We went ot Cleveland Clinic yesterday

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qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 9:09 AM (GMT -6)   
We went to Cleveland Clinic and met surgeon yesterday. My husband and I are happy with what we saw and what we heard.

The surgeon told us that with my husband's age, psa, gleason score, and stage, both radiation and surgery will work fine, but surgery would give little more option down the road. His did about 800 robotic surgery for PC and have never had a case needs to convert to open. He said 80% of his patient who are under 60 would recover from ED in a year. Incontinence will fully recover in a year as well for 90% of his patient if they keep working on their pc muscle.

Of curse the surgeon likes my husband as a patient as well because my husband is young, healthy and fit, would be a good surgery candidate.

also, both of us like the environmental in the hospital, the interior design is looking great, the service is good. Plus there are couple nice tea/sushi bar and spa store one the first floor are nice to spend time at.

On our way back, my husband ask me to cancel his another surgeon interview scheduled in next week. He doesn't bother to take look at another one.

We are glad that things go well so far. We almost want celebrate for fund a good doctor that he likes.

Well, from day one when we know we have PC, we celebrate every single day we spend with each other, with kids and family. We are able to see more beautiful thing that GOD give us that we couldn't see before and enjoy more of our life. In another word, PC is one kind of gift.

I am so glad that I got so much help and support from everyone here. Without you, our war with PC would be lot harder!

I know we have more to fight at next step, surgery and recover process. So we keep up and hope everyone keep up and keep positive on your own journal too.

Best wish for everyone.

Jennifer

Post Edited (qjenxu) : 10/23/2009 9:14:44 AM (GMT-6)


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 10/23/2009 9:26 AM (GMT -6)   
Jennifer,

I remember not so long ago seeing your first post on another site. It was there that I first referred you HW. I am so happy for you and your husband that you found this wonderfully supportive and knowledgeable bunch of folks.

I too am happy that you took the advice freely offered here to widen your scope of areas to look for a doc for your husband. It sounds like you guys are extremely happy with your visit and your choice. The confidence that comes with that decision is a huge plus going into surgery.

Your post has really brightened my day. Thank you. I look forward to your continued posts as you guys continue your journey.

Prayers and blessings are following you and your family,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 10/23/2009 9:36 AM (GMT -6)   
I would really question the numbers your surgeon gave you. There is no study that gives these high of rates for ED and incontenence. Even at Slone Kettering, 40% of all surgeries are considered failures, defined as no cure, permenant side affects or surgical complications. (Scardino)
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 10/23/2009 9:38 AM (GMT -6)   
Jennifer, Good luck to you and your husband. Did you schedule a date with the robot?

Larry
Age 55 / age at diagnosis 54, PSA 5.1
Biopsy 04/08/09 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 10:00 AM (GMT -6)   
Thanks Sonny and Larry, you two are the first ones replied to my post when I was asking for help. I read every your post and learned a great deal and got lots encouragement from you. never forget you, in a nice way!

JohnT, may be you are right, during our meeting, there were lots of numbers speak from doctor and I could be wrong with some numbers. however, the ED rate is right because I put on my notes and also maybe I paid special attention to it?! smilewinkgrin smilewinkgrin

Also I asked about if anyone else will involve in surgery for the training purpose, he said he is the one who stay in the corner of the room to operate robot and there will be some team members who exchanges tools on the robot. the entire surgery is about 4 hours include preparation.

you know, all these number is not a must because everyone is different as they react to the surgery and recovering. As long as we know we are in good hands and working on our part (train the PC music etc.), we should get a good result.

Thanks

Jennifer

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 10:17 AM (GMT -6)   
We are waiting for the surgery date confirmation from doctor. the soonest is middle Nov.

by the way, they use new robot that will have total 5 incisions.

Post Edited (qjenxu) : 10/23/2009 11:08:36 AM (GMT-6)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 10/23/2009 12:18 PM (GMT -6)   
It is great to hear your enthusiasm. I wouldn't worry about statistics -- you only get to have one operation, not like Atlantic City where you roll the dice again and again.

For now consider a program of modest improvement in exercise and diet. There is no strong evidence to support this but I think fighting the beast is a great attitude improver. Oh, and if I may be rather personal, frequent exercise of the parts likely to be affected by ED is another positive step for both of you.

Keep us informed and call on us as needed.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 10/23/2009 12:50 PM (GMT -6)   
I agree 100% with Geezer99 on his comment on exercise and diet. When I found out I had cancer back in the spring, I changed my Diet, started exercising and had lost 35 pounds by the date I met the Robot. The robot Said I looked real 'sexy' being thinner again! LOL.

Did that help my outcomes? Who knows but I feel the best that I have in years.

