Diagnosed at 40

Olee
Olee Member Posts: 97
edited March 2014 in Prostate Cancer #1
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.
«13

Comments

  • rogermoore
    rogermoore Member Posts: 264
    Options
    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
    Olee Member Posts: 97

    Options
    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

    Thanks
    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!
  • zackpar
    zackpar Member Posts: 1
    I was received the Prostate Cancer News at 45!!!
    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
  • whubbs
    whubbs Member Posts: 77
    Olee said:

    Thanks
    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!

    Help and support
    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 [email protected] 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
  • Olee
    Olee Member Posts: 97
    Thanks
    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
    rogermoore Member Posts: 264
    Olee said:

    Thanks
    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.

    Further testing
    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
    Olee Member Posts: 97

    Further testing
    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

    Test Yesterday
    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
    rogermoore Member Posts: 264
    Olee said:

    Test Yesterday
    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.

    Sit and wait
    Olee,

    Please keep us posted on the happenings in your life.

    Roger
  • Olee
    Olee Member Posts: 97

    Sit and wait
    Olee,

    Please keep us posted on the happenings in your life.

    Roger

    Rainy Day Brings Good News
    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
    whubbs Member Posts: 77
    Olee said:

    Rainy Day Brings Good News
    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.

    Good news
    Awesome news! Feel free to call if you'd like, I'm 3 1/2 weeks out and feeling good again.
    -Wayne
  • rogermoore
    rogermoore Member Posts: 264
    Olee said:

    Rainy Day Brings Good News
    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.

    Good news
    Olee,

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

    Roger
  • shipjim
    shipjim Member Posts: 137
    Olee said:

    Test Yesterday
    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.

    After the tests
    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
    Olee Member Posts: 97
    shipjim said:

    After the tests
    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.

    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
    Olee Member Posts: 97
    Olee said:

    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.

    Sounding Off
    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
    train-nut Member Posts: 101
    Olee said:

    Sounding Off
    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!"

    Bunch of Yo-Yo's
    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
    whubbs Member Posts: 77
    Olee said:

    Sounding Off
    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!"

    Its all about $$
    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.
  • Olee
    Olee Member Posts: 97
    Consult Appointments
    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.
  • larry59
    larry59 Member Posts: 41
    shipjim said:

    After the tests
    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.

    great comment
    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
    Olee Member Posts: 97
    Olee said:

    Consult Appointments
    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.

    Confused
    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.
  • larry59
    larry59 Member Posts: 41
    It's good to have options
    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