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hifu trials in US

Ralphie62
Posts: 47
Joined: Feb 2010

HI!!! I called today to check on the HIFU trials in the US....is anyone participating??? or know anyone in the trials?? Thanks, Ralphie

bdhilton
Posts: 755
Joined: Jan 2010

I do not remember reading them but you should post Staging, PSA, etc...along with his age so you can get more relevant advise on treatment types...I went around the world and studied every treatment before deciding and decided based on what was best for me…best of luck

HIFUgal
Posts: 58
Joined: Sep 2009

Just don't get lead astray by a doctor selling his wares. There are doctors who say both radiation and surgery will be retired once HIFU is let out of the closet (advanced stages can be treated with HIFU first then HT). So, make sure you call an HIFU expert before you believe what a surgeon tells you. There are restrictions in the trials but I don't know what they are with treatment out of the country.

call 888-874-4384 for a HIFU expert

bdhilton
Posts: 755
Joined: Jan 2010

I have said this once before and I will again. It really seems that you are “advertising” for these doctors. I and I am sure others find you tactics offensive to folks like me that have made our treatment decisions or are in process of making decisions and read your one sided posts about HIFU...

Ralphie62
Posts: 47
Joined: Feb 2010

We met with Ralphie's urologist today for the big talk. Happily, there were no big surprises. He is a 62 yr old T1c, gleeson 3+3=6, psa 4.78, no capsule involvement. He is measuring 40 grams, though. This is the cutoff for clinical trials...i talked to Dawn, who is recruiting for the sonablate arms, and she said we could pursue any natural supplements, etc to maintain or decrease size. our doctor said that there can be a 10% discrepancy in u/s. the bottom line is, if we get to trial and don't "measure up" or down, as it may be, we just can't be treated. Does anyone know how to shrink a prostate??? We don't want to be sent home.I emailed Dawn about getting a TURP...it's not listed as a clinical exclusion, but haven't heard back. I was reading an article in a medical journal re Dr Scionti and his use of hifu..at the time he had reported less than 1% incontinence and impotency rates..he was over 400 cases:)I have to hand it to our doctor today. He is a great guy!...he went over all the options, was pretty objective, and brought up HIFU briefly, but was a little sorry when he realized how interested i was...he did say that the trials would be an Ok idea, and that he had sent several people to Canada for treatment, with only 1 person having problems (with strictures)...FYI. we are also looking into proton beam..fla would be closest for us. Our Doctor really wasn't into that, brushed it off as not covered by insurance and very expensive..They are in clinical trials now in Fla for duration time of proton beam therapy, but i don't know about recruitment.i'll keep you posted.........ralphie's wife

bdhilton
Posts: 755
Joined: Jan 2010

You are blessed; your clinical staging places you with lots of options. What hospital is your Urologist out of in Atlanta? My urologist was positive about HIFU but not for me… You are also the perfect surgery candidate as well (if you are in good health)… Lots of decisions to make and I pray that you make the best one for you and you alone…

Ralphie62
Posts: 47
Joined: Feb 2010

Yes, we are blessed indeed, and are giving lots of thanks for today...we are also very thankful for all of you and the csn site. It has really been a rock for us this week while we were waiting for our consult. I saw the post on how do you handle the stress?? well i pray, and then i go here. (sometimes, i cry, and pray, and come here....not always in that order)everyone has a different approach, oppinion, choice they make...but they all come here for support, or to vent, or help someone else. i think all the posts are given in a positive manner, with good intentions........i'm going to keep coming here, and keep praying.............:)

bdhilton
Posts: 755
Joined: Jan 2010

As far as a second opinion, I would see any urologist at Emory, Northside or St Joe that is "Board Certified" for a second opinion (I do not know your doctor but it sounds like you like and trust him and that is good).

