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Bill Hilsman's Story
(Mr. Hilsman's account was taken from SeedPods -- A
mailing list offering information and support to those interested in brachytherapy for
prostate cancer)On Thursday 28 May I was seeded at the Bodine Cancer Center of
Thomas Jefferson Hospital In Philadelphia, PA. I received 68 I-125 Iodine seeds from Dr.
Adam Dicker, my radiation oncologist, who was assisted by Dr. Leonard Gomella, my
urologist at Jefferson Hospital.
The purpose of this posting is two-fold. First, to thank all of you who have been
sharing your experiences on the SeedPods website. I have learned so much from you.
Secondly, the only way I know I can pay back is to share my experiences with all and any
who might be helped. I intend to do just that. In this posting I will give some
background, some facts and some observations from my research and experience.
Background
In July of 1994, at an annual physical, my doctor noted a "roughage" during
the DRE and my PSA went from, 3.7 to 4.9 during the past year. I did a TRUS with a
negative report from my doctor who said "Let's watch this every 3-6 months."
From 1994 to 1997 my PSA went to 5.2 and down to 4.7. However in July 1997, we saw a 6.2
PSA, a little different feeling in the DRE and thus a Biopsy. Cancer! Gleason (3+3)6 in
two of the six picks. I took my slides from Jefferson Hospital to Walter Reed Army Medical
Center for a second read (3+3)6 in one and (3+2)5 in the other.
I began my research with the Andy Groves' article. Bone scans and CAT scans were
negative. However, I found that I had a 79cc prostate which I knew was large. It was at
this time also that I found the SeedPods website.
I read everything I could, talked to everyone I could find who had background and then
got five separate opinions.
I believe I have two of the top Urologists in the Nation, Dr. Leonard Gomella of
Jefferson and Dr. Dave McCleod at Walter Reed. Both spent a lot of time with me --
preferred a surgery approach for me -- but both of them personally opened the doors for me
to their colleagues who were doing brachytherapy. At Walter Reed, Dr. John Halligan spent
hours going over my options and making clear the pros and cons of brachytherapy. Dr. Adam
Dicker, who had come to Jefferson from Sloan Kettering as a protégé of Dr. Kent Wallner,
also spent hours helping me understand especially the physics of brachytherapy and the
importance of planning.
I then went for a fifth opinion from Dr. Dan Clarke at the Northern Virginia Cancer
Center. Dr. Clarke, as most of you know, is one of the pioneers in the field. Dr. Clarke
added one more test to the analysis -- an MRI!
I considered surgery as an option during my analysis. However, as I began to finalize
my decision to do brachytherapy, I then began crystallizing my analysis on the different
options that included brachytherapy.
I was staged 6 or 7 times so I took the majority T2b. All three radiation oncologists
recommend CHT, EBRT and SI. I had come to the same conclusion. With a 79 cc gland, I felt,
as did all, it should be smaller. With a PSA of 6.2, Gleason 6, and Stage T2b, I could
have been a candidate for SI alone but I did not like the odds from the Partin table. The
MRI convinced everyone if they needed convincing. And so on 1 September 1997 I began CHT
-- Lupron and Flutamide.
Flutamide was stopped after 90 days because of liver issues. Lupron was continued. In
January 1998, the original time planned for EBRT, we still did not like the size of the
prostate nor the closeness to the bladder, so a two-month delay. I began a 28 session EBRT
(six directional, not four) in March and completed in April. . . and the seeds on 28 May.
Lessons learned
- The Flutamide issue could have been serious if we were not monitoring the AST and ALT in
my quarterly blood tests. In the fine print of the Flutamide info, it suggests some
patients could have this adverse liver reaction. I did. My advice -- watch it.
- Other than the Flutamide issue I handled almost nine months of Lupron with no
difficulty. In my opinion soy was very important in this process. One soy product I used
was recommended in the CAPCURE study -- Take Care (I-800-445-3350. ) I am sure there are
others. I had minor hot flashes but no problem. I did find my self a bit quick tempered. .
I knew of the weight gain problem with CHT and fought it successfully with diet and
exercise. (I did a two week "get healthy with diet and exercise" program in the
beginning to be as healthy as possible.) I was 182 pounds in July 1997 and am 177 pounds
today. I really should be at 165 pounds. Some people my not find a five-pound loss
significant but most people are reporting weight gains during CHT. Thus, in my opinion,
diet and exercise are an important aspect of the process.
- I experienced no difficulty during the 28 sessions of EBRT totaling 50.4 Gyk. I was
impressed with the physics of six dimension EBRT practiced at Jefferson Hospital as I
studied the plots and computer graphics.
- Other side effects experienced during CHT and EBRT. I should have mentioned in the
background that prior to my diagnosis in Aug 1997, I had no symptoms. I was having no
difficulty with urination and was up maybe once a night even with a 79 cc prostate size.
