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Telling each other ("insider views") about the places where we got treatment

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Posted 7/21/2015 2:08 PM (GMT 0)
Wouldn't it be interesting, and possibly even helpful to some who are here looking for a place to be treated, to have a thread in which, first, we each name the facility where we received treatment, and then describe what the place was really like, what was especially agreeable about it, some of the staff who were especially helpful, etc.?

I mean telling about not just the general website or handout/brochure types of information available to anyone, but the insider view kinds of things that one would know only from actually having been there, and gotten a first-hand, personal look at the place. The type of information that gives us a hint as to what being there would actually be like.

If you would like to participate, it would of course be useful to add a link to the website of your place after you identify it, just so we can read and first get a general picture of it. Then you can start telling us about your own more specific experience there, what only someone who has actually been there might know, the "insider view."

If you don't know how to make such a link, that's okay, just provide the facility's name and then tell us about it in your own words.

I'll go first. I was treated with IMRT for 45 sessions back in 2012, maxing out at 81 Grays (hence my username), at the Cancer Center of North Florida Regional Healthcare here in Gainesville. For the general picture, here's their website:

www.cancergainesville.com/

and here are my "special insights" about the place:

Check-in surprisingly fast and efficient. All wait times for administrative matters were minimal. Same for check out and exit interview. Staff extremely friendly and helpful in every area of the facility. Not once, but several times during treatment I was asked by administrative staff for suggestions on how to do things better. My RO (Dr. Alison Grow) was truly first-rate. I could sense that she was one of those physicians who are genuinely interested in the well-being of their patients, and she was always very open to suggestions and comments. It was very much a partnership arrangement, not her the doctor telling me the patient what to do. Radiation techs were all very professional, friendly, very experienced, and always supportive. When laying on the table I lost bladder control a couple of times, they joked about it in a friendly, reassuring way. One tech in particular always had his "daily joke" ready every time I came in. All of the techs always looked completely in control of the operation of the equipment, and except for an occasional delay all treatment sessions went efficiently and smoothly. Treatment vault was impeccably clean and well laid out. The ceiling of the treatment vault, what the patient would be looking at while lying on the table during each session, was a relaxing sky-and-clouds scene with white-blossoming tree branches. Very modern building and facilities, everything looking brand new. Even the landscaping outside the building was exceptionally well maintained. Remarkably clean everywhere, even for a medical facility. One sort of negative: parking near the facility was sometimes difficult to find, had to park in the garage a couple of blocks away and walk occasionally. However, when my sons drove me to treatments toward the end because of my fatigue this was more of a non-issue. Another "kind of" negative: my times on the machine had to be delayed occasionally, meaning I had to hold a full bladder even longer than planned, but I don't consider this as their fault, as such delays likely occur at all RT facilities. Okay, on that subject, maybe one more slight "negative": in the waiting room (which was unusually large and spacious and well air-conditioned) they had against one of the walls this large aquarium with tropical fish and plants in it. That was nice, but the thing constantly made this gurgling, water-flowing noise the way aquariums do, and sitting there in the waiting room listening to that water-flowing noise, made holding my already full bladder a "bit more of a challenge." (I brought this to their attention at the exit interview, but not sure if anything was ever done about it) (!)

Well, that's what my place was like, from an insider viewpoint.

So who's next? Tell us all about what the real experience at your place was like!
Posted 7/21/2015 4:12 PM (GMT 0)
I've shared this before, from a thread I started back then in my own journey - here's what I wrote on the actual day of my LDR BT procedure:

"Hi everyone - I'm back after my LDR Brachytherapy today. Right off the top, I feel, incredible - physically and mentally! Here's the rundown of my day:

Arrived at the Chicago Prostate Center in Westmont, IL at 11:00 a.m. Was given the paperwork to read and sign in the waiting room, and then Dr. Moran came out to welcome us and bring us in.

