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Posted 8/18/2014 9:59 PM (GMT 0)
Greetings,

I'm 52 years old living in Tampa, Florida. I had a PSA last November that was at 8.0. My MD referred me to a urologist, Dr. Mohammed Helal, who performed a 20 core Biopsy that came out negative. I had another PSA done last month and it's jump to 12.8. 4+ points in 8 months. Urologist gave me two options, another biopsy or a MRI w/wo contrast at Florida Hospital Wesley Chapel. The results of the MRI are a clinically significant prostate cancer Gleason 7 or higher. The good news is that there doesn't appear to be capsular transgression. Otherwise it is a normal size prostate at 26 grams.

I see the urologist tomorrow to go over the report and images. I'm expecting with this information they'll want to do another targeted biopsy and go from there. I'm also expecting that RP will be the first thing he suggest because that's what he does.

If anyone else is in my area and can recommend Doctors, Clinics or Hospitals that I should consider for second opinions, it would be most appreciated.

I'm reading Patrick Walsh's book Surviving Prostate Cancer but definitely see his bias towards surgery. I don't know if I'm thinking to far ahead but RP just doesn't sound right for me. I'm lucky to live close to Sarasota, Florida so I'm also looking into Dattoli Cancer Center but am kinda turn off by the marketing posts that I'm seeing on this forum, but if the treatment has work on others, I'm not going to discredit it on that aspect.

I just wanted to introduce myself and join you on what will most likely be a long distance roller coaster ride for the rest of my life.

Greetings!

 

Posted 8/18/2014 11:06 PM (GMT 0)
Hello drveasey,

Welcome to the dreaded club.. So sorry your membership has been approved.. But you've come to the right place..

So many different treatment options to choose from and please choose carefully. Visit specialists for each and make the best educated decision for you!

Others will chime in with referrals in your area. So hang tight..
Posted 8/18/2014 11:13 PM (GMT 0)
You certainly have a lot to think about. I'm not sure I've ever seen such different outcomes from a 20-core biopsy and an MRI. I'm thinking I would welcome that second targeted biopsy to confirm what the MRI seems to be showing, but I'm no expert, just a guy without a prostate.

Surgery may be a very good option, but you surely have others as well. Maybe luck will be with you and the biopsy will prove to be correct. Best of luck to you.
Posted 8/19/2014 1:02 AM (GMT 0)
Welcome aboard the roller coaster of life. Just when you thought you had gone through enough bumps in a lifetime, this happens. The good news is we all know how you feel having been there ourselves.

I never like to tell someone what treatment option to take. We all had our reasons we chose what we chose and you need to decide what is best for you.

IF you decide on surgery, you will want to pick the best that you can get who has done MANY SURGERIES. There are about a dozen "rock star" prostate cancer surgeons in the country. You are fortunate to be living in Florida because we have our own "rock star" surgeon, Dr. Vipul Patel. He works out of a Celebration Health in Celebration, FL near Disney World, which is a Florida Hospital like Wesley Chapel. Florida Hospitals are great hospitals. Celebration Health has 2 Da Vinci robots.

Dr. Patel has done over 7,000 surgeries, more than any doctor in the world. Most great surgeons have done 4.000-5,000 surgeries. There are some great ones in NY also.

Understand that there are no guarantees with any doctor. No guarantees he will get all the cancer, no guarantees you will be continent quickly, no guarantees you will not have ED after surgery. But you will want the best you can get so you have the odds in your favor.

Reading Walsh's book is a good start. Talk to several doctors with different treatment options. My wife and I asked my urologist who he would want do his surgery if he needed surgery. That was how I got Dr. Patel's name.

Whatever decision you make, a great relief comes over you at that point. You become ready to wrestle with this beast inside you and not let it win the fight.

Good luck

Bill from Florida cool
Posted 8/19/2014 1:14 AM (GMT 0)
Dattoli's marking also turns me off, but you can't knock his experience and track record as both are excellent. I've known a number of patients that visited him and all were more than satisfied with his treatments and how they were treated by him and his staff.
You should at least visit him and get his opinion as he is so close as well as opinions from surgeons like Patel ( I think he is in Fla).
Posted 8/19/2014 1:14 AM (GMT 0)
The significant increase in PSA is alarming but there may be another explanation for it other than cancer. You're not in the club just yet. I know it could be frustrating if the biopsy is negative because you might still wonder if the cancer was missed, but a targeted biopsy with multiple samples from the suspected tumor site should find it if it's there. If not, good for you. I'd say you dodged a bullet.

