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to 'the wife'

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

Hi, I do hope that your husbands HIFU goes very well, and I hope that you will document your experiences on this board. I wish you all the very best.
We heard just too much controversy to be comfortable, and of course the exorbitant price (for us) was way too much.
I do have a point to share with you. Here's what you have posted:

"I don’t like it when people talk about someone without knowing both sides, this is a respected surgeon who wants to honor his Hippocratic Oath by treating men with HIFU. Posted by the wife, on April 3, 2010 - 9:27am"
and
"Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Posted by the wife, April 2, 2010 - 6:56pm"

Aren't you treating Randy in the very same manner that you accuse us of treating Suarez?
My husband and I have met Randy personally, find him to be a fine, upstanding person who was willing to share details of his experience with my husband, who had already decided on surgery, yet was trying to find the best surgeons in this area. We are very thankful to Randy for his support.
I am a registered nurse, and believe me, we do not take any medical decisions lightly, and I am the first to be skeptical of anyone and everything. I've read about 6 books in the past month on prostate cancer. I personally, if I were a man with my husband's Gleason score, would choose hormone therapy and waiting a little while to make a decision. However, this is my husband's choice and I support him fully in whatever avenue he chooses.
Best wishes.

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

I am just a guy...who has been fortunate enough to have made a choice with my cancer that has had a very nice outcome......so far....but.....as we all know this beast may rear its ugly head again down the road ...maybe in some other form....once a cancer patient, unfortunately, always a cancer patient because of the fear of it coming back. Mentally we have to all deal with this potential fact...perhaps one of the reasons why I chose the treatment I did because I wanted it REMOVED from my body. Also....I knew that what was removed would be analized and I would have a better more concrete understanding of my cancer and the path that would or would not be necessary down the road. As for the accusations flying around...well....I am sure when someone posts a link to an article that sheds doubt on a procedure with quotes from Doctors - even the one Dr. that is the supposed Guru, Scnoti, indicating they have no evidence of the 10-15 year efacacy of the procedure, like Kongo did it's not just hersay and accusations...but when someone says:

"Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Posted by the wife, April 2, 2010 - 6:56"

Now this...pretty funny really...especially saying it to me...Larry has it right...Robotic Surgery is anything but the..."old fashioned way to get PC" And again saying it to me...as BD put it I think the "poster child" for robotic with my results..... good try Wife...but I am not buying and doubt anyone else will either...and as to the accusation of me "selling surgery" sorry...I do not do that either...I truely want everyone to find the best choice for their particular beast..and get a CURE and the least after treatement side effects....including your husband....good luck.

randy in Indy

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

As usual, Randy's insight, drawn from personal experience, is spot on. In the 10 days since my diagnosis I have read 8 books on prostate cancer, dozens of clinical studies, scheduled appointments with five consultants, plugged data into several nomograms, and waded through hundreds of postings on various discussion boards in the hope of finding that "silver bullet" that doesn't exist. I've looked at open surgery, robotic surgery, "nerver sparing," and even a procedure that grafts nerves from your ankle to your prostate to restore sexual function. I've looked at brachy, XBRT, Cyberknife, Novalis, Tomo, and proton radiation. I've read about physical and chemical castration, hormone therapy, watchful waiting, the affect of diet on prostate cancer, acupuncture, homeopathy, and neuropathy, and full and partial cryosurgery. And yes, I've looked at HIFU too.

One thing that strikes me after trying to absorb this avalanche of information is that prostate cancer is BIG BUSINESS for drug companies and those that develop increasingly advanced procedures. Marketing hype is embedded throughout most of the literature and many of the clinical studies are financed by developers who screen their candidates based on their liklihood of success. I'm in business too, actively involved in developing marketing strategies, competitive analysis, and developing future sales forecasts as part of the strategic planning process for a very large company. I understand the need for marketing by the medical industry but if I see another online video of a youthful looking happy couple holding hands and smiling longingly at each other after they've just been briefed about the lastest "cure" for the husband's prostate cancer and then going out to play golf of shoot hoops, I think I'm gonna throw up!

I think on this board we should leave the hype behind and just concentrate on facts as we know them based on our person experience or research. Some pushing HIFU seem to push that boundary. For me, at least, if I smell a sell based on doubtful personal testimony looking out for their "sweetie," I get suspicious. Everybody naturally wants to believe that the course they choose is best for them but most of us realize that there is no single right answer to defeat the "beast" (as Randy likes to cal it) and that we all have to make our decisions based on what is right for us individually.

