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age/treatment/results/doctor info

shocked
Posts: 6
Joined: Jan 2010

It's been 2 months since my last post as I have tried to forget thinking about the situation. I would like to hear from people close to my age( 46) and hear about their decision on treatment and /or their results from treatment. I was just diagnosed in January and I am in the beginning stages of prostate cancer. I am from boston area and have been seeing Dr Stern from Mystic Valley Urological in Stoneham ma. Would love to hear any info on patients of his.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You can see my many posts and my path..I too was pretty young..and bet I even had it at 46...as my first PSA test in my life was just after my 52nd birthday. One thing you have going for you is a young age - recovery will be easier generally speaking from surgery.... I had davinci and 60days out from it was continent and can still have sex...I'm a happy guy! I tribute that all to my past athletic life, my surgeon team, and my young age and of course my desire to win at beating this beast.

Randy in Indy

Trew
Posts: 891
Joined: Jan 2010

You are lucky, Randy, it doesn't always work out that way for everyone. Everytime surgery is done the end results are uncertain. I know surgery gives a lot of guys peace of mind knowing that the cancer is out of their bobies, but many who have had proton therapy are very happy to not be shooting blanks and to still have the same quality of life they had before treatment.

I wish with all my heart I had my cancer caught earlier and I had the option of proton therapy. In my opinion, surgery is not the best option for everyone.

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

Hi shocked things seem bad at present like many of us on this site we have been down the surgery road and arrived healthy at the other end Like Randy has stated many times some how we come out of this stronger and better for it. I was 50 when diagnosed had surgery in Dec 2009 now 3 and a bit months latter getting back to a normal lifestyle almost dry most days and working on the ED isues .But I guess the bonus was I am alive and the Dr tells me all is clear now so can move forward to good times ahead . Hope all goes well be possitive and stay fit youve caught this early .god bless Shane59

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hi , my hubbie is 51 and has decided on DaVinci, now we are 'surgeon shopping'. Hubbie wants cancer out and GONE.
I have a friend who put me in touch with a 44 year old and his wife, he and his twin brother both diagnosed at 44. Would be happy to give you their email addy, just email me at snooksmama@insightbb.com and let me know if you would like to talk to him. He is very open to talking to anyone about this prostate cancer beast. Best wishes.

bdhilton
Posts: 752
Joined: Jan 2010

Great to hear you have made a decision. Lots of good surgeons out there but only a few masters…so take your time. If you do not mind traveling I would have the Master do it up at the Ford Clinic in Detroit… Since your husband is an excellent good candidate you IMHO any surgeon will love to have you for their statistics (I am afraid a reality with a lot of these surgeons is the operability of the candidates) …best of luck and happy you are taking next steps…

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Thanks, but Detroit is a little far. I've used all my sick time for 2 surgeries in January, just went back to work two days ago. We will either go to Indianapolis to either of 2 surgery groups who have lots of experience or a local group with 800 plus surgeries. Indy is only 2 hours away. Detroit would be a big stretch for us and would be difficult for me to be able to go with no time off available. Thanks for the advice. Yes, we know any surgeon will take him, we just have to pick who we think is the best and the best 'fit'. As a nurse I am pretty savvy but hubby will make final decision.

bdhilton
Posts: 752
Joined: Jan 2010

I assume you are looking at Randy's team and from my research and this board there are a few excellent DV teams in your area...I am so happy for you guys for making the first step of selecting the treatment...best to all

Trew
Posts: 891
Joined: Jan 2010

You are an excellent candiate for proton therapy. You should at least look into it.

do a search on: Loma Linda proton therapy

and get their free book and DVD on proton therapy. You are too young for surgery and sexual dysfunction and urinary proplems. Once you get the book and read it from Loma Linda you can look at other proton therapy sites- you have options. The author of the book is form your area, BTW. I am sure he would be happy to speak with you since he has now become a spokesperson and advocate for proton therapy. The author's name is Robert J. Marckin. You owe it to yourself to at least read the book and watch the DVD.

Trew
Posts: 891
Joined: Jan 2010

This site is worth cnsidering:

http://www.protons.com/

Poke around, you'll find a link for requesting info, testimonials, other useful info. This is so much more fun than surgery.