As far as seeing any surgeon (HIFU, radiologist, Proton, etc…) I would assume they might be bias to their profession but you have got to remember that they totally believe in what they do (just like you will when you choose your treatment type) and if they do not see their treatment as a good fit (if they are ethical in my opinion) they would not recommend it to you…

I believe you inquired about a good robotic surgeon and I suggested Dr Shah (very experienced-goggle him and see him on CNN video a few years back doing this procedure) out of St Joe + the Director of Robotics at St. Joe…I understand that Dr Miller out of Northside is excellent…there are many excellent surgeons, radiologist, etc.. out of Atlanta and I believe that most would agree here that no matter what treatment you end up selected make sure you get someone with experience and excellent stats/results…

As far as an oncologist, my urologist is one plus a surgeon (all three board certified)… Best of luck in your process but it sounds positive (from my perspective as far as cancer being positive :-)) with your husband clinical staging…very blessed)

Ralphie62
Posts: 47
Joined: Feb 2010

Our urologist is Dr Emerson, out of Kennestone. Our PCP sent us there, and he's a great guy! Do you have a good uro or uro/onc?? We might like to talk to someone else, and get their oppinion on options....also, did anyone go in to see a particular surgeon for a consult?? we were interested in Dr Shah at StJo's, but i wondered if it would be a push for surgery or a good objective discussion?? we don't have an oncologist...does everyone have one?? should everyone have one??

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Not necessary really. Unless you are considering using radiation or some form of for eliminating the cancer. I went to a reputable oncologist locally and he told me to get it taken out and come back if any was left behind. Once you use radiation surgery is very rarely an option left if the radiation does not get it all. Hopefully you will never need an Oncologist! Best wishes for a decision that cures!

Randy in Indy

my stats:
52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
da Vinci 12/29/09 - Dr. Hollensbee & Scott
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

HIFUgal
Posts: 58
Joined: Sep 2009

bdhilton,

I don't know why you are so mean to me! You know I am not advertising, I don't accuse you of anything, I am a wife whose husband had HIFU, and several friends have too, and no one has had any problems, HIFU will be the future for prostate cancer treatment.

You've never said why you aren't a candidate for HIFU, and I've never asked, but I just read your profile and there's no reason why you can't get HIFU, unless it's because of money. I relate to you, I've had two family members die from cancer in the last couple years, and so I want to share what I know about HIFU, as doctors won't tell men....when they do I'll leave this forum, with glee!

I just want to help, please try to be nice.

I wish I knew of a sure fire way to reduce the gland size...I'll be looking around.

bdhilton
Posts: 755
Joined: Jan 2010

I am sure we all agree that a diagnosed of cancer is a life changing experience and some of us will have less issues and complications than others.

Your constant chatter of HIFU as the next best thing since “sliced bread” is really inexcusable…are you going to take the moral and financial responsibility to these families and individuals for issues if they choice what “worked” for your husband if they experience the worse case by having HIFU instead f surgery or radiation, Proton Beam, etc? Be careful what you preach…

Money was not the issue why I did not choose HIFU…My decision is a personally one and I will leave it at that

HIFUgal
Posts: 58
Joined: Sep 2009

You know what, bdhilton, I live in fear of someone having a bad experience that I sent. I would feel quite responsible and downright awful.

So far, everyone is so thrilled that it spurs me on, and I've sent in quite a few. I've read of guys who had troubles, but they had treatment a long time ago by inexperienced doctors. Everything takes time to learn, to gain experience.

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

Dr. Scott Miller at Northside Hospital was my doc. He's done over 1,200 DaVinci robotic assisted surgeries but will discuss all options with you and not just push his.
He takes his time with each patient, so if you have an appointment time, just be patient...he's very detailed with everyone and will take all the time you feel is necessary. He doesn't rush you out the door.

Good luck.

bdhilton
Posts: 755
Joined: Jan 2010

My consultations (several) were all schedule at the end of the day where I had the undivided attention of the urologist/surgeon/radiologist …I even had a couple of single malts during one of my consultations …Point is that any consultations you should have the undivided attention of the professional you are taking too….well at least in my opinion…hey this is serious stuff we are dealing with here…

best to all

HIFUgal
Posts: 58
Joined: Sep 2009

We talked to not only the nurses at International HIFU regarding high intensity focused ultrasound prior to his treatment, but we talked for a long time to Dr. Scionti, he was completely honest, and told us to phone back anytime we had a question. I also talked to three doctors in Europe, one whom is a friend, all were very supportative of HIFU. While the urologist we have here wouldn't say anything negative, except it hasn't been proven long term, he tried to scare us making it sound like HIFU was given in someone's garage in Mexico. Then we got there and experienced a top notch professional setting and treatment.

