Welcome mbshine RE: Dr. Guillonneau

In another thread, mbshine wrote: first appt w/dr guillonneau in two weeks. I live in NM. Diagnosed 3 weeks ago. 3 of 11 samples positive with gleasons of 6, 6, and 7...live in rural NM. State got its first robot this week. Local Dr. studied at MSK. I spoke to 10 physicians I know...two of them urologists, and two oncologists...giving them choice of mayo, anderson, hopkins etc anywhere in the world if they were the patient, all of them suggested MSK..I picked up the phone..MSK was very understanding of my situation, gave me choice of two drs and when I researched them with liklihood of robotics needed, I chose dr guillonneau. For what I have rationalized as personal reasons I refused to let anyone but my wife know of my situation...elderly nervous parents...son in Iraq...clients who freak out if I have the flu and don't answer their calls immediately etc....so I guess any personal guidance re dr G, his sense of humor, or lack thereof is appreciated.......sometimes in recent days I feel like I am swimming alone in a very dark sea..............thanks for this forum We'll give him his own thread, with welcome and answers here to keep it current, ok?                                                            Hi ~Mbshine and Loved Ones,   W elcome     to   ~ HealingWell ~   and   A    Special Warm Welcome   to   You !   Knowledge gives us POWER.   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~     Click   on   link   below for important information that will help you ~ help us!!                                                                    >>   Welcome New Members ~ to HealingWell   The information (link) listed above is to help you get around the forum!     This is a journey best traveled with friends.     Welcome ~ New Friend from all the members here... on HealingWell.com     Forum Moderators v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       Doting Daughter  ~   Moderator for Prostate Cancer Forum   v       James C  ~   Moderator for Prostate Cancer Forum  

   ..Welcome to the club, you're not alone anymore, this is one heck of a lifeboat....I'm sure more will be along soon that can speak to your question..

MBshine,

I can appreciate you concern with your parents and son in Iraq. This is a disease that will eat at you in different ways. Find your best friends and confide in them if you feel comfortable. I have found some of my friends have dealt with this years before I did. It helped my sanity to talk with other men who have delalt with this, just like the folks on this forum. This is nothing to be ashamed of. But you are the best judge about who you want to share this with. Glad you shared it with your friends on this forum. Best of luck to you.

Mika

I was very relunctant and embarrassed to share my situation at first. Ironically, it got around and I had people coming out of the woodwork telling me they had surgery etc. 17 years ago and giving me advice and encouragement. Even my brother-in-law had RRP and I did not know about it. It was through others who had gone through similar circumstances that I learned about DiVinci and changed my mind from one form of theraphy to another (I am not saying that my form is right for everyone - each case is different).

The more you can talk to others who have gone through the same circumstances the more comfort of mind you will be, and the clearer your decisions will become. This forum is fantastic. I am sure there are other men around you who have experienced similar situations and you do not know about it. It is nice to be able to talk face-to-face with others as well. Everyone who has been through this will go out of their way to help you. Talking to others who have or are experiencing the same issues is not only educational but is also a real comfort. God Bless!
RBAge 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04

James C./ mbshine - I am a new member and the writer in the family - my husband ( now 55 yo ) was operated by laparoscosic surgery on by Dr. Guillonneau in 02/04 at MSK  - We had another consult at Moffit Cancer Center in Tampa and decided on MSK  - I attended every meeting with Dr. G.  - He is a fact orientated doctor and explained all options - We did not get a chance to test his sense of humor -we always knew what was going on post and during surgery - Now all Post PSA are great - in 2004, husband had Gleason 7  3+4 PSA 6.8 - both nerve bundles were damaged - tumor confined to prostate and lymph nodes negative - I would recommend staying a few days close to the hospital after release - his catheter caused an infection which required IV drugs.  There are hotels close to MSK which offer reduced rates to patients and their families - we stayed at the Towers - Dr. G's nurse gave us all the info - I wantd to send this to you ASAP - as to incontinence issues - husband was just operated on in July/08 with the Advance Male Sling with great success - I will be writing more   Mrs D

Post Edited (dagger3) : 8/14/2008 12:52:30 PM (GMT-6)

I don't know if dr g will accept you for the op butI had the op in 2004 with dr g. The op was a success. all the cancer was removed. however I was left incontinent which dr g covered in his initial meeting but I really wasn't listening. For me the op was a breeze. went to sleep and woke up with a cathereder. To me this tube was the only problem. I later got an infection from it which just made the healing take longer. You overnight and if there are no complications released the next day. You have the tube in when your released. I stayed at the towers for two more days with the tube in. after I got the tube out we left the city, we should have stayed another day because i developed an infection due to the cathereder. if you have any other questions let me know. As far as my incontinence, after 4 years there is an operation to almost cure that. I had it last month and I have a 98% improvement.

Dagger

 

Just a brief note re my exam and consult with
Dr. Bernard Guillonneau at Memorial Sloan Kettering

I had a nice intake session with his senior research fellow, who administered a Digital Rectal Exam and said there was no abnormality felt.

Then my wife and I met with Dr. Guillonneau who was friendly but frank. He did not seem to have known that my wife and I traveled more than 4,000 miles roundtrip (and spent more than $2,000 for the NY trip to see him) and asked if I was local, from New York. He seemed to have little sympathy or empathy for my situation, since my obesity of my own making, and of course he was correct.

His view is that because of my obesity and thus morbidity risks including sleep apnea
and related post-surgery complications, in his opinion I am not a candidate for
any surgery, open, laparoscopic, daVinci etc, nor am I a candidate for radiation or seed
therapy. He also thought bariatric surgery means nothing but complications without committed, sincere, and dedicated lifestyle changes.


the MSK lab had not yet reviewed my biopsy to confirm at least one Gleason 7 score, and he suggested that since I will likely die of something related to heart disease, diabetes, or stroke before dying from prostate cancer, I attempt to lose as much weight as possible and have a new PSA and new biopsy in December.