Larry
Age 55 / age at diagnosis 54, PSA 5.1
Biopsy 04/08/09 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4083
   Posted 10/23/2009 1:03 PM (GMT -6)   

Jennifer:

I am glad that you and hubby found a doctor you can trust and I truly wish you the best.

However, like JT, I would advise you to be a little skeptical of the promised SE's as they look optimistic to me.  I recently read data from a world renowned surgeon at Johns Hopkins.  Based on 2800 surgeries, his stats showed that about 57% of his patients aged 40-57 who had both nerves spared returned to baseline sexual performance after one year....and the was bragging that was fantastic.

I hope your guy's numbers are right, but please just be realistic and patient if they are not..

Respectfully,

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 1:23 PM (GMT -6)   
Yes, I totally agree with guys, we wouldn't count too much on those pretty numbers as we know, there are casualties from the PC surgery: leak & ED. If my husband has to deal with pads and blue pills for the rest of his life, as long as he is healthy, I consider we are lucky.

Jennifer

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 2:53 PM (GMT -6)   
just got confirmation from surgeon, Nov 17 is the surgery date.

He usually do 4 surgery a day. can't set surgery time yet because have to work with hospital before the surgery day.

we have little more then 3 weeks to prepare.

Jennifer

qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/23/2009 5:16 PM (GMT -6)   
Dear OhioState

thought my husband never post here that you don't know him much. He is a guy who pay attention to surronding environment. for example, he has to check hotal's wall paper to make sure he is ok with it and furniture in the room before he book the hotel room. So the sushi bar and interior design are his criteria. Of course, I have similar interest with him, that's why we are very compatible with each other. Sorry off the topic little bit.

The choice is made by him and please respect the difference between you and him. Also, I suggested him to see Dr. Fred Lee after I talked with you on the phone but my husband doesn't want to go.

Thanks for you kind concern.

Jennifer

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 10/23/2009 5:39 PM (GMT -6)   
Please post again two years from now.
I wish you sucess in this PCa jungle, words coined by Robert Young (www.phoenix5.org) you might wish to see his website, I presume it is still running. Another guy you might want to read about is Aubrey Pilgrim (has book out on his PCa experiences, too) and a well informed patient.

Do discuss the trials and tribulations that can occur in this partnered journey you are both taking. Purgatory herein can give you first hand info of his own experiences, which is quite a journey and continuing from what I can see, not all cases are the same or even sometimes comparable...to many parameters. Best to you in whatever you choose.

Post Edited (zufus) : 10/23/2009 5:43:00 PM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/23/2009 6:00 PM (GMT -6)   
Jennifer, glad to hear that you and your husband feel so comfortable with the hospital and doctor. Like others have said, I would urge caution when listening to the doctor's statistics about incontinence and ED ... I think the doctor was just a bit over optimistic in these areas. No doctor can or should promise any particular outcome, no matter how many procedures he (or she) has done.

One of the things I have learned on my journey with my husband is that this is his disease, not mine. He has to own it and decide what's best for him. The best I could hope for is that he's also including me in his decisions - which he does do. When we thought he needed radiation after the surgery, I started making phone calls and getting information pulled together for him. My John, patient and kind that he is, looked at me and said "Jo [that's my name, by the way], it's my body and you have to let me make the decisions about how to treat it." Easy for him to say as he's not a control freak like I am!

Seriously though, this is a joint decision - and a very important one. There is always a better doctor out there or a better hospital. You could spend months waiting to get an appointment only to find out that you don't like the doctor. Once you and your husband have made your decision, stick to it no matter what anyone else says to you. And remember that what is given here is advice only based on personal experience - none of us has a crystal ball that shows what the future holds.

Get your husband ready for his surgery, and take good care of yourself - he will need you strong to help him through the recuperation.

Keep us posted.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/23/2009 10:47 PM (GMT -6)   
Great news, Jennifer --- delighted to hear you're underway.

The email I sent off for you remains unanswered. I wonder if he's off in Europe, or something. Knowing you're now in good hands and have made a decision is excellent.

I don't think an 80% ED recovery rate for those under 60 is too high a number, but, what do I know?

The number that surprised me was the 4 hours for da Vinci surgery --- especially if he's done 800 of them. From the time I was knocked out, until I awoke in the recovery room, was two hours. After I was 'under' they prepped me in 20 minutes and the surgery itself was 70 minutes. These numbers were the ones I was given after surgery, and I sent a fax to the surgeon a couple of weeks ago asking some questions and asked him to confirm the time. He looked up his surgical report and I'd remembered the time correctly. The less time spent under anesthesia the better.

