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Diagnosed at 40

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Well I've been thrown into a world that only 6 months ago I was only aware of on a surface level one could say. Months ago a routine check-up with my family physician revealed an elevated PSA and well here I am today. I remember my doctor explaining to me that although most physicians start screening at 50, he prefers to test his patients at 40, even though I had no symptoms and no family history and well I had just passed over the lordy lordy 40 hill.I gave him a simple "ohhkay", went through with the test and went back to work. A week later I suffered a back injury and upon calling the office they requested I come in for a visit. It wasn't until my doctor spoke to me that I realized why I had been asked to come in for a back injury. It was then I learned of the acronym PSA, three of most influental letters in my life. My PSA level had been reported as 7.4. My doctor placed me on antibiotics stating that possibly it could be an infection, even saying, "We're gonna hope it is." I never showed emotion in the office, he even asked me if I understood what was happening. I felt as though he had been talking to someone else until I sat in the pharmacy parking lot looking at the prescription and the lab report, that's when the first realization seeped into me that this is not someone in a movie or book, this is not fiction, this is me, writing my biography as it happens. I cried softly for a few before talking to my fiance, who felt the reality immediatly. You see we had plans to be married on October 2nd in the Upper Peninsula of Michigan. We had endured many bumps in the road for years to get to this point, but this was definately the largest, our Everest. She insisted at first we stay behind and find answers, at which time I challenged her with the idea of seeing what we can today and enjoying ourselves. I've wanted to marry my best friend for years, and this was an ideal time as far as I was concerned. I went back to the lab weeks later and had another PSA test completed only to receive the results two days before we were to leave for our wedding. The letter read,"PSA 4.7, still too high for your age, please see Urologist." On September 26th we pointed the car up 75north and headed for the serenity of the UP. We married in the most remote area anyone could ever imagine, far from anything modernized and societized as I like to say. It rained drops of ice that day, but it subsided just as we stopped under the trees to begin the ceremony. We exchanged vows promising to love one another and care for one another in all aspects of life, and words will never describe how beautiful my wife was that day, a beauty you could only see by looking deep through her eyes. The rain began again once the ceremony ended showing us that there are certain powers in this world that coperate if even for a moment in life.We spent the rest of the week with our eyes wide open , flooding our senses with all the beauty our mortal bodies could handle. During our trip we never discussed my health, the future, not once, it was our truce and my request. Upon returning home to Atlanta I immediatly made an appointment with the recommended urologist at Emory. He was very concerned with my PSA vs age and recommended a biopsy,at which I gave a decisive "yes",if anything to end the uncertainty. I had never informed anyone other than my wife at this point so it was beginning to become very difficult to keep the whole process secretive. I asked for a couple of vacation days off via email without an explination at which time my boss gave an unknowing response,"Approved! Have Fun!" On November 12th I had my biopsy ,the urologist took 18 cores during the procedure. I came through just fine minus the pressure, clots, bleeding etc. By November 14th I had no signs of blood and felt much better, now it was just the waiting for the appointment on November 20th. I slipped back into my books and music and held my wife's hand to ease the nerves and await the news. November 18th I started bleeding again during the day, out of nowhere. I quickly scanned through my head my daily activities looking to see if I had strayed into anything streneous, nothing came to mind. That night I could not urinate and the pain was becoming excruciating, the blood was bright red and I became faint. I rushed to Emory to learn that I had fallen into that 1% statistic of men that have complications from a biopsy, why couldn't these odds follow me to the lottery! I was up all night enduring something I'm sure could have been used in a Robin Cook medical/horror novel, the manual removal of clots via syringe and catheter. This procedure went on for an hour or so, only the bed rails that I gripped probably kept the time. The next day I was released from Emory catheter still intact. November 20th my wife and I drove to the doctor's office holding hands. He had assumed that the staff at the hospital had informed me of my results so he inadvertly spoke of my cancer as he assured me he would take out my catheter. My wife broke into tears and me, well I stood there and accessed the situation with no reation due to the shell that had just exploded next to me. My doctor was very nice, comforting, I have nothing but kind words for him. He handed me a packet entitled "Understanding Prostate Cancer" at which time I simply stared. He stated that I am the youngest patient he has ever diagnosed and I should thank my family doctor for early screening, which I am planning to do this week in person. He answered all of our questions and without hesitation recommended removal of the prostate due to to the lab results and my age. 8 of the 18 cores contained cancerous cells, Gleason score 7. I have had a few moments with my wife, both fun and crying. I disclosed everything to my boss, who was very supportive, my parents who naturally are extremely worried. My outlook is very positive though, we caught it early in life,I'm healthy and it gives me an advantage of beating PC. I've got the support of my best friend and wife, who has held my hand from the beginning and inspires me. My four children who bombard me with both love and the requirements of a father, which tend to motivate me. Right down to my big goofy rottwieler who covers me in kisses everytime I'm sitting there in thought. I have CT and bone scans scheduled for next week, then another sit and wait, which seems to be the hardest part in this juncture of PC. I'm open to talking to anyone about treatments,experiences,doctors,etc., the more I can absorb the better! I'm extremely pleased with the treatment I've received at Emory here in Atlanta so far and would like to continue. Again this is all so new to me, I expected turning 40 would bring some new milestones in life, but not a challenge like this one. I think we somehow got dropped off in this town of Prostate Cancer, on our way to some more prosperous and healthy metropolis. We never knew our ticket didn't cover the full route, so we had to step off the bus in this little place. There's no application for residency and no vote for admission, just coincedence and chance. We go and play the hand that we are holding, which is a little better than the hands that the folks are holding on the stops on down the route. I'll always reside in this town even after I finish my hand, if for anything to help the rest of the men that continuously get off the bus.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Olee,

Although your diagnosis was early in life, you are not the first one in their 40's that has joined this "Club no-one wants to belong to".

