I live in San Antonio, TX, and on March 21, 2007, was diagnosed with prostate cancer. The cancer was judged to have a Gleason rating of 7 (4+3), but a T1-C stage. We discovered the cancer after my PSA tested in November, 2006, went from 3.1 ng/ml to 3.9 ng/ml in late January 2007. I had the second PSA test due to a physical required prior to cataract surgery done in early March, 2007. My General Physician, Dr. Sam Sayegh, gave me a clean bill of health for the surgery, but told me that he was sending me to a urologist, Dr. Louis Russell, due to the significant percentage increase in my PSA in less than 90 days. Dr. Russell did 9 biopsies on Monday, March 19. He called me on Wednesday to tell me they had found cancer in the upper left quadrant.
I found YANA and read just about every account, in addition to everything I could find on the internet. My spouse read everything I did and helped me with the research. She also went to each of the doctors with me, and agrees with my decision below.
I decided to interview two doctors: The first was Dr. Brad Prestidge,a oncology radiologist in San Antonio. He is noted for his experience (3,500 operations) and knowledge of radioactive "seed" technoloy. The next doctor was, Dr. Naveen Kella, also of San Antonio, who has done about 550 robotic laparoscopic prostate removals using the Da Vinci robotic technology marketed by Intuitive Surgical.
In summary, I was concerned about the stories from my friends and associates who had chosen radiology treatments and decided after meeting with Dr. Kella to go with full removal, hoping that the cancer is contained in the prostate. To test for containment, I have decided to have a "hybrid" Positron Emission Technology (PET) Scanner test prior to surgery. This test is offered by Dr. Prestidge's organization, Texas Cancer Clinic. The exam requires that I receive a shot of special radioactive isotopes that will attach themselves to each prostate cancer cell, and five days later I will receive a "CT Scan." The results will provide a color picture of locations of prostate cancer cells. Dr. Kella is aware of older tests like this, but agrees with me that even if the test is only partially accurate, it will be better than nothing prior to surgery.
We have tentatively scheduled the surgery for mid-May. I am writing this on Easter morning, April 8, and have made a commitment to lose weight, exercise more and attempt to "get ready" for the surgical procedure that will occur in about 5 weeks. I will update this entry as things develop. If you wish to review the surgery, just go to Dr. Naveen Kella's web site at Urology of San Antonio. There is also another organization in Austin, Texas, where a Dr. Fagin has done nearly 900 of these same procedures.
Good luck to us all!
It's May 15, 2007, and the day before my surgery which shall begin at 7:00 AM at St. Luke's Baptist Hospital in San Antonio, TX. Since my initial input, much has happened. Here's a few of the highlights:
My wife and I went to the Gulf Coast of Texas on April 2 to relax and reflect for the month. I made it 2-1/2 weeks since all I kept thinking about was "I've got so much to do!" (There's a certain 'finality' to having cancer that makes completion of projects of paramount importance.) I spent the next week in tests and working physically hard on our country place which kept my mind busy and helped me to lose some weight and gain some new muscles I haven't used in 10 years.
On April 20th I was injected with a special radioactive isotope (monoclonal antibody) that has been developed to help identify prostate cancer cells in our bodies. The procedure is called a ProstaScint which was approved by the FDA in 1996. On April 25th I received two gamaray scans and a cat-scan and the images were combined via computer into a single color image that highlighted the cancer cells. The results were bad news, good news and confusing. The image results showed that the cancer is outside the prostate and is in the s. vesicules. The good news was that is seems my lymph nodes are clear. The confusion came from the fact that my biopsy had shown that the cancer was in the upper left quad of the prostate and the ProstaScint showed it on the right. No idea why this occurred but it makes the output from the scan(s) suspect.
I was able to talk to the surgeon, Dr. Navene Kella, on May 2 and just asked him the bottomline .... would he operate based on the test results and did he think he could be successful. "Successful" is defined as full removal of the cancer, not me paying my bill in a timely fashion.