Now, on the decor question I totally agree with your husband. A hospital that cares enough to provide amenities and cares how they look has a far higher chance of caring for patients well than a hospital that's happy with a lousy cafeteria, crummy shops and grubby walls. I'd bet there is a direct correlation between spotless clean public washrooms and success in surgical suites. For one thing, good doctors don't hang around second rate places.

You're underway now. Godspeed, and keep us posted.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 10/24/2009 2:41 AM (GMT -6)   
Did the Cleveland Clinic doc say he does four robotics a day? At four hours per case, that is a looooong day.
70 years old USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and BS
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. Mattei in the Kantonsspital
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO
3month PSA less than 0.01


DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 10/24/2009 4:32 AM (GMT -6)   

Hi Jennifer,

I hope you don't think I'm trying to scare you, but I feel a need to share my story. Not that they don't have great credentials there, the place seems to awe people with its name and amenities, but I've been a patient there more than once. My boyfriend had Dr. Gong at the Cleveland Clinic do his robotic surgery this past May. He was very impressed with the place off the bat. I was too, except I still have a BIG problem with the fact they didn't get the MRI report in time. I had called the day before surgery and they still didn't have it. The dr's assistant told me it wasn't a problem because the doctor was used to reading them himself. The report turned out to say there was extracapsular penetration. I think the doctor was negligent not to discuss this with Bill before surgery, I think he should have been told there was a good chance surgery wouldn't be successful and let him rethink it. People have told me that the surgery wasn't a waste since taking out the tumor was a good thing, but I'm still not happy with the rushed handling and haven't said anything about it to Bill. Feel free to contact me by email nosdollgic @ earthlink.net if you want, I live in South Euclid.

Best wishes to all,

Dana


SO diagnosed 4/15/09 age 47
1/15/09=PSA 10
Dx 4/15/09=Right side= Gleason 4+4=7, 40% involved, 5 out of 6 cores positive, perineural invasion present
Left side+ Gleason 4+4=8, 60% involved, 5 out of 6 cores positive, no perineural invasion present
T2c
5/14/09=Robotic surgery at Cleveland Clinic by Dr. Gong
pre-op PSA 15, MRI shows extracapsular penetration
Pathology 5/21/09-T3a, N1MX, positive margins, 1 out of 13 lymph nodes positive, left nerves spared
7/7/09- pad free
7/10/09- PSA 1.1
7/25/09-PSA .2

Post Edited (DanaA) : 10/24/2009 4:42:05 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/24/2009 6:59 AM (GMT -6)   
My husband's robotic surgery was slightly over 5 hours - that's from the time they wheeled him out of the pre-op room to the time the surgeon came out after the surgery was complete. I was not prepared for the length of the operation as the urologist told me "a couple of hours". John's surgical nurse told us the OR is booked for 6 hours and that these surgeries generally take between 4 and 5 hours. Surgeons always low-ball the operation time - they see if strictly from their own view which is how long they are actually operating.

Four surgeries a day is alot but I did learn that every major operation has a stand-by surgeon in case the original surgeon cannot continue with the operation. Our urologist was the stand-by for the surgery before John's (also a prostatectomy). His job was to be in the OR area ready to take over in case the surgeon could not continue. My husband was wheeled out of the pre-op area at 4:00 pm and I waited til 9:15 pm to speak with the surgeon - it was a long day since we needed to be at the hospital at noon!

One piece of advice I will give to you, Jennifer: my husband was very anxious waiting. He hadn't eaten, he was thirsty, and a bit scared. When the anesthesiologist came in with the surgeon to talk to my husband, I mentioned John's anxiety. The anesthesiologist told my husband that there was no need for him to be anxious, and that they had a room full of drugs to take care of that. He went out, came in with a needle filled with something and injected it into the IV line. My husband calmed down, and was wheeled out of the pre-op area a happy little camper!

Dana, my husband was also upstaged to T3a due to extracapsular extension. In hindsight, I wish I had suggested an MRI not that it would have changed our decision but it would have saved the shock of finding out that his cancer was more advanced than we originally thought.

As to Zufus' post, it is important to remember that there are no guarantees with any treatment. None of us knows where we will be - or if we will be - in two years' time. We know that the "system" is not perfect and that there are lots of variables. Jennifer and her husband are where all of us were at some point in our lives. Some came through with no problems. What David (Purgatory) is going through is somewhat of an exceptional case, and his should not be used to scare those just beginning this journey. I do not mean to down play what David is going through; quite the contrary, my heart truly breaks for our dear friend. I don't think David would want his situation to be used to frighten anyone but only to serve as a reminder that there are no hard and fast rules with prostate cancer.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 10/24/2009 7:29 AM (GMT -6)   
Yeah Sephie,

You bring up a good point. I don't want the "other side" to use my difficulties as an excuse to discourage anyone from treatment. I was told all my blockage/cath problems are in the 4% or less group. Most men never deal with that after surgery.