Good luck.
Posted 8/19/2014 2:06 AM (GMT 0)
Until you know exactly what you are dealing with, perhaps via another biopsy, its a bit premature to think of an exact primary treatment.

Makes a big difference if you are a Gleason 7, or if you are higher, and from the staging, if provided, it would help determine the best course of action.

Sounds like you are off to a good start. Now is the time for all your due diligence.

The Walsh book is still a good primer for all things PC, surgical bias or not.

Good luck, and please keep us posted of your journey as you continue forward

David
Posted 8/19/2014 2:54 AM (GMT 0)
Thank you Sirs for your replies. I didn't mention that my Grandfather died of the disease but it was just a footnote to me as he actually had early diagnosis(probably 1950's or 1960's) and still lived to a nice old age and only then succumbed because he could take no more. All I remember is my mother telling me that he took female hormones until late in life and then developed the tumor that ultimately killed him.
I should have listened more closely.
Posted 8/19/2014 3:29 AM (GMT 0)
I am in your area. I was treated by Dattoli. Regardless of their marketing, he has experience specializing in treating "only" prostate cancer, since the 80's I think. He knows how this disease thinks. Very thorough, almost to a fault.

Everyone working there was professional and experienced. You can have a no-fee over the phone consult with him, after sending your records over. (I suspect that hasn't changed)

That's what I did, prior to making my decision. I had other consults with RO's and URO's, none felt right to me for various reasons. One year out, I feel that was the best treatment I could have received, for the type of PC I had(hopefully will remain past tense)
Posted 8/19/2014 12:10 PM (GMT 0)
Thank you Fauntleroy, your experience is what I was looking for. And best of luck to you.
Posted 8/19/2014 4:52 PM (GMT 0)

I had Proton Therapy at Jacksonville. For me it was the best decision. I have good insurance and was allowed to be away from my employment for 6 weeks. I would recommend you at least give it some thought. My email address is listed and if you want to call and talk with me that would be Ok. The chronology is listed below. I live near Tampa.

Posted 8/19/2014 5:44 PM (GMT 0)
drveasy,

Your options may differ depending on whether your next MRI-targeted biopsy shows only GS7 or lower vs GS8-10.

Assuming it is GS7 or lower, my top recommendation in Tampa would be Debra Freeman at WellSpring Oncology. She is highly respected, and she has successfully treated a couple of men I know.

If it is GS8-10, you may want to talk to Constantine Mantz at 21st Century Oncology in Ft. Myers. He is using hypofractionated radiation with Tomotherapy. In that risk group, the more conventional standard of care would be IMRT with a brachy boost.
Posted 8/19/2014 10:18 PM (GMT 0)
Hi drveasey,

Like Fauntleroy, I too have recently been treated at Dattoli Cancer Center. I researched treatment options for nearly 2 years, visited the clinic and had a 45+ minute phone interview with Dr Dattoli. Then I made an appointment for a Color Doppler Ultrasound guided exam with him before deciding on treatment. I didn't feel like I was being marketed to but rather further educated on the various options available to me. I hope that this is not labeled a "marketing post" because it is not intended to be that.  I am simply happy with my decision and looking forward to posting again after my 1 year check up in October.

Posted 8/20/2014 12:42 PM (GMT 0)

Thanks for the replies. I went yesterday for follow up from MRI findings. Just as suspected they want to do a targeted biopsy with a different Ultrasound machine that's located in another office. Not sure what capabilities this machine may have but that's the next step.

My urologist didn't turn around after reviewing the MRI and said you have cancer. He said that the MRI reveals a "hotspot" and that the targeted biopsy needs to be done. He said that he has many patients walking around with PSA's >20 with benign returns on biopsy's. More roller coaster fun to follow.

Posted 10/3/2014 12:08 PM (GMT 0)
Well it's official. Targeted MR/ultrasound biopsy revealed 3+4 Gleason Right Anterior Prostate Cancer. My doctor gave me a lot of time to discuss options with his suggested course of action being RP via DaVinci surgery. He explained that they have all the treatment options available within his doctors group. He also was all for second opinions although I'm really wondering what I would gain from a second opinion. The lab results aren't refutable so the only consideration seems to be what treatment by what doctor. He was not a fan of the Dattoli Institute and counseled against that idea and his arguments seem sound. He prescribed a bone scan next so pending that outcome, I've got some decisions to make.
Posted 10/3/2014 3:05 PM (GMT 0)
Dr easey
Second opinions on lab results are Important. They are in fact refutable. You should have your Uro send the slides to Epstein at Johns Hopkins.
Bob
Posted 10/4/2014 10:57 AM (GMT 0)
+1 on Dattoli. I was treated there 2 years ago for GL 7. PSA holding at .2, no side effects, couldnt be happier.
Posted 10/4/2014 11:59 AM (GMT 0)
Drveasy, sorry for the results -- now into warrior mode to make some decisions. I'll second what Break60 said about getting a second opinion on the biopsy results. Bostwick and Epstein are real experts in this.