Each of us are forever wedded to the procedure or treatment option we choose to pursue. For many of us it may the biggest decision (gamble?) of our lives. We need a better way to sort through all the hype, lies, damn lies, urban legends, and half-truths that we are bombarded with after our diagnosis.

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

Very good post. You've been down the path we have also; exploring virtually every option out there and noting the 'hard sell'. Hubby received the news on 2/19. He is not much of an internet person, thus the reason I am here.
Have you read "The Big Scare" - its a book just out in the last 6 months written by a urologist who does cryosurgery. He worked in the VA system for years. Thus, he had no financial incentive to push surgery. Its an interesting read. He notes the efforts to sell different therapies to men who are diagnosed with 'the beast'.
Please keep us posted as you wade through this process. Best wishes!

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

I have read the Big Scare. One of the best I have read. In fact, I have a telephone consultation with Dr. Horan next week and have been corresponding with him via email. I think this one is a must read for anyone considering options.

The Big Scare: The Business of Prostate Cancer by Dr. Anthony Horan.

I downloaded the book to Kindle but it's also available in print version from Amazon.com.

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

How cool you are corresponding with Horan. That book is precisely why I really would prefer my hubby do the hormone treatment for a bit and see what happens. He is unwilling to take the gamble but Horan's logic as to the doubling time, etc of prostate cancer makes perfect sense. Hubby is scheduled for DaVinci on 4/27. In Randy's case, his decision was a very good one, if you know his story (you can look at other threads).
I will be very interested in hearing his take on your situation.
Can you tell me what your Gleason is, how many samples, etc?
My hubby only has one out of the twelve tissue samples testing positive. And that was only 5 - 10% of the sample.
I know others have had a terrible time with the hormone therapy, but I can really relate. I had endometriosis, and had to be on various hormone treatments that caused chemical menopause no less than 4 different times. It's not pleasant, but it can be borne.
Will be waiting to hear what you decide to do.

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

I'll give you an update after I talk to Dr. Horan. In my case, my Gleason was 3+3=6, 1 of 12 cores was positive for adenocarcinoma with 15% volume. Stage T1C. My biopsy PSA was 4.3 and I calculated my PSA density to be 0.092 ng/ml/cm3 based on a prostate size of 47 ml. PSA doubling time for me is 9.24 years or 0.23 ng/ml/yr.

From what I have read the hormone therapy can really be difficult to cope with on many levels but Dr. Horan points out in his book that the medication timed to the PCa doubling time of the carcinoma cells can be an effective treatment for those in early stages. He also points out that the histology of this disease is about 52 years...so if you could figure out when it actually started, it might provide insight into what course of action you might pursue.

These are intriguing options but as others have pointed out in several posts, the cancer often returns even after surgery and some forms of PCa are much more aggressive and require a more proactive treatment protocol.

I wish it was easier to figure out.

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

a short time! I have been through the marketing machine of a fortune 50 company on Park Ave where I spent 18 years in Sales with them (Colgate) and now reside in much less stressful Family Owned business also in sales. It's obvious to me you must be a marketing VP or Director with your excellent organizational skills and prose. I think you would be a perfect candidate to take on the task you mention above (finding a better way to sort through all the hype, lies, damn lies, urban legends of prostate cancer treatment) There are others on here that if we all teamed up perhaps we could make a company and create a real difference. Probably just a pipe dream but fun to think about.

Randy in Indy

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

Randy, you raise an interesting proposition. Of course we would want a non-profit organization...but it is fun (at least distracting) to think about it.

hopeful and opt...
Posts: 1450
Joined: Apr 2009

......I guess working for top companies causes prostate cancer....ira

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

Ira, I'm choking on my pomegranate juice! You may be on to something...maybe it's just working that causes it. Sure would hate to give up NYC though...it's too much fun.

steckley
Posts: 100
Joined: Aug 2009

Or maybe its because marketing and salesmen carry a cell phone in their pants pocket?

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

crotch while in the car...go figure....but...my dad had it so I think I was pre-desposed.

I knew there were others here with Marketing/sales backgrounds.

Heading off to Gatlinburg then on to Biltmore Mansion later in the week with GF, son and mother - should be a blast

Later everyone!

Randy in Indy....OH and GO BULLDOGS!!!!! PULL OFF THE ONE IN A MILLION AND BEAT THE DUKIES! Even though Coach K is a understudy of the master coach from my almamater.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Hey Randy...My dad also had prostate cancer.

