Rusty Dennison wrote:
Saw your article this week and wanted to check in with you. Removing the catheter was such a relief in one way for me though those first few weeks after its removal were a challenge too. At least at that point I felt like I was beginning to move forward and I knew I needed to honor my body’s need to have time to heal. Walking and yoga both helped a lot, especially after the first three weeks or so. It was not a linear process but the water works subsides. Best wishes and trust that it does get better.
The waiting game was hard for me at first and now that I am on a six month cycle instead of three month cycle, it is a lot easier but not still not easy. The first three month cycle I was convinced that based on my pathology report (nearly 100% positive surgical margins and Gleason 7) that I would need radiation right away. I was nearly sick to my stomach waiting for the results and cried with relief when the doc told me the PSA was undetectable. The second three month cycle was equally hard because I couldn’t believe I could be so fortunate to get two in a row. For these first two cycles, I started getting anxious about half way through the three months and built to a peak at the time of the test. It didn’t help that I got my blood work two days before the doc visit each time and had to wait. Those 48 hours were just miserable for me the first two times. Then, by talking to the lab tech at Mayo, I learned that the blood results were in the computer record within 2 hours of the blood draw and that the Physician Assistant would call me that very night if I wanted. That helped me so much because I knew I only had to wait a few hours and could get myself pulled together well to actually ask questions by the time I met with the doc. Now, I’ve refined it even better and schedule my blood and doc visit on the same day with only three hours in between the two appointments. Works well and cuts down on the waiting tremendously.
Lastly, I don’t know about your personal style but my general approach to the doctor was to try to be a good patient and not ‘bother’ him in between appointments. Dumb idea. Once I learned that the Mayo docs didn’t consider it a bother, I did much better at calling the Urology office, leaving a detailed message and asking either the doc, the resident or the PA to call me back. I would always get a call by the early evening of the same day and they always answered every question patiently. I learned that so many of my new ‘symptoms’ were quite normal and some required intervention but were not abnormal. It was so much better than psyching myself out that everything was some new cancer symptom. I limited the drama on the calls, but I was clear about my fears too. It was a new behavior to learn to call more readily but well worth it.
Take care, be patient with yourself, and on a daily basis find things for which you are grateful (some days for me it was as basic as ‘one pad instead of three’!).
Mike Martinelli wrote:
I have read your article on Prostate Cancer in the Chandler Republic and found it very informative. PSA Results should be scrutinized carefully and utilized in conjunction other tests and rectal examinations. .
In early 2000 my PSA went from 1.6 to 4.2 which was a dramatic increase in only one years time. NOTE; I never had any of the usual signs of Prostate Problems. My Physician told me to wait a couple of months and then have it checked again. Because of the anxiety, I decided to have it checked sooner, and the results were 2.3. Although I initially viewed this decrease as good news, something told me that it didn't make sense. I waited a couple of months and had it checked again; however, this time it showed 9.7.
I immediately went to a Urologist who scheduled me for a biopsy. He took eight biopsy's which showed Cancer in four of the tissues. I was 63 years old at the time and decided to have "Radical Surgery" for the removal of the Prostate. The post-operative biopsy showed a Gleason of 6. After only three weeks after surgery, I was driving, playing golf and doing light workouts at the gym. Two weeks after surgery the catheter was removed and I never had a problem with incontinence. It has been over 8 years since my surgery; my PSA has remained at close to
"0". PSA is only part of determining Prostate health and after age 50, semi-annual rectal examinations is certainly recommended.
Dave Rushlo of Scottsdale:
HI I AM ONE OF THE 35000 IN THE SELECT CANCER PREVENTION TRIAL WE WERE USING VITAMIN E& SELENIUM PLUS A MULTI- VITAMIN. THREE YEARS INTO THE STUDY MY PSA WENT FROM .5 TO 4.5 IN SIX MONTHS. AFTER TWO PSA TESTS & ONE BISOPY I MADE THE DECISION TO HAVE SURGERY USING THE ROBOT. I WAS IN THE STUDY AT MAYO CLINIC SO I WAS REFERRED TO DR. ROBERT FERRIGNI WHO DID MY SURGERY AFTER ABOUT A FOUR WEEK WAIT TO GET ON HIS SCHEDULE. THINGS WENT VERY WELL UP & WALKING NEXT MORNING & OUT OF HOSP. & HOME ON SECOND DAY. HOWEVER ONE WEEK LATER RUNNING A HIGH TEMP. WITH INFECTION IN AREA OF SURGERY BACK INTO HOSP FOR FOUR DAYS FINALLY HOME AND ONE WEEK LATER BACK INTO HOSP WITH SAME PROBLEM & 104 TEMP. AFTER FIVE DAYS FINALLY HOME. THINGS WENT FINE FROM THERE. THIS FEB. WILL BE FOUR YEARS WITH A PSA OF .0 AND THE ONLY PROBLEM IS MINOR BLADDER LEAKING WHEN I LIFT TURN REALLY SHARP OR SQUAT & LIFT. I GUESS AT 75 YEARS OF AGE IF THAT IS THE ONLY PROBLEM VS CANCER I CONSIDER MYSELF VERY LUCKY. THE STUDY WAS A DOUBLE BLIND STUDY SO WILL NOT KNOW FOR THREE MORE YEARS WHAT I WAS TAKING. HOWEVER THE STUDY HAS BEEN STOPPED BECAUSE "THE DATA TO DATE SUGGEST, BUT DO NOT PROVE, THAT VITAMIN E MAY SLIGHTLY INCREASE THE CHANCE OF GETTING PROSTRATE CANCER, AND THAT SELENIUM MAY INCREASE THE CHANCE OF GETTING DIABETES MELLITUS. WE WANT TO EMPHASIZE THESE FINDINGS ARE NOT PROVEN."
