The Promise of Proton-Beam Therapy

The Promise of Proton-Beam Thearpy

Adam Voiland is commended for a well balanced piece on proton therapy covering all the (proton) bases. Although initially interested in the advantages of prostate treatment

dating back to last fall, I'm pleased to see he took the time to understand and present a broader picture of what protons are capable of achieving in radiation oncology for the entire cancer patient population.

Leonard Arzt,

Nat. Asso. for Proton Therapy

Silver Spring, Md

Well-written, cogent story

Medical treatment has a very large economic and political component. It's a shame that this component is so little discussed in America, especially during a Presidential election when a new administration, with an educated electorate behind it, could bring more justice to treatment decisions for all medical conditions.

Thank you for your timely article. Please continue in your effort to educate America about its medical failures and successes so that we can think more clearly and cogently about solutions.

Proton Therapy

I read with interest your article on Proton therapy. Protons theoretically offer superior deposition of radiation for treatment of tumors and fewer side effects. If only we were certain of the exact extent of the tumor! Most tumors do not have such clear defined edges and therefore are not treated any better with protons or today's IMRT/IGRT technology.

The real question should be if we can afford to spend 150 million dollars on a machine that has not been proven to be more effective at curing patients. Can we afford to spend 4 times the amount for treatments with protons when we are already facing a crisis in health care expenditures? Let's get good scientific data before we spend on such therapies.

Proton Therapy

Thank you for your article on proton beam therapy. You were fair in your coverage and made excellent points. Just one minor point: you neglected to mention Robert Marckini's excellent book: "You Can Beat Prostate Cancer - And You Don't Need Surgery To Do It".

I note with interest that you have a comment from Dean Conterato of IL that focuses on cost. I wonder if that could be Dr. Dean Conterato, Director of the Radiation Oncology Department at the Rush North Shore Medical Center. Of course he would object on some basis, after all, he is completely vested in IMRT - or conventional radiation treatment. For a prostate cancer patient that could mean serious side effects such as incontinence, urinary retention requiring a catheter, pain, impotence, strictures of the urethra, etc. I suspect he's more worried about how his bottom line is affected by proton beam therapy than the "crisis in health care expenditures".

I have a vested interest in proton beam therapy because someone close to me received that treatment for prostate cancer treatment and today is a vital, energetic man who runs a company and participates nearly daily in two non-profit organizations (one of which he started). He has never experienced any incontinence, impotence, or pain from his treatment and I am forever grateful to proton beam therapy and the fine people at Loma Linda.

Proton Therapy for Prostate Cancer

Kudos to Adam Voiland for writing this comprehensive article on proton therapy, particularly in light of his earlier admission that not mentioning proton therapy in his original article was an oversight. Quality reporting like this is rare and refreshing.

Proton therapy is being discovered. And soon, there will not be enough proton centers in the world to handle the patient demand.

Our group, “The Brotherhood of the Balloon” (www.protonbob.com) consists of 3,340 prostate cancer patients from 24 countries who chose proton therapy. The overwhelming majority of us had our cancers cured and have experienced minimal to no side effects. We don’t need randomized studies to tell us that proton is best. So many of our relatives and friends chose surgery, seeds or conventional radiation to treat their prostate cancer and they suffered the consequences.

You cannot argue with the laws of physics. Proton radiation can be delivered deep inside the body and release its energy at the precise location of the tumor, leaving surrounding healthy organs and tissue unharmed. This is particularly important to men with prostate cancer, as some of the most sensitive parts of the male anatomy surround the prostate.

I am a very happy prostate cancer survivor who chose proton therapy 8 years ago. The quality of my life has never been better.

Proton Treatment Provides Hope for Many Other Cancers

Proton beam therapy is indeed one of cancer's most promising treatments. Despite the limited number of proton treatment centers in existence in the U.S., thousands of patients now have access to proton beam therapy. Loma Linda University Medical Center's James M. Slater Proton Treatment Center treats 150 patients a day with proton therapy--more than any other center in the nation. Although demand for prostate cancer treatment is extremely high at Loma Linda's proton treatment center, we also reserve approximately 50 percent of our treatment capacity for rare and serious cancers of the brain, head and neck, spine, eye, breast, lung and other areas. We are typically able to treat these patients within weeks of registration.

What price on quality of life?

I have seen too many instances of nay-sayers claiming that proton therapy is far too expensive for the benefits derived. To that I can only ask, what price is too much to live a life where one does not have to worry about incontinence? Where one can continue to have physical relations with his wife? Where does one draw the line to say "you're too old to worry about sex anymore anyway, why should you worry about that?". I was diagnosed with prostate cancer at the age of 50, and have only recently completed treatment at the University of Florida Proton Therapy Institute. Even though I was one of the "extreme" cases, with more physical complications than 95% of proton treatment patients, I still had it far easier that patients who underwent surgical treatments. At this point I look forward to a long life that is relatively unchanged from before my cancer diagnosis, and I have proton therapy to thank for it.

Proton Beam Radiation treatment for prostate cancer

I am a 3 1/2 year survivor of prostate cancer treatment at Loma Linda University Medical Center. For someone hearing the terrible news that you have cancer , it was wonderful news for me to find out about Loma Linda. Accidentaly, I might add, from word of mouth. I have had no side effects at all and my tumor is gone. I'm 74 years old and I thank God and the doctors and nurses at Loma Linda for giving me my life back.

Quality of Life Post Proton Therapy Treatment

Thank you for a well written article. I am a recently treated PCa patient who received Proton Therapy @ LLUMC in Loma Linda,CA. I thank God every day that I discovered Proton Therapy.

