Mayo Clinic Rochester Advice

Glad I found this board. Recommended by a high school classmate who was treated last year for PCa. Like all of you, surprised to find myself here but so glad this exists. It has actually been a great help and answered a lot of questions.

So, recently diagnosed. The stats that I know are in my sig. Doc is recommending open RP because previous abdominal surgery will make robotic surgery "more risky". He is a urologist and a surgeon so his rec is not surprising. I am relatively young and very active. I run 5 miles most days, golf, and have a great relationship with my still beautiful wife (I'm a lucky guy). So... very nervous about the possible side effects of surgery.

I have decided to make an appointment at Mayo, just sent them a request. My thought is that since they seem to offer every treatment for PCa there is, and since it's about an hour drive from my place (I live in Minneapolis), it would be a good move to get balanced, unbiased advice on my options.

So, my questions are...
Is this a good idea?
Does anybody here have experience with Mayo? If so, any advice, or warnings, or recs for a particular doctor?
I am very interested in Brachytherapy. I think I would be a good candidate. Any advice or experience with that treatment?
I have had a previous operation that required catheterization and to be honest, that to me was the worst part of the experience! Do not want to do it again if I can avoid it.
And finaly, my urologist in Minneapolis is Dr. Hoo Yin Wong, who I really like personally, he's been a great doc. Just wonder if anyone has had open surgery performed by him.

Thanks all. Sorry for the long-winded first post but I've been doing a lot of reading and thinking before deciding to jump in.

We have quite a few from Mayo Rochester, here... I'm one of them. Dr. Tollefson is highly recommended by HighlanderCFH and now another new member whom he referred to Dr. T. I used Dr. Stephen Boorjian (Harvard educated) and had my procedure 6 months ago. Mine was robotic. The catheter class I took at Mayo featured Robotic and open patients, alike.

Mayo was first class. No worries on my end I wasn't getting world class care. My incontinence is gone. ED is a greatly improving issue at 6 months. Wife calls me 85%. Not where I want to be but it's early.

Sadly, Cathy Cahteter is part of the deal with these surgeries and the fact that it's open requires a longer catheter stay if not mistaken.

With your stats you could choose to do nothing but active surveillance although your PSA doubling time appears to be 1 year. G6 is great and you only had 1 of 10 sample positive although biopsies aren't entirely accurate.

Brachytherapy was the other therapy recommended for me. Didn't like the idea of radiation whatsoever as I feared a secondary cancer due to the procedure and the side effects seem to be worse in some instances. I just posted a link to a study done on men who about equally chose surgery vs. radiation.

Each case is as unique as you so don't worry about if this or that might happen. None or all of it could happen in your particular case.

Huge thumbs up for Mayo, although, you have several top notch facilities right there in the Twin Cities. Abbott Northwestern, UofM, etc...

That ride back from Mayo will be a doozy. I rode from Rochester to Burnsville the day after... what a ride.

Wishing you well...nobody wants this but your numbers look good to me and hope surgery can effect a cure or BT if that's what you end up choosing.

Welcome aboard. I had robotic so cant answer your questions, but you can type in Brachytherapy in the little search box at the top of the page and look for previous posts. Good to see another runner on the forum.
Michael

Hi,

Given that you are concerned about possible side effects, and given your numbers, I would strongly urge that you consider Active Surveillance. The fact that your PSA doubled in one year doesn't necessarily mean much. These are just two numbers (to determine a true PSA velocity you need more numbers). In my case, for instance, my PSA jumped from 1.0 in 1997 to 3.4 in 1998. (See my numbers below.) However, here we are 16 years later, and I have still not been treated.

Hello Geetar and welcome to HW. Sorry you have to be here but I'm sure you will find lots of great info and support on this site. I would highly recommend that you get as educated as possible about our disease and take your time before making any final decisions. A good start is the sticky for new members at the top of our forum www.healingwell.com/community/default.aspx?f=35&m=2652250. Also I would highly recommend reading Dr. Walsh's book, "Guide to Surviving Prostate Cancer" and Dr. Scholz' book, "Invasion of the Prostate Snatchers". Between the two you should find the broad perspective you need.