I would imagine I am in a small group here too that has been through full radiation treatments twice in their lifetime, so my side effects there are partial related to that.

Each man needs to have treatment or non-treatment based on their case, their stats, their body, only.

So please, I refuse to become the poster boy for not having surgery or RT. My cases and woes is unique to me.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/24/2009 8:23 AM (GMT -6)   
Sephie AKA Jo, --- excellent post, as yours always are!

David AKA Superman --- you're my poster child for how to cope should I follow in your footsteps.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/24/2009 10:07 AM (GMT -6)   
Sorry everyone if I mentioned sushi bar and wallpaper in my post as something unimportant compare to treatment. Originally my husband want the surgery done in locally but we went to Cleveland clinic anyway just for the sake of one more option. When we arrived at the check in point and was waiting for our turn, my husband realized the waiting room was the way he likes and the patients were treated nicely (compare to his urology office). When we in the room waiting for doctor’s arrive, my husband noticed the room is spotless clean, the facility is sharp (hopefully the operation room is the same way). After we talked to doctor, he said he like the doctor and would feel good to let this doctor do the surgery on him. But we didn’t make decision at that time and told surgeon we will see another surgeon next week and will finalize our decision. The doctor was totally cool with that and didn’t rush anything.

After the meeting, before we left the hospital, we walked around in the hospital to see the facilities. Everything we see was nice and makes husband feel comfortable if he has to stay here for a couple of days. Also we had lunch there and like the food as well (better to have nice food in hospital). I am happy to see my husband feel relax and comfortable and he deserve something nice since he need deal with the surgery. The hospital hotal is right on the corner if family member want to come.

On our way drive to home, maybe because he didn’t like our local urology office system or set up or doctor, he decide forget about next appointment and just get it done in Cleveland. He made is decision and I totally support him.

We have been told the actual operating time for the surgery is 2-2.5 hours but could be 4 hours including preparation.

My husband doesn’t like the side effects like leak, ed, shortage..ect. at all but we all know if we want live longer, we have to put up with. Therefore, the numbers aren’t real number until it happens to us. Whatever the result is, the cancer free is most important to us.

Well, I am really glad that my husband is in good hands. all we need worry about now is getting in even better shape to prepare for the surgery. By the way, our doctor is Dr. Jihad Kaouk.

Also, thanks for all the advises. Sephie, I'll keep my eyes on my husband to make sure he gets all the care or treatment he needs.


expecting for the best, prepare for the worst.

Jennifer

Post Edited (qjenxu) : 10/24/2009 10:13:48 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/24/2009 10:10 AM (GMT -6)   
Sheldon and David...as always, you are most welcome!

Miserable day here in the New York City area - raining but very mild. Leaves are down all over the place, and it's quite messy.

Hope you all enjoy your weekend.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/24/2009 6:18 PM (GMT -6)   
Jenny, I thought of one other thing that might come in handy for your husband's recuperation. I know some of you guys are gonna cringe when I tell this story, but here goes.

While researching "best practices" for recuperating from this type of operation, I came across something written by a man who had the surgery with helpful hints at making recuperation as easy as possible. One of the issues was wearing a nightshirt while the catheter was in because it allowed more freedom of movement without putting any stress on the catheter. I took John shopping for a nightshirt - we hit many stores in our area and found nothing. Had to put on my thinking cap: what did I have at home that would work just as well? One of my flannel nightgowns! John even tried it on before the surgery to make sure it fit (which it did). When he came home from the hospital, he would wear my nightgown around the house, and liked the fact that there was no restriction around the catheter. He didn't look half bad in it either, and even wore it when his sister came to visit - I wasn't home but would have loved to be a bug on the wall when he opened the door wearing a nightgown!

Your husband will also be on a soft diet til he has his first bowel movement. Have stool softeners on hand as they help. John was very lucky in that he did not need the pain medication the surgeon gave us, which helped the bowel situation quite a bit.

We bought all kinds of supplies - pads for the bed and incontinence briefs for after the catheter was removed. John was a bit paranoid about leaking at night, which he never did but we were prepared.

If I think of anything else, I'll post again.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 10/24/2009 7:14 PM (GMT -6)   
Sephie, lol, I will never be able to think of John the same way after your nightgown story. Sounds like a practical solution, and this is coming from the guy that's been on catheters for 125 days in the past year. Still good advice.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 10/24/2009 7:28 PM (GMT -6)   
Sephie

Thanks for the night shirt idea. What'd you think PJ? we have no idea on how the urin bag goes and if the bag needs hang on PJ?

Please post more if you could think any that could help.

do we need clean the catheter? or urin bag?

Many thanks!

Jennifer
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