I know now of literally hundreds of former patients who received Proton Therapy or a combination of treatment modalities whose results mine mirror. I am sixty-seven years of age, and while being treated I continued to ride my bicycle. While in treatment I rode my bike 788 miles, which while not a lot, reminds me that I know of no treatment modality that would have permitted that, or my frequent visits to the gym as well.

Bravo, Mr. Voiland

Thanks for helping spread the word about proton therapy through this well researched, fairly balanced article. As you point out there are those who are waiting to see more random studies. Many, typically MDs, still cling to the old surgical "gold standard". This is easily understandable given their training. My wife, an MD and surgeon, was similarly predisposed until she joined me in researching proton therapy, its overwhelmingly positive results and minimal side effects (all but non-existent side effects in my view). In the process, and through the course of my treatment and follow up she discarded her belief about the surgical standard. We are now both vocal advocates of proton therapy.

I echo Mr. Marckini's words. I am a prostate cancer survivor who chose proton therapy 3 years ago, and the quality of my life has never been better.

We survivors no doubt share a common prayer that this truly wondrous technology / therapy / cure can be extended to other diseases very soon.

What does pain cost?

I am a cancer survivor having been treated by proton beam therpy at Loma Linda Medical Center in Southern CA. I have many friends in my community who have had conventional (X-ray) radiation therapy and have been miserable for about 2 months. The pain and sickness start about a month into the two month treatment and persist for about a month after the treatments have been "completed".

I had not one minute of radiation sickness during my two month treatment at LLUMC. I know of no one of my "brothers" while I was having my treatments who were sick from the radiation. All external radiation, both photon (X-ray) and proton have the potential for some urinary distress and eventual ED. The lack of collateral damage of photon radiation, no matter how well targeted, is worth every extra cent, IMHO, that proton radiation costs.

prostate cancer

treated in 1998 at loma linda univ for prostate cancer .have been cancer free since than .am now to be 86 in oct. and have no side affects.

Proton Therapy

I finished my treatment for prostate cancer last July at the University of Florida Proton Therapy Institute in Jacksonville, FL. I was told I had an aggressive form of PC with a Gleason 7. So far, after treatment I have not suffered anything from the two big "I's"- incontinence and impotence. How much is that worth? Well, compared to my friend who had surgery, "the gold standard", and who does suffer from the two big "I's", and has had his cancer come back to invade his bones: ALL THE TEA IN CHINA, thank you. I would have waited a year for protons if necessary.

Prostate Cancer

I am the wife of a prostate cancer survivor who had a prostatectomy, after which the Dr. discovered through biopsy that the cancer had spread outside the prostate into the lymph nodes and the neck of his bladder. His Dr. consulted with radiation specialists to determine if my husband was eligible for local treatments. They said it would do him more harm if they treated him with radiation. We heard about Loma Linda Medical University through a close friend who had been treated for both a brain tumor and rectal cancer at LLUMC. Today, he is doing very well six years after his treatments. He advised us to call LLUMC and tell them his circumstances. Dr. Jabola read his case and said that he would give him the full spectrum of treatment which meant both proton and photon radiation. This was our only hope for a cure. My husband had two months of treatments beginning in November of 2004 and ending in January 2005. Today, his PSA tests are still at 0.0 after three years. We fully believe that this kind of cancer treatment is the safest (my husband had no bad side effects whatsoever from his treatments), most curative type for tumor related cancers. My husband cancer was a #4. It had spread into his abdomen. The photon treatment they gave him over his entire abdomen gave him the greatest chance of survival. As a wife, I would recommend that men look into this before they go and have a prostatectomy. My husband wouldn't have needed that surgery. He was told that they could get rid of the prostate cancer without surgery. It is the surgery that makes men impotent...not the proton beam radiation. I will continue to pray that consumers and business people spend whatever it takes to build more Proton Beam Centers. I saw wonderful people helped with their tumors while I was at LLUMC from children, to young people, to the elderly. It's a truly miraculous, Godly, healing center. God bless all who work in this field to keep it growing.

Proton Therapy for Prostate Cancer

Having been diagnosed with prostate cancer at age 50 (after my first PSA test) I was never afraid of the cancer but rather the side effects of the surgery that was recommended. Thanks to my good friend John Ebin and Mr. Markini's book I felt "saved." My treatment at Loma Linda was exceptional and the entire time I played golf, surfed, ran, lifted and "Made Man Whole" as they say at Loma Linda. None of my friends could believe that this was "cancer treatment." Suffering absolutely no side effects other than shedding some extra pounds and getting a tan, I ask the naysayers and price police what treatment they will choose when it happens to them. Quality of life during and after treatment CANNOT be quantified, it is priceless! PS: Men, get your PSA tested NOW.

Proton Beam Radiation

Thank you for your April 22, in depth article about Protons. When my prostate cancer was discovered in 2002 I began searching for options. Not one of the 6 physicians visited had anything nice to say about Protons. My choice for Protons came after a venerable old Urologist said: "...a few years ago I would have thrown you on the table and taken that sucker out; but today I believe that seeds are a better idea. It became apparent to me that all these physicians (including radiologist) were protecting their bottom line. I quickly surmised that if seeds were better than surgery, then the most accurate form of radiation would be the best. It was....... I called Loma Linda, asked to be seen and was in treatment within 3 weeks. Loma Linda fulfilled their mission statement. They made me whole.

Your article did seem to cast a palor on the advent of this wonderful new technology. Now with 6 times as many facilities available to treat cancer victims; we who know are celebrating the possibilities, rather than lamenting the lack thereof.

proton therapy

In all options up-front costs are one thing, many other factors come into play. As a surgeon who had successful proton treatment at LLU i don't have to deal with complications that can be very costly and totally impairing.

The spread of proton therapy centers around the world points to the effectiveness of Loma Linda"s ground breaking Proton Therapy Center. Total cost and quality of life must also be weighed.