My best advice is research, research, research!!! Both the Doctor's background and experience as well as the options. First and foremost, you and your wife MUST be very comfortable with the surgeon or onconologist you select.

I am a 7 3/4 yr survivor of a "Radical Prostatectomy" (Never did like that term) and would elect the same option again if necessary. My surgery was performed at Vanderbilt Clinic in Nashville and , as far as any surgery is concerned, was very tolerable. Surgery one day, two nights in Hospital and rode home (5 hrs) without needing any pain meds. My wife and I were very concerned (at 58) about our intimacy following surgery, but elected surgery vs. seeds because we wanted the cancer out of our lives, so to speak. As it turned out, our choice was excellent!!! Our sex life resumed within 3 wks following surgery and has not diminished yet. Keep in mind that this was before the time of robotic surgery, which is now considered the "Gold Standard".

If you have any questions, you would prefer to ask privately, don't hesitate to e-mail me at this site.

Best of luck and know our prayers are with you and your loved one.

Roger

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks for the support. Stories like your own give me hope everyday, and encourage me to continue researching my options. My doctor downplayed the robotic surgery to a degree stating that sometimes it's good to be hands on, but that if I wanted to pursue that option he could lead me in the right direction. As mentioned in my story, my wife and I are basically newlyweds even though we have been a couple for years, so intimacy is an extremely important issue with us. My doctor encouraged me to have surgery within 6 weeks, so I am looking into options everyday and have already begun the planning. Thanks again for the support!

whubbs
Posts: 77
Joined: Sep 2008

It's one thing I've come to appreciate since being diagnosed and subsequentally treated by
robotic prostatectomy only 2 weeks ago now, is the desire to help other men who have been diagnosed and face the same 'bump in the road' that I'm managing now.
Please don't hesitate to email me at cobrabite427@yahoo.com if you'd like to discuss the
robotic prostatectomy, like everyone else that educates themselves upon their treatment, I would be more than happy to relate my own experience and education to help others.
Good luck and look forward seeing your posts and/or emails of your progress.
-Wayne

sjrayfie
Posts: 1
Joined: Jan 2009

Hello my name is Scott and I live in Portland Oregon. I have a Robotic Prostatectomy scheduled for Arpil 6th. I have no symptoms and the surgery is far enough away that it seems this is a dream. I have done a lot of research about the surgery decision but I have not discussed anyones experience that has gone through the Robotic surgery.
Please reply and I will try to keep a dialogue going.
I do not check my home emails often...try scott.rayfield@co.multnomah.or.us
Thanks and hope all is well with you.

zackpar
Posts: 1
Joined: Dec 2008

Olee:

I had a family history of prostate cancer and always knew at some point I would probably get it but not at 45. I went in for a routine physical and the doctor did a DRE on me and was not pleased with the irregularity of the prostate and then told me a few days later my PSA was 3.6 but was not sure if it was cancer. He referred me to Baylor Urology Clinic, Dr. Dov Kadmon. A biopsy was performed ( that was the worse thing I have ever experienced in my life--reminded me of a roofing gun going off in my body!!!!) He took 12 samples and 8 out of the 12 were cancerous. My wife and I met with Dr Kadmon and he explained to us that I really had only one option at my age and it was to remove the prostate!!! The surgery was scheduled for June 9th, 2004. I am grateful that the cancer was confined in the prostate capsule and have been blessed with a very low PSA score for 4 1/2 years. I would be happy to discuss the side effects with you if you are interested.

Zack

lion1
Posts: 240
Joined: May 2007

Zack,
I had an LRP in 2006 at 46 and the surgery went well--cancer gone--but incontinence remains, after 2 and1/2 yrs, I just had my urologist inject me with collagen yesterday, we'll see what happens, but today I am still leaking. May have to inject again in 4 or 5 months. I am using this approach, because a sling and Artificial Sphincter seem too extreme for a guy who is active and only 49yrs old. Plus I have read that those devices are not full-proof and I seem like I rather drip, than suffer infection or undue pain. Your thoughts? Experiences? Others you know?

Thanks,
Lion1

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks again for the feedback and support. The roofing gun scenario used to compare in the biopsy made me laugh, so true. I hated that procedure, mainly because I had complications. A week later I start bleeding out of nowhere so to keep my system clear I start drinking more water, a few bottles maybe. Hours later I'm bleeding but can't urinate, what an experience in pain that was! You can see how I may be a little nervous going into any surgery. I'm having scans done Friday so I suppose I'll go from there as far as treatment and timeline. I am however about 99% sold on robotic surgery.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Olee,

I know I am speaking for all that have responded when I say that we are all praying for good results, and that God will lead you in making the right decision. I also know that you and your loved one are extremely apprehensive, but remember God does not give us more than we can handle.