Several folks mentioned Active Surveillance which seems might be a good option for you if your psyche can handle that. If you do go that route, I would suggest some added testing such as CDU or MRIS or biomarkers to help stage and assess the aggressiveness of your disease. You should also, as a matter of course, send your biopsy pathology slides to an acknowledged expert such as Dr. Bostwick or Dr. Epstein who will give you a second opinion.

You asked about brachytherapy. Your stats would indicate that you are a candidate for that treatment. It was my choice and you can read my long winded journey by copying and pasting the link in my signature. There are other brachy patients who may also chime in on this thread. AYooper, one of our outstanding members, unfortunately does not post here much anymore. Yoop did some GREAT research - especially on brachy - and his email is still active if you want to contact him. I know he will be glad to help.

I think going to Mayo for a multi-disciplinary approach is a good idea. You need to understand the possibilities and gather the different perspectives that radiation docs and surgeons may have.

Good luck and remember that we are here for you to help you thru this.

Jim

...to Ed's point...I was catheterized during my BT (so they say) but the catheter was removed before I woke up so I never knew it. I think situations are different depending on the doc and patient but wanted to share my experience since Ed reminded me...

Jim

Mayo would be an excellent choice, without a doubt.

I had open surgery by choice, no regrets. I wanted "seeds" but didn't meet the criteria back in 2008, and robotic was too new a method in my area back then.

I was fortunate, and had zero ED issues, and not really any incontinence issues. Had a very experienced "open only" surgeon at the time.

THink your thought process is good, and will keep you on the right track. Good luck and welcome.

David

Hey GeetarMan, I was 50 years old when I was diagnosed and had Robotic Surgery at Mayo Clinic in Jacksonville Florida. Excellent care from diagnosis, treatment and through my continual follow-ups. In my opinion, my urologist was great at looking at all options and how to approach what type of treatment was right for me. He highly recommended I speak to my Mayo Family doctor, Mayo Radiation Oncologist, ask others who I knew had treatment, Family, Friends etc. before making a decision. He was not pushing me in one direction or another, but he gave me some very interesting facts and options. Have Surgery (recommended as best option because of my age), Radiation (but it may be difficult to do salvation surgery later), or AS (not really recommended as a good option in case it started to spread outside the capsule). Even though mine was a Gleason 6 and PSA always low, due to the fact they were able to feel a lump the best option for me after talking to others was surgery. After folowign through on all of the above suggestions, talked to others, and many hours of reading up on treatment, as well as finding HW, I decided the best thing for me was to get the PCa out!

Let me know if you have any questions I may be able to help answer by giving my opinion. I'm not a medical professional, but glad to talk about my journey. There are many different treatment centers and hospitals that do great things. Mayo Clinic is unique in their approach for each patient that comes to their sites and offer not only the opportunity to seek treatment in one location, but if needed they can reach out to any of their site specialty physicians for assistance in a diagnosis and treatment.  

Good Luck!

GeetarMan said...
Glad I found this board. Recommended by a high school classmate who was treated last year for PCa. Like all of you, surprised to find myself here but so glad this exists. It has actually been a great help and answered a lot of questions.

So, recently diagnosed. The stats that I know are in my sig. Doc is recommending open RP because previous abdominal surgery will make robotic surgery "more risky". He is a urologist and a surgeon so his rec is not surprising. I am relatively young and very active. I run 5 miles most days, golf, and have a great relationship with my still beautiful wife (I'm a lucky guy). So... very nervous about the possible side effects of surgery.

I have decided to make an appointment at Mayo, just sent them a request. My thought is that since they seem to offer every treatment for PCa there is, and since it's about an hour drive from my place (I live in Minneapolis), it would be a good move to get balanced, unbiased advice on my options.

So, my questions are...
Is this a good idea?
Does anybody here have experience with Mayo? If so, any advice, or warnings, or recs for a particular doctor?
I am very interested in Brachytherapy. I think I would be a good candidate. Any advice or experience with that treatment?
I have had a previous operation that required catheterization and to be honest, that to me was the worst part of the experience! Do not want to do it again if I can avoid it.
And finaly, my urologist in Minneapolis is Dr. Hoo Yin Wong, who I really like personally, he's been a great doc. Just wonder if anyone has had open surgery performed by him.

Thanks all. Sorry for the long-winded first post but I've been doing a lot of reading and thinking before deciding to jump in.