Dr. Scionti stressed that I should call him - day or night on his cell phone, anytime at all - if I had any questions - no matter how stupid they might seem. But I never did, as it was totally painfree without any problems. Dr. Scionti and I emailed back and forth, he demands an email every three days for a few months. After a month there was nothing to say except hi.

While I may sound like I am advertising for him, he is my only experience with HIFU, except I did meet Dr. Garcia and he was a doll. There were about 5 men in white coats before the treatment all with a look of total confidence, I slept like a baby while waiting for my husband to come out. HIFU is a serious real treatment, I know 7 guys in Europe who were treated back in 2002 - 2204 all are great and cancer free. I also recommended Dr. Uchinda to the guy who lives in Japan as I've read a lot of good reports on him, and he is in Japan.

Even if the cancer returns I feel very happy that it bought us time without any side effects, every day is important. And cancer can return with any treatment that you chose. Someday HIFU will be the choice for all men....when they really learn about it, instead of being scared off because of $$, money that your urologist will lose if you chose HIFU, or money that you have to spend.

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

Do know where I can find follow-up data on men who have had the HIFU procedure?
Regards,
George

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Good one!

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

She is now posting on www.dailystrength.org as HIFUisKing. She told me she's been banned from this forum. Maria

hopeful and opt...
Posts: 1292
Joined: Apr 2009

How many cores were taken in you biopsy.....How many were positive? What was the involvement of the positive cores? What is your age?

Ira

P.S. HIFU is considered investigational in the united states. It has not been federally approved as are other treatment options.

HIFUgal
Posts: 58
Joined: Sep 2009

deleted

Ralphie62
Posts: 47
Joined: Feb 2010

Ralphie is a very young 62.... i have his chart on my desk, but will post the stats for you tomorrow.....we welcome any thoughts or ideas. How about you Ira?? What thoughts are you having?? I haven't looked at your stats...ralphie is in the recliner reading "You can Beat prostate cancer" :) Ralphie's wife

hopeful and opt...
Posts: 1292
Joined: Apr 2009

I glad that Ralphie is a very young 62.........I used to be young......now I feel young on some days.
Ira
Active Surveillance at UCLA
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Reaching one year aniversity of diagnosis

Ralphie62
Posts: 47
Joined: Feb 2010

So, we had 12 cores on biopsy. Right apex pos less than 5%, Left apex pos x2 10%, Left mid pos 20%.....so pos in 4 out of 12 (we really don't understand about the core results exactly, our doctor really didn't want to get into the path)......could you please tell me how you arranged to have your 2nd opinion on the path?? Can you explain the aureon molecular test?? is that how they eval your progression status??? It's great that you can be on active surveillance. i read a study on ten year A.S....that outcomes were not changed, as long as action was taken when change in stats occurred...........could i ask how old you are?? ralphie's wife

hopeful and opt...
Posts: 1292
Joined: Apr 2009

simply contact your doctors office, have them send the parrifin block, the biopsy results to an expert in the field so that you re not under or over treated; johns hopkins is a good option--it is generally covered my medical insurance.

There are some guidelines for active surveillance, you are on the cusp. , you need to explore this.....look up active surveillance on the internet....geographically where are you located- try to find a teaching hospital near where you live that has a program......one great hospital that I have heard of is UC San Francisco.

The best test that I have taken which really shows were you stand is the MRI with a Spectrosopy.......(the spectoscopy is considered investigational and you have to pay extra for this, but it makes the results more accurate.........(if cost is a concern, look into a clinical trial)0

The molecular test---a new test that mthematically compares the results from molecular analysis of your parrifin blook and other variables from with an analysis of about a 1000 men who have had radical prostetecmy, 8 years in the future, and shows the likelyhood of the cancer progressing. look up aureon on the computer and contact the company which is in yonker, NY

Ira

gwc
Posts: 8
Joined: Feb 2010

Are you doing any treatment
I am 51 had psa 5-5 1 year ago mine has gone down each time now 2.5
gleason 3+3=6 1 or 12 lobes had cancer. Not sure what I should do should
I just keep watch and waiting.

pcolin71
Posts: 10
Joined: Feb 2010

what did u do to lower gleason?

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

There was a trial at Indiana University - Simon Cancer Center led by Dr. Michael Koch. He told me that he cancelled the trial before completion. You may wish to contact him for more information.

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