Roger

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks for the encouragement Roger. I spent the day at the hospital yesterday getting CT and Bone scans, now it's a sit and wait for those results. I am ready to choose the DR and the surgery date, so the sooner that's set the more defined focus I can project. Again I appreciate all of the support.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Olee,

Please keep us posted on the happenings in your life.

Roger

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

I'm one of those rare individuals who loves an occasional rainy day, not just sprinkles, I mean a soaking, cold, all day rainy day! I woke up yesterday to one of those days and instead of going to work I wanted to sit back and read one of my books, drink another cup of coffee, savor the weather. I had been waiting since Friday to hear of the test results and the pending news was making me a nervous wreck to say the least. I don't know if it was my expectations or the expectations of my family, thier calls asking, " Have you heard anything?" that had me on edge. Finally as I was at work my phone rang, my familiar, "The Good, The Bad, The Ugly" ringtone, how fitting, which bit of news would I recieve? The nurse explained that the letter would reach my mailbox anyday but that she would read it to me over the phone. I took a deep breath as she read, bone scan, no sign of metastasis, ct scan, no sign of metastasis, please make appointment with surgeon to schedule discussed procedure. I was elated, I had her read it again and then I said thank you as if she had somehow decided my fate. This was definately an ace I was dealt and I can win with this hand. Yesterday I somehow felt as though I had an upper hand or a head start on PC, and I can definately beat it going from here. I'm making appointments right away with surgeons, and hope to set a date as soon as possible.

whubbs
Posts: 77
Joined: Sep 2008

Awesome news! Feel free to call if you'd like, I'm 3 1/2 weeks out and feeling good again.
-Wayne

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Olee,

Incredibly good news. Again, keep us posted as time goes forward.

Roger

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

I had two biopsys over a 3 yr span of time. Last time I asked him to shoot all of them at one time to get it over. Did the robotic and after 3 yrs.have little problems. No sex and a few dribbles. Not to be droll but you might want to consider sperm banks for future children as the surgery will nix that part no matter what else.
Keep posting and let us know how it works out. Remember you'll get to look at the grass from the green side not the roots and that's a BIG deal.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks for the insight. I'm good in the children department, I have 4 and haven't been able to have kids for years anyway. I'm optimistic about the outcome of the surgery, I'm not banking on a 100% success of return of functions, right now the focus is living to see my kids grow older and having the opportunity to sit there staring at the world while holding my wife's hand.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Well I've been very peaceful throughout this whole ordeal, always taking things in stride and moving on, but this morning I became I bit angry. I became angry about the cancer at first, then I refocused on the plan and caught sight again of the future, then I focused the anger on some issues I've dealt with lately concerning health care providers. I'll describe a few issues here and maybe you guys can tell me if I'm just out of line or maybe I'm being a little too allowing. I'm not a "wooah me, I'm sick" kinda guy at all, but I do expect a certain level of concern from the healthcare industry. The way the news was even broken to me was a shock. I visited the doctor on a scheduled appointment to discuss the biopsy results only a day after being released from the hospital from complications. He entered the room and said, " I hear you have some cancer in your prostate." It was an assumption that the staff at the hospital had informed me of the diagnosis. My wife held her breath in shock and I just stood there speechless. He told me how my Gleason score was 7 and I needed surgery right away, 4-6 weeks was his suggestion. He informed me that scans would be the next step before scheduling the surgery. Immediatly upon leaving the office we stepped up to the desk to schedule the scans and was told, "that woman has gone for the day we'll call you or mail you a letter." My doctor called the next morning,Nov 21st (LAST CONTACT, verbally or in person with any physician) to ask how I was doing and to find out if I scheduled the scans. I repeated what we were told and he said, call them today if they don't call you back, you need those right away. I called and left messages with the urology dept. who then transfered me to the person scheduling the scans where I left more messages. November 25th my wife called and I called, both asking for the doctor to call us back, finally the nurse called us back at which time we were transfered to the scheduling woman again who never returns calls. November 26 after 8 phone calls, I finally call the switch board operator and bluntly said, " Your hospital has diagnosed me with cancer, you guys told me I need scans to find out if it's spreading but none of your staff will call me back to schedule it, will you help me? She transfered me to the actual technician who found my orders that had been faxed over on the 21st of November and scheduled my appointment for December 5th, 15 days after being diagnosed and being told that "You need these tests right away!" Of course while I was there no one told me the next step, how I would get the results, do I need to make an appointment etc, so I asked and was told on December 5th, your doctor will have the results on his computer on Monday December 8th, they will "probably" call you. Don't you love the uncertainty here? These people have treated me like it's a check in the mail or something. So Monday rolls around and I hear nothing, finally back to the phones. I call the urology department and ask them about the results and I get a "what test results?" Finally they have my doctors nurse call me back and she explains that there will be a letter typed up by the doctor and mailed anyday, but that she will call me by Wed December 10th and read the letter over the phone. Wed goes by and no phone call and no letter in the mail, so finally I call the urology dept. I explain calmly about the test at which time she interupts me and says " if you had tests done Friday the results won't be ready for 10 days and you'll recieve a letter." I tried to reason with her and explain what the radiology dept had told me, but she was forward with her "10 days" explination. She even became loud and said "sir I'm sorry, but you're just gonna have to wait for the mail!" Now this is the point where my blood pressure rose a few notches. I'm envisioning a letter sitting on a desk somewhere with my information and here's this rudacrat for hire refusing to help me. Finally I'm able to softly interupt her and explain that the nurse promised me that she would read the letter over the phone, at which time she replied,"well that might be possible,I'll see if she wants to do that for you." I was transferred to the nurse where she read verbatum the letter that the doctor had typed. From the way she read the letter it was apparent that she wasn't interpreting the information, merely relaying it to me. I was still very thankful for her words and the fact that she took the time to read aloud what the doctor had discovered. I asked where do I go from here and she told me to make an appointment with a surgeon. I called the urology dept. and made an appointment which was the equivalent of throwing darts at a board of names, thanks for the direction I thought. Believe me guys, I am very complimentary of healthcare professionals. It takes ALOT to get me to voice a frustration, my wife says I let too much go by the wayside. I simply allow for human error or bad days as I consider everyone to be human like me. This whole experience though has left me questioning if I want to continue in the same direction. I still to this day have not recieved a letter detailing my scans, which I really thought should have been discussed in person maybe in a "follow -up" visit? I have not spoken to a doctor about any results,complaints,cancer staging etc in almost a month. I would have thought there would have been at least a phone call from a doctor. Thank God for my fellow survivors and the internet or I would be in total darkness right now and have no direction. I basically feel as though someone said, " You have prostate cancer, good luck!"

