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TFT 6 (NOW 7) years later an update

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Posted 3/13/2014 11:22 AM (GMT -8)
As you all argue about 20th century treatments it's time to update my 21st century treatment results. It's been near 6 years after now, as I just returned from my annual urological checkup. All is well in fact my low PSA has even gone down a little. Below are my results the last three years:
2012 - .22
2013 - .32
2014 - .13

Talking to my urologist Dr Barqawi (the director of research at University of Colorado Medical Center) states that he has now done over 700 TFT procedures with a success rate in the high 90s percent. I asked why it isn't more wide spread as a treatment option and he stated "There's not enough money in it". A far less invasive treatment with a high success rate. A targeted treatment with few to no side effects. A treatment between radical procedures and AS can be had primarily only in Denver. That alone shows the absurdity of American healthcare. If you can't make big bucks the hell with it. Oh well I was extremely fortunate by time and geography to have it available to me. As I've stated before me and another who have had TFT here are the two most successfully treated men on this site the last 6+ years. I still have a functioning prostate, no incontinence, no ED the only effect is about a 60% loss of ejaculant. I admit if I was diagnosed today( AS wasn't really much of an option back in 2007) I'd likely choose AS but I have no regrets at all choosing TFT. Especially when many of the past know it alls here thought I was a fool risking my life. Well it's 6 years later.. is all I can say. My doctor told me l'll die of something some day but it's very unlikely PCa will be the cause. Oh and btw if my PCa did come back I still have all those ancient treatments available. But i still urge those with low risk Pca to consider AS for as time goes by not only may TFT become more widely available they are also working on other treatments and future drugs at the Anschutz Cancer Center here.

For those who may want to check on a 21st century treatment for lower risk PCa here's the link. They've changed the site's name and description to Precision Prostate Cancer Treatment.

http://www.precisionprostatecare.com/

Now you can all go back and argue about old tarnished 1990s gold standards of care. But to me that's so outdated for those with lower risk PCa. For those g6 - g7 I'd rush to Denver and see if its an option. For you must undergo a saturation biopsy to pass and qualify.

Now I'll go again, I grew tired of all the old never ending arguments here. But I felt obligated to post my annual TFT results. Now some of you can all go back to scaring newbies with 10-15 year old AS guidelines.

Post Edited (Ziggy9) : 3/28/2015 3:41:29 PM (GMT-6)

Posted 3/13/2014 11:44 AM (GMT -8)
That's great, Ziggy. The 2013 number looks like an error.

How much did the treatment cost?

Don't see much fear mongering around here. On those rare occasions someone does try to scare people, probably innocently, it's usually over side effects of various treatments, not over 15 year old AS guidelines which I think would be WW guidelines anyway.

Sorry about the super bowl :)
Posted 3/13/2014 12:03 PM (GMT -8)
Very interesting. As newly diagnosed with very low risk PCa (at least according to a 10 core biopsy), and considering AS, this looks like it deserves a closer look. It seems to address some of the fears I have about basing an AS decision on PSA tests and biopsy results.

Thanks for the info and the link.
Posted 3/13/2014 12:27 PM (GMT -8)
No the 2013 PSA is correct it was only a tenth of a point uptick. Neither I or my doctor was concerned about it. I really forgot the total cost I mean I looked at it once years ago it was much lower than surgery I remember. My copay was back in 2008 $175 per both procedures. In fact the only objection early on by my insurance was the cost of the 3D saturation biopsy, never the cost of the TFT. The key to this procedure is to best locate the cancer. That is done by a saturation biopsy using a brachytherapy grid. I'll put up the link of having one done it's a little bloody to watch. Then that core info is added to a 3D computer program to best locate the location and amount of tumor/s. I last heard it was 57% who passed to go on to TFT . Those have more cancer than expected are then recommended the customary treatments. Thus it's cheap once you locate the area, needles are inserted to freeze the tumor and other to warm the prostate minimizing adjacent damage. There's hope for the procedure to spread for the insurance companies will like it in time it's those with million dollar DaVincis to pay off that don't.

https://www.youtube.com/watch?v=6hLf23U-lag

Those who thought I was a fool for volunteering for TFT was back in 2007 2008, although a few are still here.