Nancy the pre-op nurse took all the vitals and so forth, and explained what would be happening. She then hooked up the three-mix cocktail I.V. and we waited for Dr. Moran to come back in. Dr. Moran then also explained what would be happening and as always reassured me that everything would be fine; he also engaged in small talk that was very calming overall - and as I have come to know is simply what he is all about.

At 12:30 I was wheeled into the OR where a full staff including the anesthesiologist, nurses and technicians (including Michael and Sonia!) and of course Dr. Moran. I'm not sure but less than 10 minutes later I was in ga-ga land. Next thing I know I'm looking up and asking the staff what time it was - 1:20 p.m.! I was given a total of 61 Iodine 125 seeds at 0.382 mCi per, for a total seed activity of 23.30 mCi.

After coming back around for about 10 minutes the urologist / Jane took me down to radiology to perform a cystoscopy to ensure correct placement and quantity of seeds - but first I was shown to the men's room and asked to pee in a bottle so they could observe that I could pee o.k. and also review the volume and color. My first pee after procedure was totally normal - no frequency, burning or uncomfort at all; my results were almost 500 cc's and light, which was my "get out card." The cystoscopy was quick, some scans on my back and more on my side. Jane showed me both views and explained things to me on the spot, everything good and as expected. I requested a copy of the scans and she gave me one on the spot, pretty cool stuff.

At 1:40 I was taken over to the recovery room and hooked up with my wife and friend who had accompanied me today. Post Op nurse Susan spent a significant amount of time with us, explaining everything that had occurred, what to expect today, tomorrow, two weeks and answering the "50-questions" I posed. We of course were given copies of everything. I was also given post-op meds that included Medrol 4mg (steroid to help in reducing the swelling of the prostate from procedure) - 21 tablets that start out at three a day and over the course of 12 days is weaned down to 1 per day; Rapaflo 8mg - 1 tablet daily to assist in urinary function, and even though my initial post-procedure pee was uneventful I'm still going to take this one as cheap insurance. It is supposedly the newest version of Flomax and Susan was good enough to give me a one month supply; Cipro 500 mg - antibiotic 2 per day for 2 days. Dr. Moran gave me his home phone and cell phone and told me to call at anytime with any questions or concerns. I will get a follow-up call on Monday and then the next visit will be in about 12 weeks for a follow up with Dr. Moran and a PSA draw.

After all the explanations were given I decided to pee again before leaving, this time about 275 cc's and light colored and again no issues. On the way out I signed out and then asked the receptionist Lili for copies of all of my records to date for my files, which she printed out for me on the spot.

So then I guess in summary - qualifying this with I do not yet know how this will all come out - I am beyond appreciation for how this entire process went today with Dr. Moran and his staff. You may have noticed I used everyone's name in this summary - it's because that is exactly how they make you feel, incredibly comfortable both in the professionalism and experience each of them provide for this process as well as how they treat/interact with you.

As we left we decided to stop next door at Pappadeaux's Seafood Kitchen, which is essentially next door to the Chicago Prostate Center. Had an awesome dinner of fresh grilled fish-kabob and other than some very minor dull pain in the perineum it was like any other out to dinner. . . . some 2 hours post procedure.

Thanks to all for your thoughts and prayers leading up to this. For all of you that have followed me along these past several weeks you know I have made a commitment to both "Pay Back" and "Pay Forward" - this summary is meant to be a small part of that promise.

Peace to all."


Chicago Prostate Cancer Center, Westmont, IL:


/prostateimplant.com/
Posted 7/21/2015 5:31 PM (GMT 0)
barnesjewish.org

I had my surgery done at Barnes-Jewish Hospital in St. Louis. Dr. Figenshau was the lead surgeon.

I had my consultation with Dr. Figenshau at the West County campus, and the surgery and post-op stay at the main facility next to Forest Park. Like a lot of major hospitals, the main campus of BJC is a confusing city-block sized pile that always seems to be under construction. The day before surgery, my wife and I had driven to St. Louis (2 hrs from home) and stayed the night near the hospital. We didn't stay there, but there is a hotel attached to the 'north' parking garage (the Parkway) that is connected to the hospital and makes special arrangements for patients and families.

