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Still shocked, bewildered and Just can't believe it!!

TonyJr
Posts: 33
Joined: Feb 2010

Hi everyone,

I'm new to the family and I can't believe whats happening to me, I've worked in the medical field 20 years now and I've taught medical assistants as well. I now find myself on the recieving end of stick, sort of speak....I can't believe whats happening to me...
I found out in 12/09 also...with an elevated PSA of 7.3 went for a second blood test and it was 7.1...not a big difference. Went to a radiantion uncologist friend of mind, and he said at 44 with a stage 1 TA I think I was a good candidate for Da Vinci so thats where I'm headed. I live in West Palm Beach, Florida and now I'm going to see Dr. Patel in Kissimee...he's suppose to be the Guru of rotobotic Da Vinci, we'll see.
Everyone here has been so informative and I thank you, I'm just still in aw of it all...I feel so vulnerable, like I lost my MOJO!! I haven't even gotten up the nerves to tell my 19yr old son who lives in LA with my ex....I figure after my surgery all goes well I'll have to let him know...he'll soon need to have routine PSA check ups...

Thanks for just reading....any responses would be greatly appreciated....I'm totally overwhelmed by this all...with all the support I have and prayer I still feel LOST!!

TonyJr..!!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Listen, I am sorry to hear you are part of this unwanted club...we really don't want any new members...but once we have them we can help and there is much here to help you through this experience from many different people and experiences. Here are a couple of positives right out of the gate.

- Looks like you might have caught this very early.
- You are young and will have a very good chance for complete recovery with very little side effects.

I am sure you have been doing tons of research and found a path. If you have any questions please ask...many here have been through what you will question or wonder about and can help. There are many good people here! Tony, you WILL beat this and chances are you will come out the other end even a better man than you were going in. I say that because this experience has to have an effect on a person and usually changes a persons perspective on life...I suppose it's different for everyone but to me it seems most people have more compassion, have more patience, learn how to enjoy or get more enjoyment out of life. That's just my personal take and maybe that is what has happened to me only. I wish you well and hope you will get from everyone on here what you need and want!

Randy in Indy

TonyJr
Posts: 33
Joined: Feb 2010

Randy in Indy,

Randy I must say first and foremost THANK YOU!!! I really mean that, your words of encouragement really meant alot to me. I've found everyone on the site to be very encouraging and I thank you all. This is a path we all would rather not have had to chart, but since we had no choice in the matter its pleasant to know that we are not traveling alone. I have a long hard uncertain road ahead of me, but with the support I'm getting from you, the site and family and friends it makes each day alittle more managable. I'm not afraid to say I'm uncertain of the things to come, but at the least I realize that I'm not alone, and thats speaks volumes in itself. Thanks again to you and everyone else, I'll keep in touch with everyone and please all do the say for me, I to am interested in everyones progress and wishing all well, I pray for you all. I'm going to see Dr. Patel (Hes a Robotics Da Vinci Surgeon) next week and I'm hoping for the best. Until then THANK YOU THANK YOU THANK YOU ALL!!

TONYJR

johndz
Posts: 33
Joined: Jan 2010

Hi Tony, just relax, pray, study, research and learn more about PC to make a proper decision to fit your situation. I was shocked when this happen to me. This forum give me a lot of hope, peace, comfortable to handle my problem. Earlier PC detection will be a big help! Thanks God, new technology, good surgery and our firends and love one will help us get over our tough time. I have Davincy in on 12/18/09 - I have my life back almost normal now( Just 8 weeks) . Since PC detection on me. I though this world is collapse, I can't sleep and worry too much. Good to read about this forum and have your love one help you to get more information if you can. My wife call hospital to find out about each doctor experiences records (Kaiser N california) - get second opinion - learn each available PC curing process to see a PRO and CON of each process and which one will be more favorable and benefit to your situation and make a confortable decision from there. Keep going with excercise to make your body heathty will be a big help for fast recovery. A lot of our friends on this forum will give us a lot supports and information on our PC journey.

Good luck Tony.

John(California)

TonyJr
Posts: 33
Joined: Feb 2010

Thank you John(California),

I appreciate your words of encouragement I'm so glad everything went well for you, I'm hoping for the same in my situation. I've more or less decided to have Da Vinci, I'm just waiting to speak with Dr. Patel, he's suppose to be the best, most PC Da Vinci surgeries
ever. One of my friends Dr. Spunberg is a Radiation Oncologist and at his advice we think
Robotics might be the best step initially because of my age and stage at this point. Time will tell once I speak with Dr. Patel and see what other test he may want me to have. I again thank you and everyone else for the kind words and direction. Please keep me posted with your recovery and I will with you all also. Again THANK YOU for your kind words and wisdom.