The only issues associated with Loma Linda's facility is that it desperately needs to be expanded by the addition of another unit.

J. Edson Price Jr., M.D. FACS

He had surgery AND protons... protons win!

We've lived through both sides of the prostate predicament. My husband Ron had surgery in 2005 at age 52 with negative outcomes and minuscule side effects due to an excellent surgeon in the Lehigh Valley, Pa., area. Then the cancer returned.

Just two years after his surgery, microscopic cells were found in his prostate bed -- due to a more aggressive cancer and the cancer not being fully contained in the prostate gland originally. We conversed with a friend undergoing initial proton therapy for prostate cancer at Loma Linda University Medical Center in California. He told us they were also using proton beam therapy for "salvage treatment" for some pinpoint recurrences such as Ron's. We contacted the medical center, sent our records and he was a candidate for the proton beam treatment. It was covered by his insurance at the company he works for here in Allentown, Pa. We had also heard some stories of negative side effects such as incontinence and impotence from our friends who used convential radiation. So we decided to "go West, young man," choosing Loma Linda because they pioneered the treatment.

We planned what support group members call our ''RADIATION VACATION," packing the car and taking an early "retirement" trip cross country, since he will be working another 20 years -- at least. He jogged every day (even when the Sept. Inland Empire temperatures were 108) and said he never felt better in his life. The university offers a list of incredibly affordable short-term rentals for prostate patients and families, many within walking distance of the hospital.

Treatments are half an hour or so Mon.-Fri. for about 6 weeks and the rest of the time can be spent playing golf, sightseeing, working out at the University's state-of-the-art fitness center (for free!) and feeling NO SIDE EFFECTS. He has suffered no incontinence or impotence even after his second cancer treatment.

We saw the Reagan Ranch, enjoyed the L.A. County Fair, hiked Joshua Tree National Park, and witnessed the effects of the devastating fires about an hour east and north of us. We met compassionate doctors, hung out in the waiting room with those "zany" proton patients, and talked football, etc., with the gifted proton techs while recieving "treatments."

My husband says compared to his earlier surgery, proton treatment was "a walk in the park." And he's happy to be as "frisky" as ever, and I guess that means a lot to a 54-year-old guy.

We have only wonderful memories of our "radiation vacation" at what I call the "Club Med for Cancer." We can't wait for the days when more people can utilize this incredible and effective treatment.

Sorry, this was a book. Hey, maybe it will be!

Proton Therapy

I also am a relieved patient treated a the Loma Linda Proton facility with no side effects and an excellent quality of life. I am also a CPA and a professional researcher. One of the failings of the "studies" that indicate Proton treatment is more expensive is that they look only at the one time costs of each treatment, or not at the costs associated downstream with no treatment. Even the most limited of correctly done investigation shows that there is a real and often significant cost advantage to Proton treatment for Prostate Cancer. The most often needed follow up treatments for the urinary and sexual failures found in the other modalities is not insignificant and must be included in a proper cost analysis.

Again, while it would be great to have a statistically significant, peer reviewed, properly done study one can quite easily see what the outcome would probably be by simply finding and interviewing locals who have received the various treatments. In my own case I know of quite a few individuals with treatments spread somewhat evenly among the methods of seeds, x-ray, surgery and Proton. I personally have found that at least 80% of the non Proton patients experience significant subsequent problems and expenses yet I have only met one Proton patient with subsequent problems (less than 10%). It is highly unlikely this is an isolated population.

My curiosity is that when there is a procedure that is, when valued with proper analysis procedures, cost nuetral or even perhaps less expensive, and with significantly higher quality of living results, why would anyone write anything negative about the treatment and the need for more treatment centers?

Proton Thearpy

Adam, Thank you for the article about treating cancer with proton radiation. I received treatments from October to December 2007 at Loma Linda under Dr. Jabola's care. Last summer was spent meeting with various medical professionals, talking to nearly 50 other prostrate survivors and completing a detailed analysis of other modalities. I made the best decision to go to Loma Linda and would make the same decision again today . I was referred to Loma Linda by several other alumni and later unceremoneously released from care ("fired") as a patient by my urologist. I have experienced no side effects or other complications from these treatments and bless God that I was led to LLUMC.

Proton Therapy Side Effects

Dr. Zeitman's statement, "Because of Internet buzz, the morbidity associated with proton beam therapy is underappreciated," is one of the most facile misdirections possible. One can only suspect his motives. Morbidity associated with proton beam therapy is almost nonexistent and ,compared to other treatment modalities for prostate cancer, trivial. This is easily verified by trying to find even one among the thousands of patients treated who has significant morbidity as a result of proton beam therapy. This is the result of the physics and has nothing to do with the internet buzzing. The few patients who become impotent after treatment likely do so because of age related factors having nothing to do with proton beam treatment.

I was diagnosed with prostate cancer in 1994 at the age of 63 with a PSA of 102.6 meaning that the cancer had almost certainly spread outside the prostate. After studying available treatment modalities for several months I was treated at Loma Linda with proton beams to the prostate and x-ray radiation to the pelvic area to cover possible metastasis to the lymph nodes. Since I had only half the x-ray treatments usually used for prostate cancer I got away with a scorched colon and urethra which cleared up within a week after finishing treatment. I was impotent due to hormone suppression therapy for several years thereafter. When I went off hormone treatment the impotence disappeared.

"A Treatment Not All Can Get"

Dear Adam,

First, permit me to convey sincere appreciation and personal congratulations for expending the time and resources in developing this article! BRAVO for you and the enlightened supervisors at U.S. NEWS.