Dr. Kella does not normally recommend the ProstaScint to his patients, because it has had a history of not being entirely accurate. Some of this is due to the fact that the output of the ProstaScint used to be black and white which made it difficult to differentiate cancer cells from other cells. Changes now allow a color output that helps the radiologist to "see" the cancer more clearly. He seemed confident about my situation and we decided to proceed foward with the surgery. If he does not get all the cancer, our follow-on strategy after the removal of the prostate and s. vesicules is: radiation, hormonal therapy or chemotherapy, not necessarily in that order. He did not recommend seeds after surgery.
The reason for this update is to let you know what has happened since my diagnosis and that my head is spinning right now; not, from fear of surgery, but from concern about the unknown outcome tomorrow. My over-prostate-cancer-educated head is saying things like: What will it mean if I wake up at 8:30 in recovery? Will it mean the cancer had spread too much to operate? What is Dr. Kella going to tell my wife, family and friends after surgery? How will that change our lives? etc. etc. When you are used to "being in charge," the unknowns are the scary things of life.
More after surgery. Good luck to all.
June 2, 2007 - Update - Post Surgery:
We met with Dr. Kella on May 25th to obtain the post-op pathology reports. After 5 to 10 mundane questions about using the hot tub, when can I play golf again, and how much weight can I really lift after two weeks, I asked him for the results. My preamble to him was, "Dr. Kella, I would like the results of the pathology report, and your answer will have a direct affect on whether you are placed on our Christmas card list, or not.
The results were excellent. According to pathology the cancer was Gleason 3+4 not 4+3 and was totally contained in the prostate. It was positioned very close to the capsule (the outside of the prostate ... I think that was the right word) of the prostate and we were very fortunate to have found it as early as we did. The tumor type was an invasive prostatic adenocarcinoma. Tumor grade was Gleason score - 7 = 3+4, and poorly differentiated. Tumor extent overall: 4%. Right lobe = 2% Left Lobe = 2%. There was NO invasion in the seminal vesicles. No detectable involvement in the lymphovascular areas sampled after surgery, and no indication of any cancer in the surgical material (extra "steak" carved) taken around the prostate. Left and right pelvic nodes were negative for malignancy. HOOORAH!
So, now my nasty prostate is in a jar on a shelf and we can all look at and laugh at it. Now our hope is that none of those itsy bitsy microscopic cancer cells don't show up in the future. I am feeling excellent now.
1. The ProstaScint test was dead wrong about cancer outside the prostate. That only part of the report that agreed with the actual results was that there was no cancer in the lymph nodes. As you can see from my last update, it had indicated cancer outside the prostate. Dr. Kella was kind when I questioned the time, effort and cost of the test when he stated, "It would appear they got a false positive." That's his classy way of saying the results were worthless. Maybe they will improve that technology in the future, but based on the test's results as compared to actual results, I thought it was a waste of time. Never mind the worry the "false positive" created prior to surgery thinking the cancer was outside the prostate.
2. The post operative care I received at St. Luke's Baptist Hospital in San Antonio was some of the finest medical care I have ever had. Dr. Kella's classy approach to pulling my wife and son out of the post-op waiting room into a private conference room and updating them on the results of my surgery rather than going through all the details in front of friends and strangers, speaks volumes about how doctors should treat families as well as their patients. There are some major changes coming in medicine today and I hope each and everyone of your experience the next philosophy of treating the family and patient in medical situations.
3. The worst part of the surgery was the catheter. I have never had one before and didn't like it one bit. I was amazed how quickly you urinate with no prostate between your bladder and penis. You feel like you have to go, and you better get ready to go. I also have begun to understand why those "bladder spasm" pills are helpful after surgery. They allow you to control the urge to urinate.
4. It's 17 days after surgery and about the only incontinence I am experiencing is when I sneeze or cough. I am having no problem holding my urine, but have found it wise to not to try to hold it too long. Am wearing the pads just as insurance, but am having no problems at night or during the day, except as noted.
5. I have started taking Levitra twice a week to wake up the urge again. Actually felt like I had an erection with the catheter in. That was an interesting experience.
In summary, I am grateful to about everyone in the world right now. (Please, no one ask me to send a donation to their favorite family member.) I won't be updating much for awhile. My next exam is August 28th when we will get my PSA score. Let's hope it is 0.00000!