The morning of surgery, we found our way into the North parking garage off of Forest Park Avenue. We wound up parking on the very top level, and this was February 17, 2015, and extremely cold with snow. We made our way into the hospital, and found the directions very clear to the area we needed to find. The overhead walkways connecting the buildings were well marked. As we made our way to the main building for checking, we heard a voice behind us that said, "you're going the wrong way to get to Effingham!". I turned and saw a nurse I've known for years, who is now working there. She asked why we were there, and I told her. She wished me luck and told me that I wouldn't be on her unit, but she'd check on me anyway.

Arrived in the surgical check in area, was given a pager, and my wife filled out an information card and got a nametag to wear. It didn't take long and we were called, along with 5 or 6 other patients and families, and taken up to the surgical prep floor. Put in a cube with a gurney, and was told to get in the gown and out of street clothes. From then on, everything flowed efficiently. The prep nurse came in, then Dr. Figenshau and his residents and a surgical fellow. Soon after came the anesthesiologist and his assistant. about 11:30, there was an animated conversation at the nurses station about how the charting system had just crashed, and they were moaning about having to hand chart everything.

Just before 12, the nurse-anesthetist came in and we talked about what was coming. She asked if I wanted to be out then, or wait until we got to the OR, I didn't really care, so the next thing I knew it was 4:30 pm and I was in the recovery room.

Got to the room at 8 pm, on the 17th floor of Queeny tower. I had the bed by the door, so no view...not that I would have cared. The night shift nurse and aide were great. I didn't sleep much, and had some pain issues. Someone checked on me every hour or two. In the morning, the first person I met was actually the breakfast guy. He apologized for bringing me cream of wheat...all that was allowed on my liquid diet. He did give me several tubs of margarine to help it go down. He promised that if I was on a real diet for lunch, he'd do better.

The day team came in and introduced themselves after breakfast, and apologized because the charting system was still down, so it would take longer for everything. Soon they came in, took off the oxygen and told me it was time to walk. They got me out of bed and we started the parade around the nurses station. Nurse on one side, aide on the other, IV pole in my left hand, cath bag in my right hand. Butt hanging out, we walked around the floor.

An hour or so later, the aide took me for another walk...and told me that I was on my own after that. Noon came, and the food guy came back..meatloaf, mashed potatoes and gravy, carrots. Not bad. Sometime during the morning Dr. Figenshau came in and looked at my dressings, and introduced his Residents again. Around 3, the Fellow came in and told me I was released. It took an hour or so to get the paperwork done and an orderly with a wheelchair came and got me. Wife went to get the car and bring it around, and they helped me in and sent me home.

On post surgical day 5, Dr. Figenshau called me at home to ask how I was doing and to give me my post-surgical pathology report.

Impressions? BJC is a great facility. Everyone was friendly and professional. I got top-end care and feel like I got everything I needed.
Posted 7/22/2015 12:01 AM (GMT 0)
There is one caveat to this sort of thread.

If you did not like your facility or docs, please do not discuss it. We can't bash named docs or facilities here, for potential legal issues.