Having celebrated my 75th birthday while undergoing proton therapy in "Dr Slater's Cancer Cure Cathedral" (my title) at Loma Linda University Medical Center, my gratitude for the experience can perhaps be best described as 'PRICELESS'. Any rationale forwarded that seeks to limit future availability of this life-saving therapy is doomed to fail. Adoption of those actions designed to measurably increase worldwide availability can and should be advocated by all.

Your piece is a positive step in assisting decision-makers to better understand the rewards that come to those who choose to reinforce success! I encourage you to continue informing the public of these matters that greatly improve the human condition. Together let's try to make it "A TREATMENT THAT MANY MORE CAN GET" in the years ahead!

Bill Rousse, Fletcher, NC (Another of BOB's members)

LLUMC is More than a technology

The many testimonials to the physics of prostate cancer cure are certainly accurate and will be reproduced at the new facilities. However at LLUMC, their Mission statement "Make the man whole", is in evidence throughout the facility and should be copied broadly to change life styles and assure success. I am cancer free after four years and couldn't be happier with my research, decision and outcome. Bob Marckini's book should be a must read for all deciding on treatment.

Proton Beam Prostate Cancer Therapy

With a PSA reading which had risen 12 points in about 3 years, and all biopsy points reading positive, prostate cancer treatment became a necessity and I was referred to an excellent radiation oncology specialist. Proton Beam Therapy was mentioned by no one in the medical community of our large metropolitan community, but information about it had come in a round-about way. After the optimistic but candid scenario the specialist described, my wife and I told him we appreciated what he had to offer, but would like to check out Loma Linda for their 9 week proton radiation program. His response was, "Why would you want to do a thing like that?! It is an experimental program, and it is unlikely your insurance will cover it." After a wait of over 2 months, for other personal reasons, we began a very pleasant experience amongst a large brotherhood of hopeful patients, very few of whom had heard of proton therapy from their physicians. Loma Linda already had positive clinical records from almost 15 years of therapy, Medicare accepted the treatment modality (for heaven's sake), with the hospital accepting their reduced allowances and the help of our small supplemental policy. They stretched their hours from way before dawn to late into the night, to be able to serve as many as possible with their dedicated staff and equipment. No side effects were experienced, it's been a year and a half, all the follow-ups have been positive and at age at age 79 everything is working as it should in every way. New facilities are beginning similar programs in several locales. And we can't help but wonder why the word gets around so much faster by the grapevine than it does in the medical community.

Proton Treatment

I read with interest, the comments regarding the cost of proton treatment. As a patient from Canada I bore the whole cost of the treatment and would do it again in a heartbeat.

Proton Treatment

Treated January 2006. Prostat Cancer. Insurance padi the entire cost. Had no down side. Have nothing but good to say about Loma Linda. Contact me at

kenkalin@msn.com

It's a no brainer

Every negative comment I have heard, such as that from Dean Conterato, has been from someone totally invested in another type of therapy. The value of proton treatment is best assessed by the who has to live the side effects (or in the case of proton therapy - lack of side effects in my case) of his choice, not the one who has collected his money and is on to the next case. It's easy to tell a patient that IMRT is just as good as proton treatment when the one making that statement doesn't have to live with the side effects.

Loma Linda University Medical Center lives up to it's mission - To Make Man Whole. Thanks Loma linda for great results and no impact in lifestyle other than an imporved attitude about my future.

I too beet cancer the proton way

I had a very positive treatment at Loma Linda with no side effects. It was like a vacation, camping in our 5th wheel at a local RV site touring Southern California with the members of BOB.

In September of 03, I had a PSA of 12.8 and then a gleason score of 4+3, 7. My last test in Jan 08 was psa of 0.1 It hasd been as low as 0.09 but I found it still fluxuates but has not gone to a 1.0... I have tried my best to talk others into the proton treatment to no avail. I have a cousen who went ahead and had seed implants and is now wearing a diaper and is impotent with pain to boot. There just isn't any other option in my book, and stil can't find a Urologyst to consider the process.

Thanx for asking,

Ron

A Physicians's Argument

Dr. Dattoli treats prostate patients with IMRT. His opinion on proton radiation:

http://www.dattoli.com/technology/proton.cfm

Patients tend to advocate the treatment they got. Physicians overwhelmingly tend to advocate the treatment they give.

Proton installations are vastly more expensive than photon installations.

To Mr. Thompson of CA

Sir,

You appear to be suggesting that we believe in Dr. Dattoli's physics as he advocates his modality rather than the wisdom of those who are investing 'vast sums' in the proton beam treatment centers that are proliferating so rapidly.

Comment?

Proton Treatment

Thank you for the article on Proton Treatment. These facilities use their resources for treatment and no advertising. Making the public aware of this treatment is a goal most proton patients who are free of prostate cancer wish to achieve and your article is a great step in that direction. I do hope you will syndicate your article with the smaller news papers.

I am nearly 73 years old. Treatment was in 2002. I am now down to just yearly PC exams with a PSA of 0.11, and no side effects to speak of. I am looking forward to a long retirement with several hobbys and my insurance companys are not shelling out additional payments to specialists to repair initial damage caused by other treatments.

Proton Beam Therapy

One of the most commonly used arguments against the PBT is the cost. I would like to see some meaningful analysis to test the following hypothesis:

1. I understand that from a study undertaken at UCLA (which I am told about, but cannot locate) the ongoing medical cost to the community and to the Health funds is about three times the original cost for traditional cancer treatments. Antecdotically, the ongoing cost of PBT patients is, for all intentional purposes nil (save for the six monthly PSA monitoring). How many health funds maintain the relevant statistics to monitor the costs of various modalities? I would have thought this would be a fundamental management function. Stand up Health funds your contribution to the debate is critical for the future assessment of the technology

2. Once treated, the patient is able to return to work fit and healthy. In many cases many patients choose to work during their treatment. How many cases are out there where through Brachytherapy, Surgery, or other treatments, that there is an ongoing need to treat side effects. What cost to the community?