Good luck to all.
Good news received today, August 24, 2007. My PSA value came back as 0.00 three days before my three month check up with Dr. Kella, the surgeon who performed the robotic assisted surgery.
TBTG !!! Mike.
Great news. After 18 months, my current PSA is staying at 0.00 so it looks like the surgeon got all of the cancer.
Unfortunately, he also got some of the nerves that affect ED as well, so am having to deal with those issues. At 66 I know my sexual drive had been on the decline before the surgery, but after the surgery my imagination and innovation has to prevail. Fortunately, I am married to an incredible woman who is open to talking about these issues and we are working through them. I have tried the external pump and it does work, but seems so foreign to our natural way of doing things I understand from friends that the internal pump is terrific, but again, I think we have to be honest with ourselves and ask what other factors may be affecting our sex drive: weight gain, age, or whatever?
I have asked myself many times if I should have chosen radiation instead of the surgery and still come to the same conclusion that the robot-assisted laparoscopic surgery was the way to go. My recovery was quick. I have had an occasional erection that surprises me, even though it doesn't last very long, and I have lots of fun snuggling with my wonderful love of my life.
Have 0.00 PSA and am now on a yearly cycle with my doctor/surgeon.
Unfortunately have experienced some serious ED issues which is a combination of age and the surgery. I'm glad the prostate is gone with the cancer, but am saddened by the head problems ED delivers to the patient.
Am late in getting my PSA test done last January. Will need to do that soon. Have not heard from my doctor or his office, so I am assuming they have diagnosed me as "clear" and are moving on to other people that need help.
I have made a conscious decision to get another colonoscopy (last one was 8 years ago) and have a heart specialist look at my increased blood pressure. I missed my five year anniversary for the colonoscopy because at the time I had been stuck, prodded and abused by doctors working on my prostate cancer issues and frankly I was tired of having things stuck in various places of my body. I know I need to get the colonoscopy soon and will take care of that this month. That's it for now.
Keep the faith and remember... there are NO decisions that you make that can't wait a while. Don't be in a rush to operate, take radiation, or any agressive activites. There's plenty of time, but DO focus on the potential results of your future decision and treatment. Some things are not irreversible.
PS - Really enjoyed meeting Terry Herbert and his spouse during our trip to Australia last March. If you get the chance, send him an email. He knows some great restaurants in Melbourne! [Good to see you two as well, Mike. Australia's a great place, as I am sure you will testify to - and you can ask Oprah as well:-)]
Good morning, Terry, and all:
To date, 5 years after my surgery, my surgeon has stopped setting up appointments for me to have my PSA tested and I've lost 40 lbs. I am grateful for both since the loss of 40 lbs. has taken me out of a risk factor for heart attack and apparently my doctors think I am cancer free.
Unfortunately, the ED results of the surgery continue to plague me. So, after some initial discussions with my wife, I am going to seriously look into an implant. We will do much research on this procedure and I will report my findings and results in the future, but all that I have read by doctors and patients about this permanent procedure to ED seem very positive. As I approach this solution, I will keep you all informed of the process and some of the results. I will be 69 years old this June.
Just a Yee-Haw from Texas! Hadn't had a PSA test in more than 18 months and got the results back yesterday that my PSA continues to be 0.01 or less. Good news!
Hello to all six years after my cancer removal. Doing well, and really appreciate this site. Of course there are some after-affects, but that's a small price for being with wife, children and grandchildren. Love to all that have to deal with cancer. It's a horrific desease but nature's way of weeding us out and allowing others to take our place. Stay healthy and keep on keep on. We are so blessed for this time with our loved ones. Make it count! Mike
Hi Terry: I decided to update my story after I found out my brother in law has been diagnosed with bladder cancer. His situation is a little different than most since his cancer is very rare and very aggressive. I wrote him a note to help him in his process, and after reading it thought it might be helpful to those with prostate cancer who are having to deal with who, what and how questions. If you dont' want to post this I will understand. Best to all down under! Mike
I am pretty sure that this unsolicited intrusion into your life is just one of many right now. Everyone wants to "fix" and "help" you to get well and no one but you has the responsibility for your future decisions and the outcome of those decisions. I am including every friend and doctor you have talked to, and those you will in the future. Here's a few things that I would like to pass along:
- Every doctor thinks he is right and believes in his/her heart that his/her remedy will either cure you or save your life.