train-nut
Posts: 101
Joined: Jun 2008

My compliments on being such a gentleman. My "rational" comment is that your primary care DR should be coordinating your care and fully informing you. My "emotional" comment is that you need a whole new care team , at least a couple of whom give a damn about their patients. You rate better than this and I hope you do something proactive about it. I wish you the best of health. Rich

whubbs
Posts: 77
Joined: Sep 2008

I had a very similar situation, and found that I had to educate myself first so I could ask the right questions and hold them to the fire, which you should do. Internet is a priceless source of information.
I was literally dropped from my Urologist's practice when I called them to postpone my original surgery in order to make the decision of either going with my local guy or to take the dive and go with Tewari in NYC. When I got the response of 'If you have the surgery elsewhere, we can no longer treat you for anything related to the prostate', they had essentially made up my mind for me, I have no regrets.
One thing I realized, is that these labs and offices are so big and do so many of these, that they've become human-less and feeling-less.
I also never had the opportunity to sit down with a doctor and review my test results, I also had to dig out the information from the medical secretary at the Urologist's office.
That is until I selected a different doctor, and they were more forthcoming with the information.
My suggestion is, if your not comfortable with the advice, the attitude, anything, look elsewhere.
I know it's difficult when this heinous disease is growing inside you, I know the anxiety and frustration during the waiting period, but rushing into something and living with a regret is not something that is easy to live with.
I know 2 men who did rush into their treatments, took their doc's advice verbatim, never questioned it and have regrets.
One for going with a robotic with a doctor who didn't have nerve sparring techniques in his vocabulary, and was essentially learning. I don't know, I for one don't want to be a the guinea pig, but some people are OK with that....not me.
This man still has erectile function and continency issues, and rising PSA, that's an outcome that you want to avoid, at the cost of pissing off some office staff and a doctor with ego problems? .. No brainer.
The other went with an open prostatectomy, massive continency issues, and we've never discussed erectile due to his advanced age. This was a shocker to me. Why not even discuss robotic with a doctor? Nope, just do as the doctor says. That is scary.
There is documentation all over the internet and elsewhere, describing the improved outcomes of prostatectomy performed with robotics.
Mainly due to the reduction of hand tremor, and lessened nerve damage as a result of a highly qualified surgeons mastery of the nerves around the prostate.
I think your going in the right direction and asking the right questions.
Don't feel bad questioning the doctors, as the surgeon how many he does, what the oncological outcomes are, age groups, erectile and continency outcomes, etc.
And don't be afraid to ask them to detail the process, right down to how many incisions, anethesia, catheter details, recovery, exercise regiment, recovery drugs, erectile function recovery drugs (Levitra, Cialis, etc.).
They should be able to spell out this entire process soup to nuts, and answer any question.
Feel free to ask your peers here as well. Compare treatments and ask the questions.