Gatlinburg is about 2 hours from where I live. When will you be there. Possibly could work it out to drive up and meet u if interested and if timing works

Let me know.
Larry

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

We are doing all kinds of things here... first time here for me...Saw the Dixie Stampede tonight. Going to Hoot n Holler, and Country Tonight, the Aquarium then a ride through the smokies to the Biltmore estate on Thursday.

When could you come up, or over or down?

Randy

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Sent u private email.
Larry

hopeful and opt...
Posts: 1450
Joined: Apr 2009

game........they were both winners..........Ira

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

All seem like very good kids!

bdhilton
Posts: 759
Joined: Jan 2010

I think you are on to something here...There seems to be a lot of us :-)

the.wife
Posts: 20
Joined: Oct 2009

..edited...error..

the.wife
Posts: 20
Joined: Oct 2009

In answer to your original question Mrshisname,

There is a huge difference, Dr. Suarez is a doctor, who treats men for the worst disease, and wants to end the suffering so badly he is bucking the establishment.

Randy, is a boy, selling surgery is his spare time, he won't lose his reputation. We don't even know his last name!!! Randy had good luck with his choice, but there are millions of men who haven't had such luck, I know a few. The odds are against you with surgery, unless you are young like Randy.

I won't be advising anyone to go in any direction, I'll just state my facts after my husband has been treated.

I haven't read the thread, only your post. But surely after you posted this you knew the answer.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

the.wife.....It is my understanding the purpose of this forum is to lend support. I do not know why you keep making critical comments about Randy. He is a real person, He has posted his picture (which you have not) he readily gives his stat's pre and post surgery, some members have met with him in person. I've exchanged emails with him and plan to meet him in the future next time I am up in Indiana.

I've not seen anyone directly 'attack' your husband as you do Randy. In fact several on the forum have expressed that they hope no matter what his treatment is that he will have success.

I do not believe that Randy is selling surgery. He is only stating as thousands others have...their experience. Lets please respect others as we have tried to respect you on your husband turning this time of critical illness that you face.

Larry

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Larry,

I have stayed out of this one just because as you stated we are here to support one another. I could not agree with you more in your comments above. We are all here to help one another and to offer/share our experiences. We all know there are many different treatment options out there and the choices we make are personal depending upon our situations. Like both you and Randy, I opted for surgery. Like both of you I am not "selling" surgery as "the wife" would believe Randy is doing. I thank god every day that I found this forum and found folks like you, Randy, Sonny, Marc, Nick, I could go on forever.

My only message to "the wife" is that I wish your husband well and I would hope that you would take our statements, thoughts, prayers, in the way they are intended (as a means of support. We have all made our choices for treatment and now must live with the results/side effects of those treatments. All we can do is try to help one another through whatever rough spots we may encounter along the way. Please tell your husband that we are there for him if he ever needs to talk to anyone.

God Bless,

Joe

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

After reading your comments, I will be praying especially hard for you and your husband. I will not comment further. Best wishes.

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

is obviously the correct response here!

To all: Life is short....work hard....pray hard....help others....and have as much fun as you can all along the way as you really only get to do this trip one time...at least that's what I believe.

To the wife: Looking forward to the report after your husbands treatment...

If you really want my last name that is not a problem...just send me an email with yours and a picture to:

randy_in_indy@sbcglobal.net

Randy

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

We should embrace all talk on the site...there is NO perfect treatment for everyone. I am now 55, one year post surgery.. Do I regret my decision...sometimes...the incontinence is minimal but ever present.... ED was never a problem at first, now I suffer the "Bent Penis" I assume from scar tissue... since both nerve bundles were spared... but I am alive...my PSA is still less than 0.01, I get to watch the grandkids grow up...I still go to Hawaii several times per year to dive, etc...I get to spend all my remaining days with my wife... I look back on what was...regrets, sure....do it again...absolutely

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

Didn't know you are a diver too. Can I get your email address so I can ask about some dive destinations out your way?

Thanks,
George

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

I am going on a live-a-board boat in Nassau Bahamas exploring some of the over 200 Exuma Cays, Islands in Feb 2011....Check it out http://www.aquacatcruises.com/ I have dove three times in Cozumel, all the channel islands off LA coast...Next destination after feb 2011 may be Roatan. Where have you dove George?

Randy in Indy

bdhilton
Posts: 759
Joined: Jan 2010

I truely hope all is well with your husband but you sound like HIFUgal...sorry

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

I can't help it...even if it isn't true...it's STILL funny.

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