So if you liked your place, go for it.
Posted 7/23/2015 5:25 AM (GMT 0)
I had my RP 2 years ago yesterday at the University of Washington Hospital in Seattle with Dr. Bruce Dalkin. Don't know when they built the place; it kinda looks like a huge cement bunker and space in the hallways is in short supply (lots of stuff appeared to be stored there) as I saw during my post surgery walks. Given that intro I am here to say I received really great care. The staff was so very attentive. At check in (6AM!) there was just a hoard of people lined up to have their surgeries. I was pleasantly surprised at how they got every one done in a rapid and orderly manner. They had a long hallway with dozens of cubicles of folks waiting to go into the OR's. I think I asked how many OR's they had and I seem to remember 24...Anyway, after a very short wait to my OR and within no more than 3-4 minutes after being moved onto the surgery table I was out. Don't remember recovery and came to in my private room (they all are private there, I think). I was pretty loaded on Oxy and pretty weak but they make you take a walk that very first night (always supported by a nurse!).
For some reason the Oxy (or whatever I was on) made me hyper so I was pretty much awake most of the night. Probably better in that the IV alarm went off several times and needed tending to (and the nurses were right there to tend to it). Next day was many more hallway walks. I was released the following morning. Dr. Dalkin did stop in twice to see how I was doing. To sum it all up: The staff couldn't have been more attentive and the care I received was excellent. The place may be a little long in the tooth to look at, but hell, you are not there to sightsee!
Posted 7/23/2015 10:48 PM (GMT 0)
I had a DaVinci RP at Huntsville Hospital in AL. The doctor did a good job as far as side effects is concerned, and I had a clean pathology report...but some cancer cells were left where he sewed the urethra back together (not uncommon). I was PT2C, Gleason 7 downgraded to a Gleason 6 in the pathology report. Two years later my PSA was rising. My urologist was proactive and I obtained a referral to the Dattoli Cancer Center in Sarasota FL. My PSA was .046 before radiation therapy.

Dr. Dattoli consulted with me by phone for free. He was very generous with his time, I think we had a 45 minute conversation.

His published 16 year results in curing intermediate (157) and high risk (164) PCa patients (PSA < .2 ng/ml, nadir +2) published in the Journal of Oncology Volume 2010, Article ID 471375, is 82% (using the technology available then). The data and slides were independently evaluated before publication. These results were derived by combination brachytherapy and external beam radiation. He has evolved his treatments to their current state of the art; Dynamic Adaptive Radiation Therapy that include precise methods to target the suspect tissues while minimizing injury to adjacent tissues.
To the best of my knowledge, this is the highest published cure rate in the world for higher risk patients. And this was with old technology! Dr. Dattoli told me he could follow up with these patients but since the data flatlines at 82% from 10 to 16 years the costs would outweigh the benefits. He expects no change in the data. Dr. Dattoli is constantly studying the best treatment protocols and has the newest technology available.

Dr Dattoli treated Dr. "Snuffy" Myers, the renown Medical Oncologist for his advanced PCA in a lymph node. Dr. Myers definitely knows who the best radiation oncologists are. I think that was 15 years or so ago, and Dr. Myers is in enduring remission (he does not use the word "cure".

So, my choice for salvage radiation therapy was easy. Getting all the pieces to fall into place was a challenge since I had to get all the tests done and find a place to stay (thank you Craigslist). Insurance was not a problem since Dr. Dattoli accepted my Tricare insurance and Medicare. Hooray! My co-pay was actually $200 less than I was expecting. Dr. Dattoli's staff sent me an information packet that helped me find affordable housing and included things to do in Sarasota FL.

I can't recall how many vials of blood the vampires (kidding) took so Dr. Dattoli could evaluate my baseline before treatment ( I think it was more than 10). He is very thorough in everything he does.

I received a Color Flow Doppler Ultrasound test my first day that identified increased blood flow where my Urologist stitched my urethra back together (likely PCa site). Dr. Dattoli has his own CT scanner and lab. The CT scanner identified a couple of enlarged lymph nodes. He told me these sites would be his focus for the radiation treatments.

When all the tests are complete, Dr. Dattoli and his partner, Dr Sorace jointly develop a treatment plan. I had 45 treatments plus 1 year of ADT (hormones mostly, but Dr. Dattoli agreed to my request for Metformin and Celebrex immediately).

I met with the lead Dosemetrist (sp?) who showed me the treatment plan on her computer. The computer fuses data from CT and other scans (e.g. USPIO nanoparticles with MRI provided at Sand Lake Imaging in Orlando and f18 PET scans). I did not have the more expensive scans. The site where the scans indicated probable cancer ( I had no biopsies) were clearly outlined in the plan.

They used an expanding foam "cradle" to keep my legs in the exact same position for each treatment, aligned my body using lasers for each treatment, and taped a sensor on my stomach to monitor my breathing during radiation to maximize the beams' accuracy.