TonyJr.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Tony,
As others have said read, read, read about this cancer. The more you know the better you can fight it. My Dad had PC but I was still shocked when I found out. Count your blessings that they have found it early.

We are here for you with all the support we can give. If you ever want to talk to anyone just shoot us a message.

Larry age 55

TonyJr
Posts: 33
Joined: Feb 2010

Thank you Larry,

I will, I count my blessings everyday, this is really testing my belief in god and in life itself, but as they say, God will not give you any more than you can handle, it could be alot worst. I know hes not testing me, but man!!! Thank you for all your support and I wish you well, can't wait to see 55 years young as yourself...:)

THANKS AGAIN!!

TONYJR.

Trew
Posts: 892
Joined: Jan 2010

There is a proton center in Orlando, I think- you should consider it before committing to surgery.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Don't rush into surgery, or any other treatment for that matter. Take your time and find out what is right for you!

Your elevated PSA is just that. Have you had a biopsy yet?

TonyJr
Posts: 33
Joined: Feb 2010

Hey Erisian,

I have done alot of soul searching via books, friends, enternet and consultations...I think
the Robot Da Vinci is for me...reluctantly but it is what it is...

I had a biopsy done, 4 of 12 were positive...hopefully still within the prostate...bone scan negative...off to see the surgeon next week...I'll keep you all posted on my findings and progress...

THANK AGAIN ERISIAN,

TONYJR

TonyJr
Posts: 33
Joined: Feb 2010

Thanks Trew,

I spoke with my Oncologist about that and we decided Robotics Da Vinci might be better for me at this point...but thank you for your advice, I'll be sure to tell you all how it went, bad and good!!

Thanks again,
TonyJr

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Tony, As the previous posters have stated, we are here for you. It is a bit of a shock to hear those words. It sounds like you caught this early and i wish you all the best as you move forward with your treatment. I am 47 and found out in November, just had my DaVinci surgery 4 weeks ago. We told our kids up front (19 yr old son and 16 yr old daughter). I think the approach you take is huge. When we told the kids, I gave them all the info to emphasize that we caught it early and that it was treatable and potentially curable. They had some questions, especially my son, but all in all the conversation was a good one.
My surgeon said something to me on the day he told me the news. He said, "Don't look at this as the day you were diagnosed with Prostate Cancer, look at this as the day we saved your life."
Take Care and God Bless,
Joe

TonyJr
Posts: 33
Joined: Feb 2010

Hey Joe,

THANK YOU, I appreciate your support, I'm waiting to advise my son because he lives clear cross the country and I don't want to alarm him right now, theres nothing he can do and I don't want to worry him. I'll probably tell him once my surgery date is set, hopefully next week sometime, but thank you again for the advice and encouragement. I'm glad everything went well for you, please keep me posted with your progress. I appreciate anything you can tell me about the surgery itself. I must say your Doctors words were very well spoken....and yes he is right about that. THANK YOU AGAIN!!

TONY JR

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Tony, The day prior to the surgery I was on a clear liquid diet and then in the late afternoon, I had to drink a 12 oz bottle of a bowel prep. It was not that bad actually. The stuff you have to drink for a colonoscopy is much worse. My surgery was slated for 730AM so I needed to be in the hospital by 6AM. They took me to the OR and the last thing I remember was them putting the mask for anesthesia on my face. I do not really have any recollection of the recovery room (although the nurses said I had them laughing with whatever I was saying). When I got back to the room they gave me a non-narcotic pain reliever (toradol). Got an okay night of sleep (they wake you every couple of hours to do vitals). The next morning had a light breakfast, got up walked around a bit, and then was discharged by 11am.
I would have agree with many on of the guys in this forum, that the catheter for the week after the surgery was the most annoying part of this. Not painful, just irritating and annoying. I ended up with 6 incisions (4 small ones along the lower abdomen, one at the navel, and one a little higher to the left. For pain, the most I took was some tylenol. My doc prescribed percocet, but I decided not to use it. I had it once before when I had my gallbladder removed and it made feel way too loopy.
I was pretty nervous and anxious about the surgery and the level of pain, but it was not as bad as I expected (and to be honest I usually don't do well with pain).

I know this is a bit long, but I hope it helps give you some idea of what to expect. If you have any questions, let me know

Joe

Kentr
Posts: 111
Joined: May 2009

Hang in there, we are all here for you.