larry59
Posts: 41
Joined: Oct 2008

Being able to see the grass from the green side was a wonderful laugh provider for a terminal survivor-so-far. Hadn't heard that before. And you and others are giving good advice to olee who's far too young to have to deal with prostate cancer. My mental health counselor had the robotic surgery in Detroit and said everything went exceptionally well. And information is the hardest thing to get from doctors ... everyone should take a written list of questions, concerns, issues and demand the doctor explain each and every item. After all you are their customer, not the other way around. And if their egos are too big, find somebody else.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks for the advice, I am taking it to heart guys trust me. You guys have given me far more support than the medical community ever has to this point. If my family and fellow cancer survivors had MD's, I'd tell the docs,nurses, receptionists and everyone else affiliated with my current provider to go shove it somewhere. It will be one month this Saturday since being diagnosed and Sunday will mark a month since a doctor has bothered to call me. I still have not received the letter detailing the scans, although the nurse read them to me I would still like to have the letter. I called to ask why it was taking two weeks and the answer I got was ,"the nurse read the results, so what's the problem?" I then asked if the doctor could call me and inform me as to the stage cancer I currently have, I have a good idea, but I want him to tell me officially. I was transferred to some assistants vmx where I left a very very detailed message yesterday at 9:00am, surprise!!! No return call as of yet. I have become very proactive though and requested copies of all my medical records, which I received this week. I have been very careful not to suggest I was going elsewhere for care, but yes I am currently seeking out a doctor who will "manage" my care and give me some guidance and who actually shows some concern. I made an appointment with a Dr Nikhil Shah here Atlanta , but unfortunately he can't see me for a consult until 2-09. I have been told I need to take care of this very soon, but obviously the better the surgeon the harder it will be to get an appointment. Dr. Nikhil was trained at the Vattikuti Urology Institute located at the Henry Ford Center. I'm looking forward to meeting him. I've been a patient in the hospital where he practices and was very impressed. I'm still setting up consults and focusing on beating this PC, I just never knew I would have to fight some of the medical community as well.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Well I had a surgery consult last week and I have to say after everything that has transpired this was a good visit. Although I'm visiting the same facility I am seeing a new doctor and he seems to be very professional and concerned. After listening to my story of my interactions with the hospital and my frustration ,he handed me his number and instructed me to never go through the switchboard again. My confusion comes in the way of surgery. My new doctor informed me of treatment options and even offered to set up appointments for me with a radiation oncologist to discuss seed implants, although he strongly recommends surgery. He's open to me getting second opinions and says that no matter what he will treat me. He performs both robotic and open surgery, very experienced with open. He recommends open surgery because he says he can see everything and feel everything and feel more comfortable at removing the cancer. He noted the advantages of the robotic but made a strong statement that makes sense to me, after all the point of the surgery is to remove the cancer. I've read countless articles now of robotics vs open. One thing that's hard is to find is a source for robotics that's not biased, most that tout it, use it as their main method. I did read a few articles that that made a repetitive statement, when it comes down to it, finding a surgeon that's very good is the most important thing, his method should come second. I need to make a decision very soon and now I have a lot to think about.

socky
Posts: 4
Joined: Sep 2008

I know this is a hard decision, but you are young and your chances of full recovery are very good. I had the robotic 5 weeks ago today and I have full functions. I have lost nothing and I am 58 years old. I believe if you have the right frame of mind, a partner who is there for you and a caring doctor, then you will have a full recovery. Good luck.

larry59
Posts: 41
Joined: Oct 2008

Olee I hope for the best for you. If you have the options I would try the radioactive seeds first. They are minimuly invasive and docs can check how things are going and it they aren't working then the prostectomy can be done before it gets to locally advanced spread. I know the decision is hard but it sounds like you have a caring doctor now. There is a place in the Atlanta area that specializes in the seed procedure but I can't remember the name. You doc might could help. In any case get going on treatment because prostate cancer doesn't give up on trying to kill you. Best of luck, let folks know how you are doing. Larry

whubbs
Posts: 77
Joined: Sep 2008

Olee- Best of luck in your educated decision.

One thing I should point out though, regarding seeding, I was told that once you go down the road of radiation, that surgery is made much more difficult. The areas that get radiated by the seeds will become inoperable. I was told by my Dr. that essentially surgery is the best way to go first (of course depending on how spread the cancer got past the prostate walls) and if not taken care of by surgery, then to go down the path of seeding/cyberkife/cyro, etc.

In terms of open vs/ robotic...
The daVinci robot negates hand tremor and multiplies movement.
See davinci origami on you tube.
With the camera's and lights inside (hence the need for CO2 to inflate the abdominal cavity to see) and the operators fine motor movements, a skilled davinci surgeon can be more successful at nerve sparing AND oncological results.

If I were a Dr. who had 20 years of hands on experience in open, I'd surely push the open because I was familiar and comfortable with it. However, results from a highly qualified robotic surgeon are better across the board in Oncological results and Urinary and Erectile function return.

larry59
Posts: 41
Joined: Oct 2008

olee, in my attempt to be helpul I probably just caused you more confusion. Of course you should follow your docs recomendation. Just remember surgeons recommend surgery, radiation docs recommend radiation, and seed docs recommend seeds. It's all so confusing. The main thing is to get something started asap. Prostate cancer is usually slow but can decide to move like wildfire.
The place I could not remember as a suggestion is Radiotherapy Clinics of Georgia, based in Decatur. You might want to check with them. 404-320-1550 or toll-free 800-952-7687. Email is prostateinfo@recog.com.Web site is www.rcog.com.
Best of luck and please forgive me for confusingyou any more that you already are.
Please let me know how you are doing. Larry 59/email foley2007larry@mchsi.com.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thanks very much for the info Larry and for for that matter everyone. I always appreciate the input,after all that's why I posted here right? I am actually aware of the the radiation oncology center here in Atlanta, a co-worker gave me some booklets to thier facility awhile back. I have researched and talked it over with Dr's,family and the greatest caregiver I could find, my loving wife and I think we are close to a decision. I want to implement a treatment of some sorts by the end of January or first of Febuary. The consumption of information has been exhausting, not to mention the sorting of biased vs objective, and I am still doing it as we I type. You are all so valuable in the information you provide, trust me.Thank you so much.