Hi there,

As others have indicated, I have direct experience with Mayo Clinic in Rochester. My family has had their annual physicals there for over 30 years and I had da Vinci surgery for PC there in 2011. You'll see my stats in my signature down below.

For starters, you will love Dr Matthew Tollefson and his staff if you can get an appointment with him. All the doctors at Mayo are top notch, of course, but I favor Dr Tollefson since he agreed to see me when I went there without a urological appointment. He is very busy but will spend as much time with you as you want -- and makes you feel like you are his ONLY patient. Very nice, confident and friendly.

When I went there for their opinion about my PC, they required me to have my original biopsy slides sent to them so they could have their own pathologists look at them. So they will probably require this from you also. I can understand why they require this -- so they can offer their own advice through "their own eyes, ears & microscopes" instead of someone else's.

Prior to seeing Dr Tollefson, I met with one of Mayo's radiation oncologists, Dr Michael Stauder. He also was very nice and spent a lot of time discussing my particular case with me. He explained how I was not an ideal candidate for brachy, but EBR (external beam radiation) could offer a cure, as could the robot. He actually recommended that I set a date with the robot due to extreme BPH symptoms I was suffering from.

If your prostate is normal sized, brachy should be fine for you. The best thing to do is visit both radiation oncologists and uro/surgeons to learn the good & bad of all forms of treatment. You cannot do this any better than at Mayo.

As the others have noted, you could be a good candidate for AS since your biopsy stats are pretty favorable. What was the percentage of involvement in your positive core?

At the same time, you might also take note that a biopsy is 100% accurate "most" of the time. But there is somewhere between 20-30% of the time when they miss other tumors (including some that could be more aggressive). A standard 12-core biopsy covers about 1/1000 of the prostate.

With all that said, you are VERY lucky to live just an hour from Mayo. My Mother often wishes we were that close. For us, it is a 6+ hour trip from the Chicago area (a driving nightmare) to Rochester.

Sounds like you have a very good doctor at home, but I still would not hesitate to visit Mayo for a second opinion.

Please feel free to ask any questions you might have in the forum about anything related to PC -- or to Mayo, since I, and a few others, can relate our direct experiences to you.

Good luck! :)
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

Post Edited (HighlanderCFH) : 3/3/2014 2:28:20 PM (GMT-7)

Thank you all very much. So much appreciate everyone's input. It means a lot. I will follow up after I (if I) get into Mayo. They are supposed to call me in a day or two.

I should note that my DRE was normal. I did not know to ask about percentage in the sample. I will call the office and see if I can get that info.

One concern is that I see a lot of folks have their Gleason "upgraded" (funny term) after surgery. So I suppose a really accurate picture of the extent of the disease is a huge plus on the surgery side.

My doc says that with my score it's extremely unlikely that it has spread past the prostate, but as I've learned from this forum, anything is possible!

Also, I would imagine that folks that have continuing issues would be more likely to post than others who have had better results. Any truth to that?

Geetar,

I would agree that many people who have done well with their chosen treatment often move on with their lives and that people who tend to have issues do more postings. I did surgery because my personality is such that AS would not be an option and with radiation you don't know as well as with surgery. My choice and no regrets, but I also have no meaningful side effects either so its easy for me to say that.

Best wishes,
Tom

GeetarMan
We have different stats in our signature so our paths will be very different. That said, being in the Twin Cities is a definite advantage for health care and with Mayo only 90 minutes away you can't go wrong there either.
I recommend Dr Eugene Kwon @ Mayo. As said above about Tollefson, Kwon really takes the time you need and uses others within the very efficient Mayo system to stack the odds in your favor. I know others in the Minneapolis area that have seen Tollefson and were pleased with their experience. If open surgery is ever necessary (doesn't look like you are on that path), I recommend Dr Jeff Karnes. These Dr's are all Urologists @ Mayo.
Sorry you had to find us but it looks like you are doing very well!
All the best,

Welcome Geetarman and so sorry you have to be here. I'm glad you followed up on my suggestion to join this site as there are many learned people on here. They can offer way more info than myself.
Now that you are here, you can read my stats to see why I chose the route I took. I was handed a heavy hand right from the start. I have gotten to know some of these people first hand due to a GFMPH cruise in December,and they are all good people.
If ever you need to talk, you know how to reach me. BTW, I'll be coming to Minnesota during the July 4th weekend. We'll do some lunch.