- Every doctor is a bit of a salesman. They all want your business and believe they can help you.
- This is a worn out thought and I hate to repeat it, but I know this to be true. It is beneficial that you have a doctor that you like and trust, but you really don't know your doctor's level of competence. Their peers won't tell you and patients are unreliable.
- Every doctor is relatively knowledgeable in their field. That means they know their stuff, but it is impossible for them to run a practice and keep up with all the advanced research going on in their specialty at the same time. In my case, my doctor was one of the best at laparoscopic surgery using the latest Intuitive Surgical technology. What I didn't know and he didn't tell me was the risk of severe nerve damage from the surgery. Way after the surgery when I challenged him about the results he said: "Yea, we took a few more nerves that we normally do." Thanks, doc.
- Doctors don't ever tell their patients everything. They don't tell you about the pain you will endure after surgery, the inconveniences that will come from the surgery for both short and long term periods of your life, and rarely suggest alternative means of treatment.
- You know this, but you need to hear it and read it, there are no "do-overs" in surgery or radiation. You want to get every possible fact you can from as many learned people in the field of your cancer and then make your decision. It's a crap shoot but you want to keep the odds in your favor as much as possible. Multiple learned opinions and personal knowledge are two ways of doing that.
- I understand your doctor studied under "the best" at MD Anderson. Great. Go to "the best" and get his opinion. Put together a file on yourself from all of the doctors you have seen and get it to as many doctors in the field of bladder cancer that will see you and ask their opinions and suggestions for alternative approaches to a cure. Find out who "the best" studied under, and who is doing "the best" research in bladder cancer, and go talk to them. As you do this, your list of questions and expertise will grow exponentially.
- If possible, always take someone who is an excellent listener and note taker with you when you see a doctor. Your head will be buzzing about implications, life changes, chances for success, etc. and you may miss some key points that a doctor is making.
- Go to a quiet place and evaluate everything you have heard and read with that person you love.
- Then, make your decision and GO FOR IT!
Just a quick update. You have all (that have read the story) know that I suffered ED from my surgery. I am glad to report that with a little help from Viagra, I am beginning to get more sensation "down there" to the point of erection. I was pretty sure I was stuck with permanent nerve damage, but a wonderful trip to New Orleans with my wife, a little wine and a big blue pill was the perfect formula for a lovely evening. For fear that my grandkids will read this someday, I think I will stop there. Just know there is hope!
Good luck and God speed to you all!
All is well in San Antonio, Texas. I have told many friends that there is not much good about losing your prostate other than you can now pee like a seven year old! For someone that's 10 times that age, that's great. Best regards, Mike
It's hard to believe that it's been over nine years since the operation, but am glad to update my report. As I have previously stated, there's good news and bad news about prostate surgery. The good news is that it can/may rid you in short time of the cancer if it is contained in the prostate. The bad news is there are nerves cut that may or may not heal properly to allow you a full and complete sexual relationship. That's a tough bi-product of the procedure and most surgeons don't really give you the truth about the risk of that potential problem. As I have said before: Surgeons cut; radiologist radiate. All of them are in the business of "selling" their procedures. There is no simple or easy answer, unless you choose to wait-and-see, and then there is the risk of "seeing too late."
I am in my 74th year, healthy and active. I play LOTS of golf, love being with my family and friends, and can't wait for my wife and my next adventure. I don't regret my decision on surgery, however, if I were 30 to 35 years old, married and knew what I know today, I would not hesitate to radiate the cancer rather than cut out the prostate. I would then monitor the heck out of the progress of the cancer and try to live a normal life with my wife and family. Those are just my thoughts, but as you know, we are all very different.
Good luck to you that read this. I am always available to be contacted and will not hold back any of my personal thoughts on this nasty disease that so many men have today.
Mike's e-mail address is: firstname.lastname@example.org