The side effects I had were: nausea the first 3 weeks from the medications, more frequent, slight burning when I urinated and urgent need to evacuate my bowels the last week (better find a potty in the next 20 minutes). I met with a nurse once a week where we reviewed my side effects and effective remedies. Of course, I will have the side effects from ADT for at least a year.

Dr. Dattoli has a foundation for brachetherepy research where he provides education classes every Tuesday tailored to PCa patients. I attended the exercise, nutrition and dosemetry classes. The lecturers were professionals in their field. They were excellent. He also has DVDs you can check out of symposiums he and Dr. Myers have presented.

There were 3 men I met there out of about 30 who were locals (Sarasota or Tampa). The rest were from out of state, including one man from Mexico City. I was out of my element parking my Ford Ranger pickup next to the expensive European cars.

Those who have PCa metastisis need to know that Dr. Dattoli will treat your mets if they are less than 5 (ogliometastatic disease). He questions why we treat localized cancers that go to lymph nodes (like breast cancer) but give up on similar PCA patients. He and Dr Myers partner with Sand Lake Imaging to evaluate advanced PCa with MRIs that use fereheme contrast (an iron nanoparticle that costs $1500 and not covered by most insurance). He reviews the data on every patient periodically and constantly seeks ways to improve his treatment protocols. He is working to get FDA approval for the fereheme scan. I met 2 patients with bone mets who he was treating. There is an excellent Youtube video where he discusses this.

In the off chance I develop bone mets, I will seek treatment with Dr. Dattoli again.

I highly recommend Dr. Dattoli and his crew. If finances are a concern, consider that I was able to complete the treatment for about $2000 out of pocket, including lodging in a private home. A bargain!
Posted 7/24/2015 3:02 AM (GMT 0)
Hey Domino, welcome and thanks for sharing your story / experience with Dr. Dattoli. I researched him pretty heavily back at that point in my journey - and I will tell you that my own "Plan B" should it ever be necessary, would be to go to him and his "DART" approach. This man has great statistics and is definitely one of the "superstars" for PCa treatment.
Posted 7/24/2015 12:09 PM (GMT 0)
This topic has been here for a few days. Been a little busy with going back to work

Had robotic surgery March 31. G 8. Surgery done a MD Anderson in Houston. My surgeon was Dr. Chapin. At 6 weeks my PSA was .00.

MD Anderson is a great facility and Dr. Chapin is a dedicated surgeon.
Posted 7/31/2015 7:53 PM (GMT 0)
Surgery done by Dr Ash Tewari at Mount Sinai in Manhattan. Overall a very positive experience.
I was told to be at the hospital at 7 for surgery scheduled at 11am. The check in process was smooth and organized but I had two wait 2 hours in the holding area, as it turns out my surgery was rescheduled to 1pm and I was not told,
They walked me up to the OR suite at the appropriate time. I was put in a room with a member of dr Tewaris team who decried the process and what I was about to go through. She asked if I had an questions, and thanks to this forum I told he o didn't, and could probably do the surgery myself.
The Anesthesiologist then interviewed me, and i then WALKED into the OR, which surprised me. I was told to just hop onto the table. They strapped me in, and as the Anesthesiologist put the needle in my arm, he asked me what I do for a living. I mumbled an answer and added, I see what you are doing here.
Then I woke up in the recovery room. They were very attentive, and allowed my kids and wife up there, along with my best friend, who surprisingly showed up.
At about 7pm, I think, I was taken to my room

I had a private room on the concierge level, called 11 West, which I paid an additional $600 for. I am not one to throw money around, but in this situation, it was expected to be just one night and I didn't care, just wanted to not have q roommate. The biggest benefit though was that my wife was allowed to sleep in the room, so she didn't have to drive home and come back the next day

The following night I was sent home at about 9pm. They told my wife to get the car and call them when she was I front, and they brought me down, with our suitcase, and hoed me into the car.
The hospital experience was excellent .

