Appointment with Doctor in Orlando on Monday. Anyone have experience with this Doctor?

Hello. I am a new member to this forum. This is my first post. My husband is soon to be 49 years old and was diagnosed with prostate cancer on March 14th, 2011. Here is a little history:

In December of 2009 he went for a routine physical and it was suggested by our friend who worked at the doctor's office that he have a PSA test. Okay! (By the way, what's a PSA test?) Results came back that his PSA was 5.1.

The doctor referred him to a urologist. Nothing was found on the DRE. After 10 days on antibiotics his PSA was 4.1. The doctor wanted to do another PSA test at his lab and it came back 4.4. Because this urologist was inpatient and unfriendly we sought out another urologist in the Orlando area. An older friend who had been diagnosed with Prostate Cancer had been referred to Dr. Inoel Rivera Ramirez at Winter Park Urology for a second opinion to his diagnosis. This doctor is very patient. He is a urologist/oncologist. My husband & I were afraid for him to have a biopsy, basically because we were under a lot of pressure from family members who "don't trust doctors" and were told that a biopsy would spread cancer so he decided to wait and check the PSA in three months. Okay with the doctor.

The PSA test three months later came back 2.4! Doctor felt comfortable with that number and told him to retest in four months. Four months later it was done and came back at 5.0. A month later he did another one and it came back 4.8. His free psa has been between 10-13%. Finally, because he was so sick of worrying about it, he had a biopsy on February 25, 2011. Results came back that he has cancer in 4 of the 12 samples and the Gleason score is a 6 (3+3). We were sent home with a book to read on different treatment options and his follow up appointment is this coming Monday. I would be interested in knowing if anyone has been treated by Dr. Inoel Rivera Ramirez. He was professor of Urology at the University of Florida and he said that he performed the first robotic surgery in Florida or Orlando (can't remember) in 2006. We like this doctor for his kind, patient manner, but realize that this is a one-time only operation & want to be sure that we have an excellent surgeon. I have read good things about Dr. Vipul Patel who performs robotic prostatectomies at Florida Hospital Celebration. (It has been claimed that he has performed the most robotic surgeries in the world.) Dr. Ramirez performs his robotic surgeries at Florida Hospital Orlando.

I'm also interested in what percentage of the members of this forum had to be treated with radiation after a radical prostatectomy. I have read alot of the posts here and am wondering if many of the members are on this forum because they have had problems. Thank you all for any input you can provide.

Thank you for your reply. I have read lots of interesting posts here. I do have Dr. Patrick Walsh's book on Surviving Prostate Cancer. I have just about finished it. I also read the Prostate Cancer Protection Plan (I think that's the name) a year ago when we first started talking and learning about PSA scores. Over the course of the year he has radically changed his eating. No animal fats, lots of soy, tons of vegetables ( and lots of farts!), green tea, tomato juice, pretty much the regimen laid out in the Prostate Cancer protection plan. I have created a list of questions to go over with the doctor. Actually, I know much more about prostate cancer than my husband does. I guess I can contribute that to my love of reading! And, I might add, I'm glad I don't have a prostate! Thanks to everyone for their open, frank information about their journey. It has been comforting!

HI,
I would suggest putting together a book, what we refer to as "THE CANCER BOOK". I took a 3 ring notebook and some sheet protectors and started putting together all the lab results, info from DR appts, questions we wanted to ask, medical history, medications, prescriptions (we made copies before taking to pharmacy) , insurance info and referrals/authorizations (as they came in), I also placed a month to month calendar in it so I could keep appts easily accessible. I then would go with my husband to every Dr appt, every biopsy, x-ray, scan, surgery, post-op appt, pre-op appt. I am sure his Drs didnt like me much since I would sit there with the book open and a pencil referring to my questions and then writing his answers. This book has come in handy many many times. I highly suggest you start and keep one. As you will find the deeper into this the Dr appts will start to run together, along with what day you found out what test result. I paid money for an online book that I could just make copies of, instead of recreating the wheel, it is called Stepping stone journal. I wouldnt suggest paying, once I had paid, I found lots of websites that were free. But google the Stepping stone journal to get an idea.

I wish you and your husband the best of luck in these scary times. Prostate cancer is a "couples disease". It will effect you both, communication between you and your loving husband is going to be so important. You have come to the right place for fantastic support from some amazing men (and their loving women!)

Thanks everyone for your positive words. Susan, I did go out and buy a three ring binder yesterday with some dividers for medical records & plastic slips that I could put in newspaper articles, printouts from the internet, etc. I think it helps me to feel more empowered. I don't really care what the doctors think about my presence & questions at my husbands appointments. Afterall, we are his customers/clients. And they are there to take care of our needs!

Hello former fish. (Are you sure you are not still a fish?). If you are thinking about Dr. Patel, why not schedule a meeting to talk with him? You can see what you think of his experience, as well as personality, responsiveness, etc., and probably get even more educated in the process. Look at it this way: if you were thinking about buying a new car, you would not hesitate to take the time to vist a few dealerships, ask a bunch of questions, take some test drives, etc. You are only going to buy one of the cars, but you want to check out several to make sure you are happy with the one you select. And obviously this decision is MUCH more important than buying a car. So if you are considering two docs, why not meet with both, ask a bunch of questions about approach, level of experience, results (cancer control and side effects), and see what you think. You might even meet with a radiation oncologist -- a different specialty -- to get a different perspective. Radiation (seeds, external beam, or both) is a viable alternative to surgery. I am not saying it is better, but worth considering as an option. There are some very well regarded radiation oncologists in Florida, including Dr. Dattoli in Sarasota. It is, IMO, worth doing this sort of due diligence, to make sure you are fully comfortable with your (or your husband's, I suppose) decision.