Yes you're right it's often side effects and lower quality of life is a big concern. For some like me more than others. Of course in all the time I've been here I've seen by far most side effects come from surgery. But my old pet peeve is the rationalization that SRT is THE option after failed radical surgery, with few ever mentioning it only has a 30% success rate. I won't even bring up there are other but less done treatments available for those with failed radical surgery.

Ok I may have exaggerated the term 15 year old guidelines for AS. But when I still see posts here claiming guidelines for AS for those only 65 and older I have to object. This is a much over treated cancer. I came to that conclusion early on back in 2008. Thank god I live by a cancer research center whose Doctors suspected that early on. The fact that overtime I have seen Tony here and others come over to my side illustrates the validity of the massive over treatment paranoia that has ruled for the last 20 years. But of course I have to say this is about lower risks PCa. For one of the big problems are that under the PCa umbrella there and a number of different types of PCa. With only a minority being those that are lethal and aggressive. Now with those of course treatment should be done stat!

Elway has been improving the team. Have you noticed what the Broncos have done with free agency? Seriously Elway has a business degree from Stanford and has transformed the organization in record time after the McDaniels debacle. May Josh rot in hell or New England. Of course talking Manning into signing helped a little <seg>

Post Edited (Ziggy9) : 3/13/2014 2:42:29 PM (GMT-6)

Posted 3/13/2014 12:34 PM (GMT -8)

GeetarMan said...
Very interesting. As newly diagnosed with very low risk PCa (at least according to a 10 core biopsy), and considering AS, this looks like it deserves a closer look. It seems to address some of the fears I have about basing an AS decision on PSA tests and biopsy results.

Thanks for the info and the link.

Yeah geetarman. I noticed your thread a few days ago and if you lived closer I would've sent the link. But I wouldn't fear AS with your stats . Like I said in time better treatments drugs etc are coming down. You can take your time and live a normal life, and maybe just pop a few pills in a few years as treatment. Like I said above back in 2007 few talked of AS or WW. If I was diagnosed in 2014 I 'd do AS. But my TFT was no big deal really. I advanced the procedure by volunteering. The loss of ejacualant is no big deal especially at my age now. And my worse Pca treatment experience was catheters for a total of 5 days.

I was diagnosed Nov. 2007 this was broadcast Dec 2007. Talk about good timing. Dr Crawford is one of the top 5/10 urologists in the USA. His director of research who does all the treatments is my doctor.

https://www.youtube.com/watch?v=SygJpKFZ_OI

Post Edited (Ziggy9) : 3/13/2014 4:01:01 PM (GMT-6)

Posted 3/13/2014 1:12 PM (GMT -8)
http://www.ncbi.nlm.nih.gov/pubmed/19357510

Prostate cancer screening has shifted the diagnosis of prostate cancer to lower grade, organ confined disease. Radical prostatectomy or radiation therapy has been shown to be overtreatment in 30% of patients. In this review, we will discuss targeted focal therapy (TFT) using the modalities of cryotherapy or high intensity focused ultrasound as an alternate treatment for low-risk prostate cancers.
Posted 3/13/2014 2:50 PM (GMT -8)
Hi Ziggy,

 Congratulations on your treatment choice and outcome.

 I'm sorry others in the past were not supportive of you choice in the past I've been here just less than a year and have only seen support for everybody's choice. That being said I've seen links to studies that seem to conflict and differing opinions but always support for members that have made their choice. I also can't recall anyone using fear to advance their own views to newbies.