Kent

TonyJr
Posts: 33
Joined: Feb 2010

Hey Kent,

THANK YOU for your encouragement, and it is very comforting to know I do have friends I can reach out to that are aware of my concerns. THANK YOU, again for your support.

TonyJr

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

Hi Tony Jr.

When you found this site, you got a darn good start on getting your MOJO back. I think you will find that this site is a big help as you go forward. Don't feel lost, as you are on the same road as many of us. A great number of us have felt lost at one time or another as we have traveled along, but there is always someone there to help you along.

As someone else posted, take your time and look at all options. Treatment is not a one size fits all thing. There are many thoughts and opinions out there,and it can get confusing and possibly frustrating as to what to do. I wish you well in your selection of treatment.

When I found out I had PC, I told my kids, who ranged from 18 to 28. It was one less thing to have on my mind, and they were going to find out sooner or later. But that is the old one size thing.

Please keep up the posts. We are not experts here, but we have a pretty close relationship with PC. Keep up the good fight.

Dakotarunner POPC!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

"Don't look at this as the day you were diagnosed with Prostate Cancer, look at this as the day we saved your life."

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Randy,

Yeah, it really helped me through the process to think of it in those terms.

Joe

TonyJr
Posts: 33
Joined: Feb 2010

HEY DAKOTARUNNER,

I'm sure your right about getting that MOJO back, lord knows I miss it...kindof feeling lost without it, not to mention my fiance misses it also....lol I THANK YOU for your support and encouragement its well needed and appreciated I promise you.

As far as treatment is concerned, I think Robotics is the treatment for me, its seems overwhelming that most everyone at my age and stage has decided to do. Plus my friend a
Radiation Oncologist feels that might be the best for me and I trust his opinion....I work in the medical field and ironically I use to work as a MOHS TECH, dealing with patients with skin cancers. How ironic is that, now I'm the patient.....WOW talk about curves!!

I wish you the best and please keep me posted on your progress as I will you also. Again THANK YOU for your support and kind words.

Thanks again,

TonyJr

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Of the four cores that were positive, what was the involvement of each?

Suggest that you get a second opinion from an expert in the field (Dr. Epstein, Johns Hopkins is a good choice) on the parrifin blocks from your biopsy so that you will not be under or over treated

Ira
Active Surveillance at UCLA
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Reaching one year aniversity of diagnosis

nb's picture
nb
Posts: 12
Joined: May 2009

I had my surgery with Dr Patel on 8/18/09. It was my first time in a hospital and surgery of any kind. He and his staff were great. My recovery went very well and they helped me all along the way. You'll be in my prayers.

TonyJr
Posts: 33
Joined: Feb 2010

NB,

Thank you so much for that information, my surgery is scheduled for May 10'...I'm terrified, its my first surgery or hospital stay of anykind and I'm nervous as all get out.
My only reluctance is as you know he schedules 12 weeks out from biopsy date, GOD I wish I could get this over already. I'm a stage 2....Gleason 6...Hes says everything is ok, but as you know until its all said and done you worry....Plus to add insult to injury my employer is laying off so now it looks like I may need Cobra or have to go on Cobra before or during my procedure time...I tell you its a cold hard world out there...I'm glad everything went well for you, I pray my experience is the same....

TonyJr.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Did he have a MRI with coil or spectroscopy done to see if it's for sure contained. If you have no papable nodgle then it's probably contained with that gleason and PSA...but like you said there are no garauntee's. Sorry to hear about your employer laying off in the middle of all this that cannot be good.....hopefully you will not be unlucky on this.

How did the conversation with your son go? I have one also living with his mother my ex 650 miles away...I told him just prior to having the surgery and then called him from the hospital room about 15 minutes after arriving to let him know I was fine and everything looked good.

Randy In Indy

chorton581's picture
chorton581
Posts: 15
Joined: Dec 2009

If you have questions about the whole process email me. I just finished up 2 weeks ago with my surgery. I have pictures too.
chorton581@gmail.com and we can talk on phone too if you want

bdhilton
Posts: 759
Joined: Jan 2010

From the sounds of your staging etc… you have time on your side. Surgeons want the prostate and colon to heal after the biopsy (I hear a minimum of 8 weeks is good)…My surgeon scheduled me out 12 weeks as well from the biopsy. My surgeon was William Catalona (#1 RRP open surgeon in the world and the one given credit to perfecting the nerve sparing process) … Biopsy was Dec 4 09 surgery was March 3 10… Tomorrow (in theory) I get my cath out and the results from my surgery and I am somewhat anxious of the results…Anyway it all sounds positive for you that your surgeon is giving you the extra time to heal prior to surgery plus he has the experience and great stats you want from a surgeon… Best to you in your journey