Friday, January 9, 2009
More stories
Carelton Moore, retired ASU professor:
Anyway I did/do have prostate cancer butam glad to report that I am now entering my 6th year with PSA <0.1. I chose IMRT radiation with David Beyer . I was able to do this because I lived within driving distance of his facility and could take the time do do this for two months. I was sent to him by my urologist Robert Shahan who didn't push instant surgery even though my Gleason score was reported to be 9 in the single positive of 12 needle biopsies. I too have visited off and on the UStoo meetings in Scottsdale and Tempe. A problem in my opinion is that the UStoo attendees tend to be people in post treatment not pretreatment . My post treatment opinion is that more patients should consider varios options and for example request a second biopsy scan by a noted pathologist etc. these options are often spelled out in the references such as those you have listed. PS I have had no post treatment problems or at least haven't been aware of any.
Max Levine, Sun City
I read your article regarding prostate cancer in the Phoenix Living section of paper 12/26 and found it interesting. I am a 5 year survivor of prostate cancer and a 1 year survivor of lung cancer and doing very well on both counts. You talk about the biopsy in which they take 12 samples to test, thus leaving the possibility of missing the rest of the prostate. Am certain that you have heard of a Color Doppler Ultrasound in which the chances of detecting any cancer is much better as it is not a blind test. I have attached some info regarding the Color Doppler Ultrasound by Dr Duke K. Bahn, Ventura, California, whom you also may have heard about. At one time my PSA was 125 and it is now 0.03. I still have my prostate. My treatment consisted of approx. 2 years of Hormone Treatment along with Casodex and 43 IMRT Radiation treatments. The results have been excellent, but I am left with anemia which may have been a side effect of the radiation. I was 73 years old when I started treatment. The most important treatement that I had is the love and support of my wife, Inez and my family, along with Ralph Valle and Tom Brodzeller at our "Lunch Bunch Support Group". They are the reason that lead me to the realization that I own the cancer and it does not own me. They made me realize the importance of going to a Oncologist that specializes in prostate cancer and who than acts as my "Coach". Will admit my wife and I had to travel, but we wanted the best, so we went Dr Lam and Dr Shultz in Marina Del Rey, both Prostate Oncology Specialists. Many of our group have done the same and have had fantastic results. It was their office who insisted that I have a chest Xray as had smoked for many years, stopping approx. 16 years earlier. Well, I did and they found on spot which was malignant and fortunately was stage 1a. Had a portion of upper lung removed and am doing well as no further treatment necessary at this time. It is so imporant to have a coach to explain the various treatments so you are informed and can make the correct decision. Not only must you be informed, you need all the support you can get, maintain a positive attitude and be your own advocate.
Well, that is my story and I am sticking to it. You are certainly welcome to contact me anytime you wish, if you would like to talk further. You are welcome to join us for lunch at our Lunch Bunch meetings on Tuesdays at The Old Country Buffet at 11:30AM, 9820 West Parkway West, Metro Center, Phoenix.
Yes, you may post my story on your blog and it would be greatly appreciated if you would mention our "Lunch Bunch" prostate support group, which does meet weekly. If you need any further information regarding our group you can call either myself 623 931 0418, but probably would do best calling Tom Brodzeller 602 944 2338. Tom is a fountain of knowledge, as is Ralph Valle, when it comes to PC.
Pete Freeman wrote:
As the year comes to an end, I celebrate my first anniversary after having treatment for prostate cancer. I stand in awe at the thought of what could of happened and how this fear and worry turned into nothing but a true blessing.
I will be forever grateful to my friend who told me about proton therapy and the wonderful staff at Loma Linda Medical University in Loma Linda, Ca where I received my treatment .Without their intervention my life would have changed but not for the better. I feel the Platinum Standard for the care of prostate cancer is the proton beam therapy available at Loma Linda.
I do have to say that it saddens me to have read in this blog about the men who have gone through various types of treatment and are still suffering from the side effects of those treatments. I would find it interesting to know if any of those individuals knew about the option of proton beam therapy at Loma Linda.
As I reflect upon this past year I think about the many ways that I have grown. I am physically healthier, wiser and forever thankful for my new friends that I met during this journey. My wife and I often refer to it as our "Radiation Vacation". I have a lot to be thankful for as I look forward to the next year and my family feels the same.
As we move towards the year 2009, my goal is quite clear to me.I want to "pay it forward". I want to let other men who have prostate cancer know that they can survive this cancer without surgery. My hope is that by sharing my story another man will benefit.