 I am also happy with my decision I'm 6 months out and my only side effect is dry orgasms (and a steam that can etch concrete). I have nothing but respect for everybody's choice, I have great respect for those that can do AS but it wasn't for me. Treatment options are a very personal decision and should always be supported.

Wishing you good health in future.

carl     

Posted 3/13/2014 5:04 PM (GMT -8)
So is Aurora the only place to get this done? Travel is not out of the question for me. I want to make the best decision and money or distance won't prevent me from doing that. I've got a friend in Denver I've been itching to visit!

Denver is a short flight from Minneapolis!
Posted 3/13/2014 7:12 PM (GMT -8)
Ziggy9, congratulations on your treatment results!  It had to be tough choosing TFT 6 years ago with little support.  GeetarMan, i f money and distance is not an issue, there are several other TFT options you could consider.   Here’s a list of 29 treatment options for PCa put together by dave205 on Inspire.com. http://www.inspire.com/groups/us-too-prostate-cancer/discussion/27-prostate-cancer-treatment-choices/?reply_sort=asc&page=last#replies   Target Laser Focal Therapy is viewed by some to be more precise than Cryo Focal Therapy because it uses MRI instead of saturation biopsy to locate the tumor(s).   Here’s a long discussion thread on Laser Therapy from Inspire.com ... one guy had this treatment 5 years ago with no SE since.  https://www.inspire.com/groups/us-too-prostate-cancer/discussion/focal-laser-ablation-patients/   But as Ziggy9 suggested, you’ll be fine doing AS for a long time after your initial diagnosis is confirmed.   Under sound AS programs, doctors do not make decisions based only on PSA tests and biopsy results.   They also use imaging tools such as 3T MRI (similar to using colonoscopy for colon cancer or mammogram for breast cancer) and other biomarker tests if necessary.
Posted 3/13/2014 7:47 PM (GMT -8)
ziggy,

great report, brother.

not that you need to vindicate yourself, but you have by default.

you came here just a few months before me, and I remember how many reacted to your "different" treatment. but you held your ground, did things your way, and the proof is in the pudding.

glad to see you are such an advocate of AS, as I am for those that qualify. one day, we will look back at these "barbaric" times, one where so many invasive treatments were done, when in many cases, AS would have been the appropriate treatment.

In my "world" of slowing down overtreatment, I keep coming back to the same plan or thought, for those men who have minimal low grade PC, AS should be their first line of "treatment", and if an invasive treatment isn't needed or warranted, it shouldn't be covered by insurance. I know many disagree with me on this point, but it does provide a way to slow down invasive and expensive treatments that may be proven not to have been needed.

As you said, trouble with salvage radiation for failed surgery, is that the odds of the remaining cancer being in the prostate bed - thus making SRT effective - is low on a good day. So its hardly any consolation to those that go that route. When in actuality, they then subject themselves to still another invasive treatment (radiation), and take on a whole new set of risks and potential side effects, often with little positive results long run.

Of course there are plenty of men that need immediate primary treatments, including both surgery and radiation methods, but these invasive treatments should be reserved for those meeting a stricter criteria.

Good luck ahead, you have done well for yourself. If you remember, I was never one that opposed what you were doing, you had my support then, you have it now.

David in SC
Posted 3/13/2014 7:51 PM (GMT -8)

GeetarMan said...
So is Aurora the only place to get this done? Travel is not out of the question for me. I want to make the best decision and money or distance won't prevent me from doing that. I've got a friend in Denver I've been itching to visit!

Denver is a short flight from Minneapolis!

I've heard of a few doctors both in FL and CA who are said to be doing TFT but I would stay with the staff in Denver who originated and do it in a major hospital and are under the respected Anschutz Cancer Center. Before I'd come here I'd do what I did was contact my doctor on his site about your dx, He'll likely ask for your copy of your biopsy and all past PSA results you may have. Then you can go on from there, If you elect TFT it will be done only after qualifying with a 3D mapping biopsy. Of course for that a many needles sedation is required. In a post above laser TFT is mentioned, my doctor was the first to do that although when I had my TFT done it was cryo only. I'm not sure what options he offers now, I should ask next time. Below is his site link and also another illustrating he's not your typical HMO urologist.