And here is a link to former proton patients worth looking at for sure:

http://www.protonbob.com/proton-treatment-homepage.asp

And Mass General Hospital now has a proton Department- this is cuttng edge tech now being turned on PCa:

http://www.massgeneral.org/cancer/news/multimedia.aspx?id=46

The link above is past their home page. I typed in proton on their search feature and found this link. Proton therapy is new to Mass General. Most proton therapy units are modeled after Loma Linda's- LLU was the first in the US to install and use proton beams to fight cancer.

Trew
Posts: 891
Joined: Jan 2010

I took this from the BOB- a fellowship of former proton patients- and there are hundreds who are members of the BOB including a lot of doctors. So read on.....

Terry Wepsic M.D. - Huntington Beach, California (posted 3/27/03, updated January 2009)

Dr. Wepsic is a physician/pathologist with a specialty in cancer biology and tumor immunology. When a cancer researcher chooses Proton Therapy to treat his prostate cancer, it speaks volumes about the efficacy of this treatment option.

I am a 61 year-old academic pathologist/hospital administrator with Long Beach VA Hospital and Associate Dean for Research at the University of California Irvine. My research specialty is tumor immunology and tumor biology. I have had a rich and very interesting academic career and have published many manuscripts in cancer immunology.

When I was diagnosed with prostate cancer on one biopsy out of ten, had a Gleason’s score of 6 and a PSA of 5.3, I was somewhat surprised, but knew I had some work ahead of me. I reviewed various publications on prostate cancer, sought some expert advice from colleagues and friends and looked at Dr. Walsh’s book on the Prostate entitled “The Prostate—A guide for Men and the Women Who Love Them.” At my “young” age I didn’t want to do watchful waiting.

As a Patholgist my first inclination was to “cut it out-examine it and be done with it.” I looked at the rate of cure from Surgery, the complications of surgery including the morbidity and mortality. I reviewed Robotic Surgery or Virtual Surgery, which had been implemented at the Henry Ford Hospital in Detroit as it is now being performed at UCI. Following the review I felt the potential for complications of impotency, incontinence, infection etc. seemed to be significant issues. I came to the conclusion that surgery was probably overkill for my early stage disease.

On to the next treatment. I looked into Brachytherapy in detail. Discussed it with colleagues and again reviewed the relevant literature. The “Best Place” to have this form of therapy was in Seattle at the Seattle Prostate Institute. They had an excellent web site which was user friendly, and they contacted me right away. My wife and I went to Seattle, had some great seafood, met up with some of my friends from years ago, and I had a first rate experience of assessment and an interview with Dr. Peter Grimm. He was a pioneer in this field, very personable and clearly a leader in this field. My prostate was right at the edge of being treated at 60.4 grams. I felt confident that I could be cured of my cancer by that treatment modality. I might add that in my discussions I always said that I was weighing the possible treatment options including proton beam treatment. Dr. Grimm felt that either form of treatment would be just find and said to say hello to Dr. Rossi.

I did my homework again on Loma Linda and proton treatment. This included talking with a friend at the Gym about his experience at Loma Linda. He was very happy with everything except the drive from Huntington Beach (62 miles each way). My wife and I met with Dr. Rossi and during our discussion I asked him where he went to Medical School. He said Loyola University in Maywood (Chicago), Illinois. After some calculation we recognized that I had taught him Pathology and Cancer Biology at Loyola. I was a Professor at Loyola from 1981-1989.

We talked about how cells die with Proton Beam Therapy. It appears that with both Proton Beam Therapy and Bracytherapy cells die via a process called “apoptosis” i.e. programmed cell death. There is evidence in the literature to say that this type of cell death promotes stimulation of the immune response. Dr. Rossi and I discussed the field of irradiation and my recollection is the field was to be 1.2 cm outside the prostate and to include the seminal vesicles. I felt that this field of treatment was slightly greater than for brachytherapy. The decision was made to go with Proton Beam Therapy. I knew peripherally about the “infamous balloon” but since I worked for the Government for 30+ years I felt some kinship to this procedure and at least I would know when it was coming.

I am half way through the procedure and have treatment early in the morning. This allows me time to go to the Drayson Gym for a solid workout. It also allows me to avoid the bulk of the rush hour traffic.