manybless
Posts: 6
Joined: Jan 2009

Good afternoon Olee. I am 42 years old and was diagnosed with PC on November 12, 2008. I had no symptoms, lived in the gym, retired Air Force, got the nickname "Supermon" on a vacation in Jamaica, and was loving life as a Pastor in Alabama. To say I was surprised that "I" had cancer is an understatement. You have many options available to you. I chose the robotic surgery. Personally, I wanted the cancer out. I've known other men who have had all the other treatments and they "all" have possible side effects. I am fortunate. 4 1/2 weeks post surgery, I have no issues with control other than some minor leaking and no problems with ED, as of yet. I chose the DaVinci Robotic Surgery because it took the best of both worlds. The surgeon was still in control, but the robot eliminated all of the tremors/vibrations from his hands during the surgery. It's not an easy decision but one you will know is right once you make it. I encourage you to get with the local ACS "Man to Man" groups and talk one on one with the men locally that have worked with your doctors. This last 2 months has been unbelievable for me. I was diagnosed with PC, had surgery, and I'm almost back to 100%. I have been blessed through this entire process. Spend some time in prayer and I will do the same for you! God bless you indeed!

lkenn831
Posts: 1
Joined: Aug 2006

Olee,

Your story seems so similar to mine and my husband's. My husband was diagnosed at age 46 with a Gleason score of 10. It all seemed so unreal at the time as he had no symptoms at all. He had a radical prostatectomy at Emory a month after diagnosis and radiation 2 months after surgery. He is currently on hormone treatment.

Although his PSA has started to rise (it was up to an all-time high of 12 last week,) he still feels great and if it weren't for those ominous PSA scores, we wouldn't even know he has cancer.

Just wanted to share so that you wouldn't feel so alone in this.

Leslie

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Olee
Posts: 97
Joined: Nov 2008

It's because of my wife and family, as well as the survivors on this site that I don't feel alone, thank you for sharing.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Well the doc I thought so highly of from my consult weeks ago turned out to be just another in the herd. On Monday Dec 29th when I met with him I spoke briefly about my concerns as to communication breakdowns and asked if that would happen should I choose him as my surgeon. He gave me his card and instructed me to call his personal secretary. At the appointment I also complained about a sharp pain I'm having in my groin/pelvic area. He took a urine sample and said he'd call me on Friday with the results. He also handed me a sheet to take to the front desk with a referral for a radiation oncologist. I was told someone would have to call me back with an appointment, "they were on the phone with another call right now." I never got a call back on friday with the results, never got a call back with an appointment. Monday I called the number my doctor gave me and his secretary's response was, "I don't know why he gave you my number." I asked about my urine results, the pain and if I could ask the doctor two questions about the surgery, it would only take one minute of his time. He called back on Thursday, 4 days later, at which time I was working so I missed the call. I called his secretary back yesterday, and she said,"well he tried to reach you, I'll tell him again." He will call you after 5 today." Still no call. I did get a call back yesterday afternoon from someone wanting to schedule me for a radiation oncologist, guess they finally got off that phone call, it's only been 12 days later. Oh and that pain I'm having? I called the switchboard on Tuesday as instructed and the nurse called me back on Wed. She instructed me to come in Thursday morning and she would see me, not the doctor, he was too busy. I went by and she did a 3 min test to see if I was emptying my bladder and then told me it could be my appendix or something else in that area, but wasn't urological related and that I should see my family physician. Yesterday I saw my internist, the one who caught my psa in the first place, and he seems to think it's prostate related, he's checking for infection etc. It was nice to call an office. tell them I have a problem, have someone call me back and then see a doctor, what a concept! I have to say that the times when I've taken my dog Angus to the vet, they always call me back with results asap, they even call back to ask how he's doing. I'm thinking of asking my dog how he gets better treatment for his leg pain than I do for my cancer, maybe we should share doctors! I mean I am easy to please and very passive. I'm the kind of guy that will still tip even after bad service, but I have to draw the line here. On a positve note, I took charge and went outside the facility I am currently being treated at and called who I am being told is one of Georgia's best robotic surgeons. I called Dr Scott Miller and made an appointment for Jan 20th. The surgical cordinator stayed on the phone with me for 15 mins asking questions and answering questions. Within 10 mins I had the new patient forms in my email and I emailed back to say thank you and to ask one more question, guess what? She emailed me back! I like what I am hearing about this office and this surgeon and I am both nervous and excited about the appointment.

whubbs
Posts: 77
Joined: Sep 2008

Your frustration sounds all too familiar!
You are right, most of us get better service from Veterinarians.
The good ones are out there though.
Unfortunately, time to find them is not something easily afforded.
You sound like your on a good track.
Don't give up on diagnosing the sharp pain, I had some sharp pain prior to surgery as well, docs thought it was a rectal issue but never narrowed in on it.
Still have some pains in the same area occasionally, docs suggest nerve's 'waking up'...

I just got my 7 week post surgery PSA, it is non-detectable. Very good news!
A major PHEW! for now.

Good luck on the 20th.

whubbs
Posts: 77
Joined: Sep 2008

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whubbs
Posts: 77
Joined: Sep 2008

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larry59
Posts: 41
Joined: Oct 2008

Sorry to hear you are having doc problems. I was very lucky and got a good one here in Columbus the first time. They do have good docs here, guess we're lucky, plus we have the John Amos Cancer Center which is among the best facilities in the U.S. That's where I will getting radiation therapy, to start as soon as the doc works out my treatment plan.
Best of luck with your doctors, care, and treatment. And try to stay positive!