Of course it's possible after a saturation biopsy that too much cancer may be found to do TFT. But as you said you have a friend to visit and you can always get a legal buzz here if nothing else. Or you can just do AS for awhile.

http://alprostate.com/
http://alprostate.com/yahoo_site_admin/assets/docs/laser_prostate_surgery.7155943.pdf

Post Edited (Ziggy9) : 3/14/2014 5:07:06 PM (GMT-6)

Posted 3/13/2014 8:03 PM (GMT -8)
Hi Dave (purg) I only look in here rarely these days but I have read some of your threads about what you are going through. As I've said before if anyone deserves a break it's you. But few have come your way. Our PCa's has proven that they can't be more different. When I posted that 5 days of catheters I thought of you once again as I did when I posted that I think on my 3rd or 4th TFT anniversary update.

I'm not sure about not insuring that. I've always been on the renaming low risk g-6 cancer instead for the C word panics too many. I know we disagree on that but I've always been an AS advocate. Yeah the little mentioned 30% SRT success rate has always bothered me when so many use that for radical surgery over less invasive less side effect options. I admit I may be the only guy who arrived here favoring surgery only to have the **** scared out of me by posts here. I look back greatfully for that now.

Post Edited (Ziggy9) : 3/13/2014 10:07:43 PM (GMT-6)

Posted 3/13/2014 8:04 PM (GMT -8)
I've sent an email to the center in Aurora for them to contact me. I like what they say about how they can do a better job evaluating you for AS with the precision biopsy.
Posted 3/13/2014 8:12 PM (GMT -8)

GeetarMan said...
I've sent an email to the center in Aurora for them to contact me. I like what they say about how they can do a better job evaluating you for AS with the precision biopsy.

Well if you come out let me know I'll meet you for a beer and help prepare you. BTW I assume you know Aurora is next to Denver. In fact if you know the area the CU Med Center occupies the old US ARMY Fitzsimons Hospital site.
Posted 3/14/2014 3:44 AM (GMT -8)
Ziggy, it was great to get your update and learn that you are continuing to do so well. I also remember the ridicule you suffered by those who thought you were nuts not to just "get it out". Your great quality of life is vindication for your decision and I wish you well. Those of us (even the successful ones) who had 20th century treatments often forget to mention TFT as a possibility to new patients. Thanks for reminding us of that excellent option.

Jim
Posted 3/14/2014 2:57 PM (GMT -8)

Tudpock18 said...
Ziggy, it was great to get your update and learn that you are continuing to do so well. I also remember the ridicule you suffered by those who thought you were nuts not to just "get it out". Your great quality of life is vindication for your decision and I wish you well. Those of us (even the successful ones) who had 20th century treatments often forget to mention TFT as a possibility to new patients. Thanks for reminding us of that excellent option.

Jim

Hey Tud I see you're still a moderator. You have more patience than I have.

Getting back to TFT I am shocked it's not offered at more cities at this point in 2014. I think my doctor is right it's very effective, it maintains one quality of life but is cursed by it's being a low cost procedure. I mean all you need are many needles a software program, a brachytherapy grid and some argon tipped ice balls or laser and a few monitoring and heating probes. Just not enough of profit to be had. Just watch as TFT becomes more available in the EU than here soon.
Posted 4/19/2014 10:55 PM (GMT -8)
Hi, Ziggy! Good to read about your courageous decision to have TFT "those many years ago"!
I was frightened after being initially diagnosed last Autumn; only knew about radical treatments.
But thankfully God guided my googling to Mark Emberton.
All the details: See my profile for my blog address and summary.
Posted 3/28/2015 1:41 PM (GMT -8)
My 2015 update. All remains well. My last PSA Friday was .16.