3. The very nature of PBT does away with the risks of Surgery (infection, blood clots, internal scaring, etc) and the associated risk of a slip up by the Surgeon. He is only human after all. Most importantly, PBT does aware with the trauma associated with invasive techniques. The Patient is able to start from a whole new platform in addressing this insidious disease. Hence the glowing reports from PBT patients about the technology.

4. Critically, it can treat 45 different cancer types. In many cases it can treat patients where it is too dangerous for Surgery of impossible for Surgeons to undertake Surgery. Of huge importance is the ability to treat children stricken with the disease who risk disfigurement and the chance of secondaries under photons. What other modality offers such a range of treatable outcomes?

5. Of course then there is the quality of life issue for the patient. Various comments on your article attest to this. For a female with breast cancer my research shows that many weeks can be spent labouring with Chemotherapy with the associated side effects of hair loss and nausia to say nothing of the need to attend a clinic whlist suffering. Once again what other modality offers these benefits?

7. Why does Japan have seven PBT centres, with a number on the drawing board? Why is there an emerging recognition of the benefits if PBT around the world?

There is no doubt the cost of the treatment will decline with the progress of the technology and the increased acceptance across the community worldwide.

There is a huge obligation on the Medical community to assess what their role is in offering a solution for the treatment of cancers. Firstly, they need to remain abreast of modalities offering a better outcome, secondly put the patient first and thirdly put their prejudices, and if relevant their training in alternative techniques, in the interests of advancing medicine.

Thankyou for the opportunity to progress the debate.

My experience with Proton therapy

Thank you for your article on Proton Therapy. In 2001 at age 68, I had a biopsy with nine cores. All nine cores had more than 79% cancer. My Gleason score was 7 (4+3) and a PSA of 4.1. Within 8 months of proton therapy treatment at Loma Linda, my PSA was at 0.1. By 12 months, it was 0.01 and has stayed there for over six years.

I knew three men that had opted for surgery and two who had 3-D Conformal Beam x-radiation. All have had permanent side effects that are unwanted to say the least. Both of my friends who had x-rays said that when they had a bowel movement, it felt like they were passing broken glass. Then later and still today they have all the side effects that we all fear.

I contacted six people that had been treated at the Loma Linda Medical Center and all recommended it without any reservation. Oh, by the way, all those that had received surgery or x-rays or seeds said they would never do that again. Two of the three that had surgery have since had cancer return and one has died from the prostate cancer after radical prostatectomy. My neighbor had seeds and his cancer has returned. He is being treated with hormone therapy and I hope it is successful.

At 75, I am very healthy and have never had side effects and have recommended protons to six people and four have followed my recommendation and thank me for it.

One person commented above, that “Patients tend to advocate the treatment they got. Physicians overwhelmingly tend to advocate the treatment they give.” The patient part is true for those that chose proton therapy, very few that chose surgery or x-rays would recommend the treatment they received after learning of others who had the proton no-brainer treatment.

My experience with Proton therapy

Thank you for your article on Proton Therapy. In 2001 at age 68, I had a biopsy with nine cores. All nine cores had more than 79% cancer. My Gleason score was 7 (4+3) and a PSA of 4.1. Within 8 months of proton therapy treatment at Loma Linda, my PSA was at 0.1. By 12 months, it was 0.01 and has stayed there for over six years.

I knew three men that had opted for surgery and two who had 3-D Conformal Beam x-radiation. All have had permanent side effects that are unwanted to say the least. Both of my friends who had x-rays said that when they had a bowel movement, it felt like they were passing broken glass. Then later and still today they have all the side effects that we all fear.

I contacted six people that had been treated at the Loma Linda Medical Center and all recommended it without any reservation. Oh, by the way, all those that had received surgery or x-rays or seeds said they would never do that again. Two of the three that had surgery have since had cancer return and one has died from the prostate cancer after radical prostatectomy. My neighbor had seeds and his cancer has returned. He is being treated with hormone therapy and I hope it is successful.

At 75, I am very healthy and have never had side effects and have recommended protons to six people and four have followed my recommendation and thank me for it.

One person commented above, that “Patients tend to advocate the treatment they got. Physicians overwhelmingly tend to advocate the treatment they give.” The patient part is true for those that chose proton therapy, very few that chose surgery or x-rays would recommend the treatment they received after learning of others who had the proton no-brainer treatment.

"Promise of Proton-Beam Therapy

Interesting article, but you failed to ask the doctors (especially Anthony Zeitman) what procedure they would want if diagnosed with prostate cancer. I doubt it would be surgery or IMRT; rather, I think they would go for proton-beam where the possibility of side effects, like incontinence or ED, is much lower . I think you will find these "occasional" (your word) side effects from proton therapy are far less frequent than with surgery or IMRT. You might be better served discussing ways to deliver the proton therapy cheaper, rather than ways to ration its use. Also, you say "some" men are thrilled with the proton experience - I would say the correct wording would be "almost all" men are thrilled with the proton experience. Also, you mention Bob Marckini, but did not mention his book "You Can Beat Prostate Cancer" - written by a happy, former proton patient without an ax to grind and probably the best book on subject of the prostate cancer experience.

I was retreated with protons when my cancer recurred!

Just a note to add to the overwhelmingly positive comments of those who've already written. I was first treated for prostate cancer using conventional non-conformal photon (x-ray) therapy in 1992, but over time, my PSA began increasing (in about 2004). My oncologist at the University of Florida suggested I wait for the new proton therapy facility in Jacksonville to be completed and to take advantage of this approach, since my PSA was still low and rising only slowly.