You also ask about whether people on this board are here because of recurrence. People are here for lots of different reasons. But it is also worth keeping in mind the people who are not here: many who get the diagnosis, consider their options, have a treatment, get cured, and move on with life. I hope you are Mr. Former Fish are among them.

Regards, Medved

A former  Florida Marlins player or fan?  Interesting name.  But then, I think the name I use here is pretty dumb and have been thinking about changing it.

ex-fish,

My post to you would be all of what clocknut first posted, after taking a chance to welcome you to our corner of the world.

I would expect that your insurance may (mine does) actually require a second medical opinion before surgery. The question is always if the doctors you want to see are in-network and that they accept your insurance. That was a bit of an issue for me.

I kept notes as well. To help you organize, you might contact Lance Armstrong's foundation, which will send you (free or charge/obligation) a set of general cancer notebooks/diaries that help organize a lot of daily information.

Another source is the American Cancer Society, which has (free) kits that are a little more customized called "Personal Health Manager".

Even if you don't use these sorts of forms, they will remind you of details that you might need to add to your own diary.

And last, I always suggest that you take a small recorder, and record the medical sessions (of course asking the physician's permission). I was later amazed at how much was said, and how little I heard / remembered.

Again, welcome.

 

Thanks again everyone for your replies. As regards the "I use to be a fish" it just has to do with my maiden name.

My husband is more interested in surgery than radiation because of his age and because his doctor told him that they aren't really sure what effect radiation can have on a person 20 years down the line. From reading the John Hopkins books it also states that surgery is the "gold standard" in prostate cancer treatment - that is if you are young enough and healthy enough. Funny, my husband is young enough & healthy enough which makes it all the more confusing as to why he has prostate cancer. A healthy man who never gets sick, has his own business, has more energy than teenagers. Wouldn't you think that a person who has a weaker immune system and is susceptible to getting sick would be more likely to end up with something like cancer verses someone who never gets sick? A friend of my family just found out that his cancer has returned after doing the seed radiation. I think it's been about five years. His advice for my husband was "get the darn thing out of there!"

Hi X-Fish,

Welcome to the forum. My husband was diagnosed 3/10 and had surgery done by Dr. Vip Patel 8/10. We were very happy with Dr. Patel and my husband's outcome-no e.d. or incontinence-but---every case is different. The hospital was wonderful and we would highly recommend it, as we would Dr. Patel. That said, study up and make your decision based on what feels right to you. Surgery was right for us but there are other options . One note about Dr. Patel- he will not operate without a second opinion on the biopsy slides. We really appreciated that he wanted to be very sure about the diagnosis.

Kind regards,

Renee
p.s. I would be glad to answer any questions about our experience with the dr.

Dear former Denizen of the Deep,

Don't be afraid to ask hard questions of any doctor you talk to.  I remember asking how many surgeries he had done, what the worst thing that had happened during one of his surgeries might have been, what his rates of return to full continence and potency were.  We also asked who else would be in the operating theater, what would happen if the machine or computer program went haywire, and why the surgery we were considering was a better choice than other treatments available to us.  We talked at length about all those things.

My wife is a registered nurse with 40 years of experience.  I was glad to have her there as my advocate, and also later during the hospital stay.  As you said in an earlier post, you're the customer and the doctor is there to meet your needs, and I get the sense you're going to be extremely helpful as your husband moves along in his treatment. 

I was surprised to find out that the uro/surgeon would start the operation, make the initial incisions, then break scrub to operate the DaVinci machine.  So, if it became necessary to convert to open surgery, it would be his assistant who would take over.  I don't know if that's always how it works, but it seemed important to know..

If you don't have the questions you want to ask written down, you'll easily forget to ask something.

Yes, you and your husband are young to have to deal with all of this.  My wife and I will keep you both in our thoughts and prayers.

 

As close ads you are to Dr. Datolli I would strongly advise you to meet with them and get an assessment. Yes, Johns Hopkins marketing department refers to surgery as the gold standard, but be aware that radiation has proven to be as good or better with fewer and less severe side effects. I used radiatiuon and my doctors say it is the "new" gold standard. I would advise you to meet with an excellent surgeoin and also meet with an excellent radiation oncologist. Then mneet with men who have have had each treatment and check on their situation in side effects.

With a G6 and the PSA level, this is not an emergency. You have time to do effective research and then choose the most appropriate method. There is no need to hurry. Yours is a case where a rush to judgement could be detrimental in the long term.

Please, take your time and develop a relaxed approach to the research. Get a 2nd and 3rd opinion from several different methods. open surgery, robotic, high dose brachytherapy, low dose permanent seeds, IMRT/IGRT all should be evaluated up front before a decision is made.

 

Former Fish,

I was operated on by Dr. Patel and can only say the operation and recovery was fine the hospital is first rate and Dr. Patel's staff are caring and knowledgeable.  I also went to him because my doctor said he is the best. I had no issues with continence.  I was a Gleason 8 going in so my surgery and follow up SRT were failures, but I do not blame Dr. Patel he was always honest and responsive and I was never handed off to other doctors.  Three other friends have gone to him with very positive results.

No continence issues and so far no recurrance issues.  I cannot say one doctor over another makes a big difference but I wanted someone with a lot of experience.  Hope this helps and good luck in your decision.  Take your time to decide what is best, schedule an appointment and talk with Dr. Patel you have nothing to lose.

Jerry1