BD-Clinical 12/28/09 (Atlanta)-T2B, Gleason 4+3, Palpable nodule Right base and mid. PSA-2.82
Clinical 03/02/10 (by Northwestern)-T2B/C, Gleason 3+4, Palpable nodule Right base and mid. PSA-2.82

Feb2010
Posts: 51
Joined: Mar 2010

BD,
Please give info for Dr. Catalona.
Thanks.

Trew
Posts: 892
Joined: Jan 2010

Tony, I read your other post on your insurance situation. I wish there was a way I could help. I read stories like yours and I feel about as helpless as a man can feel.

For what it is worth- I'm pulling for you in every way.

italmensch4one
Posts: 1
Joined: Mar 2010

Hi Tony,I just found this site today,it's good.I was diagnosed in Dec./08 with aggesive pros. cancer.Went for robotic surgery 2/09,so I'm sitting here a year later talking to you.I can relate to what your going thru,most of the people on this site have been there also.Some real nice messaging going on.Let me say I'd be happy to help anyway I can.I can write and repeat most of the good things said already,but each individual reacts differantly,to it all.So you ask me anything you want,whenever you want.If you want to talk personally send me your phone number and best time to call,glad to reply 1 to 1 is good.I have done that a few times already.I can write and write,but you know bud,it's really easier for you to dump and ask the questions.I'm here to do what I can for you.I hope the best for you,stay positive,do everything you can to make yourself as comfortable as possible at this time.Best regards Ron

clrwtr
Posts: 9
Joined: Jul 2009

Tony,
Sorry to hear about your situation but you are in the best hands with Dr. Patel. My PSA went from 2 to 9.1 in a 6 month period, my biopsy showed a gleason of 4 + 3 =7, two samples of 12 were positive. I decided to opt for robotic surgery and wanted to seek out the best surgeon possible. Fortunately for me, my neighbor who also had prostate cancer, told me of his son in law who was a design engineer on the de vinci robot. Dr. Patels name emerged as one the top robotic surgeons in the country. Fortunately for me he is only an hour and a half from where I live in Clearwater Beach. Long story short, my surgery was November 6 and within two weeks of the surgery I was having erections and within 90 days I was fully continent. I found Dr Patel and his staff to be excellent. Their pre and post op program covers every aspect of recovery. I can't imagine anyone providing better care than Dr. Patel an his staff. His surgical technique has been developed by him after more than 3,200 robotic procedures and is in the opinion of many the best in the world. My post op gleason was 4 + 4 = 8 with tricirary of 5. My last two psa tests have been less than .001. I couldn't be happier with the care Dr Patel and his group have provided.

Please feel free to contact me at meredithintl@aol.com.

kurt57
Posts: 6
Joined: Mar 2010

Tony, I feel for you brother. I am a patient of Dr. Patels also. I was diagnosed in Nov. 09. 4 of 12 were positive with a Gleason of 3+3. At 52, I was in complete shock. It was discovered due to my PSA going to 4.1. I met Dr. Patel about 6 weeks ago and I am scheduled for surgery next Tuesday. Like so many others, I think about it alot. My mind has moved from my issue to my wifes, as she was diagnosed with breast cancer a couple of weeks after me. We have both been healthy are whole lives. This just caught us by surprise. We feel blessed that we were both caught early and expect full recoveries.

As for Dr. Patel, I was so impressed with him, the facility, and the staff. I look forward to getting this done and over with. Please feel free to contact me with any questions that you may have.

I research all the other options out there. HIFU, Proton radiation, Seeds, etc. My urologist, who sent me to Dr. Patel, said he'd might as well shoot me if I chose anything but robotic surgery. At my age, it is the correct option. He guaranteed me that I will not die from this. I may get hit by a truck on the way to my appointment, but I will not die from PC.

Keep me posted on your situation and I will let you know about my experiences.

I can be reached at bbgi@att.net

Feb2010
Posts: 51
Joined: Mar 2010

Please give contact info for Dr. Patel.
Thanks.

TonyJr
Posts: 33
Joined: Feb 2010

Dr. Patel, Vidul
410 Celebration Place Ste. 200
Celebration, Fl. 34747
Phone: 407-303-4673
Fax: 407-303-4674

Any questions please let me know

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