I was very lucky to have had this physician, Dr. Robert Zlotecki, looking out for me as I had proton treatments in the fall of 2006 and am extremely pleased with the outcome - very low PSA (0.6) and no significant side effects during or subsequent to the treatments, even though I've had two bouts of radiation altogether!

I am a strong proponent of proton therapy and of the excellent facilities and wonderful people at the Univ. of Florida Proton Therapy Institute in Jacksonville.

Pat Greany

pgreany@comcast.net

proton therapy

I was diagnosed with prostate cancer at age 53, I went through the fear of incontinence and impotence and all the side effects of the surgery...A friend of mine told me to check out Loma Linda University Hospital....I am very thankful.....I am now 60 and very active in every way...When I go for my check-ups the Doctor usually has trouble even finding my prostrate, it is so small now. That is a side benefit of the proton treatments it shrinks your prostrate so you also avoid the other problems men tend to get with older years....Count me as a big supporter of this process, and as far as I am concerned more money should be put into this research so many others can be helped.

Lazarus resurrected

Did the witnesses to the miracle of the resurrection of Lazarus need more data to see that something special was going on? How much data do we need to demonstrate the miracle of the proton beam (Florida, California, or Texas) when we have world-wide testimonials such as seen in the messages above.

I am a prostate cancer survivor who personally experienced this proton beam miracle and who can attest that I would do it again, even if I had to hock my house! There were no return visits, no urinaary leakage, no erectile issues, no rectal problems. On a personal level, it was a no-brainer. Others above have written of their personal data...believe it!

But I did not get this proton beam knowledge from my urologist or family doctor. It came from limited internet exposure and Bob Marckini's book. And now, thanks to your article, others can learn of this procedure. One needs to take responsibility for ones own health, and this means asking lots of questions. A single answer from one urologist is like placing a bet on a lone roulette number. It's all about education and learning of alternatives...and asking the "customer" (patient) and not the salesman (doctor). Thanks for a great article. By the way, these proton centers are now found world-wide.

Low PSA

I forgot to mention in my previous comment about my proton treatment that I had very low PSA, even thought I had a Gleason 7 (4+3). The highest PSA I have ever seen was (0.77), even when the cancer was growing. I did have a nodule that could be clearly felt. However, during a 3 year period my PC was missed because of my low PSA, because my doctor took a wait-and-see approach initially, and then I did because my PSA went down by over 50% to (0.32). So, I keep putting off a biopsy, even though I had a nodule from the beginning. I have not had an explanation as to why my PC doesn't make PSA, other than "it does that some times". Knowing what I know now, I would have had insisted on a biopsy the first time when the DRE confirmed a very tender nodule that my proctologist first noticed. Also, I would still do protons again in a heart beat. However, I would have a long discussion as to why they were putting equal amounts of radiation in both sides, when I only had cancer on the right side of my prostate.

Prostate cancer and protn therapy

This treatmnent is a slam dunk, it works, causing little if any problems. I have been cancer free for 4 years and going about my life as if noything ever happened. And, there is NO pain involved with this treatment.

Proton Therapy

I was diagnosed in June of 07 with prostate cancer. It was localized, caught early, gleason score of 6. My urologist wanted to remove my prostate using the robotic method. I had sent for Bob Markini's book, read it in one night and after receiving an e-mail from Bob the next day, I cancelled the proposed surgery and proceeded with looking into proton therapy in Jacksonville, FL

I completed proton therapy in Oct. 07 with no waiting, no discomfort, no side effects. After my six month check, last week, my PSA was 0.8 and falling. I have talked to several men in our adult community since I've completed this therapy and will continue to highly recommend PROTON therapy to all that are candidates. I also thank Bob Markini for his insight and book about prosate cancer.

Proton Therapy

I was diagnosed with prostate cancer on January 14,2008 (54 years old). Surgery or radiation were the 2 treatments my urologist suggessted. The surgeon scared me (he told me nothing I did not already know, but hearing him tell me scared me!) A friend was about to start Proton Therapy Treatment at Univ of Fla. Proton Therapy Institute, gave me Bob Marchini's book , and I began my research. After reading Bob's book, I called and set up a consult for Therapy.

Today I completed my 9th treatment, with 31 treatments to go. I feel great with no pain not side effects. I have continued my bicycle riding, this week riding 150 miles. I have no doubt that this tratment will rid my body of cancer and I will live a long, healthy life. Please make sure that anyone you know who is diagnosed with Prostate Cancer is told about this treatment.

Prostate Cancer and Proton Therapy

The above comments are indeed "hard acts to follow!" I was diagnosed August 8, 2006 with Gleason 8, PSA 5. The doc, who recommended cryotherapy, got my attention when I asked : "What if I do nothing?" and he replied "You will probably be dead in about two years."

Five more consultations; Cryo, Seeds, and (standard) or IMRT radiation recommended. Each was the specialty of the prescribing doc. Not one mentioned protons.

Found it on my own, travelled 2,600 miles to LLUMC for proton therapy. Now, one year plus after treatment, my PSA is less than 0.02 ng/mL! I have experienced ZERO side effects from the protons, not even the sometimes experienced slight rectal bleeding.

Medicare and BCBS paid for my treatment, but if I was diagnosed today, without insurance, I would not hesitate to even mortgage my home if I had to to pay for proton therapy. There is no way that a cost can be put on the fact that I do not have any form of side effects, even incontinence or even at my age, (74) impotence!

I know that LLUMC is now inundated with applicants, but at least two of the other centers, at Jacksonville Florida and at Bloomington Indiana, are not yet "backed up." If you are diagnosed with PCa, find one of the centers and go for a consult. It just may change the way you will live the rest of your life!