My local urologist does not seem pleased with the candor of the world's leading authority in New York and wants to consider hormonal therapy or cryo/freezing procedures...

It is tough to remain optimistic especially when one knows Dr. G is 100 per cent correct, and a life of gluttony and healthcare neglect catches up with everyone..

So, that's the update I promised you....thank you all for your support and concern.

Mbshine

Although I appreciate candour in doctors there is a way to convey information without being dismissive. That you gained the impression that he had little sympathy or empathy for you shows he failed on this count. O.K. I guess the only solution is to attack the weight problem and believe me, I know how difficult this can be. In the early stages of trying to lose weight, the weight itself inhibits the exercise needed to lose weight so it's very easy to lose heart. The stomach banding op (by laparoscope) can be a drastic but successful solution which can deliver a very good result (not just for weight but is an instant cure for diabetes), but I wonder if it would cause complicates with prostate surgery down the track. The hormonal therapy should delay the progression of the disease but seems to come with weight increase side effects. But I would not be put off. If nothing else you have to be aggressive in confronting this disease.
Bill

dagger3...LV-TX...Billy Mac...
Thank you sooo much for taking the time to post. I am struggling to be positive....hauling firewood and slash, working, keeping busy, and waiting for my next step. After reading lots of posts I emailed a Dr Randy Fagin of Austin with a brief description of my MSK visit....he emailed me back a day later asking for a contact number so we'll see what happens after the holiday weekend....I'm a 7 hour drive from Austin but his reputation is good re obese patients...I don't have diabetes...keep active...and once lost 75 lbs with the Atkins and gained it back 2 years later, so I know the drill....I guess without seeming morbid or self-degradating there is a moral here for us, our kids, and grandkids. There's nothing funny about being fat. 200 has a way of becoming 250 and then the big 300....I've been up to 331 and now down to 318 but a long way to go. If I try to be totally objective I think Dr G's attitude is exactly what I should have expected. My primary care physician, the first time I met him 3-4 years ago did not mention my weight at my annual physical until I was leaving. "As for your weight, you went to college, you know what you have to do," he said. My response was, "At least thanks for not harranguing me and trying to scare me like other doctors." Deadly serious he only answered, "Give me a break. You're an adult. I'm not your mother." My wife and CEO are still the only people who know my situation. The CEO who is 40 has developed BHP symptoms and was sent for PSA and closer scrutiny this week, and thanked ME for giving him a heads up.......So, for now having been 100 per cent opposed to "watchful waiting" at least for now I seem to be stuck with it....thank ya'all again.......Mbshine
---
61 in October
DX 7-10-08
3 of 12 needle samples positive...Gleasi=ons 6, 6 and 7
PSA 4.6 but doubled in last 2-3 years...
5' 10 318 lbs
Catscans show no impediment to surgery
Initial consult 8-26-8 MSK w/ Dr Guillonneau

etc....

^{FIRST HURDLE}

AGE 61  435 LBS  DX 2 CORES POSITIVE GLEASONS OF 4+3=7   jul 14, 2008...ON HORMONES psa 4.8 5/08   psa 0.02 11/08

Bariatric Lap Band surgery done 1/20/09 at De; Sol Bariartric Center in El Pasowith Dr. Acosta.  Things according to surgeon "went smoothly with no complications, one of his easiest text book patients."

 

I was walking around the hospital with my IV drip five hours after surgery and discharged to a local motel after 36 hours. Because we are 9+ hours from El Paso we are staying in a motel prior to 10 day follow up.....onloy took one pain pill and walking 20 minutes a day in local supermarkets, malls, parking lots etc.....

 

   Surgeon said he would write a detailed note when  needed for Dr G at MSK about my recovery and how tha anaesthic went and how obesity and sleep apnea presented no problems. He said I should be positive and feels that as a fairly young surgeon...early 40s...the Da Vinci has a special terrific and great use for prostate and a few other surgeries and concurs that DaVinci is the way to go.  Frankly  the laproscopic banding lelft such tiny scars and relatively little pain  that I find it easy to concentrate on weight loss and starting a new regime....

 

    On 50 mg Casodex daily and had my second quarterly hornone injection , Zylodex ? Zydex and last PSA in late Nov was virtual zero....so now weight loss and then we'll see how many months of weight loss will lead to prostate surgery.

 

    My younger son who is married to an RN kept houdning me about weight loss at Christmas and I told him of the upcoming weight loss surgery.  The day after discharge from hospital I emailed him the tale of the prostate cancer DX and my reasons for not sharing. I have not told my son in Iraq who hopefully will be home in three weeks or my daughter. I broke down and in dribs and drabs discussed my situation with a wonderful neighbor and friend who is a retired psychologist, and got lots of supportive guidance, but mostly it felt good to share with someone other than my spouse and the CEO if my firm,,,for newcomers to my postings there is a federal regulatory requirement for "continuity" of client accounts that in a health situation the "firm" must be informed...

 

     So, in reviewing past posts I am reminded of the genuine and sincere concern of strangers who have gone before me, and in the young new year want to thank you all for candor, guidance, and support.

     I'll keep ya all posted

 

Mbshibe

mbshine, its really good to see you posting again. I am glad you are moving forward in your plans and now got things in motion for treatment. Make sure you let us know how your Journey goes...

Mbshine,
It is great to see you posting here again. There's nothing like having a plan and putting it into effect and we all hope to see things progress just as you wish. Make sure you keep us posted and all the best for the months ahead.
Bill