist, and a general oncologist, I've spoken with, they all suggest I do not pursue active surveillance at this point. Being single at 47 and knowing the risks involved in most all the treatments is not a good feeling, but something I have to face, or I could let it go and let the cancer win. I will not go out like that.

My urologist says my prostate is small and should be easy to work around. At this point I feel I've done some good research. I am feeling quite overwhelmed and freaked out by the whole diagnosis, especially after some of the different stories I've read about concerning the end result of all different forms of treatment. Not all are bad, but I am at the point where I feel I have to put my trust in someone. Someone who has more experience in this than me and go with it. Otherwise I would be forever, or as long as I'd be around, choosing the best decision on how to proceed with ridding my body of this abominable disease. I know different treatments are better for different people, and it is their personal choice about how they want to be treated. I am always open to listening to other points of view, because information gives us the power to make better decisions.

-G

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

Gmaster,

Frankly, i think you've been given some bad advice regarding the CyberKnife option. There's a reason it uses a rather high radiation dose and that's because of something known as the alpha/beta ratio which has to do with how many cancer cells are dividing at any one time. Prostate cancer is particularly susceptible to the high radiation dosages. The CyberKnife system mitigates the risk through the most precise tracking system available. Three or four tiny gold fiducial markers are placed inside your prostate prior to treatment and the system tracks your prostate movement in real time and adjusts accordingly. The prescribed dosage is delivered with sub millimeter accuracy and it is contained completely within the prostate. There is no high levels of radiation delivered to surrounding organs or tissue. This is because the beams come in from dozens of different angles and it only where they converge that the high dose is delivered.

Before you decide on something I suggest you talk to a radiologist that actually uses the CK system. There is also a website sponsored by the manufacturer (Accuray) at www.cyberknife.com that is moderated by physicians using CK. They are very quick to respond to questions.

I know its a tough decision and that eventually you do have to trust someone. The frustrating part of all this is that so many of these so-called experts will provide diametrically opposed opinions. I have never heard that CK is considered "experimental" for someone your age but any treatment for someone your age is going to be a question since you have such a long life span in front of you.

Best of luck and I hope you keep researching before you zoom in on something.

K

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

With your gleason 6 you could qualify for a clinical trial HIFU. I found a urologist in central Florida who did the procedure. They would not do me because my gleason was 7. Also your psa should be<10. I opted for davinci & when that didn't get it all... IMRT. I have been 0 PSA for over 2 years now. Side effects have been tolerable. As you should know, PC is usually slow growing so you should have plenty of time to find the treatment that fits or do active surveilance. And being such a young man, checking in at the sperm bank would be a good idea if decide on treatment. I wish you the best in your journey.
George

robert1
Posts: 82
Joined: Apr 2011

Hello GMaster:

I am sorry for your troubles. In your particular situation, which is significantly better than mine was, raditaion is very unlkely to cause short or longer-term incontenience. I have heard your father's story 3 times now and cringe each time. At the same time, this side effect is unlikley. This was one of my greatest fears...especially with radical surgery.

At the same time, your studies will likley reveal that Brachytherapy, IMRT/GRT and the combination of both produces superior long-term results (5-10-15-20 years) with a relatively low incidence of side effects. This method is not as new as CyberKnife or Proton Beam Therapy but still offers superior long term cure rates. There is limited long-term data on Proton as it has not been documented well enough and has not yet been around for a couple of decades. I have seen no 10 year CyberKnife studies. I do not think it has been around that long.

In any event you are young and have more to lose in terms of long-term cure rate, urinary issues and ED, so keep doing your homework. You have lots of years ahead of you. Many surgery patients swear by it, but this is also where the worst stories are. Whatever your choice, try to find a doctor who is very experienced (1000 procedures or more).

Good luck!

hopeful and opt...
Posts: 1480
Joined: Apr 2009

It is very important to have a second opinion of the pathology of your biopsy by a world class expert so that you are not under or over treated.

I am treated for "active surveillance with delayed treatment if necessary". There is a man who is 35 who is also treated where I am.

Studies have shown that treatment options that were available at diagnosis are still available for treatment if monitoring indicates treatment is necessary.

click my name to see what i have been doing , and various studies about active surveillance and diagnosis tests

best

starr15
Posts: 31
Joined: Oct 2011

Not quite clear on biopsy results except gleason 6 .
How many cores were positive, what was their location, and what percent of the positive cores was cancer?

hunter49
Posts: 205
Joined: Oct 2011

Hey There G
I spoke to my friend at Hopkins yesterday on yor case. He works directly with Epstien, Partin, Walsh and all the other BSD's in prostate cancer research and treatment. He treated Milken and is a PHD, MD and guided me through my journey. He is not a big fan of cyber knife because he feels it is being marketed wrong and is not successful with what might be more aggressive disease. However, in your case he said you would possibly be a good canidate for that or active survailence. They have a clinic that will review your case and slides where you go there and meet with their top people. I recomend you look at it before making your journey. I chose surgery but I was a 3+4 with high volume. One thing to remember they changed they volume is calculated and not all pathology follow the method yet. Good luck

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