The bottom line for any form of cancer, is that it is important for the doctor and patient to make the best informed decision they can both live within the future. I am very happy I chose proton Treatment at Loma Linda. The facility is first rate; the people are very professional and caring; and the patients have been fun to get to know. 19 more treatments to go, as of March 27, 2003. I am already having separation anxiety but am not sure if it is from the balloon, the patients, the staff or the whole enchilada.

Terry Wepsic - Huntington Beach, California

Email: Capttw@aol.com

Letter to Wall Street Journal

On February 1, 2005 The Wall Street Journal published an article on Proton beam therapy referring to it as “…a well kept secret in the war on cancer.” Dr. Wepsic wrote to the editor of the WSJ, acknowledging the Journal for bringing attention to Proton therapy by publishing the story. Here is Dr. Wepsic’s letter:

To the Editor of the Wall Street Journal:
I appreciated your recent article on prostate cancer treatment using Proton Therapy. I am age 63, Yale Medical School Graduate, NIH trained, academic physician/pathologist/administrator/educator who has investigated cancer for over thirty years. I have been the primary instructor for second year medical students, introducing them to cancer biology. I was diagnosed with early stage prostate cancer in December 2002, and received proton therapy at Loma Linda University Medical Center. As a sophisticated consumer who is well insured, I could have chosen any form of treatment at any location in the country. I was shocked to reconfirm diagnosis of my own cancer on the lab’s pathology slides. Treatment options included laparoscopic surgery at the Henry Ford Hospital in Detroit, brachytherapy at the Seattle Prostate Institute and Proton Beam Therapy at Loma Linda.
Proton beam therapy is totally different from any other form of radiation therapy. Energy from the proton is released only when they stop traveling. Eighty-five to ninety percent of the protons go to the prostate. Only ten percent go to surrounding adjacent tissue. This is in contrast to an effective dose of sixty percent for gamma radiation. Protons can be precisely targeted by exact positioning of the patient and the beam. Radiation can include the area surrounding the prostate capsule and the seminal vesicles. These are two areas where tumor spread can occur, even in early stages of disease. The protons can be tightly focused, and are at present being used to treat wet macular degeneration of the eye in addition to prostate cancer. The macula is about the size of a large grain of rice. Approximately 33,000 patients have been treated worldwide with proton radiation, including cancer of the brain and spinal cord. The cure rate for prostate cancer is comparable to all other forms of treatment, and the side effect profile for erectile dysfunction and incontinence are lower. Many patients have had full post-treatment recovery, including myself.
Loma Linda has led the way with proton therapy for prostate cancer for over fifteen years. Approximately 150-175 prostate cancer patients receive treatment every day, with two shifts being run in four treatment areas. Treatment takes about eight weeks. Patients and their spouses have positive, enjoyable interactions including golf outings, tourist trips and a weekly support group filled with healing humor and concern. Many of these activities are sponsored by the social work staff at Loma Linda. A very supportive web site has been formed at www.protonbob.com. The web site publishes an informative and educational newsletter for over 2000 members.
The best part of my experience was that my primary physician at Loma Linda Medical Center was a former medical student of mine. I have been “beamed up” as Scotty would say, and I am a better person for this experience. Onward to building more proton centers so treatment advances can occur worldwide.
H. Terry Wepsic, M.D.
Professor Emeritus of Pathology, University of California, Irvine, CA
Research Professor at Long Beach V.A. Healthcare System,
Long Beach, CA

LATTITUDE 38

In addition to being a cancer researcher Dr. Wepsic is a sailing enthusiast. A while ago he wrote an article for “Latitude 38” sailing magazine about his prostate cancer diagnosis – in an effort to alert his sailing friends to the importance of early detection of all forms of cancer. Following is a reprint of the article.