During CHT, I found the opposite, minor difficulties in urination and up frequently at
night -- during one two-week span in January, before EBRT, up ten times a night. Weird! I
was given FLOMAX at one time during these episodes. I used it for ten days, and then my
doctor and I decided only to use it if I wanted to. I stopped. I did find that Ibuprofen
helped a lot when I had these night issues. And then more weirdness, by the time I
finished EBRT I was sleeping through the night, and flowing like the old, taking nothing.
- I am convinced that exercise, diet and getting healthy for all of this was extremely
important to making CHT and EBRT a non event.
- I am also convinced that having the kind of input received on the net from all of you
allowed me to operate under what we would call the "Doctrine of No Surprises" --
a great benefit.
And now for SI
I did the usual get-ready planning steps. I became convinced that that the planning
phase of the SI program is a major key to the success of any SI program. The physics and
computer analysis that set up the SI are critical. I became convinced that the Jefferson
team was outstanding in the field and so I entered the Hospital on 28 May with major
confidence: confidence in Dr. Adam Dicker who would do the seeding and whom I had gotten
to know and respect over the nine months; confidence in Dr. Leonard Gomella, my urologist
for the past four years who would be in the room with Dr. Dicker and confidence in the
planning team that had worked behind the scenes.
My team (a good thought --"my team") recommended general anesthesia but would
have done a spinal if I insisted. Again research! I went with the general anesthesia
mostly on the advice of my team who wanted to be able to be as precise and accurate as
they could and felt this was a better procedure for them. I had no trouble with it or
afterward.
My team also kept their SI patients overnight with the catheter in. I already knew I
liked the idea from responses on the NET.
While I was asleep, the seeds were implanted by Dr. Dicker. Afterwards, Dr. Gomella
checked to see if any seeds had gone to the bladder -- none. Then I went back to the CAT
Scan equipment so all my team could see how we did. Quoting Dr. Dicker, the plot was
"gorgeous." I'm not sure I'd use this term on the prostate -- but I love it!
Unlike some of you, I was not hungry that evening. I ate some and drank lots of water.
I am sure I passed at least 2 blood clots during the night -- maybe more. Catheter out at
6 a.m. Did enjoy breakfast. My first attempt at urination was not a stream, was not a
dribble, but was a spray -- either sit down or use the bottle provided. Walked back to
hotel at 11 a.m. Lots of urgency and burning until 4 p.m. when I passed a dime-sized blood
clot. Things got better. Today is day eight. Still some urgency, some mild burning, lots
of visits at night -- but feel great. My team has given me FLOMAX if I feel I need it. I
am choosing not to use it at this time. I am taking some MOTRIN. I know days 9-16 are on
the horizon. Again thanks to all of you -- no surprises!
Observations
- Stay tuned to the rest of your body with your general practitioner as you enter into
this treatment.
- In my early research when I found that Walter Reed Army Medical Center and Bethesda
Naval Medical Center were doing brachytherapy, I knew we were past the experimental stage.
- I feel that the triple hit of CHT, EBRT and SI was best for my future even though it
took a long time.
- Although there is controversy as to whether the MRI is necessary due to the cost, in my
case it was used to lay out my plan of attack in August 97 and for the SI plan in 1998. It
was good for me.
- Free PSA. Two weeks before my diagnosis in 1997 my Free PSA/Total PSA ratio came back at
24.9% -- reference range less than 14 indicating cancer. The Free PSA really missed it in
my case.
- I feel that the overnight stay with catheter was a good decision.
- I feel that confidence in the team -- my team -- is critical to the program.
- I personally feel that the Thomas Jefferson Hospital team led by Dr. Adam Dicker is top
flight in the Radiation Oncology/SI field.
- Again I feel that good diet/nutrition will help me get through the next few months.
- And for the rest of my life -- low fat, lots of vegetables and fruit, a planned vitamin
and herb program, lots of soy, two glasses of the finest wine with dinner and a good
exercise program -- that's where I will be. Since I spent a lot of research time on
nutrition and exercise, I will prepare a separate posting of my views and what I have
learned.
- Technology, modern medicine, "my team," my family and friends, you and the
Seedpods Net and lots of prayers have helped get me to this point. With this continuing
help I intend to carry it the rest of the way.
If anyone wishes to contact me personally, here is my phone number: 717-384-4116.
Bill
Bill Hilsman loghome@epix.net
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George
Luttmann's Story
In November of 1998, I had my annual physical and for the first time since I have been getting PSA tests, the reading exceeded 4.0 - it was 6.3. My previous PSA tests were changing and moving upward enough that my doctor was having me tested every six (6) months. After receiving the 6.3 reading my doctor recommended that I make an appointment with a local urologist and I did. He examined me, didn't feel any tumors or abnormalities with my prostate but put me on medication to be sure I didn't have prostatitis. His intention then was for me to have another PSA test after I finished taking the medication. I then began to think more abut my situation and decided to change my urologist to a former neighbor of mine from years ago, Dr. Grant Mulholland. He has been the Chief Urologist at Thomas Jefferson University Hospital for quite a few years. He also examined me and found nothing unusual with my prostate except that it was enlarged which is not unusual for a man sixty-nine (69) years old. Dr. Mulholland ordered another PSA test and once again it was 6.3. Then a biopsy of the prostate was scheduled and performed. The result of the biopsy was that I had prostate cancer. They took six (6) specimens and four (4) were okay but the other two (2) indicated Adenocarcinoma of 10% and 20%, with a Gleason score of six (6). In the discussion of the results with Dr. Mulholland, he said that on a scale of one (1) to ten (10) I was about a five (5). He recommended that some action be taken and said I had these options. One, surgical removal of the prostate, two, external beam radiation and three, seeds implant.