Back to dr Tewari, at the 10 day mark, I went to his office and got the catheter out , then was given my pathology results by the RN. She also instructed me on mess. Cialis, etc, told me what to expect, what problems I might encounter and which ones should prompt a call to the office. I did not see the surgeon.

Next visit was at the 6 week mark, for PSA, and to review where I was on ED and Continence. I again did not see the surgeon, I saw the PA. THIS IS ALL PART OF THE SURGEONS PROTOCOL, he starts to see patients at the 3 month mark. It did not bother me, as the PSA and other issues were all perfect so there wasn't much to say except thank you, thank you, thank,you.

At the 3 month visit, I saw the surgeon, he told me that my chance of recurrence was less than 5%. I told him I felt lucky to have him do my surgery at which point he expressed how good that made him feel, and he showed me what a human being he is, despite the large number of surgeries he does every week.

In between visits as questions came up I emailed his PA. Who was great, and I always got a response the same day.

Overall, a fantastic experience, or at least as good as an experience like this can get. :-(
Posted 7/31/2015 11:18 PM (GMT 0)
Does anyone know the best place to go in colorado? Should I do surgery or radiation? Psa 5.9. 4 of 12 biobsy positive, two in left side had gleason scores of 3+3. Two on the right side had Gleason scores of 4+4. T2b. Please any suggestions would be helpful
Posted 8/1/2015 12:08 AM (GMT 0)
Pueblokid,

If you are only considering Colorado, I would recommend you consider the University of Colorado Hospital (Anschutz). It is located in Aurora, on the old Fitzimmons Army Base. Dr. Crawford.

My second choice would be TUCC (the Urology Clinic of Colorado?), it is located across from Mile High Stadium in Denver. I'm now seeing Dr. Jones.

My surgery was at Kaiser Denver (Dr. Green) six years ago.

You can google them and get more information.

Sorry, I am not very familiar with the facilities/doctors in Southern Colorado (I'm assuming you are located in Pueblo).
Posted 8/1/2015 4:33 AM (GMT 0)
Thanks for your responce RCS. I would be willing to go outside Colorado for the right surgeon or radiaologist. Since we can't say anything bad about places we have visited I won't comment on the University of Colorado Hospital. I am currently working with doctor Stephen Ruyle at TUCC, are you familiar with his surgical experience? Where would you go if you could pick? My insurance is Blu cross blue shield federal government so I could go outside if I find the right doctor
Posted 8/1/2015 11:36 AM (GMT 0)
Pueblo kid,

There are many very good places you could go, some of them listed on this thread. It seems to me that the best are located on the coasts or Chicago. Many very good ones in California and New York.

If I could do it over, based on what I've learned reading on this and other forums, and I had the level of PCa that you seem to have, I would probably choose John Hopkins. I feel that they have a good team that will offer you good advice on all of your treatment options. I feel it is important that you consider all of your options. If I was strictly looking at surgery I might consider Dr. Mani Menon (sp?) at Henry Ford hospital in Detroit. There are many other very good doctors out there.

Sorry, but I do not know anything about Dr. Rulye. In general I have been pleased with TUCC, but I have only been going to them for post op screening (PSA, etc.) and not treatment. Dr. Jones has taken the time to explain everything I asked him.

Best wishes as you move forward.
Posted 8/4/2015 2:35 PM (GMT 0)
pueblokid: My advice always start with suggesting that the person/we talk the matter over with our primary care physician who knows us and our health history the best and who should know which resources are available to deal with our personal condition and where those best resources are. Each of us faces particular, different circumstances for which one pat answer as where to go, who to see offered in response to a question misses the mark, IMO. I live in Chicago, so I had excellent resources to consider here without having to consider traveling to another city. I'm also blessed by having a primary care physician, the same one for 15 years, who guided me through the process from encouraging the biopsy when my PSA numbers looked "odd" to him, to recommending Dr. Robert Nadler at Northwestern Hospital to do the da Vinci procedure, to shepparding me through recovery and these years afterwards. All the best to you, as you make these important decisions.
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