Beyond that, you should absolutely get some opinions from other disciplines. Whatever his marketing tactics, Datolli is a rock star who has delivered great results and would certainly be worth a visit. Make your own decision after meeting him rather than taking one urologist's opinion. You probably should also consult with SBRT and HDR brachy specialists so you get a good range of options. Getting educated and reviewing your options is the right approach now.

Jim
Posted 10/6/2014 7:34 PM (GMT 0)
Thanks for the words of wisdom. I've sent information to Dattoli to at least have a consultation with him. Could you guys tell me what having the biopsies sent to John Hopkins would gain? It seems that it would result in only a downgrading or upgrading of the grade of the cancer. Maybe I'm missing something here. I'm going to have it done but am just curious.
Posted 10/10/2014 11:35 AM (GMT 0)
I met with my nurse prac who originally had sent me to a urologist when my PSA shot up last year. I wanted to know why he sent me to who he did. I was fishing for more information about my urologist. Why did you send me to this doctor over that doctor. His answer was that this doctor would be the Urologist that he would go to if he was in my shoes. He also went on to say that if the Urologist said that surgery was the best option he would take that and not try to second guess him.
When I mentioned Brachytherapy and specifically the Dattoli Institute, he said that he has patients that have gone in many directions for many different treatment plans and that he is not a fan of radiation of any kind in the treatment of Pca. He had anecdotal experience with a patient that had Brachytherapy and that now years away from the actual treatment, that patient was suffering major urinary issues because of scarring, which may result in permanent catheterization. They are talking urethral re-sectioning and other things to fix him.

I'm taking all of this with a grain of salt. I'm expecting the Dattoli doctors to be giving me a call very soon for a phone consultation. I'm just not seeing RP as the gold standard at the moment.
Has anyone experienced urethral damage with Brachytherapy and follow up external radiation? How do they protect the urethra which is smack in the middle of the gland?
Posted 10/10/2014 4:24 PM (GMT 0)
The urethea cells are resistant to radiation and will commonly accept a high dose without any issues. Strictures occur in about 5% of brachy patients; they can also occur with surgery at about 3%. The real difference is in permanent incontinence which is zero with brachy and about 11% with surgery. ED rates are about 15% points lower with Brachy, 35% vs 50%. All treatments have their own probabilities of side effects and you should be well aware of a lll of them before choosing a treatment.
Posted 10/10/2014 7:19 PM (GMT 0)
Brew, it's good to be skeptical about anecdotal stories. Look at data - that will lead you correctly. Anecdotes are great for sharing around the campfire - not so great for using for decision making.

Jim
Posted 10/15/2014 10:24 AM (GMT 0)
I've had my phone consultation with Dr. Dattoli and thought that this is a guy that knows what he's doing. I then spent another 45 minutes on the phone with his oncology nurse getting particulars and questions answered. So far, I'm impressed. Their arguments are sound concerning surgery, side effects and the notion that you can take it out and that's that. I like that they didn't dwell on what surgery can do for you and to you but more about the facts of their treatment. I'm really leaning in this direction at this point. The time investment for treatment with Brachy and DART is large but I'm lucky to only live an hour away.
The oncology nurse mentioned the possibility of treatment with Casodex before the DART begins. I would like to know others experiences while taking Casodex?
Posted 10/15/2014 11:51 AM (GMT 0)
Brew, others will chime in on the Casodex option. I just want to applaud your thoughtful approach to treatment. Too often on this site we see men who do not take the time to get educated and seek options. You are doing this the right way, IMHO.

Best of luck,

Jim
Posted 10/15/2014 12:33 PM (GMT 0)
Belated welcome there Brewmaster; I've been following your posts and IMHO you are indeed going about this in the right manner - no panic, taking your time and doing your research. I was what I would consider "obsessed" with learning about this beast as well as the various treatment modalities when I was at that point in my journey where you are now.

As part of this I also consulted with Dattoli and was equally impressed. In fact had I not found the CPC and Dr. Brian Moran (only an hour+ away versus halfway down the country) I was headed there. Additionally I acquired a fair amount of data, reports and info that I would be happy to share with you - if interested shoot an e-mail my way and I'll reply. JohnT briefly cited some very good data, and as others have suggested data trumps anecdotal.

Best to you.
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