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Olee
Posts: 97
Joined: Nov 2008

Whubbs, I'm so glad to hear the good news! Good for you man! Thanks for the encouragement also. Larry, I've learned that getting a good doc is all in the luck of the draw. I had one hell of a hand when I landed my internist who screened me, but man did I play the deck bad after that hand! It's good to hear someone is having thier cancer "managed" and it sounds like you have a good system working for you. I'm always happy for any man that lands a good doc, as well as a good outcome on procedures or tests. Let us know how things go for you.

train-nut
Posts: 101
Joined: Jun 2008

Olee,

A friend/business associate living in Atlanta was diagnosed with PC several weeks ago. He has started his research into treatment options and who is "best". If you would be kind enough to talk to him both he and I would appreciate it. Please let me know at tulsadelta@sbcglobal.net...thank you, Rich

socky
Posts: 4
Joined: Sep 2008

Olee,
How did your appointment go. Hoping that things will be smooth for your the rest of this journey.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Well my appointment went great! The staff at Dr. Scott Miller's office greeted us kindly and welcomed us in as if we were guest. Dr. Miller invited us into his office and we sat for a good hour and discussed things. He gave us a new perspective on robotic surgery with a few creative analogies as well as his extensive background using the technique. He was the first urologic laparoscopist in the state of Georgia. He performed the first laparoscopic kidney removal for cancer in the state of Georgia and later the first to do the procedure for prostate cancer. He also performed Georgia's first robotic prostate removal in 2003 and performs about 300 of these surgeries annually. We enjoyed his discussion because he gave no promises and sales pitches, just his experience and knowledge. We felt very comfortable speaking to him, he was not condescending or "God-Like" in his approach and listened very well. My wife and I knew it was getting late, but he encouraged us to ask more questions. It was interesting to hear the difference of opinion between two surgeons, which will actually change my treatment. After shaking his hand and thanking him for his time, we met with his surgical coordinator who was very friendly. My wife and I knew minutes into the meeting that this was the surgeon so when we were asked if we wanted to set a date we responded with a quick YES. I have robotic surgery set for February 19th with Dr. Miller. I can't tell you guys how scared I am, but how relieved I am to have a resolution to this surgery ordeal. Not to mention to finally have found a doctor that listens and informs, and communicates! After the two surgical consults I completed, I have to say they were like night and day. The one at Emory lasted about 10 minutes tops and the doctor did about 95% of the talking. It took place in a patient exam room and seemed like just another appointment to the doctor. I had two questions to ask him over the phone mind you,almost a month ago, and I have yet to receive that return call. The consult with Dr. Miller at North Side Hospital lasted a total of 1 1/2 hours and was conducted in the relaxed setting of his office. There was a mutual discussion between two parties and we felt as though we took part. My wife and I just wish we could have found the better of the two in the beginning. Thank you all for the concern and I will continue to update everyone. I also read your entries as I want to know how you guys are doing as well.

BDJC
Posts: 9
Joined: Feb 2009

Olee, did you ever consult with a physician at Radiotherapy Clinics of Georgia?

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Olee
Posts: 97
Joined: Nov 2008

I emailed you some info for what and who I have heard, and experienced, are the best options for treating prostate cancer in Atlanta. Let us know how things work out and best wishes.

train-nut
Posts: 101
Joined: Jun 2008

My friend will be in touch with you shortly. Dr. Miller has been recommended to him. Your assistance is very much appreciated. Please keep posting, you're probably helping more people than you know. My best to you.

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Olee
Posts: 97
Joined: Nov 2008

I went for my pre-op appointment with Dr. Miller on Tuesday. It was an eye waking experience to sign the papers and recieve instructions. Dr. Miller brought me into his office where he talked to me some more about the procedure and answered more questions. He has been great through this process. I had the x-rays,ekg,blood work and answered question upon question, so now it's sit and wait. I feel like I just went through testing for a scheduled space shuttle lift off. I'm scheduled for robotic surgery on Thursday Feb 19th, I'm putting all my energy and hope into that day.

manybless
Posts: 6
Joined: Jan 2009

Olee, good luck on Thursday! I had my robotic surgery on December 8th and Im doing great. My 30 day PSA test was 0.02, which is the standard for zero post op, and tomorrow my wife and I will be traveling through Atlanta on our way to Jacksonville for a Cruise to the Bahamas! (just 2 months post Op!) Im 42, so us young guys can recover quick and get on with life! I have no doubt you will do the same! Keep encouraging everyone as you are, this is your calling! I am getting knee deep in the local ACS "Man to Man" program to help those that I can. We all have a choice, "cancer can have us or we can have cancer!" You will be in my prayers on Thursday and I look forward to reading a good report on Saturday when I get back in port. God bless you and your family!
Bobby

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Olee
Posts: 97
Joined: Nov 2008