Dr. Mulholland said they all had successful results but the seeds implant didn't have historical data for as long a period of time as the other two. When I asked him what he would do if it were his personal problem, he said everyone asked him that and he would have surgery. I told him that I had read one article about prostate cancer given to me by my wife and was impressed with the seeds implant procedure, even though I wasn't very well informed.
Dr. Mulholland scheduled CAT scan and bone scan studies to determine if the cancer had spread to other locations in my body. The results indicated no evidence of other cancer from these studies.
I then began an investigation for approximately two (2) months to ascertain which procedure I would select for myself. I began by calling the local reference librarian and I was very fortunate that a gentleman had just left her desk who was very active in the Bryn Mawr Hospital prostate cancer support group. His name is John Marshall and he couldn't have been nicer and more helpful. He made recommendation for reference material, have me a book and other information and told me a lot of things that helped me to get started. After pursuing a few books, many excellent articles and talking to several people, both professional and laymen, I ruled-out surgery and external beam radiation. The reason for this decision was that I concluded that the parameters for my prostate cancer, meaning a PSA below ten (10), a Gleason score of six (6) and assuming detection in the early stages, were such that the seed implant procedure would be successful. In addition, I liked the quicker, easier procedure and the probability of less initial and potential permanent side effects. I also liked the idea of intense radiation right at the source-the prostate. Now my major problem was who was I going to decide on to perform the seeds implant. John Marshall had told me "early-on" that Dr. Adam Dicker at Thomas Jefferson University Hospital had an excellent reputation in the Delaware Valley. That helped initially but it was important to me that I do a thorough evaluation before making a final decision. So I felt that I had read enough material on prostate cancer but wanted to talk to some of the right people to help me further. The very people I spoke to were as follows: 1-my wife and I had an initial meeting with Dr. Dicker; 2-I had a meeting and I thought a second opinion with Dr. Eric Horowitz of Fox Chase Cancer Center; 3-an excellent discussion with Dr. Kent Wallner of the University of Washington and one of the developers of the seed implant technique, he was so supportive and patient in listening to my story and offered some excellent recommendations and I also read his wonderful book; 4-I spoke briefly with Dr. Richard Whittington of the University of Pennsylvania and learned how they proceed with the seeds implant procedure; 5-spoke with a man referenced in Dr. Wallner's book who is instrumental in an internet support group located north of New York City (NYC) along the Hudson River; and 6-had discussions with men at the Bryn Mawr Hospital support group, a few who had the seed implant procedure done by Dr. Dicker.
I had the seed implant procedure performed by Dr. Adam Dicker in March of 1999. There were two main reasons that I selected Dr. Dicker. One, I was aware of several men who had performed many more seed implant procedures than Dr. Dicker and who were pioneers in the specialty. They were primarily located in Seattle, Florida, Virginia, NYC, etc. One of these so-called "giants" was Dr. Kent Wallner. However, Dr. Wallner commented that several years ago it would have been prudent to select one of these "out-of-town" experts but today it was not necessary. What I assumed he was implying was that Dr. Dicker, who trained under him had sufficient experience and was very capable of doing just as well as these other big names in seed implant procedure. Two, my wife and I were tremendously impressed with Dr. Dicker. The words that very easily come to mind are professional, experienced, confident, capable, very intelligent, precise, didn't solicit my business, very respectful of my wife and I, a nice man and a man of God. There, the two men I spoke to at the Bryn Mawr Hospital support group meeting who had the seed implant procedure done by Dr. Dicker were very enthusiastic in their recommendation of him. Dr. Dicker and after all the tedious investigation I went through, the ultimate decision was easy and I am convinced I did the right thing for me. I will continue to attend the Bryn Mawr Hospital prostate cancer support group and am becoming knowledgeable of the importance of changing my diet. I have already disciplined myself in making significant changes which are primarily emphasizing minimizing saturated fats in my diet and increasing fruits, vegetables, fiber, tomato sauces and products, soy, beans, etc. I am very appreciative of the help I have received by others the last few months and will gladly offer whatever advice or assistance that I can provide to anyone in need. I would be remiss if I didn't close with sincere appreciation to Dr. Adam Dicker, Dr. Grant Mulholland and the outstanding care and service by Thomas Jefferson University Hospital.
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