Better news on the TFT treatment front as my doctor told me he's done about 400 in the last year. It appears insurance companies are liking the lower cost of this procedure. The far less invasive procedure lies between AS and radical treatments. The only problem I had with insurance way back in 2008 was the 3 D Saturation biopsy never the actual TFT. Which is basically a brachytherapy grid used to place argon gas ice balls or laser. I think they're still doing more with cryo than lasers.
Posted 3/28/2015 6:29 PM (GMT -8)
Ziggy,
I remember when you first started to post and the hard time many members gave you for your choice. I also remember how those that recommended AS were also vilified.
I' also encouraged that the advice most newcomers with low risk cancer are now getting from most members. New ideas take time to take hold, and if they are good it eventually happens.
Posted 3/29/2015 7:08 AM (GMT -8)
Ziggy: When I asked Doctor Grimm about possible treatments should LDR fail, his first response was "Cryothearapy". I remember you advising me to consider Cryo but was scared from comments made and the lack of long-term stats. I was also scared and still am that a more conventional treatment might give me a better chance against BCR due to lousy PSA kinetics.

I commend and congratulate you on your bravery and due diligence which has paid off. More than that I envy you not having to think about the SEs the rest of us have or must look forward to.
Posted 3/31/2015 10:51 AM (GMT -8)
Hey John T not many of old timers left here. I agree that we've seen the day where AS consideration is told to newbies here. Although there are still way too many who jump up on an operating table 5-6 weeks after dx. Also many when talking about AS too many still recommend 10+ year old or the most conservative guidelines they can still find. There are still too many 70+ year olds having surgery then the resulting lower QOL. My exboss was one of those who I ran into last year. Sad story even though he knew me and another TFTer he had a doctor who scared the hell out of him right to radical surgery. He was just a G-7.

I don't claim to be the most successfully treated man here now other than it's fact. But when I first realized that to be true and stated it, it was for those who thought I had a death wish or was just a fool. All of a sudden they had no response.

I have found it constant through the years those most skeptical or anti AS are those who recently had radical surgery. I'll let others draw their own conclusions for that, I have mine.

Another constant I've witnessed here through the years are those who study well their options pick radical surgery then become kind of surprised afterward when their lives for the next few weeks/months. revolve around urinating. It seems like most have always been so sure they will be one of the few continent after a few days. Too many maybe, because of the Davinci and it's small incisions don't realize the major surgery they've had. It isn't called radical for nothing.

browntrout: I don't remember advising anyone on cryo post LDR fail. All my experience was just for cryo ice balls in TFT. Although my doctor has done full cryo ablation on others who I've met and were satisfied with it. Long term stats exist primarily for surgery as current radiation be it beam or seeds are done much better now so an old comparisons really mean little when considering modern forms of them.
Posted 3/31/2015 10:55 AM (GMT -8)
Ziggy: You advised TFT pre op. I simply added Dr. Grimm's comment.
Posted 3/31/2015 6:14 PM (GMT -8)
Awesome progress Ziggy.

My dad was detected with stage 4 prostrate cancer and finished 1st chemo cycle yesterday. He is in India but I can fly him to Denver. Would you happen to know if TFT works for stage 4 cancer patients and what would be the cost?
Posted 4/1/2015 7:01 AM (GMT -8)

Sujay said...
Awesome progress Ziggy.

My dad was detected with stage 4 prostrate cancer and finished 1st chemo cycle yesterday. He is in India but I can fly him to Denver. Would you happen to know if TFT works for stage 4 cancer patients and what would be the cost?

No sorry TFT is not applicable for your dad sorry. It's for low to immediate risk early diagnosed PCa.
Posted 4/1/2015 9:11 AM (GMT -8)
Ziggy, sorry I missed your 3/38 update. That is really great news and I am really happy for you. You made a great decision and I have no issue with your ..."most successfully treated..." trophy!

Hope for many more good reports in the future.

Jim
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