During my treatment I was interviewed by a writer for the New York Times and he asked why I chose this treatment rather than the typical radical surgery? I told him "I was 67 yrs old and did not want to wear a diaper the rest of my life" as so many who have had radical surgery are doing.
I welcome your readers to contact me if they would like additional information.
pfreeman1940@gmail.com ete Freeman wrote:
Anyway I did/do have prostate cancer butam glad to report that I am now entering my 6th year with PSA <0.1. I chose IMRT radiation with David Beyer . I was able to do this because I lived within driving distance of his facility and could take the time do do this for two months. I was sent to him by my urologist Robert Shahan who didn't push instant surgery even though my Gleason score was reported to be 9 in the single positive of 12 needle biopsies. I too have visited off and on the UStoo meetings in Scottsdale and Tempe. A problem in my opinion is that the UStoo attendees tend to be people in post treatment not pretreatment . My post treatment opinion is that more patients should consider varios options and for example request a second biopsy scan by a noted pathologist etc. these options are often spelled out in the references such as those you have listed. PS I have had no post treatment problems or at least haven't been aware of any.
Max Levine, Sun City
I read your article regarding prostate cancer in the Phoenix Living section of paper 12/26 and found it interesting. I am a 5 year survivor of prostate cancer and a 1 year survivor of lung cancer and doing very well on both counts. You talk about the biopsy in which they take 12 samples to test, thus leaving the possibility of missing the rest of the prostate. Am certain that you have heard of a Color Doppler Ultrasound in which the chances of detecting any cancer is much better as it is not a blind test. I have attached some info regarding the Color Doppler Ultrasound by Dr Duke K. Bahn, Ventura, California, whom you also may have heard about. At one time my PSA was 125 and it is now 0.03. I still have my prostate. My treatment consisted of approx. 2 years of Hormone Treatment along with Casodex and 43 IMRT Radiation treatments. The results have been excellent, but I am left with anemia which may have been a side effect of the radiation. I was 73 years old when I started treatment. The most important treatement that I had is the love and support of my wife, Inez and my family, along with Ralph Valle and Tom Brodzeller at our "Lunch Bunch Support Group". They are the reason that lead me to the realization that I own the cancer and it does not own me. They made me realize the importance of going to a Oncologist that specializes in prostate cancer and who than acts as my "Coach". Will admit my wife and I had to travel, but we wanted the best, so we went Dr Lam and Dr Shultz in Marina Del Rey, both Prostate Oncology Specialists. Many of our group have done the same and have had fantastic results. It was their office who insisted that I have a chest Xray as had smoked for many years, stopping approx. 16 years earlier. Well, I did and they found on spot which was malignant and fortunately was stage 1a. Had a portion of upper lung removed and am doing well as no further treatment necessary at this time. It is so imporant to have a coach to explain the various treatments so you are informed and can make the correct decision. Not only must you be informed, you need all the support you can get, maintain a positive attitude and be your own advocate.
Well, that is my story and I am sticking to it. You are certainly welcome to contact me anytime you wish, if you would like to talk further. You are welcome to join us for lunch at our Lunch Bunch meetings on Tuesdays at The Old Country Buffet at 11:30AM, 9820 West Parkway West, Metro Center, Phoenix.
Yes, you may post my story on your blog and it would be greatly appreciated if you would mention our "Lunch Bunch" prostate support group, which does meet weekly. If you need any further information regarding our group you can call either myself 623 931 0418, but probably would do best calling Tom Brodzeller 602 944 2338. Tom is a fountain of knowledge, as is Ralph Valle, when it comes to PC.
Pete Freeman wrote:
As the year comes to an end, I celebrate my first anniversary after having treatment for prostate cancer. I stand in awe at the thought of what could of happened and how this fear and worry turned into nothing but a true blessing.
I will be forever grateful to my friend who told me about proton therapy and the wonderful staff at Loma Linda Medical University in Loma Linda, Ca where I received my treatment .Without their intervention my life would have changed but not for the better. I feel the Platinum Standard for the care of prostate cancer is the proton beam therapy available at Loma Linda.
I do have to say that it saddens me to have read in this blog about the men who have gone through various types of treatment and are still suffering from the side effects of those treatments. I would find it interesting to know if any of those individuals knew about the option of proton beam therapy at Loma Linda.
As I reflect upon this past year I think about the many ways that I have grown. I am physically healthier, wiser and forever thankful for my new friends that I met during this journey. My wife and I often refer to it as our "Radiation Vacation". I have a lot to be thankful for as I look forward to the next year and my family feels the same.
As we move towards the year 2009, my goal is quite clear to me.I want to "pay it forward". I want to let other men who have prostate cancer know that they can survive this cancer without surgery. My hope is that by sharing my story another man will benefit.
During my treatment I was interviewed by a writer for the New York Times and he asked why I chose this treatment rather than the typical radical surgery? I told him "I was 67 yrs old and did not want to wear a diaper the rest of my life" as so many who have had radical surgery are doing.
I welcome your readers to contact me if they would like additional information.
pfreeman1940@gmail.com ete Freeman wrote:
Subscribe to:
Posts (Atom)