Fuller Jones

Member of BOB 2007

The Promise of Proton-Beam Therapy

I enjoyed your excellent article, thank you.

I enjoyed your excellent article, thank you.

The article, understandably, dealt with many "common" cancers, but how well does this therapy work on rare cancers, like Chordoma, a non-curable type?

Many cases of Clival Chordoma are considered non-operable.

Most doctors never see a case of it in their entire careers.

Patients and their families are told to educate themselves on it.

When we do, and suggest Proton-Beam, Gamma Knife, and Cyber Knife Therapies, we are told ‘the machines are VERY expensive, and not to believe all the hype. Somebody has to pay for those machines. Those fancy web sites are designed to attract customers.’

An already stressful and frustrating experience is made more so.

Proton Therapy

Six years ago my PSA was 3.9 with a Gleason of 6. Because of my age and my father having prostate complications I had a biopsy which proved positive.

My good friend, Bob Marckini, told me what the Dr. would say and he was correct. He mentioned all the treatments including watchful waiting, but not PBT. When I asked him about it he said - oh no - it is too new (11 years).

I told Bob I wasn't worried about ED, but incontinence and wearing a diaper really worried me. I said I couldn't go to LL because of my business.

Fortunately, Bob coached me about Ma General and Dr. Zeitman and came with me and my wife to see the good Dr. (he was great and still is). Well, after having to wait 3 months (scheduling) I had the 8 weeks of treatment (daily except for week-ends) and never missed a day of work. No side effects except becoming tired about midway and when it was time to go the "boy's room" it was really time. Tiredness became a non issue right after my last treatment and needing to go changed to normal gradually over one year.

I'm now age 65 and my PSA is .4 and no side effects. Thank God I had PBT and none of the others and thank you Robert Marckini for your advice, your book and continuing friendship.

Please, if anyone would like to ask me questions about Ma. General in Boston, please drop me an email @ buzzdem@verizon.net

The Only Treatment I Would Ever Willingly Repeat

I could never be able to offer high enough praise for the fantastic people at Loma Linda. Having previously battled testicular cancer the "conventional" way with chemo and radiation, when I was advised by my Urologist that I indeed had prostate cancer, I was very down. I remembered the previous battle and it was not pleasant, in spite of the wonderful Doctors and Nurses. When my urologist congratulated me on having one of the most treatable cancers, I did not think that was comforting at all. One was enough. Of course, the only recommendation was the "snip, snip, all gone" or "you can look into radiology."

I delayed months because of my apprehension of anticipating what was coming. Thank God I delayed. I had a friend who had a friend who had a friend that had been to Loma Linda. I listened, I researched, I found new hope.

When told I was going to LLMC for treatment, the urologist more or less said "don't let the door hit you in the a$$ on the way out."

It is now two years since I had the pleasant experience of a two month vacation, except for the few minutes of inconvenience in the early a.m. It took me longer to drive to LLMC than it did to be treated. Being from Florida, my wife and I got to enjoy the beauty of California as a great side effect. Through today's technology, I did not miss any work, was in full contact with my office and clients - in fact, some never realized I was even out of state.

Again, LLMC has to be one of the greatest institutions in the Medical world - well, maybe there is a little bias there, but the entire staff is so helpful, courteous, professional and caring.

Oh, yes - did I mention, 2 years, psa below 0.0 and Primary Care Doctor is amazed at the solidity and size of my prostate. Thank you Loma Linda and all of your fine staff.

"It's True What They Say"

I completed treatment number 20 early this morning at Loma Linda. No real side effects to my treatment. Additionally, I am a recovering Cardio patient that was halfway thru my Cardio Rehab before coming here and again Loma Linda came to the rescue. I am completing the remaining 18 workout sessions in their Cardio Rehab Center. Loma Linda is an amazing place and I feel really special just being one of the very belessed individuals to get to be here. One in 6,000, what can we do to make it more available to more patients?

Thank you for an excellent article and the opportunity to comment.

Gene,

Active Member of BOB

My 2 cents worth with Lung Cancer

MD Anderson in Houston Texas stepped up to the plate and treated me with 7 weeks of PRT on my large lung tumor. Diagnosed as a 'technical" Stage IIIB, I learned due to the size of the tumor (5.6cm), the location of the tumor as well as the nearby cancerous lymph nodes, I was not a candidate for conventional surgery or even IMRT due to toxicity issues; in other words, IMRT would result in too much damage to other areas such as my esophagus and such treatment may even have ended my life. The entire "tumor field" was just too large. When I was approved for their proton radiation, I felt like I had won the lotto!

Dr. James Cox directed my treatment plan from day one...and even with concurrent weekly doses of chemotherapy, I was able to live a "better" than normal life during and after treatment. I had energy during treatment and was able to eat normally and walk briskly about 2 miles every day. This continued until the very end of treatment, where I was slowed down for just a few weeks, my pain easily treated with medication. By the end of my 3rd week after treatment completed, I was again walking one mile a day...now 5 weeks after treatment, I am easily walking at least 4 miles every day with NO pain, eating normally and experiencing an excellent quality of life, whereas otherwise I might have been dealing with feeding tubes, stomach bags, esophagal stints or worse.

I cannot say enough about PRT and the proton therapy I received from Dr. Cox and his top-notch staff at MD Anderson Proton Center. Thank you all!

