Welcome mbshine RE: Dr. Guillonneau

In another thread, mbshine wrote:

thanks for the swift response..so i guess I'm in the right spot...glad to be onboard. Mbshine

 

   ..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..

mny thanks.....

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

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age at dx 54 now 56

Mika
Many thanks..at age 60 I'm not ready to pack it in. For regulatory, ethical, and just plain friendship reasons I decided to share the diagnosis in absolute confidenced with the CEO of my company. He has been thoroughly supportive, even to the point of calling me today to let me know his zillion frequent flyer miles are available for consultations and followups from NM to NY which will be a large financial load.....so, I'll read and learn and find this forum quite amazing.

mbshine

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

RB...thanks for keeping me focused...I actually mentioned to two guys I know who had radiation "seeds" that I was going for the prostate needle biopsy. One actually called me a few days before the procedure to wish me well. I have seen both since the biopsy and neither one asked me how it went, or the results, so I chose not to volunteer the results....along your line, MSK asked me to carry Catscan films to them but to have my local Hopsital Lab Fedex "the petrie dishes" of culture. So I walked into the lab with my own note of instructions., They had me wait. And the director of pathology walked into the lobby and introduced himself. he said, "I know what they need, I will call New York to make double sure, and by the way, you are doing the right thing....everyone has different views of Gleason scores and different evaluations. In your situation--as a pathologist myself--I would want a second review, and it doesn't get any better than Sloan Kettering." We shook hands and I started to leave but he turned back and added, "I don't know you, but let me say, get this surery over with. I have two friends who decided to 'wait and see' and both were dead within 10 years, so do what you have to do.!" I was passing the admin office on my way out, and stopped in to tell the administrator's secretary to tell the big boss that Dr. X in pathology was a total gentleman and asset to the hospital.

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

Mrs. D
Many thanks...ironically his nurse or secretary suggested helmsley medical tower at presby hosp, two blocsk from MSK and we had no trouble booking rooms pre consultation. Not cheap but by NYC standards probably the only bargain in Manhattan. We meet with Dr G in 10 days.
Met today with my local urologist in Taos Dr. Alden Cockburn (for obvious reasons pronounced "Co-burn) who actually came here from Tampa and trained at Tufts and MSK 20 years ago and thinks I have made the right choice. He also suggested that despite the 1-2 day window my wife and I should plan to stay close to MSK around 5 days...he said flying to NM and recuperating at my home which is at 9,000 ft altitude should be no problem.
So, now because of my obesity we'll see if after an initial consultation Dr G accepts me and schedules the surgery. Dr C suggests that AFTER successful surgery I email both my sons, including the one in Iraq, tell them the whole story, and suggest that starting at age 40 they make sure they get PSAs. Catheters, anaethesia etc scare the heck out of me to the point that my blood pressure is super high since the cancer diagnosis, and 20-year dormant psoriasis has flared up, but as Dr C said today, "great hospitals are fine, but when you find a great surgeon even physicians, even urologists at some point hand the surgeon their file and say, 'do your thing, make me well, I am totally in your hands.'"
This forum and folks like you and Mr D have been a wonderful way for me to connect with people who actually can relate to these issues..all my thanks and good wishes for Mr D.
Mbshine Angel Fire, New Mexico

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
thanks for the heads up and good info...........I'll keep ya all posted
Mbshine

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

Mbshine...I dunno...I guess I am upset at this point in hearing that one of the leading doctors in this country didn't even have the attitude that you deserve.  Sure the weight would be a problem for robotic (not sure about other treatments) but the feeling I get from your post was he just didn't give a darn about your situation and pushed you out the door.  I am sorry...that is just wrong...plain and simple.

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

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1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable
PSA August 08 <.001 undetectable

Every time I see an adult on a bicycle I no longer despair for the human race.
H.G.Wells

MBshine - do not let one doctor change your focus on finding the way to conquer this disease.  While Dr. G operated on my husband,  this does not mean he is the only one.  Plus, my husband was 6'2" and 260 lbs when he was operated with the robotic surgery.  Consult with other doctors as soon as possible. We had first went to Moffitt Cancer Center in Tampa for a second opinion and went back there for the Advance Sling operation last month.   See if you can do the inital consult with new doctors by email or by webcam - you never know unless you ask.  That is one thing that I learned throughout my husband's journey - you must keep on asking, knocking on doors to get the answers to your questions, read articles for information that the doctors seem to gloss over -   You will find the way please keep us in the loop. mrs d 

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
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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....

My doc at Hopkins has no sense of humor either but will go the extra 150 miles for a patient. It's Dr. Pat Walsh. He made me lose 30 pounds before surgery and pushed for open, even though he was sure it was contained and Hopkins does do the robotic. about two months ago the science section of The NY Times had a major story about a large number of people doing robotics who are developing more side effects than open months down the road. I'm not advocating one over the other. I had open and was still back in the office the day after the drains came out.

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Diagnosis 7/07
open radical 12/07
PSA pre-op 1.4 gleason 3+3 clean margins
First psa post-op 3/08 0.006
Second psa post-op 6/08 >0.01

^{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

Hello mbshibe, and welcome here. you quickly found out i see that you are no longer along in your situation. there's a bunch of here and we are friendly.

you situation is a bit more complicated because of the weight. i had open by choice, but have been told there are certain obesity restriction in particular with robotic. not to put a damper on the robotic, because, i didnt have one, and i am certainly not the expert, but now that they are getting so common and growing in large numbers, there are some stats that make it look like side affects like incontinence and ED might be more so in robotic then in open. i feel there aren't enough hard statitisic yet to draw an opinion, plus for me its over with.

i wish you all the best in your choices, decisions, and outcome ahead. it's not easy on any of us or our familes, thats for sure. it really helps to have a good network of family, friends, biz people, and of course, a good medical team you can trust.

my standard line applies, its your life, your body, and your cancer. do what is right for you.

david in sc

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4

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...

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James C. Age 61
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/07 Nerve sparing open Retropubic Radical Prostatectomy
9/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 12 mts.-.04, 16mts.-.04

mbshine
Were abouts in NM are you? I live in Rodeo Nm on the SW part of the state. I had my surgery done in Albuquerque. LRP(laproscopic) by Dr. Wayne Kuang. He is the only one so far in NM who does it. He also teaches the procedure at Presbyterian Hospital. I had 6 prior hernia repairs and he was still able to do the surgery. You might just check him out for a 2nd opinion. It could help with your travel.

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Age 65

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

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1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)