I have enjoyed reading “Latitude 38” over a number of years and find a few boaters “pearls of wisdom” in each and every issue. The reading has made me a better skipper. MANY THANKS. When my wife and I traveled to Opua, New Zealand, a current copy of “Latitude 38” served as our ticket to their Christmas Yacht Club Party. Terrific people.
The purpose of my letter has to do with helping sailors have many more happy days behind the wheel or grasping the tiller on a beam reach. We all know about pride of ownership for our boats and how important it is to keep up with the zincs at the heat exchanger, do routine oil changes, clean and clean and clean the boat, check lifelines etc. I keep a logbook documenting service, as every good boat owner should.
Something recently cropped up in my life that had—and may yet have—the potential of altering the number of happy days I have behind the wheel (in my case we have a Catalina 34, hull 109, named “Dazzler” after Jack London’s book “Cruise of the Dazzler.”
I was diagnosed with prostate cancer at a very early stage. The irony of this is that I am trained as a Pathologist (the person who looks at the slides) and I am a specialist in cancer biology and tumor immunology. I had been having routine PSA examinations done over the past several years and noted a slight increase in the values. Since I knew that I have a 20% risk of having cancer, I went in for the “educated feel” by a urologist and then had biopsies. What do you know, I had cancer on one of the 10 biopsies. I, of course, had to look at the slides for myself and confirmed the diagnosis. I evaluated the basic forms of prostate cancer treatment and I am currently being treated.
We were sitting at a bar at our Yacht Club (Seal Beach Yacht Club) and the topic of “my news” came up. One fellow on one side of me said, “Oh I had prostate cancer,” and the fellow on the other side said “Me too.” Yes, it is a common disease being diagnosed in more than 200,000 plus patients per year in the US and approximately 31,500 died of it in 2001.
The question I asked myself was “How can I help spread the word to those I care about most—fellow pirates and their wenches—about the need for men to take more “pride of ownership” for their health, and get screened for prostate cancer?” I immediately thought of “Latitude 38.” So here it is mates. ALL CANCERS ARE NOT EQUAL. There are small c’s, middle C’s, and big C’s. Examples would be basal cell skin cancers, prostate cancer and lung cancer respectively. MOST CANCERS ARE TREATABLE AND MANY CAN BE CURED. YOUR BODY HAS VERY POOR WARNING SYSTEMS — not unlike the bilge on your boat.
What can you do? First, don’t smoke. Tobacco and it’s by-products contribute to greater that 50% of all cancers. For cancer screening, it is very clear. Know the signs of skin cancer. After the age of 55 be screened for colon cancer by a Gastroenterologist. After the age of 50 have yearly PSA evaluations performed. If your values are elevated or if there is an increase see a Urologist and have the biopsies. If you are diagnosed with prostate cancer, chose a treatment that works for you. IT IS IMPORTANT TO DETECT ANY CANCER AT AN EARLY STAGE BEFORE IT HAS SPREAD AND THIS IS ESPECIALLY TRUE FOR PROSTATE CANCER.
While you are creating your “personal health care log book” you should go ahead and have your blood pressure and lipids (cholesterol and the sub fractions) checked. I would hate to have you cured of prostate cancer and then have you die of a stroke from high blood pressure.
If you follow my suggestions it is highly likely that you will have more days to enjoy your boat as well as your sailing mates. Isn’t that what we sailors want to do?
Over and out — I have to go back to cleaning the boat and checking the bilge…

Terry Wepsic - Huntington Beach, California

Email: Capttw@aol.com

Update January 2009

This spring, 2009, I will celebrate six wonderful years after treatment at Loma Linda University, utilizing proton therapy for my prostate cancer. I am now age 67. I am fully retired from hospital administration, teaching medical school and doing cancer research, but have maintained a keen interest in the treatment and follow up of a variety of treatments for prostate cancer. Proton therapy still remains the best choice for early stage prostate cancer. The treatment field encompasses the prostate, the adjacent periprostatic capsular soft tissue, and the seminal vesicles. These latter two areas are primary sites of tumor recurrence.

How am I doing almost six years after treatment? The answer is easy, as soul singer James Brown once said, “I feel good, and knew that I would now!” I have had no significant side effects from treatment. Because treatment encompassed the sites where ejaculate fluids are made, the prostate and the seminal vesicles, I have had a decrease in ejaculate material, but all other plumbing issues are up to life’s joys and challenges. My PSA nadir is 0.3 and I am pleased with this result. Would I choose proton therapy again and drive the 5380 total miles for treatment? The answer is a definitive YES. I live approximately 60 miles from Loma Linda and had to drive 120 miles each day, roundtrip.