Well everything went great last Thursday, it was a "text-book" surgery according to my surgeon. He said I bled very little and the tissues around the prostate looked good. It was a reality check when they rolled me into the ER and I saw the Da Vinci robot, it was like seeing your favorite movie star,athlete or comic book hero in person! I recognized it right away and it just raised my BP even more. Of course 5 mins later when I said my prayers and the nurse told me to breathe in deep and breath out slowly,I was out like a light. I awoke in recovery to the worst pain which was explained to me were bladder spasms. The nurse taking care of me quickly dispensed meds which eased it down. By the time I made it to my room I was awake but not coherent enough to even operate a remote control. I did recognize my wife right away as she walked into the room minutes after I was settled, although I couldn't say much I was smiling and jumping for joy deep inside. I was expecting to have the gas pains in the shoulders but that never materialized. I just experienced the uncomfortable sensation of the catheter and the continued bladder spasms. They gave the drug that I have heard many on here speak of that calms the bladder, the name escapes me at this moment, but for some reason it had a minimal effect on me. My stomach looks like I played dirty poker in the wrong saloon and someone went to work on me with a 6 shooter, mainly sore. I was amazed with the new procedure of "gluing"
the incisions closed. By Thursday night the nurse came around to take me for a walk down the hallway. I went all the way to the end and back, felt like I had run around the parking lot a few times, but I was proud. My doctor came in to see me Thursday and Friday morning, at which time he held an in depth conversation with instructions, answered all questions and told me I could go home. I've been home since and feel stronger everyday. The pain has graduated to mere tylenol and now I'm just dealing with the catheter and soreness from the incisions. My eyes are bigger than my feet if that makes sense, I feel as though I could walk around the block no problem but a short excursion tires me out easy right now. I feel much better than I ever thought I would after a surgery like this. Now comes the post-op visit on Friday, geez I can't wait to get the catheter out, and the follow up psa test. This has been a rough road with PC, one I will be on forever, but hopefully the roughest spots in the road are behind me.

manybless
Posts: 6
Joined: Jan 2009

Olee,
your day sounds exactly like mine a couple months ago. I was amazed at how tired I was after the surgery. I had to take a nap after I took a shower for the first week....Friday will be here before you know it and you will be back to the "new" normal soon. I watched lots of movies to keep my mind moving and off of the obvious. I saw your post about taking depends with you Friday, its probably a good idea until you get complete control again. I only wore mine for a three days. The keegle exercises definitely work so do them, it will speed your recovery and get the muscles developed and get you back in control. Good luck and I'll be praying for you! Pastor Bobby

whubbs
Posts: 77
Joined: Sep 2008

So glad to hear the news of your 'textbook' surgery. Awesome news!
Definitely bring the depends pads with you when you have the catheter removed.
Leakage the first day can be heavy. But no worries.
I've been told and read about, not to do kegel's for 48 hrs after removal.
Then do them as often as you can.
I hope your news Friday is equally as good as the outcome so far.
Take care!
Feel free to email me with any other questions you might have. :)

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Olee,

CONGRATULATIONS on you successful surgery!!!! I am so glad to hear your ordeal is over, and the Surgeon indicated it was a textbook example.

I know you and your wife are tremendously relieved the first step of this journey is over.

Please keep us posted on your successful recovery.

God speed and best wishes,

Roger

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

Thank you guys so much for your support, it goes a long way believe me! My post-op visit went great. Dr. Miller said the pathology report did not disclose anything new and that we'll wait for the results of the psa test on April 4th to judge our results. I was so relieved to have the catheter out. The nurse said most men call it liberation day. Now I just have to come to terms with the incontinence and have faith that it will work out. My wife stopped me in the middle of my complaining of the side affects and looked me in the eyes and said, "But you are alive, celebrate it." My doctor started me on ED meds which have already worked to a degree the first time they were used, this was a victory and a bright spot. My plan now is start walking more and more, further and further, hopefully back on my mountain bike by April. Also to work on this incontinence issue or hope it works itself out. My sights are set on April 4th as my next big day, psa test, and then of course the sit and wait for the results.

Bing
Posts: 10
Joined: Jan 2009

Glad to see you are doing so well, Olee. Just wanted to comment on what your wife said, and she is right. We are above ground, as I like to say, and we have another day. I do not know about you, but this experience has opened my eyes, and now I view each day as a gift, and am thankful for the blessings that have allowed me to still be here. The incontinence will pass, as it looks like the rest of your recovery is going well. It does not seem like it the first few days after the cath is out, but mine improved greatly over a couple of weeks time. Just kegel, kegel, kegel.There is a book out called beyond kegels, that adds a few more exercises. It helped alot. I found out about it on another site, and maybe it will help speed the control. The author is Janet A. Hulme. I am five weeks out now, going on six, and just use a small mens pad for piece of mind. A hard sneeze or cough still causes a few drips, but not bad. Be patient, control comes quicker than you would think. It sounds like you have a very supportive wife, and that is the biggest blessing you can have, in my opinion. I could not have made it thru this if not for mine. She propped me up when I needed it most. Good luck, and keep on smiling if you can, because we are still above ground.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

I was glad to read that you came out of surgery so well. I have another visit with my urologist on Monday to further discuss options. I will most likely go the path you choose also. But active survellance has such an appeal. I read all of your posts, your frustrations, and your success. I only pray I can make the right one when the time comes.I know taking it out is the way to go, but I think I am more scared of that right now. Gongratulations on so much success and pray for continued speedy recovery.

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