2 years after Proton Treatment

I was diagnosed by Kaiser hospital in Garden Grove Ca. They told me I had a PSA # of 9.90. I insisted on a retest which was done one month later. That test result was a PSA # of 10.30. I dont remember the Gleason, but it was low and I was told that the cancer had not spread out of the prostate area. Kaiser informed me that I could live out my " life" without too much problem, and if necessary they could remove my prostate . I accepted this as my way of life, untill one day in Jan. 05 when I saw a news clip on channel 7 TV in L.A. LLUMC was announcing the completion of the treatment of the 25,000th patient with Protons for Prostate cancer. (total of all treatment centers) Being I lived within 60 miles of the University, although I never visited before, I drove there the next day. I could not beleive how carefully they explained everything to me and answered all my questions. Immediatly after leaving the hospital I went to my HMO Kaiser and demanded that they give me my Pathology slides and other records. They would not co-operate and readily told me in writing that LLUMC's treatments were "EXPERIMENTAL". I ignored their threats and finally got my records and slides and took them to LLUMC. I started my 44 treatments in Jan. 2005. In April 05 my PSA test (done by Kaiser ) result was 3.26. The next test requested by my Kaiser doctor , resulted in a PSA of1.66 in June 2005. My Kaiser Dr. was very surprised but otherwise would not comment on the results to me. Since then in 2006 these numbers kept dropping . My latest report, done at my request at Loma Linda (a cost of about $75) is a PSA of 0.88. Imagine, if you can, my exilleration, on hearing these results as of March 2008. I was an auto mechanic, now 77 and I do not have a lot of retirement money, but the co-pay of about $6,000 was the best money I ever spent. I'm praying for continued "good numbers", Being I have the good fortune to live so close to the hospital, I go as often as I can to the "Support" group meetings on Wednesday nights to encourage my fellow "BOB" members.

2 years after Proton Treatment

I was diagnosed by Kaiser hospital in Garden Grove Ca. They told me I had a PSA # of 9.90. I insisted on a retest which was done one month later. That test result was a PSA # of 10.30. I dont remember the Gleason, but it was low and I was told that the cancer had not spread out of the prostate area. Kaiser informed me that I could live out my " life" without too much problem, and if necessary they could remove my prostate . I accepted this as my way of life, untill one day in Jan. 05 when I saw a news clip on channel 7 TV in L.A. LLUMC was announcing the completion of the treatment of the 25,000th patient with Protons for Prostate cancer. (total of all treatment centers) Being I lived within 60 miles of the University, although I never visited before, I drove there the next day. I could not beleive how carefully they explained everything to me and answered all my questions. Immediatly after leaving the hospital I went to my HMO Kaiser and demanded that they give me my Pathology slides and other records. They would not co-operate and readily told me in writing that LLUMC's treatments were "EXPERIMENTAL". I ignored their threats and finally got my records and slides and took them to LLUMC. I started my 44 treatments in Jan. 2005. In April 05 my PSA test (done by Kaiser ) result was 3.26. The next test requested by my Kaiser doctor , resulted in a PSA of1.66 in June 2005. My Kaiser Dr. was very surprised but otherwise would not comment on the results to me. Since then in 2006 these numbers kept dropping . My latest report, done at my request at Loma Linda (a cost of about $75) is a PSA of 0.88. Imagine, if you can, my exilleration, on hearing these results as of March 2008. I was an auto mechanic, now 77 and I do not have a lot of retirement money, but the co-pay of about $6,000 was the best money I ever spent. I'm praying for continued "good numbers", Being I have the good fortune to live so close to the hospital, I go as often as I can to the "Support" group meetings on Wednesday nights to encourage my fellow "BOB" members.

2 years after Proton Treatment

I was diagnosed by Kaiser hospital in Garden Grove Ca. They told me I had a PSA # of 9.90. I insisted on a retest which was done one month later. That test result was a PSA # of 10.30. I dont remember the Gleason, but it was low and I was told that the cancer had not spread out of the prostate area. Kaiser informed me that I could live out my " life" without too much problem, and if necessary they could remove my prostate . I accepted this as my way of life, untill one day in Jan. 05 when I saw a news clip on channel 7 TV in L.A. LLUMC was announcing the completion of the treatment of the 25,000th patient with Protons for Prostate cancer. (total of all treatment centers) Being I lived within 60 miles of the University, although I never visited before, I drove there the next day. I could not beleive how carefully they explained everything to me and answered all my questions. Immediatly after leaving the hospital I went to my HMO Kaiser and demanded that they give me my Pathology slides and other records. They would not co-operate and readily told me in writing that LLUMC's treatments were "EXPERIMENTAL". I ignored their threats and finally got my records and slides and took them to LLUMC. I started my 44 treatments in Jan. 2005. In April 05 my PSA test (done by Kaiser ) result was 3.26. The next test requested by my Kaiser doctor , resulted in a PSA of1.66 in June 2005. My Kaiser Dr. was very surprised but otherwise would not comment on the results to me. Since then in 2006 these numbers kept dropping . My latest report, done at my request at Loma Linda (a cost of about $75) is a PSA of 0.88. Imagine, if you can, my exilleration, on hearing these results as of March 2008. I was an auto mechanic, now 77 and I do not have a lot of retirement money, but the co-pay of about $6,000 was the best money I ever spent. I'm praying for continued "good numbers", Being I have the good fortune to live so close to the hospital, I go as often as I can to the "Support" group meetings on Wednesday nights to encourage my fellow "BOB" members.

trtmnt of GIII B, STG III endometrial cancer

If anyone has or is being treated with proton or photon beam therapy for any type of endometrial /uterine cancer please contact me at ajmiriadina@yahoo.com

I will also appreciate if any medical personnel involved with or knowledgeable about above therapy will contact me please, with relevant centers' info or doctors' contact info.

I have been treated with surgery, radiation and chemotherapy and currently waiting for PET/CT scan to see if tumor has spread. The tumor cell type is high grade and apparently not as sensitive to conventional treatment.

I live in Rhode Island, but will happily travel to any center that will accept me.

Thank you all and God bless you in your search for cure.

AdinaAjmiri