In the past six years, I have had the opportunity to get to know Bob Marckini, who is responsible for the www.protonbob.com website. We are so lucky to have a dedicated, retired professional, such as Bob, who cares so deeply about each and every individual patient who inquires about prostate cancer or who chooses proton therapy. It has been and will continue to be a pleasure for me to talk with patients about proton therapy for prostate cancer. Many of these patients have chosen proton therapy, and they have been very happy with their choice. This includes many of my personal friends. Bob has written a book titled, You Can Beat Prostate Cancer and You Don’t Need Surgery to Do It. It is available from Amazon. The book is very informative, well written and medically accurate. He has done a great service for all people who are diagnosed with prostate cancer. Thank you, Bob, for all of your efforts.

While I am grateful to Bob, I would be remiss if I didn’t thank Dr. Jerry Slater, and his team of professionals for developing the technology to create proton therapy. The treatment team includes Dr. Carl Rossi, Sharon Hoyle, and Lynn Martell, who in 2003, gave unselfish dedication to my personal treatment, as well as countless others to this day. My life has been positively changed by their commitment to excellence. They certainly have made the Loma Linda Mission Statement, “To Make Man Whole” a viable part of so many lives.

The bottom line? Proton therapy was a wonderful treatment for me, my wonderful wife, and extended family and friends, who share our commitment to fully engage in life. Prospective patients should feel free to continue to contact me. It is a pleasure for me to help them understand this disease and its treatment.

Email: Capttw@aol.com

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

What excellent information you have posted. Can I make a suggestion? Can you repost all this in another, new thread so others can read it and go straight to it? Its wonderful, encouraging information and you obviously worked hard to compile it.
Hubby wants nothing to do with any kind of radiation whatsoever.
In his career as an industrial electrician, electrical site supervisor, and a short stint in a chemical plant 3+ years ago, he has had a lot of occupational exposure in his 30 year career. We wonder if a minor spill of chromium he was hit with the year he started with hematuria has anything to do with this new diagnosis. Probably not, but he does not want to be exposed to chemicals or radiation. I have to respect his decision.
Yes we are looking at Randy's group (Scott and Hollensbe) as well as Dr. Michael Koch, who is reviewing his biopsies. We are also looking at the most experienced local surgeon in our area (Bradley Bell).
Oh Trew, I did request the info from Loma Linda, it has never come. Oh well, hubby won't consider it anyway.
Thanks guys for all the incredible information.

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Shocked...I'm still shocked as well. Doing much better than two weeks ago. Just found out via biopsy that I had a positive specimen. I'm 44, in relative good health, pretty active, etc. Go figure. My PSA is 2.2, stage T1C (which I guess doesn't mean too much considering the majority of people are diagnosed the same way...), and a Gleason score of 3,4=7. My doctor has used the term early detection in my case, but has also used the term "aggressive" in my case too. He told me to read this book by Dr Patrick Walsh - Guide to Surviving Prostate Cancer - I have to admit it's pretty good, however the book is dated 2007 and my inquiries regarding the subject/technology sway away from "open" prostetectomy as the book would imply. Had a friend that entertained Da Vinci about three years ago...I hear that the robotics technology has drastically improved since three years ago...I've read much about proton therapy...I'm in Virginia Beach area...looking for some well informed input as well.

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Shocked...I'm still shocked as well. Doing much better than two weeks ago. Just found out via biopsy that I had a positive specimen. I'm 44, in relative good health, pretty active, etc. Go figure. My PSA is 2.2, stage T1C (which I guess doesn't mean too much considering the majority of people are diagnosed the same way...), and a Gleason score of 3,4=7. My doctor has used the term early detection in my case, but has also used the term "aggressive" in my case too. He told me to read this book by Dr Patrick Walsh - Guide to Surviving Prostate Cancer - I have to admit it's pretty good, however the book is dated 2007 and my inquiries regarding the subject/technology sway away from "open" prostetectomy as the book would imply. Had a friend that entertained Da Vinci about three years ago...I hear that the robotics technology has drastically improved since three years ago...I've read much about proton therapy...I'm in Virginia Beach area...looking for some well informed input as well.

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